- A friend's donation
- A Gift of Love
- A long road with a happy ending
- A transplant made me a better person
- An 11th hour gift of life
- A long wait
- Australians please become organ donors
- A birthday wish comes true
- A very special Christmas
- A child on a journey
- A Rainbow Poem
- A Special Gift
- A liver recipient July 1988
- A New Kidney & New Life
- A child's donation
- An Unknown Angel
- Andrew's New Heart
- A chance for better sight
- Andreas story
- A New Start To Life
- Aarons Story
- Aaron's Gifts
- A big thank you from the bottom of my new heart
- A life renewed
- Alison's story
- A good luck story
- A gift from a stranger
- A breath of fresh air
- A chance diagnosis led to a transplant
- Ali's gift
- Any better and I would be a super hero
- A gift to treasure
- A life too short
- A mother's story
- A new liver, a new life
- A new beginning
- A second life through the gift of sight
- Aileen’s story
- An honour and a privilege
- Another chapter of life given
- An act of undying love
- A rainbow poem
- ANGLs in Kokoda
- Amanda's story
- A better man
- Appreciate life
- A dream come true
- Angus’s story
- A precious gift
- A second chance
- A special son and brother. Forever young.
- Angels of humanity
- Adam's liver transplant
- Delivered by an angel
- Doug's journey
- Donor a life-saver
- Dialysis Dreaming
- Do not go gentle into that goodnight
- DonateLife Week
- Damian's Gift of Life
- Donation is a valuable conversation to have
- Double or nothing (Joel)
- Danielle’s Story
- Double or nothing (Kerry)
- Demi’s story
- Donor wishes
- Danny and Edna A mothers gift to her son
- Dung’s story
- David (Dave)
- Mitchell's dream saved lives
- My transplant journey
- My left kidney
- My lucky day
- Mr Darcy's generous act of love
- My Valentine's Day gift
- My transplant story
- My kidney transplant story
- My transplant journey
- My sister
- My experience with renal failure
- Mum’s long struggle for breath
- My husband's story
- My son
- My donor family heroes
- My donor kidney and me
- My family (Cheryl)
- My life is whole again
- My brother
- My corneal transplant
- My husband's story
- Michael's story
- Memorial to Douglass
- My experience with renal failure
- My Hunt
- My transplant after 10 years wait!
- Mitchell Taller, smarter, funnier
- My second chance in life
- My mum gave sight to two people
- My Dad, Mark
- My little brother, my big hero
- My second chance
- Our pair of hearts
- One good turn deserves another
- Out of the blue
- One man and his bike!
- Organ gifts save lives
- One man did make a difference
- Oscar's choice
- One Chance. One Life.
- Our deepest gratitude
- Our kidney transplant
- Our hero
- Once only second chance
- Our angel Lucas
- Our Linda – our sister
- Our neighbours extraordinary gift
- Ongoing generations
- She lived her life to the fullest
- Silent disease with a donation relief
- Shining stars
- Simone has received and now she gives
- Seeing is Believing
- Something good out of something tragic
- Someone was looking after me
- Steph's story
- Shaun's story
- Scott's story
- Special gift-Jessica
- Stephania's story
- Taylor's Gift
- The best of human spirit
- Thank you (Brad)
- Tinni's Story
- The miracle of transplant
- Thirty three years ago life was different
- The Gift of Life Two decades on
- The Value of thank you
- The Valve that saved my Baby's Life
- The day our family changed forever
- Thank you (Gary)
- Thank you (Jeannie)
- The heart of it all
- The Gift
- The joy of a transplant
- The benefit of tissue donation
- The best gift
- Transplant (Lynda)
- Twice as lucky
- Thank you for the greatest gift
- Thank you (christopher)
- The day that changed our lives forever!
- The best thing you’ll ever do
- The ultimate gift -Kate
- Two lives were saved
- The little black duck
- The life I waited for
- Two chances at life
- The gift-Stephen
- The eyes have it
- That magic moment
- Turn a negative into a positive
- Twanny's gift of life after 40 years
- Thank you to all donors for your precious gift of life
- Thank you for giving me my life back
- To give and to take. To donate and to receive
- Thank you-Adam
- Thank you to my unknown donor
- The anniversary
- Turia's story
- The three gifts
Foreword to the DonateLife Book of Life by Her Excellency Ms Quentin Bryce, AC Governor-General of the Commonwealth of Australia
As the inaugural DonateLife Ambassador, I have been privileged to observe the impressive leadership of the DonateLife team and agency network in managing organ and tissue donations throughout the country, and in educating Australians about the issues that are central to our decisions to give life.
Inspired by the work of these outstanding professionals, the DonateLife Book of Life is a heartfelt appeal to all Australians urging us to find out the facts about organ and tissue donation, to make well informed decisions, and to discuss those decisions with the people close to us.
Here is a collection of stories from brave and thoughtful Australians whose lives have been touched and transformed by a donor’s life-affirming decision. These honest and grateful accounts pay tribute to the generosity of lives tragically and abruptly ended: the ultimate act of giving life to another as one’s own life passes.
The DonateLife Book of Life starts its journey around Australia in DonateLife Week, Sunday 20 to Sunday 27 February 2011, a campaign led by the Australian Government’s Organ and Tissue Authority to raise donation awareness among Australians and to increase our donation rates.
It is my hope in 2011 that, as these stories are shared across the nation, many more of us will be moved to think, talk and act on a decision that can help bring life and healing to thousands of Australian lives.
This is a decision for all of us and each of us. We share life and we share a capacity to give life. Our personal experiences of living and giving are most powerfully told through our stories. This book is our carriage and our conduit for ensuring that our decisions bring the greatest good to the greatest number in the Australian community
We are forever indebted to those Australians who have chosen to give life. They have made their mark in the most profound ways and the DonateLife Book of Life bears their courageous stamp.
May these pages travel far and deep across our generous land.
Alex was just 19 years old when he died, as a result of complications with his Type 1 diabetes. He was living in Adelaide, having the time of his life, pursuing his dreams by studying to become an aeronautical engineer. His death was, for us, completely out of the blue. For someone who had been so alive and with so much living left to do, to be suddenly gone was, and still is, just impossible to believe.
Alex was a bright and outgoing person, with a huge sense of humour, who always saw the positives in every situation and was extremely loyal to his friends and family. Alex loved his sport, with a passion for basketball. The adrenalin fuelled way that he played on the court, was much like the way he lived his whole life.
Just two weeks before he died, while home from university for the holidays, Alex and his mum happened to hear a story about organ donation on the radio. When asked if he would want to donate his organs he replied, in true Alex fashion, ‘Of course I would, but they wouldn't want my useless pancreas.'
This chance conversation meant that when the topic of organ donation was broached to us at the hospital, there was no decision for us to make. We could not believe the complete sense of joy that overcame us when we received news of the successful transplantation of four of Alex's organs. Thinking of the four lives saved, and four families who would not have to lose someone they love brought great comfort to us at such a horrible time.
Hearing updates and receiving cards from the recipients of Alex's organs still brightens our days, and we are reminded that while Alex may be gone, the gifts he was able to give have truly made such a difference to other people's lives.
She lived her life to the fullest and wished to give something back
Melody worked as a Photo-media Assistant Curator at the National Gallery of Australia and was on the threshold of a promising career when her life was tragically cut short. She had always lived life to the full and had a passionate interest in art history which was her honours thesis. She was also a practitioner in the fields of pottery, music, writing mixed media, jewellery making and artistic photography.
David and Robyn's daughter died as a result of a motor vehicle accident near Boorowa NSW as she was returning home to Cowra on Christmas Eve.
The wishes of Melody were followed once we were informed of her registration to be an organ donor. Melody wished to give back to other people in their time of need and her gift of life was able to save the lives of three people. David felt the overwhelming need to do something to both honour his daughter and start conversations about organ donor awareness. Melody's gift inspired his motorcycle bike ride which he hopes will inform the public of important issues relating to organ and tissue transplantation in Australia.
The Organ Donation Awareness Ride (ODAR) has travelled about 5000km through New South Wales, Victoria and the Australian Capital Territory.
As I rode through cities, country centres and small rural townships, sometimes alone, sometimes with others, I felt it was important to stop as often as possible to talk to people about organ donation and its implications from the point of view of a father who has had that experience. To me it was vital to impress on the people I met about the importance of ensuring their families understand their decision and respect their wish to be organ donors should they be placed in the position I was.
By Lea and Peter
Taylor was just 15 months old when she became a donor. Her gifts have saved the lives of two baby boys who now not only have the gift of life, but also the gift of time and a chance to grow up with their loving families.
Taylor was a very independent, outgoing and lively child. Every day was an adventure and another excuse to laugh, smile and play. She had total confidence that she was the centre of her family and greatly adored by everyone around her, but was also a great sharer. When she died it seemed a very important and logical choice for us, as her parents to decide to offer her organs for donation. We know with total certainty that she would have wanted to share anything she could with others and would be very proud of what she has been able to contribute after she left us.
We will probably never know Taylor’s recipients nor get the chance to meet them or tell them about Taylor, but this doesn’t diminish the importance of the gifts she gave or the rightness of the decision to authorise her donation.
Being a donor is more than the gift the donor gives – it’s also about the community you join when you are a donor family, the joy you get from knowing someone else is healthy because of her, and the knowledge of how very proud she would be of the special gift she gave to these complete strangers, with not a thought of receiving anything in return. It’s a great comfort to know that a little piece of our angel lives on in the precious children of other families.
A friend's donation
At 69 years old, I was diagnosed with renal failure and subsequently finished up on dialysis.This completely changed my lifestyle, as being on dialysis three times a week for three hourly sessions restricted my eating and drinking habits.
Coming off the dialysis machine I'd be terribly tired and not fit for anything, then the next day good as gold, then back on dialysis. Being too old to get on the transplant list the future looked pretty dim. After two and a half years on dialysis, a good friend of mine said he was going to give me a kidney, my mouth just dropped open. What a gift.
After blood, tissue and physical tests, the team at the Princess Alexandra Hospital decided to proceed with the transplant. I was 72 and my donor 74 years old. I think we were the oldest non related [kidney transplant] to be done in Australia.
I celebrate 10 years of being back to a normal lifestyle this year. There is a downside - I am on rejection drugs for the rest of my life. A small price to pay!
I cannot forget the excellent treatment and care I received from the staff at Toowoomba Renal Unit.
When I grow up... I'd like to be well
Hello! My name is Sophie, although everyone calls me Sissy. I am two and a half years old, and my favourite things are Sponge Bob Square Pants, going to the park, cuddles with my mummy and rides from my daddy.
I am the boss of my two brothers Ryan (four and a half) and my twin brother Toby. I love playing with them, but I get tired very easily. My liver is broken and doesn’t work very well because I was born with Biliary Atresia, a rare disease of the liver which usually leads to liver failure and the need for a liver transplant.
I have been waiting for about three months now for a shiny new liver. Mummy says that someone who doesn’t need theirs anymore will donate it to me - I thought that was pretty special!
I would love nothing more than to be able to dance like a ballerina and play blocks and cars with my brothers without getting tired. I have only recently started walking as my bones are just not strong - and in the process I have broken three bones. That hurt. Mum says I am a good girl because I take all my 16 medications each day so well. I’ve been doing it since I was a baby so it’s normal to me!
I have lots of friends at the hospital, as I spend lots of time there. Blood tests are not my favourite thing, but mummy or daddy are always there holding my hand. Did I tell you about tubey? I wear a tube that goes into my tummy and over night I am connected to a pump and get lots of good nutrients while I sleep! Everyone wants me nice and strong for when the time comes to get that shiny new liver. I wonder when that will be.
Annette - ACT's first organ and tissue donor.
Annette suffered a cerebral haemorrhage three weeks before her 12th birthday. It was her wish that her kidneys be donated if anything ever happened to her.
Annette never knew that she was Canberra’s first organ donor and that there was no legislation in place to retrieve organs in the ACT. It was Annette’s wish that started authorities writing and putting legislation in place for the ACT and NSW.
It is hard to capture the true character of Annette in writing, but it was obvious to all those who knew her that she was a very sincere, genuine, and a very affectionate person who had an unusual sensitivity towards the needs of others.
Annette loved her family and showed it in many ways...cooking, doing craft or looking after her two cats.
Holy Spirit, enlighten and protect me from evil and guide me to heaven where we will rest in peace, Amen.(One of Annette’s last offerings).
The best of human spirit
Michael died when he was 32 and his organs helped six people with life saving transplants.
Michael was very healthy and active in the Surf Lifesaving movement and a member of the Palm Beach Surf Club since he left school. He loved to surf.
He enjoyed country music writing songs and he played in a band that was gaining recognition, winning a Tiara Country Music Award.
At the time of his death Michael was nominated for a Golden Guitar Award. He made frequent visits to Tamworth and one night he crashed into a tree on his way to Tamworth to visit his girlfriend before giving a performance nearby.
We were told that with the head injuries he sustained he wasn’t going to make it. We had discussed organ donation as a family and knew Michael wanted to be an organ donor.
Michael’s loving and generous spirit spread with the generous legacy of organ donation helped save and transform the lives of six people.
Mitchell's dream saved lives
Mitchell’s wish was to be a paramedic. When his life was cut tragically short late last year, he lost the opportunity to have his dream job, but he still saved the lives of four people.
His gift of organ donation was the ultimate way of helping people.
He was a normal teenager that loved to do normal things. He was kind and gentle. He accepted everyone and never had a bad word to say about anyone.
All he cared about was family, friends and lending people a hand. He loved to ride his motorbike with his best mate Luke and he was an asset to his football club.
Mitchell grew up quickly when his Dad died, he was only 13. We were a close family and he became the ‘man’ of the household, even though he was the youngest.
His sisters loved him dearly and so did his little nephews, three and a half year old Harrison and four week old Oliver. We all idolised him. He was more than a ‘little’ brother, he was a best mate.
Mitchell died when his ute ran off the road during a storm and hit a tree. He was only 18 years old. He hardly had a mark on him when my daughters and I saw him in the hospital.
Nothing prepares you for the news that there is no hope. Then you are asked about organ donation and your brain has to comprehend the question.
The decision that day to donate Mitchell’s organs was extremely hard because we were in shock and our minds struggled to process the information. But we all knew in our hearts what Mitchell would have wanted.
Something can happen in a split second. You never ever think this nightmare could happen to you. You need to talk about it with your family, let them know what you want to do, regardless of your age.
Mitchell’s heart, lungs, liver, left and right kidney and pancreas were all donated. No parent should ever have to lose a child but our family’s decision gives me comfort every day knowing that Mitchell’s organs saved the lives of others, I think about them every day and hope they are okay.
I am humbled to know other people have been touched by the story of Mitchell’s generosity and they have now discussed organ donation and registered to be donors.
Brad and Lorae
This is a special ‘Thank you’. My name is Brad I am 47 years old and when I was 6 years old I was diagnosed with Type 1 diabetes.
I had a normal life with a loving family and then my wife Lorae and I went to live in Batemans Bay on the south coast of NSW.
In the mid 1990s the effects of Type 1 Diabetes started affecting my health. I was diagnosed as legally blind and a month later commenced dialysis.
In 2001 I had my right big toe amputated. Then my left big toe was amputated and following a slight stroke my left leg was amputated at Canberra Hospital.
One day after my regular dialysis treatment I had a phone call. There was a Kidney-Pancreas waiting for me at Westmead Hospital Sydney, donated by a family who knew the wishes of their loved one.
After 32 days at Westmead Hospital I returned home return to a normal life and I have been able to watch my family grow. I will never ever forget the gift that saved my life from a family I shall never meet, but love and respect as my own.
However, due to the damage caused by Type 1 diabetes my right foot and then leg was amputated below knee.
In August 2007 we established the Eurobodalla Renal Support Group and Organ Donor Awareness and Education. We are dedicated to providing community awareness about Kidney health, Organ Donation and Transplantation on the NSW South East. We also host community events and meet regularly at ‘get-together’ lunches.
Without strong support and love from my family and a wonderful and generous donor family somewhere in Australia who had the very important talk about organ donation, I would not be alive today. There is just one thing left to say…..’Thank you’.
Jessica, Member of Transplant Australia
My name is Jessica and I’m 18 years old. I didn’t think I’d ever be able to say that, because since the age of 13 I’d been getting progressively worse with cystic fibrosis. I was just a child and facing the daunting reality that I could die, without yet having lived. I was devastated. I felt I had so much to give, but my body was physically stopping me from giving it. I was getting more and more sick, weak and debilitated. I couldn’t walk, talk, or even breathe without help.
But after years of being sick, missing out and then so close to death, I received a double lung transplant. It’s a new chance of life that I’ve been committed to making the most of. I graduated from Year 12, finished a college course with HDs, am doing a law/journalism double degree and French at university, met my journalism hero Ray Martin, had a makeover with my mum on television, won 16 medals in the Australian Transplant Games, and met the inspiring, amazing Prime Minister Julia Gillard.
But it’s little things that the average person takes for granted that I am also grateful for. Being able to do everyday things without it being a tiring and painful effort and not being constantly dependant on others.
I have my life back now and the difference has been incredible. All the dreams and aspirations I once had, became possible again. Everything now is a new opportunity to seize.
I wouldn’t have got through this ordeal without my family, but it would have been impossible without a donor. I treat this extraordinary gift of life with the highest respect and appreciation. I encourage all Australians to donate their organs to save lives—it could be the most amazing thing you could ever do for someone else.
Expressions of me and my family's love and everlasting thanks.
A Gift of Love - Dedicated to my donor and their family
I see my wife, my daughter, my son
The light that brings the new day on
These precious things from God above
For those are but the Gifts of Love.
These precious things we hold so dear.
Accepted so year after year
Are but on loan from God above
Though everlasting, the Gift of Love.
When our time on earth has come
Happily we’ll return back Home
With God’s approval from above
That we have shared a Gift of Love.
We share your grief, your loss, your pain
But know the love and pride you gain
His love inspired from God above
With compassion given, his Gift of Love.
For those of us who share that gift
Remember ere our thoughts to lift
To family and their loved above
With heartfelt thanks for their Gift of Love.
By Elena and Bill (parents)
Claude’s life journey began on 30th January, 1968. He lived and went to school in Aitkenvale, experiencing the trials of early childhood and developed the qualities which endeared him to many people, empathy for others and generosity of spirit.
In sport he was always a team player, playing junior rugby league and soccer. He held the junior javelin record at Town High for a number of years. As an adult he played touch football, and loved canoeing and bushwalking on Hinchinbrook Island.
‘I had a great adrenalin rush today’ was his comment when he landed with only his auxiliary parachute. The family moved to Oak Valley where Claude learned to appreciate the simple meaningful things in life: family, the land and the bush.
From 1988 he worked at C.B. Marine and Patrick Stevedoring. He was an active unionist, job delegate and crane driver.
When diagnosed with an inoperable brain tumour, his working career came to an end. With former partner Judy, a son Harlee was born. After their separation, Harlee became the main focus of his life. He adored doing things for and with his son; Tai Kwon Do, music, drama, sports and became a Scout leader. He loved watching Harlee grow and was a proud, loving and caring father. His partner Frances described him as kind and empathetic and showed nothing but respect for her and her children, the centre of her life, as Harlee was the centre of his.
Claude’s ultimate gift was to donate his organs, giving hope, happiness and better health to the recipients. He was a happy person who didn’t have the best of everything but made the best of everything he had. Claude was always a deep thinker, a compassionate person, a loving father, son, brother, partner and friend. Our lives are richer for having shared his short life. Rest in Peace.
Jayne and Nicole
By Jayne and Nicole
Our pair of hearts
Five years ago our daughters Jayne then 9 and Nicole 11 received heart transplants within months of each other. Nicole had been diagnosed with dilated cardiomyopathy in 2000 and had been on treatment ever since. But Jayne became ill very suddenly towards the end of 2005 and was air lifted to the Royal Children’s Hospital in Melbourne. We were told that she too had dilated cardiomyopathy and needed an urgent heart transplant to survive.
Within 11 days Jayne had a heart transplant but her recovery was slow and she needed intense rehabilitation for many weeks. We moved the whole family from Tasmania and set up ‘home’ in Brunswick, where our other 3 daughters attended school.
After 3 months Jayne was allowed home to Brunswick. Unfortunately, Nicole’s health then deteriorated and within 3 months she had a Ventricular Assist Device fitted while she waited for a heart transplant. About 6 months after Jayne’s operation, Nicole received her new heart and was discharged from hospital within a week. After 11 months we finally returned home, forever grateful for the wonderful care we received at the Royal Children’s Hospital.
Both Jayne and Nicole now have a normal life, like any other teenagers. They have to take regular medication, but they make the most of every day. Nicole hopes to become either a hairdresser or cook and Jayne is attending high school. They have participated in 3 Australian Transplant Games (2006, 2008 and 2010) and the World Transplant Games on the Gold Coast in 2009, where Nicole won a silver medal in swimming.
If it wasn’t for some remarkable people who decided to donate their loved one’s organs, we would have lost both our daughters. Our whole family feels that we are so very lucky and we are extremely grateful for those special gifts.
Neville would have given his last cent - instead he gave life to five Australians
At 18 years of age Neville was a promising student in digital media who also enjoyed dancing and drama. That same year he was diagnosed with a brain tumour close to his brain stem. Neville had a biopsy and recovered well but his prognosis was terminal because the tumour was inoperable as it was quite deep.
He incurred some light swelling to the brain but while in hospital he ‘crashed’ and became unconscious. More surgery followed as his brain continued to swell. Following waiting, monitoring and tests, I recall my mother saying ‘What do we need to do about organ donation?’. I knew he had filled out forms to register as a donor but more than this I knew the way Neville lived his life was that he would give anyone his last cent if it could help them. I knew he would want to help others by donating his organs.
He did help people. Five other Australian lives were saved through the generosity of Neville’s organ donation—his lungs, kidney and liver. His liver was able to be split so that it saved two lives.
I have had discussions with my family and they all know my wish to donate.
The Theatrix of Performing Arts at Unanderra now has a perpetual trophy to honour Neville but his wonderful giving spirit lives on through organ donation.
Vincenzo and Christine
Gift of life a miracle
My father, Vincenzo, celebrates two birthdays. One the date he was born. The other is the day he received a life-saving liver transplant.
Thanks to the generosity of an organ donor, Dad received the greatest of gifts in the nick of time.
He had spent the previous week in a coma; his failing liver had shut down and was unable to filter his blood. His fight for life had become a race against time.
He had been on the liver transplant waiting list for almost three years, but finally, with death knocking at the door, a saviour family stepped in to give Dad another chance.
They don’t know what their decision has meant to him and his family. The transplant has allowed him to lead a normal life.
He tends to his garden and shares its fruits with the family. He savours the love of his grandchildren. He’s been overseas to catch up with the brothers and sisters he thought he’d never see again.
To this day, our happiness is tinged with sadness as we try to comprehend the pain they suffered when making their decision. I hope my father’s recovery offers some comfort. He prays every night for the donor and their family who came into his life at the right time.
Sixteen years on and almost to the day, I walked those same corridors where I had been with my dad years earlier.
This time, I watched my sister-in-law Christine being wheeled into the theatre where doctors would retrieve her organs.
Christine had collapsed at her home two days earlier after suffering a brain haemorrhage. She was a registered organ donor and her children Christopher and Kylie wanted her wish to be fulfilled.
The decision eloquently summed her up. Christine was a peoples' person. She was generous to the point where she preferred to go without, lest a relative or friend was in need.
So Christine wouldn’t have thought twice about giving others a second chance at life. Her choice saved the lives of three people and gave sight to two others.
Most of us think we’ll never need the organs of another person to survive. Some of us don’t want to donate our organs, but put yourself in my Dad’s shoes. If not for organ donation, they’d be the shoes of a dead man.
Tom with his new son, Isaac.
A long road with a happy ending
I don’t remember a time when I wasn’t sick. Being born with cystic fibrosis meant managing a long-term illness became a way of life.
I had spent my whole life in and out of hospital. At 25 I was so ill I had to stop working and my life became two weeks in hospital, one week out.
All the things people take for granted I couldn’t do. You lose your independence, your self esteem and the things that make all the difference.
For the next seven years my life was completely on hold. I struggled with everyday tasks and used to look forward to making it to the end of the day.
I went on the transplant list in 2000. Waiting for a transplant is a strange feeling. Not knowing what will happen, what the outcome will be, but hoping things will be different.
While I was waiting, my lungs started bleeding as a result of my condition and my lung capacity dropped to only 10 per cent.
My wife, Leila, can still remember walking into my room as I was holding a one litre bowl half full of blood and there was another full one on the shelf next to me.
I was airlifted to the Alfred Hospital where I underwent a procedure to try and plug the vessel which was bleeding. When I returned home, the doctors couldn’t believe I had survived. Then my transplant arrived.
After the transplant, I almost had to learn to breathe again. I started crying because of the thoughts and feelings going through my head—the amazement, you just can’t explain it.
Every year I celebrate my transplant. I am so grateful to be alive and 13 weeks ago I became the proud father of a baby boy. I never thought I’d see the day I would get married or have a child. I never thought that would happen to me.
My illness has been a roller coaster ride and there have been some hiccups after transplant, but the positives have far outweighed the negatives.
I am now back at work, have learnt to play the guitar and have been able to travel with Leila.
You can’t put a price on what you’ve been given. I think about the donor everyday.
Silent disease with a donation relief
Kidney disease is a silent disease. Being under the care of a GP that treated me for high blood pressure and suffering headaches, I sought the second opinion of another GP due to overwhelming fatigue and the need for more sleep.
With blood, urine and blood pressure tests he found a possible kidney problem. I was sent to a Nephrologist who arranged for a biopsy of the kidneys. On my return to the ‘Doc’ his word were ‘well old man you’re too far gone. You will be on dialysis within six months.’ I proved him wrong - it was just three months!
In 1994 I started dialysis at a renal unit in Hobart, where I was supported by great nursing staff and caring people. I was told by the kidney surgeons visiting from Victoria that I would be an ideal person for a kidney transplant. I had been asked if someone in my family could be a kidney donor, however being adopted I have no family background or people to turn to.
So I went on the waiting list for a kidney donation from someone deceased. I was told the waiting list was at that time four to five years. I dialyzed and waited for seven and a quarter years! I had a bag packed ready for the trip to Melbourne under my bed for five years. Finally the call came on a Saturday in January to head off to Melbourne with my Dad for the donation. The plane broke down in Melbourne so we were late getting there.
The operation took around two hours. On waking the next day the bed next to me was occupied by a man also from Tasmania who received a transplant on the same day as mine.
My thoughts are always with that donor and their family. In the end it was the family that had to make the final decision to abide by the wishes of their next of kin to become an organ donor and improve or save many people’s lives!
It’s now many years since that day and I’m still living a healthy life and working thanks to an organ donor.
Mary and husband Kerry with grandchildren
Islets of dreams
My journey towards islet transplantation began over 35 years ago after being diagnosed with Type 1 diabetes. After years of five insulin injections daily my condition deteriorated and I began to lose ‘hypo’ awareness.
I lived and worked as a classroom teacher with the constant fear of a major ‘hypo’. There have been many times when my husband, Kerry, needed to inject me with glucogen to raise my blood sugar levels as I was either unconscious or unable to treat myself for a severe ‘hypo’. I lost my self confidence and was afraid to undertake everyday chores.
Five years ago my doctor advised me to go on the insulin pump. Hypo awareness returned but this was short lived. During a visit to my endocrinologist he spoke of a new research program, islet transplantation, and thought I may be a good candidate for the program. (Islets are the cells in your pancreas which produce insulin.)
For two and a half years I underwent extensive tests and my declining confidence and frequent ‘hypos’ led me to retire from teaching.
In 2010 I received the call for South Australia’s first islet transplant.
My life post transplant has changed in many ways, I can now confidently say ‘I have a life.’ Within days and weeks of the operation my blood sugars were within the normal range, hypo awareness had returned and my pump had been removed. Blood sugars were controlled by one injection of insulin per day.
Six months after the first transplant I underwent the second. Two months later I became free of daily insulin injections. My confidence has returned and I am back teaching—’hypo free’.
My new life would not have been possible without the unselfish generosity of my donors and their families. They made a heart wrenching decision to give a perfect stranger a chance of life only dreamed about and because of their generosity the dream has come true for myself and my family.
Daniel was diagnosed when he was eight weeks old, around November 1995. He was very sick as an infant. We had all of our treatment at the Mater Children’s Hospital Brisbane. That was our home for the next few months/years on and off.
Daniel was eventually diagnosed with ‘Finnish Type’ Congenital Nephrotic Syndrome. This was very rare. Daniel needed albumin infusions until he was around two years old. He then went on medication to control his condition.
He went well with this for a number of years, until his kidney function started to deteriorate. In the meantime I met this wonderful man by the name of Phil (Daniel’s step-dad). He supported us through everything, even staying with Daniel overnight on many occasions. We eventually all became one family.
Daniel continued to go well until around May 2001, it was then his doctor decided it was time to do a transplant. I was worked up to donate a kidney for Daniel. However when the last test was completed theurologist found there was a problem with one of my kidneys.
I could have donated but it would have meant a higher risk of rejection for Daniel. Phil said ‘no, we can’t have that’ and put his hand up to be the donor. He had to go through a number of tests and psych meetings before he was allowed to donate. Thanking all the Gods above he was the same blood type as Daniel.
So the big day finally arrived. Phil was in the Adults hospital and Daniel was in the Children’s. I had an anxious wait having both of them in theatre. Everything went very well. The kidney started working instantly. I am blessed to have met such a wonderful man in Phil to have done this for us. I will be forever grateful to him.
Daniel is now a healthy fourteen year old boy who is enjoying school, sport and being a teenager. Since the transplant he has been very healthy with no medical problems to date. This coming July will be nine years since the transplant.
Daniel loves Soccer and Cricket.
Karen, Member of Transplant Australia
A transplant made me a better person
The most important thing I have learned is that people who make the decision to donate organs are the kindest and most generous people. There are no words that can adequately express the gratitude felt by recipients and their families for this most generous gift.
Living with chronic disease is no fun for anyone. Life becomes very restricted, you become dependant on others and you feel lousy most of the time. But this is how it is so you deal with it. You take each day as it comes and appreciate the good days and try to forget the bad ones.
To be told that you will be dependant upon a machine to keep you alive unless you receive a transplant is devastating. The thought that another family needs to lose someone they love and adore to enable you to live is just heartbreaking. Seems like a win-lose situation to me: my future good health vs their grief.
When I was told I would need a transplant, my aunt immediately volunteered to donate one of her kidneys. What a humbling experience. We were all aware of the risks involved and my concern was more for her future health than my own. It still amazes me that a person can be so selfless that they are willing to give a piece of their body to another in order to save that person’s life. What makes my life so important that she should do this for me? Quite simply - she loves me. She cares deeply for my family. She doesn’t want to see my family suffer any longer. She is a hero.
Our transplant took place in Melbourne in 2002 and what a difference it has made to my life. After the expected recovery period I was able to return to an active life: full time work, overseas travel, I even stayed awake all day and washed my own car. I felt the darkness of illness and depression lift from my world and I began to enjoy life once again. The feeling of freedom and independence is never sweeter once it is found after being lost.
My transplant experience has taught me some valuable lessons and made me a better person. Appreciate everyone in your life. Enjoy each moment. Don’t stress over things you cannot change. Accept people for who they are. Be honest about your feelings. Accept help when you need it and give it to those who need it too. Enjoy life and be happy. I am.
Emma before and after her life-saving transplant
By Emma's mum
What a journey our little daughter Emma has had in her 18 months of life. Born with Biliary Atresia there was no other option but a liver transplant.
She deteriorated very quickly and she was listed for transplant the week before Christmas aged 5 months.
We moved our whole family to Sydney for the transplant and my husband who is a medical student, made the difficult decision to postpone his studies.
Emma was seriously ill and we were all so worried for her. One day I was sitting with her while doctors again tried to take blood from her with no luck, watching her cry tears that were stained yellow from the liver disease and at that point, I almost gave up hope.
Later that night we got ‘the call’ that Emma was going to get a second chance at life.
That day, to us, is the ‘real’ start of her life. Her transplant went very well and we watched her slowly get stronger and stronger and before we knew it she was back home!
That first night back at home was such a relief - we could actually fall asleep not wondering if we would be taking her to Emergency that night or not!
We have been very blessed that her transplant was a success and she is recovering well but the biggest blessing of all has been the incredible gift that a selfless family has given to complete strangers.
At a very difficult and emotional time, a family that we will never know has changed our family’s life forever.
We have been registered organ donors for a number of years, but I never, ever imagined someone in my family would need that precious gift!
Emma did not have any hope of surviving her first year if not for her donor.
Please consider organ donation.
Marion is now able to enjoy her grandchildren thanks to the life-saving generosity of a donor.
An 11th hour 'gift of life'
Words cannot describe how I felt when I regained consciousness after my double lung transplant surgery in 2009. As I looked at the nurse I realised: I had been saved with the ‘gift of life.’
I had deteriorated very quickly from the affects of idiopathic pulmonary fibrosis (IPF) and had been put on the transplant waiting list. My father and brother died of the disease and I was diagnosed in 2006. Lung transplantation was the only thing that would save my life.
Already a patient in a hospital intensive care unit when word came through of a possible transplant, I was transferred to The Prince Charles Hospital, Brisbane. Had the lungs not been a match I would have been placed in palliative care with pain relief. It was just a miracle that the donor lungs were a match.
In the early days of recovery I believed that I must have been touched by angels, but I knew who the angels were: my donor and his or her family and the transplant unit at the Prince Charles Hospital, Brisbane, headed by Dr Peter Hopkins.
Aged 62 at the time of transplant, I was discharged from hospital after just 11 days to start on the road to recovery.
Along with my husband Barry, daughters Kristen and Jacqueline and son-in-law Eric, whose love and support has sustained me, I am a very grateful human being.
Life is precious and beautiful. As I go about my new life with vigour and excitement, I feel extremely special that I walk with the lungs that belonged to another human being.
It’s my fervent wish that my donor’s family can take some comfort in the fact that the donation of their loved one’s organs saved the lives of up to five people that day.
The most special thing about my new life, apart from being with my family and watching my little grandchildren grow up, is being able to breathe freely.
Thank you to my wonderful donor.
Tinni is a hero to her family
By Mum, Dad, Kearin, Kelly and Matthew
Our beautiful 17 year old daughter Katrina or Tinni as we called her, was taken away from us in the prime of her life.
Tinni was diagnosed with epilepsy at the age of 11 and by the time she was 16 it was getting worse.
Tinni was a typical teenager who loved life, parties and going out with her boyfriend and friends. It was in her last month with us that we had a random conversation. We have no idea how it even came up but it was at this time when we found out her intentions to donate. Her reply was ‘I won’t need them anymore so someone else can use them.’ That was the end of our conversation.
Thinking back now, how would anyone have been able to look into the future?
As a donor family we found so much comfort in receiving letters from the recipients; to know that all is well and that donation has made such a difference in another family’s life. It is like a piece of her still lives on and it is of great comfort that our daughter was able to give the gift of life.
To our family, Tinni is a hero. She donated her kidneys and heart valves. Without this random conversation we wouldn’t have known what to do. We believe that decision would have been too hard to make.
Talk to your friends and family, and spread the word. Everyone needs to know the importance of organ and tissue donation.
To all the recipients we have found such comfort in your letters and cards; it has made a world of difference.
Tinni has left her legacy behind her. She will never, ever be forgotten. We love you Tinni. You will be forever young and free. Love Mum, Dad, Kearin, Kelly and Matthew.
Brett, father of three
One good turn deserves another
Brett was the recipient of two corneal transplants and was adamant that should something happen to him‘they can take what ever they want'. It was noted on his driver's licence and something that he was passionate about. Never did I think I would need this information.
Then out of the blue Brett was admitted to hospital with severe headaches and nausea. Within an hour he was in a coma.The following morning I gave permission for a scan as I was preparing our children for their day in school and child care.Later that afternoon I was informed that Brett had a brain tumor and was going to Adelaide for treatment. Still later that day I was told he was ‘brain dead' and that all intensive care machines would be turned off.
I then enquired about him wanting to be an organ donor. The hospital staff were amazing and the process was put in place. A team came up from Adelaide to retrieve the organs. This process gave us an additional 36 hours to say goodbye to my husband and the father to our two wonderful children.
Soon after we received a letter to advise us that Brett's organs had helped five people. We were pleased that his wishes had been carried out and pleased that the process was successful. Happy that something had come out of our sudden and very sad loss.
I still miss my husband after many years, though I know he made the right decision and I am pleased we could carry out his wishes.
A long wait
My kidney disease came out of the blue. One day at work I began to feel unwell and I decided to go home. Not long after I started to lose all sense of direction and balance, then collapsed. My body was shutting down. My brain and heart blew-up and my left side became paralysed.A few days later a friend found me at home and rushed me to hospital. I was then transferred to Melbourne. My heart stopped multiple times before the doctors were able to pinpoint what was happening.
I basically died three times over. I deteriorated really rapidly and so much damage was done in such a short time. After a week in Intensive Care, I started to improve. After months of tests, I was diagnosed with kidney disease caused by a viral infection and I would need a transplant...then the long wait began.
For the next eight years I travelled to the dialysis unit every Tuesday, Thursday and Saturday to be hooked-up for four hours to a blood-filtering machine that did the work my failing kidneys couldn't. While on dialysis I couldn't plan anything,go anywhere, or enjoy a regular lifestyle. My life was on hold.
It was a long time to be waiting. Everyone around you seems to get a transplant and nothing is happening. You also see many people die. You start to worry.Then the phone call, I would receive a donor kidney. I was actually two hours into my treatment and still on the machine when they told me. I didn't know what to do, but they said ‘well get off, they need you now.'
That was nine months ago and I started feeling the difference almost instantly after transplant.
After a couple of days, you notice the difference. You start feeling better within yourself. No more dialysis, you regain your mobility, you can start to plan things, go away.
I have no doubt how much the donor organ changed my life. People who donate organs are true champions. It gives people a new lease on life.
If you're thinking about it, don't think, just go and do it. Being able to give someone a second shot at life is the greatest gift you could ever give.
You get through the first six months, then you think about the next 12 months, then the next five years. Anything now seems possible.
Sarcha, Johnny and Finn
Back on track
The first thing I remember when I woke up from a liver transplant operation was that I didn't have a headache. In the lead-up to my transplant my health got worse and worse. I always had a headache, felt tired and had no energy. I couldn't work, couldn't play with my kids and couldn't exercise.
I was diagnosed with a liver disease at 22, so I've known for years that one day I would ultimately need a transplant. Last year my condition deteriorated suddenly and I was put on the waiting list for a transplant.
The transplant team thought I wouldn't last 10 days without a new liver. It was an emotional time for my wife and quite stressful for my little girl who was old enough to understand her dad wasn't well. She would ask ‘Have you got your liver yet?'
I wasn't worried about dying. I was worried about not being there for my family-financially and emotionally. Surprisingly my blood tests improved. But I would still need a transplant to live.
I was to be discharged from hospital to wait for that phone call that would save my life, but then the transplant coordinator came to see me and said, ‘we have got you one.'
It was all systems go. I thought I was about to go home and then early the next morning I was waking up with a new liver. Straight away I felt better. After a month or so, I started to go back to my normal routine, the routine I'd had before becoming really sick.
I am now back at work and have the energy to play with my kids-five year old Sarcha and two year old Finn. I am jogging again and a regular 50kmbike ride is the norm these days. It took me three months to sit down to write to the donor family. I did it when everyone was out and it took me six hours to write. It's hard to write. What do you say to thank someone for saving your life.
Jim and Jen
Out of the blue
Everything happened so fast and out of the blue, it was like a whirlwind and at the centre of this whirlwind was Jim, my big, strong, wise brother.
We were off to the coast for a holiday and had visited Jim and his wife Lee before we left. Jim said ‘have a great time, don't worry about anything and we'll see you in a few weeks'.
The next day Jim became jaundiced and his fight to live began. He was admitted to hospital and the following week flown by air ambulance to the transplant unit at the Royal Prince Alfred Hospital.
Doctors did not know why this healthy 49 year old man became suddenly ill and why his liver was shrinking and dying before their eyes. Jim underwent a myriad of tests, however his condition continued to deteriorate and he was placed on the transplant waiting list.
Three days later his major organs began to shut down and we knew if a liver was not available he would die. At 10pm that evening we got the word that Jim had been scheduled for a liver transplant.
Jim pulled through the massive operation, thanks to the exceptional skill and care of the medical and nursing staff. It was a hard road to recovery both physically and mentally. To stop his body rejecting the new liver he required high levels of steroids, causing hallucinations-a terrifying experience.
It's hard to capture this whole experience in so few words. The love from family,friends and people we came in contact with was phenomenal. They all contributed to Jim ‘hanging in there',being strong and positive. But it was Jim's inner strength and the love and support of Lee and their three sons that had the most impact.
Jim truly appreciates and respects his new liver and the person who donated it along with the people who donated their blood and plasma which circulated in his body for days keeping him alive.
Years before, Jim had the conversation with his family about organ donation and registered as an organ donor, however receiving a donated organ was still a huge emotional experience that can not be underestimated.
We've known people who have died whilst waiting for a transplant and hope by telling our story it will encourage more people to choose to make their wishes known about organ donation.
Courage rises above all heartache and despair to save a life
The hardest moments in life are the ones that are unpredictable and the ones you can't control. I was born healthy but at about four weeks old I became sick and was diagnosed with Biliary Atresia -a rare condition in newborns. As a five month old baby I was put on a waiting list for a liver transplant which would end up deciding the fate of my life.
For the following two months I was in and out of the hospital. It was hard on my family because they lived up here in Toowoomba and my parents had to look after my brother and sister who were five and seven at the time. So day after day,my parents watched me deteriorate a bit more.
In all honesty I was dying before their eyes. My parents prayed for that phone call that would save my life, the one that would give me a new liver, a new life. It was Christmas Day. The doctors had given me to the end of that week, and after that I would most probably not have been here. Mum had just sat down to eat her lunch when the phone call she had been waiting for arrived. They had a new liver for me. So that Boxing Day at 4am my parents carried me into the theatre where I would spend the next nine hours. Dr Ong successfully completed the liver transplant.
So that Christmas time brought heartache to one family and joy to mine.Through their heartache of the loss of their loved one, they were able to make the decision that saved my life. Something that would have been so hard for them to do, but something I am so grateful for and something I will treasure for my whole life-something that has made me, me. If it wasn't for that decision to be an organ donor I would not be here, I would not be a daughter, a sister, a friend and so on. So I thank that family every day of my life and I will continue to do so for the rest of my life.
So donate, save a baby that once was like me and help bring joy to their family. But ultimately it's your choice.
Sue and her dad
From the other side
I was working as a regional donor coordinator for four years when my dad was diagnosed with end stage kidney failure secondary to undiagnosed cardiomyopathy.
My dad was a farmer and was used to working 15 hours a day. To see him on dialysis and the restrictions to his life, gave me new found respect for people on dialysis.
Two heart surgeries and two years later, my dad received a call that there was a kidney available. After the initial excitement, my parents and I became very emotional, knowing while we were celebrating there was a family going through one of the worst days of their life.
Dad's surgery was uncomplicated, but five days later his condition deteriorated. He was admitted into the intensive care unit with high temperatures and decreasing renal function. My dad's diagnosis of Adeno Virus did not give us any comfort as his prognosis was bleak but miraculously he survived and so did his new kidney. Dad has named his kidney Sidney, after his 80 year old neighbour who works like a Trojan. We celebrate two birthdays a year-one for dad and one for Sidney.
Dad has resumed being an active member of the community and is a fantastic ‘papa' to his grandchildren. Our family is eternally grateful to the donor and donor family.
On a personal note, this experience has given me a richer insight to families with loved ones who have organ failure; the mixed emotions of receiving a transplant and the difficulty of putting pen to paper to thank the donor family.
This first-hand knowledge has helped me when speaking to a donor family-having gone through the process I have the utmost faith in the people and the process of organ and tissue donation and the benefits that it can bring.
Thanks Bone Bank
Back on track thanks to Bone Bank
Ashleigh's dream of becoming an elite gymnast seemed all but lost after suffering a back spasm during a practice session which was later diagnosed as the result of scoliosis. Within only a few months, scans showed the curvature of her spine was progressing rapidly, leaving Ashleigh far from the healthy active teenager she once was.
The initial treatment of a back brace was trialled but unfortunately did little to correct the 48 degree lumbar curve leaving her so debilitated. It was then Ashleigh and her parents were advised surgery was the only option. Metal rods were inserted and her spine then fused using bone graft generously donated by patients undergoing hip replacement surgery. Post-operatively Ashleigh has regained much of her flexibility and remains grateful to the anonymous people who made her recovery that much easier.
As a result of her experience, Ashleigh hopes to work within the health profession so as to assist others.
Linda, Member of Transplant Australia
My transplant journey
Several years ago I became ill and spent almost a year in and out of hospital. I was diagnosed as suffering from an auto immune liver disease, which was causing lots of problems - encephalopathy, pleuraleffusions, odema in legs and feet and a very great feeling of being unwell.
In mid September of that year I was admitted to Flinders Medical Centre for transplant assessment and after a few hiccups along the way with more encephalopathy incidents, and troublesome dental work requirements (my blood would not clot) and many more stays in hospital I was placed on the list for a transplant.
I went home from hospital (at my insistence) for Christmas as I had the feeling that could well have been my last Christmas and I wanted so desperately to spend it with my family, but I was very unwell and although I was at home on the morning of Boxing Day, I knew I had no choice. I needed to get back into hospital to have the pleural cavity drained again. All went well for a few days and then the drain became blocked - then I was given the news that they had a liver for me.
I went to Theatre at about 4 am feeling an immense sense of calm and peace.
Surgery went well and I made good progress until I contracted Stevens Johnson Syndrome due to an allergy to antibiotics. I was desperately ill for three long weeks and required five lots of surgery to have dressings changed, but my new liver was working well and saw me through all of that.
I finally came home in early April and have made wonderful progress - I live because of the generosity of my donor and family and am grateful every day.
Great life after transplantation
I had my kidney transplant 41 years ago when I was 40 years old, and still living life to the full.
Great things have happened since my transplant:
I travelled overseas and all around Australia - plenty of barbecues and a small amount of drink to keep celebrating my great life after transplantation; seeing my grandkids grow up; going to the Transplant Games to celebrate with other transplant recipients to tell stories of life given to them by their wonderful donors- plus the on-going care by our Australian doctors are just some of the highlights.
After my transplant, I moved back to the bush to Echuca and built a caravan park, Boat Marina. I joined Lions International and became President and also became a City Councillor. I started a busy caravan and boat retail business with my son Raymond. I took up lawn bowls and became a committee member. I have enjoyed three overseas cruises seeing the world and travelled to many Australian districts. Being able to do this has helped my transplant health and I still look forward to more travelling and meeting people - I am now 81 years and so appreciate my kidney of 41 years.
Pru and Jude
My left kidney
Jude is a big part of my life and she has always been a source of total honesty for my life. I remember staying with Jude and sharing the mundane morning ritual of brushing our teeth and watching with awe at the massive array of tablets she would calmly throw down. Jude has never appeared ill. It was dialysis that spelled out the severity of what was happening to someone I love.
Dialysis can be quite frightening, whether observing or more hands on, it's quite scary. I have seen fear and pain in patients' eyes - but never in Jude's eyes. It was more like a fierce determination to have her blood pumped out of her, cleaned then pumped back in until the next time.
I have received many reactions since before our transplant and after. The decision to give a living piece of my body away is nowhere near as impressive as it sounds. It was quick and simple and I have never reconsidered it for a moment. This was a selfish act for me personally as it was nothing whatsoever to do with loss for anyone else but me; I couldn't watch someone I love die without trying to do anything.
So I harassed specialists, my own GP, family, friends and the amazing renal nurses. They all served as my technical support centre-without this level of care I doubt we all would have made it through the process with just the scars we signed up for. This part of my life has been a constant source of pride and surprise for me and learning that anyone is capable of swapping some good for bad. I hope people can find a little bit of strength and hope vicariously through our experience.
Prof Bob Jones is the Austin Health Liver Transplant Unit Director
Prof Bob Jones
The miracle of transplant
Transplantation really is an extraordinary miracle.
You have patients, who are so sick and fragile while they are waiting for a new liver, then they have a transplant and a few months later they are at home cutting the lawn or playing sport. They're back doing the normal things they were doing before they got sick.
For every 10 patients who come to the Austin waiting for a transplant, three to four of them receive one.
The others will either get better under medical care or they die waiting for a transplant.
It is very frustrating for us to see people dying, but it is absolutely devastating for their families.
I find it extraordinary that, in their grief, families decide to donate at all. I am always amazed by the process. There is something so fundamental about the gift of life.
By making that decision, you will be saving someone's or several people's lives. The question should not be: ‘Do you want to be an organ donor?' The question should be: ‘Do you want to make transplantation available to everyone?'
The body is made up of exquisite organs. It is a great shame to waste them.
Delivered by an angel
Tim's diagnosis with terminal cancer three years ago did not alter his decision to be an organ donor. He used this decision as a way of dealing with his cancer, by way of focusing on others, rather than himself.
Unfortunately a year before Tim passed away from cancer he learnt that his decision to be an organ donor would not be acted upon. It was a shock to him as he thought it would be a decision that would never be questioned, as it was something he so strongly believed in. This was a big blow to him and caused him great disappointment. He handled this with eventual resolve, and continued living his life believing that the door of organ donation was closed.
The morning after Tim passed away I received a phone call from the coordinator of the eye bank at the Flinders Medical Centre, asking for my permission for Tim's corneas to be used as transplants. Although I had little sleep, and a very short time frame in which to make this decision, the choice was clear. I knew how much organ donation meant to Tim and I had comfort given to me by an embroidered angel on Tim's quilt when he died.
Tim was at peace with his angel, and I was at peace knowing Tim's wish was fulfilled. I felt as though I was giving him a gift by agreeing to the tissue donation, which was not mentioned to us when Tim was alive.
On the afternoon of Tim's funeral we received a phone call from the eye bank coordinator advising us that Tim's corneas had been transplanted to two elderly people. Just as Tim was delivered by an angel, the two people were delivered the gift of sight by an angel.
My lucky day
A date forever etched in my mind was Friday the 13th June 1994, whilst it might be seen as unlucky for some; this date would change my life forever!
After suffering with heart blockages, I finally presented to hospital for treatment and found myself whisked off to Sydney,operated on for thirteen hours and told that I was now a candidate for a heart transplant.
As a fit, hard working young man and father of four, this came as a surprise to my family. After waiting for four years in 2000, I got the call that a heart was available and I had my first transplant.
At first things were fantastic I was out of bed the next day, (not quite ready to take on the world), feeling good and then about a week later I had my first rejection and other infections. After about six months recuperation in hospital I was able to return to work while still dealing with bouts of rejection.
Unfortunately, in 2006 I was back in hospital with heart failure. I was told I needed a second heart transplant. After learning to walk, talk and eat again I was released from hospital and within a month of my discharge I was able to celebrate our 25th wedding anniversary and see my children get married. I now have grandchildren and three weddings to attend.
I am currently the President of the Australian Heart/Lung Transplants Association and I am forever grateful to the two people who have given me the gift of life and I thank the transplant coordinators, doctors and nursing staff for saving my life.
People I will never forget!
Mr Darcy's generous act of love
Terry was a decent family man, a fine lawyer and a respected politician. In 2007 when he died of heart failure while cycling at Red Hill. He was an ACT Supreme Court Judge. He didn't expect to die and had much to live for. His daughters Lara and Maddy turned 15 and 14 years old two and five days later, and it would have been his 50th Birthday on Valentine's Day 2008, and soon after his 20th Wedding Anniversary.
Terry and his wife Helen discussed and agreed a few years earlier that they would be organ and tissue donors and placed their names on the register. They believed it was something (like mutual wills) that they should do as responsible partners and parents.
Helen said that ‘the donation of Terry's corneas improved the life of another person who was in pain. As I said at his funeral, Terry had the most soulful brown eyes, my own Mr Darcy. The recipient of his corneas appreciates them as a priceless gift, but also as a modest one, because it didn't save lives. His tangible generosity gave our family some sense of meaning for his death, and our decisions were made more easily, as we knew his wishes.We drew strength from the fact that his death followed his optimistic approach to life: he made a positive difference to individuals and society at local, national and international levels.'
‘Many people have asked if there is anything practical they can do to honour Terry's memory - I hope his example will inspire others to talk to their family and register as donors, if they feel that it is the right decision for them to make. Talking openly about this special issue is not depressing - it's an act of love.'
My Valentine's Day gift
'Will it make me feel better?' was my one and only question when my parents told me I needed a heart transplant.
I was 11 at the time. I was extremely lucky and only had to wait two and a half weeks until I got my second chance at life.
A lot of people don't even get that, but each and every day I thank the donor and the family for giving me the gift of life.
I was born with a hole in my heart which was found when I was three years old. I was in and out of hospital at age five and ended up having to have an artificial heart valve and an artificial pacemaker. After my pacemaker insertion, I was fine for a few years until the batteries in the pacemaker ‘ran out'. I went into hospital when I was 11 to have a routine pacemaker changeover. Unfortunately, I was getting sicker not better and by the time the doctors found out the reason was due to an MRSA infection, only 60% of my heart muscle was working and they told me I needed to have a heart transplant.
Two and a half weeks later, on Valentine's Day, I got the call to say there was a heart for me.
If it wasn't for the gift of life from my donor, I would not be here. I say to family and friends, ‘you don't need your organs when you die, why not save someone's life?'
I'm an organ donor, so when my time is up, hopefully I can also save someone's life.
I understand it is a hard decision to make when faced with the question, which is why it is very important to discuss it when you are alive!
By Allan and Kim
Zaidee's Story & Zaidee's Rainbow Shoelaces
Our daughter Zaidee Rose Alexander, aged seven years and 22 days died suddenly from a burst blood vessel in herbrain called a Cerebral Aneurism.
Zaidee raced out of her bedroom after going to bed that night about 9 pm and yelled, "I have a pain in my head".
Zaidee then collapsed unconscious in her mum's arms, we rushed Zaidee to the Hospital in Shepparton where they did an MRI scan which discovered a large bleed in her brain. They then called for the air ambulance to rush Zaidee to the Royal Children's Hospital in Melbourne for emergency brain surgery. After the operation they sat Kim and I down and explained that Zaidee was brain dead and there was no hope that she would live as the bleed was too severe.
It was at that moment that Kim turned to the hospital staff and said she was going to donate Zaidee's organs and tissues. Hours later Zaidee was taken in for her final operation to become a donor. All the staff in the ICU just stood and watched as she was wheeled into surgery, as many at this hospital had never seen a child become a donor before- especially the new nurses.
When Zaidee was just 6 1/2 years of age she turned to Kim and said, "If anything happens to me I want to donate to other kids". Who would have thought just seven months later she would die and become a donor. Zaidee was the only child in Victoria under the age of 16 years to donate that year.
Zaidee's Rainbow Shoelaces have now become one of the national symbols to create national awareness for this subject and also for the public to reflect their support through wearing them.
Seven people benefited from Zaidee's Gift of Life.
By Mum, Dad, sisters and family
For the love of 'Adi'. A life lived to the fullest
In September 2010 our beautiful son, brother and uncle was pronounced brain dead from a Colloid cyst which had grown in the centre of his brain since he was born.
We had always talked about organ donation since Adrian's uncle Simon had passed away in 1993 as Simon was an organ donor. We followed Adrian's courageous, unselfish wishes, and his healthy body was used to save many lives. We were all thankful to have had the time with Adrian in the hospital before the organ retrieval for us to love and hold him. His sisters Natalie, Jill and Nat's partner Gary, had fun reminiscing and being able to take hand prints.
It was sad for Adi's youngest sister Alyse and her fiancé Pate as they were in Norfolk Island and unable to get there in time to be with him at the hospital. His niece Lara, and nephews Zac and Jake talk about uncle Adi every day and they make us laugh with their stories.
Adi had just started an apprenticeship as a builders' carpenter. He loved his new job! He travelled to Germany in 2007 where he learnt to snowboard in Switzerland, rode a scooter in France and searched for ancestors in Scotland.
Adrian had many friends; three were like brothers to him, Kettle, Sheedy and Morrie. Whether fishing, shooting or playing the Playstation, Adrian always made time for his mates.
Being best man in Morrie's wedding was one of the highlights in Adi's life. We had his funeral service at home where he loved to be, and we gave him a great send off.
His faithful hound Zharn is ours to look after now for Adi. Forever in our hearts and memories. Forever loved.
I had been ‘yellow' for years, but had no idea the underlying reason was that my liver was slowly dying.
In 2008 I was diagnosed with the end stages of liver failure. A month later cancer was found in my liver.
Over the next year I travelled regularly to Melbourne to monitor my condition and received chemo to ensure the cancer didn't spread to any other organs. I became sicker still and, after many tests, was put onto the transplant list for a donor liver.
I do not remember much from the year before I received a transplant, but I do remember the early hours when the Liver Transplant Coordinator rang to tell me a suitable donor had been found. It was very emotional. My partner, Julianne, even missed the turn off to the hospital. All we could think about was the person who had passed away but was giving me the gift of life.
Julianne agrees, ‘The drive to the Austin Hospital was a very emotional journey. Thoughts of the donor and donor family were heart wrenching.'
The surgery took 10 hours and afterwards I spent eight days in Intensive Care. Now, 17 months later, I have fortnightly visits to the Austin Hospital, and my new livershows no signs of rejection.
Julianne says I look so well and everyone can hardly believe it is still me. Before the transplant, I had no energy. I couldn't do anything. I wouldn't have seen Christmas without my transplant.
It changed my outlook and I now see myself as a completely different person. I still think of the donor and donor familyand when the time is right will write to them.
I think about them often. Feelings can't express how much I appreciate the gift. How do you express it? It's a hard letter to write.
I have been given the go ahead to return to work in the building trade. I now enjoy the simple things like mowing the lawns and helping around the house.
I will always be grateful for the special gift of life.
Hello, my name is Christopher and I am 11 years old.
I was born eight weeks early and was diagnosed with kidney failure which had other health issues attached. I am also intellectually impaired.
I needed oxygen for the first three years of my life and had to be tube fed for the first five years.
I was lucky enough to receive a kidney transplant at the age of five and for the first time could eat and drink without being tube fed.
My life is a lot better now. Not so many visits to the hospital and my transplanted kidney is doing great.
I am the youngest of eight children. I have five sisters and two brothers and they along with mum look after me very well. My dad died when I was five and didn't see me get my transplant but I'm sure he is watching over me from heaven. I like to play on the computer and watch movies. I also like to run around and kick my soccer ball.
I go to Inala State School and am in mainstream schooling attached to the special education unit. I love all my teachers and I have lots of friends at school who I like to play and talk with.
When I grow up I would like to work with animals as I love them all. Steve Irwin was my hero and I was sad when he died.
I went to camp for the first time last year with Kidney Health Australia and I am looking forward to going again this year and having some fun with other kids who have a disability like me.
Thanks to everyone who supports me and my family.
Irene and her mum
As a baby, there would have been endless sleepless nights for you.
As a toddler, I would have kept you on your feet.
As a teenager, no doubt I gave you many headaches.
I thought you were too strict and over protective, I wanted to run away.
The day I got diagnosed with my illness, the only place I wanted to run to...was into your arms.
You were there with me, every step of the way.
Every treatment, every procedure, you were there holding my hand.
There were many days where I wanted to give up but you were there to inspire me.
Days I felt I was drowning in despair, you threw me a life line.
Mum, you gave me life 38yrs ago.
You gave me life twice when you donated me your kidney.
It is because of your gift of life to me, I was able to give life to my two sons.
No amount of words can describe the love and gratitude I have for you, but know this mum - I am the woman that I am today because of you.
A welcome home sign greeted Marion after her life-saving transplant
Welcome 'back' Maz My mum's return to health and life!
My mum, Marion, received a double lung transplant in 2009 after many years of declining lung health and function. She almost did not make it; the gift of life came just in time from a very special donor and their brave family.
Humanity at its greatest and most selfless. How can we ever say thankyou? The Welcome ‘back' Maz sign was created by mum's older brother, John, and erected on mum and dad's front lawn in anticipation of mum's return home after her transplant. He was hugely relieved to have his little sister ‘back' - it was truly a family's journey as well.
The word ‘back' is indicated as mum was literally coming ‘back', not just returning home. Her health and her life had been restored. Mum spent 10 days in hospital post-transplant; quite a feat after such a major operation.
She walks with dad on the beach every morning, continues with her pilates classes, meets with friends and family regularly for lunch, travels interstate to visit her daughters and three grandchildren, gardens, cooks, knits and volunteers for DonateLife to help raise awareness regarding the important issue of organ donation.
She is well and truly ‘back' - living, breathing, loving and giving back! Mum thanks her donor and their family everyday by living life well and with gratitude after receiving the greatest gift of all - the gift of life!
One man and his bike!
Keith, a 74 year old former carpenter from the Perth northern suburb of Kingsley in WA is a very active promoter of organ and tissue donation. For the last 15 months Keith has been an avid supporter, having given out 47,000 Australian Organ Donor Register brochures.
Two years ago a friend of Keith's waiting for a lung transplant drew his attention to the cause. He and his wife Barbara initially started helping their friend promote organ and tissue donation by taking registration brochures to their local chemist, doctor's surgeries and health shops. Unfortunately they discovered that people weren't taking any of the brochures and realised more had to be done.
Keith took it upon himself to deliver the registration brochures to the letterboxes in his area, his local football club, eventuating with Keith being physically present at the metro Perth Train Station circuit.
Currently, Keith promotes organ and tissue donation by being present at the Perth Train station, Underground and the Esplanade stations. He catches the 5.15 am train to be in the Perth CBD to reach the early morning commuters. He simply stands there and offers the brochures to anyone who would like one. Some people have even returned to get more for their family or colleagues. He regularly plays music and is accompanied by his pink motorised bicycle which has informally become known as the DonateLife bicycle!
Keith enjoys promoting the cause and finds it very positive and has a lot of fun doing it. He has been praised many times for his volunteer work by transplant recipients and strangers and has received many hugs along the way. Keith hopes to be doing this as long as he can.
Australians please become organ donors
I am a passionate advocate of organ and tissue donation and know the benefits of donation first hand.
I was working a couple of jobs and life was good. Then it came out of the blue. One day I was struck down by pancreatitis.
I was in Intensive Care for four days and in hospital for three months. I had to give up work.
I followed my doctor’s advice and things settled for a while. Then I got worse and was told I needed a kidney transplant. I went on the transplant waiting list and on dialysis for three years.
Then one day I got the call—and someone’s kind generosity changed my life. I received a new kidney.
I am no longer tied to a hospital or home for dialysis and I no longer feel so tired and sick—there were days when I just couldn’t do anything.
I had my transplant at the St George hospital in Sydney.
I encourage all Australians to become organ and tissue donors as one day it could be someone in your family who needs a transplant.
I now speak to community groups through a foundation that I set up called the Gift of Life Foundation to further the cause of organ and tissue donation for transplantation.
I am involved in working with sporting clubs and I organise a celebrity golf day each year.
Andrew's family with his picture
Organ gifts save lives
A Melbourne teenager lost his life when he was hit by a car at Christmas - but his death saved three others.
Andrew, 17, died as he lived - generously.
He was killed by a car, but because he was an organ donor, his heart, liver and kidney saved three lives.
His parents, Lynne and Laurie, said organ donation had helped make a positive out of a tragedy. ‘It has got us through knowing that his organs have helped people,' Lynne said.
Andrew was a friendly teenager who lived life to the full, and his generosity lives on through his organ donation.
Years before, the family had discussed organ donation with Andrew and his younger brother, Shaun.
‘We talked about it at dinner time, and Andrew, being the person he was, said ‘yep',' Lynne said.
The family said often people worried that the bodies of organ donors would not be treated with respect, but Andrew was operated on just as if he was a living patient, and his funeral had an open casket.
Laurie also said that more people were eligible for donation than they realised. The family wants to encourage all people to consider organ and tissue donation and to talk about it with their families.
Bernie is the Clinical Manager of DonateLife Victoria
Finding hope in grief
One of our organ donor coordinators could get a call at 2 am saying a family has consented to donating a loved one's organs. The impacting part of that call is you know there's a family out there facing sudden grief and coming to terms with the loss of a loved one who was healthy 24 hours ago.
It's extremely powerful to see donor families who, in their acute grief, are able to make the decision to donate and in the end help people they never get to meet. Although a vast number of people support organ donation, when it comes to making that decision in the Intensive Care Unit, approximately 50 percent of families say no.
What we do know from our experience of working with many families is that they find it much easier to say ‘yes' to organ donation when they have known the wishes of their loved one.
The most important message is, even if you don't register as an organ donor, tell your family what your wishes are. We know that it is rare for a person's wishes not to be supported by their family, if the family know what those wishes are. However, if they don't know what their loved ones wishes were, they can go the other way and decide to say no.
We tell the donor families that what ever they want or don't want to donate, we will respect their decision. We are there for the donor's family and to see that the donor's wishes are followed. We ensure that the donor is treated with the respect they deserve.
We offer hand prints and locks of hair of their loved one as mementos. We also offer counselling services and send the donor family a rose voucher for a Reflection Rose that's been specifically bred for donor families.
Brooke and her sister Kristy
Education helps family discussion and decision about organ donation
Brooke believes that having discussions on organ donation at school, with her family and when she went for her driver's licence made the decision a little less stressful on her family during the decision to donate.
‘For me, it wasn't a hard decision to make. When I learnt about organ and tissue donation at school I decided that I wanted to be an organ donor and so I told my other family members my decision. 'Brooke was confronted with the sudden death of her mother, Shelley, following complications resulting from a stroke, when her mum was only 44.
When her family had discussed organ donation in the years prior to her sudden illness, her mother had told them of her wishes to be an organ donor.
When the pathway of organ donation was raised at the hospital, Brooke told her family that organ donation was important and that her mother had wanted to be an organ donor.
‘We had a family discussion right there and then and we all agreed. Everyone wanted to honour mum's wishes to be an organ donor,' said Brooke.
‘I'm glad we had that discussion because about three years later my grandmother died under a similar circumstance to my mother, also quite suddenly following complications from a stroke.
‘We all knew exactly what to do and organ donation was not a difficult issue for us. We knew that Nan wanted to be a donor because our family had discussed it', Brooke recalls.
Brooke says that her decision is validated each time that her family receive a letter (anonymously) from one of the recipients who are so grateful that their life has been saved through organ donation.
‘Each year I go to the Annual Service of Remembrance and Reflection and I see what a difference organ donation has made to other transplant recipients, many of whom are children.
‘I want to encourage families to have that important discussion and make sure that your wishes about organ donation are known. You too could save someone's life.'
My transplant story
In the mid 1980's I was diagnosed as a Type 1 diabetic.
I coped reasonably well until about 2000, living a busy and varied life.
I then suffered two diabetic comas and became aware of my failing kidneys.
I underwent dialysis for two and a half years and then I was gifted with a kidney and pancreas transplant.
After a slow recovery from surgery, I am now enjoying a full and productive life.
I am a professional squash coach, conduct my own wholesale business and act as a community advocate for organ donation and transplantation.
I assist my local hospital staff in public awareness and education programs for diabetes and renal health.
I wrote a letter through the hospital system to my anonymous donor family to thank them a year after my transplant and I will cherish their card of appreciation for ever!
My kidney transplant story
Born in the old Alice Springs Hospital in 1959, I was a small, early baby. I suffered from polio and as a result, spent a long time in the old Hospital. The doctors told my mother that I might not survive.
I grew up in Ernabella, and later as a young woman I moved to Amata (SA) and was teaching children at pre-school there. I had two wonderful children of my own, Jocelyn and Kirsty.
One day I took Kirsty for a holiday to Warburton to see Jocelyn and other family. While I was there, I got really sick, had lots of fluid in my body, was short of breath and couldn't walk. The doctor sent me to Kalgoorlie Hospital, then on to Perth Hospital via the Royal Flying Doctor Service.
I knew I had kidney problems because I had diabetes for years but now had complete kidney failure. I started haemodialysis in Perth and later learnt to set up my own dialysis machine, to put in my own needles for dialysis.
The doctor was really nice but it was a bit scary being in Perth and away from everyone I knew.
I decided to move to Adelaide. My youngest daughter was still a student then, she moved to Adelaide to be with me and to complete her year twelve studies.
I went through all the tests to get onto the kidney transplant waiting list, being on dialysis there for many years. While on dialysis at Wayville, a nurse told me there was a transplant kidney for me. I went straight to Queen Elizabeth Hospital after dialysis and had the transplant operation the next morning.
My transplanted kidney worked straightaway and I did not need to have dialysis again! I am very grateful for my transplant.
I think it's a good thing to donate organs.
Sadly missed, Mike
One man did make a difference
I got the bad news on Father's Day, my dad had suffered a stroke. Three months earlier he'd had a triple bypass operation, so we knew it was serious.
My dad lived on Elcho Island and had to be transferred to Darwin. Time went slow that day. My mum was with my dad the whole time, while my brother and sisters made frantic arrangements to travel from interstate. The next day we got the tragic news that we would have to say our goodbyes.
The feelings and experience that followed are very personal and emotional. It was during this time our family was approached about organ donation. We agreed that's what our dad wanted and were comfortable with the decision. The only obstacle was time, as we wanted to ensure we all said our goodbyes in person.
I remembered a conversation with my dad, he'd said ‘they can have whatever organs they want, they might not be much good but they won't be any use to me'. It was mentioned light-heartedly, yet I knew this was his wish. My parents had also discussed organ donation.
As fate had it my dad became an organ donor, donating his kidneys, lung and heart valves. It makes me proud that my dad's an organ donor and this has helped my family with the grieving process.
I have attended numerous organ donation ceremonies since, which is a special time for me to reflect and a chance to bond with other donor and recipient families.
My dad has always been my hero. Now he is some other people's hero too. I encourage anyone to become an organ donor, it is such a special gift to give. I miss my dad everyday, yet find comfort in knowing that he lives on in more ways than one.
John and Sue
It is pretty scary when you can't breathe...
At 44 I was diagnosed with emphysema. I realised that I would probably have about three years use left on my lungs-I was going to die.
Chronic obstructive pulmonary disease meant I had to give up work. It is pretty scary when you can't breathe.
Within two years my condition deteriorated so that lung transplantation was the only option.
On a waiting list I felt a constant fear that I may not last the 18 months for new lungs. The team at St Vincent's were wonderful and gave me hope.
After just one month I received a call. A set of lungs were available and I needed to be at St Vincent's within five hours. I said ‘what, now?' and was told ‘yes, now, and I'm not joking.'
I was getting new lungs and a new life. I remember waking up in ICU thinking it was the next day but it was three days later. The six hour surgery had gone well. I started life again.
Waking up to take a big deep breath is wonderful. I am living without constantly being sick. I take 20 tablets a day, but that is a small price to pay for the life I enjoy today. Just one year after my transplant I was back at work.
In 2003 to show my gratitude to the medical profession and raise donation awareness, my wife Sue and I walked 140km from John Hunter in Newcastle to St Vincent's Hospital in Sydney and raised ,000 for these hospitals.
This wonderful gift of life has enabled me to see my three children married, experience the wonders of five grandchildren and enjoy 35 years of marriage.
When my 71 year old dad, Oscar, died suddenly in 2006 and the family was approached about donation it was an easy decision.
Dad died so suddenly, so quickly. No one was expecting it. Dad was a professional parachutist in the Italian army. He had cheated death a hundred million times.
It was 3.30 in the morning. We knew he was dead. We weren't thinking of organ donation, but when the decision had to be made, we didn't need to individually go around and ask each family member. We always knew dad's wishes and what he wanted with no reservations.
I remember dad as the first person to give a hand and someone who lived life to the fullest.
He never went backwards, always two steps forward. He was strong, extroverted and confident. If I needed anything I only had to ask.
Dad's presence is extremely missed. A game of poker isn't the same, he was the king of poker.
I still find it so surreal. We still think he is going to cheat death again. But I'm very proud of my dad's gift to another human being.
Our family know each other's wishes. Some members want to donate, others don't. It is not us who donated, it was my dad who gave the gifts freely and willingly, we only conveyed his wishes.
It's a decision each one of us makes individually, the next of kin have the responsibility to carry it through, untainted by their own wishes.
Dad's choice saved the lives of two people and gave sight to two others.
A birthday wish comes true
When my son Reace celebrated his sixth birthday two years ago, he made a wish that I would get a transplant. Less than a week later, his wish came true when I received new lungs.
Reace claims responsibility for my luck and I agree he must have powerful wishes. Before my transplant I had been so sick, I couldn't even walk from the couch to the front door without losing my breath - and it was only six paces.
Just before my transplant my lung function was only 10 per cent. Now the difference is so noticeable. My donor must have had a rip snorting pair of lungs. The transplant has changed my life.
I was born with cystic fibrosis and I was able to manage my condition without a hospital visit until I was 23. At 30 however, I slowly began to deteriorate and was listed for a transplant.
I started having ‘tune-ups' once a year, then every six months, then every three months until I was basically living at the hospital and reliant on oxygen to survive. Everyday tasks became impossible and I had to rely heavily on my family to help look after both Reace and myself.
I couldn't even have a shower because standing up made me breathless. I couldn't brush my hair because lifting my arms above my head made me breathless.
I couldn't walk to the fridge to get lunch because it made me breathless.
After four months on the list, I received the call to say a pair of lungs was available.After my transplant, I felt better straightaway. My first lung function test was 98per cent, I couldn't believe it. I started to cry.
I was so used to being breathless that I didn't know any different. I had wondered what it would be like to be a normal person and now I know.
I can do everything a normal mum would do. Housework, workout, take Reace to basketball and scouts. I can also get up in the morning, have a shower, brush my hair and get dressed without taking two hours.
I am extremely grateful to my donor and their family.
Magnificant Mal 239
Shining stars Our special donor family and transplant team
At age forty-five, Mal's life and our family's were changed forever overnight. His once healthy heart could hardly function. We were devastated.
A few years later, our lives were again changed forever, through the unique experience of transplantation. Lengthy deliberation ensued before Mal made the decision to accept this path, but nothing can prepare you for that phone call.
This was a tumultuous time. It was a journey that has been very special and a privilege to have experienced. A journey of conflicting emotions. For our family, renewed hope and a second chance of life. For our special donor family, intense grief at suddenly losing their loved one. Our feelings were indescribable. This precious new heart was the ultimate, most caring and generous gift of life that could be given to a stranger. We will remain eternally grateful to them.
We needed to give something in return. Our goals were to acknowledge and thank our donor family and our transplant team, and to raise awareness of the need for organ and tissue donation. The Cycle of Giving event has been able to expand with the love and support of valued family and friends. Now in its sixth year, a grant from the Organ and Tissue Authority has enabled a continuing dream to be fulfilled.
Whilst all too short, Mal's second chance of life proved to be an extraordinary time. Through participation in the Australian and World Transplant Games, another close and supportive family was established. Mal set up and co-ordinated the archery program for the 2006 Australian Games. Despite being very sick, he won medals and was elated to score a bull's-eye! He was humbled and surprised to receive the Clifford T Henderson Award. This recognizes the one who most embodies the spirit of the games, through courage and inspiration.
When faced with a diagnosis of terminal cancer our immediate thoughts were for others. For our transplant team, their dedication and skills which enabled a second chance of life were going to be prematurely cut short. We felt acute grief for their impending loss. Our own loss seemed secondary.
I hope to perpetuate this expression of our eternal gratitude through the Cycle of Giving - Give a Gift of Life. I have Mal's firm and loving hand guiding me on this continuing path.
Thirty three years ago life was different
I clearly recall being asked to wait in a dimly lit waiting room whilst my parents were behind a closed door, engaged in discussions with the Doctor. My life was being discussed. The door opened, and I was told ‘You may or may not need dialysis'. At 17 I was diagnosed with chronic renal failure.
I finished school, completed a Secretarial Diploma, achieved a Diploma of Dental Nursing, a Diploma in Registered Nursing, a Post Graduate Certificate in Nephrology Nursing and Certificate IV in Training and Assessment.
Rod and I married in 1984. To have children was not to be our future. Dialysis and kidney transplants were to be part of our future. Twenty five years of dialysis and three unsuccessful transplants made us ponder what life was all about.
But life is precious and the ‘Gift of Life'is even more precious. One phone call in 2003 took us by surprise. The decision to have a fourth transplant was not an easy one. Was this our last chance to hope for a ‘normal' life? It was a chance we had to take.
This time there were no complications, eight years on and life is fantastic. No dialysis, the freedom to travel and enjoy holidays together. To participate in the Transplant Games, to meet very special donor families and living donors. To chat with other recipients and hear their own courageous journey is something I treasure. To complete the Rottnest Island Channel Team Swim, with Rod kayaking beside us. To complete a solo swim across Princess Royal Harbour in Albany, with Rod at the finish line and so much more. My life has been enriched through nursing. The opportunity to care for those who, just like me, continue their journey living with kidney failure has been an absolute privilege. And now my chance to enjoy retirement!
Yet throughout the highs and lows, the endless love, support, encouragement and inspiration from Rod, has given me the strength to keep going. Looking forward to each new day, having the strength to face a still uncertain journey, I struggle to find the words to express my innermost feelings of what it means to be given the chance to live a ‘normal' life. To say Thank You will never be enough. I am at a loss to explain how it feels to be given such a gift, the chance to ‘live' again.
This ‘Gift of Life' has made my life complete. 33 years on and yes, life is indeed very different.
It was really worthwhile
In 2001, approximately twelve months after the death of my wife from chronic renal failure, I discussed with my adult daughters the matter of organ donation. At that time a good friend was undergoing dialysis treatment. Not wishing his family to undergo the loss of his passing, I decided to donate a kidney.
Following stringent tests, doctors at Princess Alexandra Hospital agreed that my friend and I should ‘give it a go despite our ages'. At the time, my friend was seventy four years old. I was seventy six. Our operations took place in 2001 and were conducted by Dr David Nicolon on my friend and Dr David Johnson on myself. Because laparoscopic methods were reasonably new to Queensland at that time and consequently there was a risk that the kidney may be damaged, I opted for the full open surgery. I thought it not worth the risk of donating a damaged kidney.
Early on the morning after our operation, my friend walked into my hospital room and said cheerfully ‘the plumbing's working'. It is now some nine years and five months since that day. Despite minor setbacks and the continuing problems associated with anti-rejection drugs, my friend is doing well.
I have absolutely no regrets-on the contrary, I am so glad he has been granted a better way of life. Personally, I have suffered no setbacks, and remain in good health with my eighty fifth birthday due in a couple of weeks. Physically, to this day I have felt no ill effects, I take no medication and truly would never know the operation had happened.
Throughout the period prior to our operation, we received wonderful support from Toowoomba Base Hospital Renal Unit, Sister Lynne Abell and Nephrologist Emily Jones and Princess Alexandra's Professor Campbell and Doctors David Nicol, David Johnson and staff.
Both my friend and myself were given to understand we were Australia's oldest unrelated pair to under go the [kidney transplant] procedure.
Hip to be donors
In little over a year, Bill and his family members were faced with the difficult decision of choosing to donate bone and soft tissue on not one, but three occasions. Each time, they rose above their own pain making the noble decision to donate so that some good may come from their otherwise unfortunate situation.
When Bill's healthy 17 year old grandson became the victim of a fatal motor vehicle accident, his family generously agreed to donate his long bones and soft tissue. Two years later, their gift has improved the quality of life of over 23 people requiring complex orthopaedic surgery.
Bill and his partner, Joan were made aware of the activities of the Perth Bone and Tissue Bank after attending an arthritis education session where femoral head donation was discussed. When Joan was admitted to hospital following a fall, she was advised hip replacement surgery was necessary. Recalling the earlier education session, she enquired with nursing staff as to whether she would be suitable to participate in the femoral head donation program. After thorough health screening, she successfully donated her femoral head for future use in another patient's orthopaedic surgery.
Several months after Joan's surgery, Bill also found himself requiring hip replacement. He did not hesitate in agreeing to donate, making him the10,000th West Australian to donate his femoral head.
By David, Gift of Life President
The Gift of Life Two decades on
Twenty years ago I faced a sudden unexpected crisis. I had enjoyed a very interesting and varied life during a career with the Australian Diplomatic Service, most recently as head of our Consulate-General in Noumea. I was in good health and happily married with two teenage sons.
I travelled to Papua New Guinea leading an Australian conference delegation and then joined Foreign Minister Gareth Evans to visit New Caledonia. On the way home, I was struck by acute hepatitis and admitted to Canberra Hospital. As my condition deteriorated, I was transferred to the Austin Hospital in Melbourne. The option of transplantation was explained and my wife and I agreed, if my condition worsened, it was the only resort. I then entered into a coma with less than a day to live. The medical team who saved me described it as a miracle - to survive in that condition and to receive a matching liver in such a short time-frame. For me and my young family it felt much more than that. After convalescence, we gradually returned to normal life as a family and I resumed my career. More importantly, it led to much closer bonding between us and with our friends who lent us enormous support during the upheaval.
I worked for fifteen years afterwards and became head of the Australian Consulate-General in Hong Kong. After retirement I decided to do whatever I could to promote greater awareness of the importance of organ and tissue donation. This reflected not only my strong appreciation of the special gift I had received, but also the fact that each year in this country the waiting list for transplants far exceeds the number of organs available and many people die waiting. I am currently President of Gift of Life, advocating organ and tissue donation in the ACT and surrounding districts, which also contributes nationally and organises the annual community DonateLife Walk around the lake in Canberra.
My family is forever indebted to the skill and compassion shown to us over many years by the Austin liver transplant team and to the extraordinary generosity of the donor family - who remain unknown to us. You have made our lives since immeasurably better. You are never far from our thoughts. Thank you all sincerely. I hope my story and the fact that I am still able to contribute energetically two decades on will help inspire others to become donors.
God, I can't do this
I was 16 when I found out I had been born with one kidney. In 1971 I became the first person to have a baby while on dialysis. Unfortunately Andrew only lived a few hours. Lisa came in 1973 and again only lived a few hours. I went along without dialysis until 1979 when my kidney gave up and I had a shunt put in. On Monday I awoke and went off to begin home training at Rachel Foster Hospital. Tuesday I was off again. I came home by myself on the train a complete wreck. I fell into my hubby's arms and cried and cried, 'I CAN'T DO THIS'. That night I just kept begging God and saying, 'I CAN'T DO THIS'.
Wednesday I was on my day off training. I was on my own just out of bed when the phone rang. The voice on the phone said I was needed at the hospital. ‘But it's my day off', I cried. ‘We have a kidney for you, get in here as soon as possible. The surgeon is picking it up now.'
That was 32 years ago and as they say THE REST IS HISTORY!
Since then I have competed in three World Transplant Games and five National Games including the inaugural one in Melbourne in 1988 for a total of 17 medals. I am not a sporty person and never have been but a person's sacrifice has given me the greatest gift and I want the world to see what can be achieved through donation. I was 27 when I received this gift and I have had 32 extra years of quality life. Yes there have been ups and downs but that's life anyway.
Linda is helping to lead the way
Linda Thomas is a former ICU nurse and has been working in the organ and tissue donation sector for the past five years. Previously Linda was a Project Officer for the National Organ Donation Collaborative and worked as a Donor Coordinator with DonateLife. For the last twelve months she's been a Clinical Nurse Consultant (CNC) sharing her role between Princess Margaret Hospital and St John of God Murdoch and Subiaco Hospitals.
This is a very exciting time for WA as, due to Linda's CNC role, organ and tissue donation has had a major presence at the above sites, with one being the children's hospital and the other being in the private sector.
As Linda describes it, the best part of being a CNC is introducing and developing the CNC role and in a way being a ‘pioneer'. The unpleasant aspect of the job is seeing families disappointed and disheartened when they would really like to donate their loved one's organs and/or tissues and they are unable to, due to medical reasons or logistics.
At each site Linda works with the Hospital Based Medical Director to provide leadership and consultancy to nursing, medical and allied health care professionals in the area of organ and tissue donation.
Linda finds great satisfaction in seeing donor families find some kind of comfort in their grief, knowing that from a tragic situation another person has benefited. When asked what people's reaction is when you tell them what you do for a living: ‘That must be hard!'.
Judanne and Pru
How lucky am I?
My name is Judanne and I'm now 57. In 1971 my parents emigrated from the US to Australia and my medical examination results showed I had kidney failure. I was just 17 and the diagnosis of glomerulonephritis meant very little to me.
By the age of 27, I started haemodialysis while living in Brisbane and luckily I was offered a transplant ten months later from an anonymous cadaveric donor. My transplant ‘took' immediately and within 2 years I was on an extended holiday in Tasmania at my friend Caroline's home where I stayed with her husband and 3 children, the youngest of whom was Pru. I moved to Tasmania three years later and became very close to Pru and she has always regarded me as an ‘honorary' auntie.
In the early 1990's my kidney began to shut down and by 2001 I started using a dialysis machine while living in Victoria and later Tasmania, again staying with Caroline and became very close again to Pru.
Pru was disturbed by the health difficulties I experienced, so two years later she offered to donate me one of her kidneys. While very grateful for this offer, I was also very afraid for Pru because she was only in her early twenties and naive about the inherent dangers of medical procedures. However the process eventually went ahead and in May 2005 we flew to Adelaide to have the procedures done.
Pru and I are both doing very well, she is proud of what she has done and I am extremely grateful to her for being brave and generous enough to give me a life away from the dialysis machines for the last six years.
Life is an amazing journey
In the year 2000, at the age of thirty nine, I was diagnosed with end stage renal failure. Three months later I was on dialysis. It was an unexpected shock that changed my life completely and affected my whole family. I had to resign from my job. It was no longer easy to pack up and go on holidays or be there for my children during special events at school. Even with a supportive group of friends and family, just getting them to school and back was a challenge. It was a problematic, stressful life and I felt quite unwell and tired most of the time.
Then, three years later, I received the most amazing gift of all, a pre-loved kidney. The transplant absolutely transformed my life. The wonderful thoughtfulness of an organ donor gave me a second chance to live a healthy, fulfilling life. Most importantly I have been able to be there for my family and have fully enjoyed watching my children grow up. I now have the energy to dance like a teenager at live gigs and play in the waves of our beautiful beaches.
My transplant has given me the opportunity to meet some interesting people. When they ask me what life means to me, my answer is simple. I am so blessed to be alive and life is an amazing adventure. Every day is precious and like many transplant recipients, I live life in the moment. I will always be incredibly grateful for the most generous gift any human being could give, a part of them that lives on to give another person a chance for a happy, healthy life.
Katrina and Mill
Donor a life-saver
Mill's daughter Katrina can't remember a time when her dad was unable to play with her.
Katrina, now nine, was less than two months old when her father received the life-changing gift of a new kidney. Before that, Mill required more than four hours of dialysis three times a week, with his kidneys working at barely 10 percent efficiency.
Now, thanks to a donated organ, the 47 year old from Brighton has a new lease on life. His renewed energy has allowed him to play tennis with his daughter and even take up cycling.
When he was about 25, Mill was diagnosed with a kidney disorder and at 40 he was put on dialysis and the transplant waiting list.
‘By then, there was about 10 per cent (kidney) efficiency left,' he said. ‘I could still function, but I got tired...and I just found I had no energy left.'
Told he would have to wait up to three years for a new kidney, after five months on dialysis he received the call he was waiting for.
‘So I was one of the lucky ones, and am very thankful to my donor and donor family.'
Mill said it was important for families to discuss organ and tissue donation.
James with his family
James helped save five Australians
James was waiting for an organ transplant as a result of the complications of a lifelong disease of juvenile diabetes (Type 1 diabetes).
A massive stroke left James brain dead but in his death he was able to donate organs and tissue so that the lives of 5 other Australians waiting for a transplant were saved and improved.
James was married to Sarah with three girls. ‘His hypos were gradually getting worse and more frequent - he would pass out', Sarah recalls.
He was then diagnosed with kidney failure, started dialysis and was place don the waiting list for a kidney-pancreas transplant.
After going to bed James complained that his head was sore and so Sarah gave him paracetamol.
Sarah rang the ambulance - she noticed his left side wasn't moving, he was drifting in and out of consciousness and his speech was slurred. An ICU ambulance was called and he was taken to Blacktown Hospital.
He was transferred to Westmead and his family were told that he would never walk again. James was taken off to surgery to try and stop further bleeding.
Tests confirmed that James was brain dead at 31 years of age. When the question of donation was raised Sarah felt anxious as she knew the quicker they did it, the better it was for the recipients. Sarah was grateful for the support of the Organ Donor Coordinator and Westmead medical staff.
James indeed left a life saving legacy- heart, lungs, liver and the corneas of his eyes - yes, his corneas were in fine condition even though his disease was causing his blindness.
Through the organ donation Sarah said she thought of the recipients - ‘they were getting the call, and how their lives were going to change for the better'.
‘Coping as a single mum with three young girls, I am so proud of their father for being an organ donor.'
Glenys with Angus, Lachlan and Hayden
He had decided to become an Organ Donor
Glenys can still remember the day she had a discussion with her eldest son about organ and tissue donation.
‘I was travelling in the car with my three sons (Angus, Lachlan and Hayden) when we started to talk about my life and what would happen if I died. We talked about organ donation and my eldest son said that he would be happy to be a donor in the event anything happened to him.'
Angus was a vibrant teenage child, a lover of life who got into all sorts of mischief and pretty much put 110 per cent into everything he did, good and bad.
Angus had an accident and ended up not having enough oxygen for too long and as a result of that he was on mechanical ventilation for three days and his injury was so severe that active treatment was withdrawn.
The hospital staff and I discussed the possibility of him being an organ and tissue donor.
This discussion was very difficult for my family but we thankfully knew what Angus wanted and as a family we had already had the discussion, so the decision to donate was straight forward in honouring his wishes.
The situation was explained to Lachlan and Hayden and we took photos, locks of his hair, ink prints from his hand and feet and then said our goodbyes.
I think the big part is that as tragic as the event was, there were still some positives that came from it and the fact that other families have their loved ones with them now due to his donations. That has certainly helped me and my family these last few years.
My transplant journey
The story of my kidney problem began in 2002. I was working in my own community of Numbulwar on the Gulf of Carpentaria when the visiting doctor told me I was suffering from the beginning of kidney failure.
I have been a kidney dialysis patient since the beginning of 2003. I was still able to work in Darwin part-time for the Department of Education for two days per week and have dialysis three days a week. I continued on my treatment for about three years.
One day I decided to get some tests done so I could be listed as a possible kidney transplant recipient. I had completed all the possible tests that were required by the medical teams, so there I was patiently waiting for the big event to happen.
I was on dialysis at the Nightcliff Renal Unit, doing my usual routine when I had a phone call from the Nephrologist Paul Lawton, and he told me that a kidney was available. I had to fly by myself immediately and my husband Mick would come the next day.
The transplant team were very caring and gradually I regained my strength, really learning how to walk again and care for myself. I spent five weeks in Adelaide, and learnt how to manage my tablets and daily medications. I have now retired from the workforce and with the kidney transplant I am able to visit my relations at Numbulwar and enjoy the freedom of no dialysis. I thank my renal nurses and doctors and my immediate family for their wonderful care and support during my time on dialysis and the follow up now I have the kidney transplant.
Simone, Executive Director ODAT and WA Young Australian of the Year 2006 and 2008
Simone has received and now she gives
Organ donation is the ultimate act of human kindness, offering hope instead of despair to those awaiting a transplant. This unselfish act of kindness changed the quality of my life.
Born with poor kidney function, I suffered renal failure at the age of nine and was hooked up to a dialysis machine to survive. After waiting three years I received a kidney transplant thanks to the generosity of someone who made the selfless decision to donate the ‘Gift of Life'.
My transplant took me from simply existing to living. It enabled me to finish school and go on to university graduating with a Bachelor of Laws degree at the age of 21.
Following my transplant, I embarked on a mission to promote organ and tissue donation in the community so more people like me could experience that life changing impact a transplant has to offer. After years of advocacy work, I was awarded a Winston Churchill Fellowship. This enabled me to travel overseas to study international models of donation.
On returning from my fellowship, I founded the Organ Donation & Transplant Foundation of WA (ODAT) in 2008. ODAT provides education, promotion, support and advocacy on all aspects of Organ and Tissue donation in WA. Since becoming a DonateLife charter signatory in 2009, ODAT has achieved many great things for Organ and Tissue donation in WA through its programs and events.
Unfortunately last year, my transplanted kidney of 16 years failed and I am on dialysis awaiting another transplant. To all organ and tissue donors and their families, I have to say you are special. Special is a word that is used to describe something that is one of a kind, so ‘special' is a word that describes you best.
Have a chat, see what people are thinking?
I am 28 years old and I'm currently on the transplant list hoping to receive a new pair lungs. My life at the moment is just about staying well and waiting for the day my number comes up.
I twice weekly attend a pre-transplant gym. There I see and speak with fellow transplant candidates, some who are waiting for lungs, some waiting for hearts. Straight after my session is the group of people who are post-transplant and because I have been listed now for about 4 months, I have been able to see a few people go through the two stages of gym.
Honestly it's the biggest turn-around imaginable. I just can't believe the physical improvement and total change in mind set and attitude. It is one of the most amazing transformations I have ever seen. From such bleak futures to ‘the sky's the limit'. I have seen this not only with the recipients, but with the partners and family members also. The sheer relief is priceless.
There are also some very uncomfortable moments, like when someone new asks you what blood type you are. Instantly you hope the answer you give is not the same as theirs, as there is such a shortage of donors. You can't help but feel you're in competition. In some ways this is true.
My personal opinion regarding organ donation is that it's as much a family decision as a personal decision. I believe that everyone should sit down and hear each other's views and wishes on the subject.
I'm one of the lucky ones
I'm one of the lucky ones, and thanks to my wonderful donor family, I'm alive!
About four years ago my health started going downhill. After seeing several doctors and having a barrage of tests I was advised I had a rare liver disease and that a future transplant was my only option.
The specialists had numerous predictions about how long I had, but within just another year it was obvious the transplant was needed much sooner than expected.
I was referred to the Austin Hospital Liver Unit where I was placed on the waiting list. I was very scared because there are no guarantees, and with the number of others in the same situation, the prognosis wasn't looking good.
It took nearly two years of waiting, and by this time my family knew that without a transplant soon the end was only a matter of weeks away. At this point the toxins were no longer filtered by my failing liver and had built up so much that I was too unwell to know what was happening.
I don't have a memory of the twelve months leading up to my eventual transplant. I had lost the ability to read and write, couldn't remember how to cook or do even the most basic of tasks that most us take for granted.
Here I am now, some fourteen months later, and I'm healthy, happy and enjoying my life once again. Words really don't seem enough when expressing gratitude to my donor family. How do you thank someone enough for giving you back your life?
I urge everyone to become an organ donor. There are just so many people who need your help.
Gift of life
I was born with reflux so by the time I was 17 my kidneys had stopped working. I spent two years on dialysis. I had a transplant 24 years ago and am still going. I have had two beautiful children and no problems with my pregnancies.
I have my family and my health because of the special family who made a decision to donate their loved one's kidney to me. I am forever grateful and thank them every day in my prayers.
I believe in the power of positive thinking and have always taken care of my special kidney with just common sense. Lets all help by getting involved in any way we can.
One weekend my youngest son Gary, who was 15 at the time, was unwell. He'd had a headache all weekend and the pain relieving medication I'd given him wasn't helping at all. On the Sunday afternoon just as I was leaving for work, he told me that his ‘wee' was a red colour. I asked him to collect a sample and show it to his dad the next time he went to the toilet.
A few hours later I received a phone call from my husband to say he had taken Gary to see a doctor who was admitting him to hospital straight away. He was diagnosed as having Glomerulonephritis (which is a kidney disease) and spent about 10 days in hospital.
Several months later the problem occurred again-and again I was at work! This time the doctor wanted us to take Gary to a hospital in Melbourne to see a kidney specialist. Gary went on to have a biopsy and was diagnosed with I.G.A. Nephropathy. This is a disease in which the body's immune system recognises the kidneys as foreign bodies and over a period of time destroys them.
By the time he was 30, Gary's kidney function had deteriorated to the point where he was rushed to hospital early one morning in acute kidney failure and placed on a dialysis machine to remove the built up toxins from his blood. During that period, the doctor broached the possibility that a family member may be able to donate a kidney to Gary.
Although Gary recovered after many days of dialysis, his kidney function tests never returned to normal readings. A year or so after that his specialist suggested to him that he have a Fistula (which is a tube connecting the artery and vein in his arm) inserted in readiness for permanent dialysis-which he was really reluctant to do. Around that time he got a job in Perth and moved over there.
A few months later Gary was started on permanent peritoneal dialysis (this is dialysis through a tube into your abdomen) which he hated as it needed to be done four times a day every day. His new specialist also spoke about the possibility of a family member donating a kidney to him.
I consulted a local kidney specialist regarding the possibility of me being that donor as my husband's blood group wasn't compatible with Gary's.
After many tests of my own general health and that of my kidneys, Gary and I had compatibility tests done and were found to be a match. We flew over to Perth for the last of the tests, which included a third and final compatibility test. I then became the live donor for Gary's kidney transplant. We were amazed at how quickly he became well again. We hadn't seen him like this for years. I recently heard him telling someone ‘from the time I realised I was awake after the operation, I was feeling better'.
Gary was really well for two years after his transplant but unfortunately the kidney was to fail due to an unrelated medical condition. He is now back on dialysis while he waits for another kidney transplant.
A lighter moment after surgery with a Kidney dish!
A very special Christmas
In December 2010, I donated a kidney to my older brother Stephen at the Royal Melbourne Hospital. The decision to donate was a quick one, but the process to do so took over a year. I travelled to Royal Melbourne Hospital twice before the operation and met the surgeons, anaesthetists, coordinators and physicians.
From my home town in Nowra, 1000 kilometres away from my brother, it all had seemed rather disconnected and surreal at times but those trips to Melbourne where I would meet him for our tests made me realise that this all made sense. His condition was deteriorating and when I saw this, I was completely comfortable with my choice to donate.
One great thing about live donation is that you know when it will happen. This gave me the best chance of being as physically and mentally prepared as possible. I made sure that I researched the subject and spoke to other donors to learn as much as I could before the surgery. This helped me, my partner and children to have a clear understanding of what was in store for us.
The transplant was successful and both of us were home for Christmas-which was spent quietly recovering. Stephen is now doing really well and I notice no difference in my health now that I only have one kidney. I feel so glad that I could make such a difference to someone's quality of life.
Support from family and friends was there before, during and after the event and for that I am so grateful. When I think about my experience, I remember I wasn't alone. Stephen and the rest of our family members had also gone through the whole experience too. We did it together.
Liam in the arms of his dad recovering from his life saving 15 hour transplant, and Liam all grown up, running on the beach.
A child on a journey
I am a child on a journey
How long it's going to be
I'm not really sure you see.
I've had to take the long way
On this rough and bumpy road
But my engines not running properly
So it's going to be quite slow.
I've called the mobile mechanic
He say's I need a ‘miracle', my engines in bad repair
He simply cannot help me, much to his despair.
I must keep on my journey now
Because it's only just begun
I have far too much to see and do; it should be lots of fun
I think I'll just chug along now, see how far I get.
The road ahead seems much too far now
I'm getting rather weary
I think I'll pull on over and rest a little while.
I must have slept a little while
When on my window I heard a little tap
It's a weary fellow traveller
Who asks if he can help me
As I awaken from my nap.
I reply, I have a major problem
My engine's very sick
I think my journey's over
It's been very very quick.
This stranger leaned towards me
And whispered in my ear
Why don't you have my engine
It's no use to me now
You see my journey's end is near
And yours has just begun.
He leaned across my dashboard
and turned on my ignition key
Now my new engine
Sounded just perfect to me.
This humble fellow traveller
Wished me on my way
I thanked him very kindly and asked how on earth can I repay?
He asked me
If you see a fellow traveller stranded on the side
Don't just drive on by them
See if you can help them, he replied.
No matter how small your help may be
The kindness you have shown
Will be returned to you on ‘Your journey home'.
Farewell he nodded to me
When I see you at the finish line
Come sit a while with me.
I will get to see the things I want now
If the road ahead is smooth
Or if it's bumpy too
That's just fine with me now
Because I've been given this new engine
I'm going to treat it well
I have had this second chance
To have my journey too.
Notes on a Transplant
Six years ago I started asking people to show me their scars. One mid-winter, Tony showed his zipped-up ribs. Then Pauline; a diagonal crease across her front. Mary-Jane; a new lavender line over coffee in a restaurant. A kidney; their spare, donated for a daughter, a son, a husband.
It took some doing. There were cigarettes to give up, wine and spirits to cut, kilojoules to burn, and months of testing before they were accepted.
My sources endlessly repeated their stories on request until the final question, "Pauline, what will I feel when I wake up?" Her jade irises flashed, "you will feel shit. But there's morphine and these days there's no need to feel pain."
The jacarandas revive exam time memories the day we go in. Our daughter at the wheel of my mum-mobile, our four kids 16 to 25 braving the knowledge that mum and dad will soon be out for the count.
At 7.30 the kids and I have a group hug and they go to their dad. I went to pre-op checks; height and weight and blood pressure. Then on to a bed with my unfinished book, along a glass corridor, between trees and sky, into a small room with my back to the main action. I meditate on the last visions held in my mind's eye and hold the kid's hug until cheery staff interrupt, and someone apologises to someone else for missing a vein in my right hand.
Warily I say ‘It's my right kidney I'm having removed. Can I mark it?' Someone hands me a purple pen and I make an X on my stomach and scrawl R. I don't care about the size of the scar now. I want enough vein and artery taken so it can easily be reconnected to my much larger husband. The last I remember the surgeon is stuck in traffic and the anaesthetist asks if a phial of milky liquid looks familiar.
Waking up I see their faces all at once, ‘my darlings, I'm fine'. Down the corridor dad's kidney is working well, ‘that's fantastic'. And dinner; plastic tubs of chicken soup, orange juice and red jelly will never, ever taste as good again. Awake all night I thrill to updates longing to see for myself.
He stays longer until finally on our first night home he gets up five times to pee. ‘Hallelujah,' I call sleepily, unlikely jubilation for any other middle-aged couple.
A Rainbow Poem
Who'd want my heart, it's cold and black
But God told me not to bring it back.
He said to leave it from where I came
Others could use it just the same.
My eyes and all other parts as well
Don't take them to Heaven or to hell.
So everybody when you go
Check all your organs at the front door.
Help save a life with what is yours
Sign up to donate, it's a worthy cause.
Eyes See All!!!
My name is Melissa and I consider myself to be very fortunate. I was diagnosed with a corneal disease, Kerataconus, 23 years ago at the age of 21. I was told then that should my condition deteriorate I would require a corneal graft, ‘though we don't do many of those'.
In my late thirties I was devastated to learn that I was ‘technically blind'. As my condition was a gradual, slow deterioration, I had no idea how impaired my vision really was, I just adjusted. I had a young daughter, did office work and lived life, unaware how serious my condition had become.
My name was immediately added to the list, as a corneal graft was my only option. A very daunting thought! I am fortunate to have been the recipient of two beautiful donor corneas.
I remember my first real venture back into the world of sight. It was one morning and I looked out the window. I could see veins on leaves, specks on concrete, tiles on roofs and I could see for a mile (well I thought so anyway) - I broke down! I wanted to tell the world that I could now see its beauty in its entirety.
There is mixed feelings associated with being a tissue recipient. There are feelings:Sadness-you are aware someone else has passed to enable you to have the gift of sight.Gratefulness-to those who made the ultimate decision at such a difficult time in their life.Thankfulness-to my donors for giving me a gift which will always be remembered
I have learned that since being diagnosed with a corneal disease, the reason not many grafts were performed was that there was no medium to store the cornea until transplantation. Over the years such a storage medium has been developed.
It has been seven years since my last graft and I recently visited my wonderful opthamologist, who is very pleased with my progress. I love my glasses, love life and will always be grateful for my very precious gifts.
Enjoying the Gift
A Special Gift
While you are reading this I may be admiring my newly painted bedroom walls, switching on the television set or planning my next overseas trip. I might read a book or magazine, choose a recipe or perform any number of activities which we ‘sighted' people take for granted.
A few years ago I was warned that eventually the ability to see my young grandson, my family's faces and the beautiful world around us all would be lost. I was devastated.
But during the last two years the gift of sight was given to me by not one, but two, human beings whose corneas had been donated for use in eye surgery.
Nowadays I ask everyone that I meet to discuss and decide to donate organs or tissues.
Someone, somewhere, will receive a most special gift.
After transplant you can do anything.
A liver recipient - July 1988
I received a liver transplant because I have a very rare disease called Wilson's disease. Six months after my 25th birthday someone noticed the whites of my eyes were yellow. Six weeks later I was in a coma in hospital with complete liver failure and only days or hours to live.
The doctors decided to risk giving me a liver transplant and a donor liver became available. It worked. I awoke 24 hours after surgery after being in a coma for ten days. I had lost 30-40 kilograms in weight, spent several weeks in intensive care and had no strength. I could not even roll over in bed.
I was discharged six weeks later and went home where I promptly caught pneumonia and had another four weeks in hospital. But my strength was slowly returning and I went back to university and played sport. I even went skydiving again.
In the many years since my transplant, I have competed at the Australian Transplant Games and been fortunate enough to represent Australia at the World Transplant Games.
I completed my PhD in 1992 and now work as a medical researcher. Few people, including medical practitioners, can tell that I have had a liver transplant. I do normal things (except I don't drink alcohol) and best of all, I enjoy the gift (of life) that I have been given. I have fewer days off sick than most of my work colleagues.
I am extremely thankful that the donor's family considered and consented to organ donation when their relative died. I have written to my donor family through the Red Cross to thank them, but of course no words are enough. My living a full life is the best way I can think of to thank the donor and their family.
Even though it is now more than 20 years since my transplant, every year, on the anniversary of my transplant, even though I don't know the name of my donor or what they looked like, I remember my donor and I thank the family for their decision.
The Value of "thank you"
My wonderful husband who appeared to be the picture of health suffered a massive stroke. Having completed 10 ultra-marathons, playing touch rugby, coaching my son's rugby team and having a recent check-up with the doctor, we were in disbelief when the doctor in ICU told us that John had suffered brain death.
The next words from this doctor were ‘have you thought about organ donation?' I knew my husband's wishes and in keeping with his generous nature, my children and I agreed to donate his heart, lungs, kidneys and corneas. The trauma of watching him being wheeled to the operating theatre-knowing that any hope of recovery was about to end, haunts me still.
Many people thought we should find comfort in this generous donation. I'm afraid I couldn't at the time. A few months later, we received two thank-you letters/cards from the families of recipients. These were much appreciated. My husband donated seven organs and we received two thank you notes! I send ‘thank you' cards for flowers and food, but many recipients haven't said thank you for a gift that potentially gave them life. It makes me wonder.
My advice to recipients who wonder about saying thanks is-DO IT! It can't possibly make the family feel worse knowing that someone values the gift and the chance they have been given.
I am on dialysis every second day at home, totally dependant on my wife and kids (11 year old girl and 14 year old boy) once on the machine. After years of poor health and failing kidneys, I am slowly getting back to normal after a bi-lateral nephrectomy. My left kidney weighed 6.8kgs and the right 7.2kgs when removed.
I have been on the transplant waiting list for a year and a half. I am trying to have a normal life with my family on every other day, but it is very difficult. I dream of the day when we can go on a family holiday-before my kids grow up and it's all too late.
I have had one failed attempt at a renal transplant where the surgeon cancelled at the very last second. I am so very happy to have had one chance. My thoughts and huge gratitude go out to the wonderful donor family that almost gave me the chance to get back to normal. Hopefully one day it will happen and be successful. I encourage everyone to talk about organ donation. Donate life!
A New Kidney & New Life
Donald is a very grateful person who is pleased to tell his story in DonateLife Week. He hopes that people will see how a transplant can give a new life and that they will sign up to donate organs.
After recovering from nephritis in his later school years he was left with only forty per cent kidney function. He went on to an apprenticeship in building and later went to Darwin to work after cyclone Tracey. After a few months there, he suffered complete kidney failure and was flown to Sydney's St Luke's Hospital and started dialysis.
He decided to have his treatment at home at night so that he could return to work each day. His mum, dad, Heather and I supported him by learning to help with the operation of the dialysis machine which was installed in their home in 1978.
Both Heather and I offered to donate a kidney and both were a suitable match. I chose to be first with Heather as a back up if things didn't work out. The transplant was carried out after about six months with unbelievable results. The donation of my kidney was the most rewarding experience of my life.
Donald and I are the longest living kidney donor and recipient at the Royal North Shore Hospital Transplant Centre. Both of us were invited to celebrate this at a presentation by the NSW Governor Marie Bashir and Dr John Mahony. The latter organised the transplant and made the procedure a lot easier with the friendly and ever available help. He has looked after the pair of us for the thirty-two years since the transplant and has become a very valued family friend.
There is now an excellent renal specialist, Dr Razak, in Coffs Harbour, as well as a wonderful Renal Centre at the Coffs Harbour Base Hospital with very experienced and exceptionally caring nurses and support staff.
Donald went back to building and obtained a full building trade licence. He has built numerous houses in Urunga and Coffs Harbour. Donald was also able to return to his love of surfing and surf lifesaving-including beach patrols. He has been recognised with Life Membership of the Urunga Surf Club. He has been well supported by his loving wife, Debbie.
It would be wonderful if more people would sign on to donate life and give other families the opportunity to enjoy the experience our family has had.
We are an organ donor family. When 16, I signed up for the Australian Kidney Foundation scheme as a potential kidney donor (the only transplant available then). Subsequently I have been a blood donor.
Most of my family have signed up including my brother Ian (but called Eggy and then Bluey in his later years). Bluey was a hard worker with a strong interest in Australian history and literature, a great sense of humour and was a keen metal detector. He was devoted to his wife and family and well before his death became a non-drinker. He never smoked or took illegal drugs.
Bluey retired at age 55 and spent a lot of his time on Melbourne beaches searching for hidden ‘treasures'. He was very successful at it.
Bluey was attacked and suffered severe brain injury. He had not provoked the attack. Seven weeks later he died while in rehab. Those seven weeks were a roller coaster of ups and downs as he moved from high dependency to ICU and back to the high dependency unit before being sent off for rehabilitation. He had a brain injury but it was important for the family to see that his sense of humour and personality remained intact.
When he died, I knew that he wished to be an organ donor and alerted the ICU staff to this fact. He donated his liver, spleen, pancreas, skin, bone, and his kidneys. Ironically the cornea bank was full and they could not take his corneas.
As it was a criminal matter I was required to formally identify his body after organ donation. He looked the same. In Bluey's wallet I found three organ donor cards of various vintages. On one he had written ‘Don't hurt me, I bruise easy'. This was an example of Bluey's keen sense of humour and I read it out at his funeral.
A few months later I received an anonymous letter from a recipient of one kidney expressing how Bluey's donation had changed her quality of life dramatically.
In the weeks, months and years after Bluey's donation, the fact that he did donate helped my family and myself immensely. I would recommend that everyone consider becoming an organ donor and sign up. It is about the best thing that you can do for fellow Aussies.
Dr Geoff Crawford.
Day after surgery
The Valve that saved my Baby's Life
My baby boy was born on Valentine's Day. He fell sick after three days and was rushed to the Westmead Children's Hospital. He was diagnosed with Aortic Stenosis. He was unable to breathe on his own and they had to perform the Ross Procedure at five and a half weeks. This was to move his pulmonary valve to become the aortic valve and get a donor pulmonary valve.
It saved his life. He was able to breathe on his own again after six weeks. It was still a rocky journey after the operation but he is still with us today-and happy. He will need future surgery to replace the pulmonary valve with one that has been donated about every 10 years.
What a friend
My wife started dialysis in 2002 when she also found that she was born with one kidney. After being on dialysis for two years her dearest friend started the process of being tested and was accepted as a suitable live donor.
The transplant was successful but the kidney was rejected after about six months. After the kidney was removed she was on dialysis for another three years. She received another transplant from an unknown donor in Queensland.
This kidney lasted about nine months until it too rejected and lead to her death in 2010. During her time on dialysis we both managed to travel overseas and get treatment while we were on holidays.
Even though my wife died it was the skill and dedication of the hospital staff that kept her going for as long as she did. Please become an organ donor.
A handsome man indeed
Do Not Go Gentle Into That Goodnight
Warren was my youngest brother and he was also a dear friend. Warren was also very close to my other brother Greg and the three of us grew up together, bonded by blood and love—we were inseparable. As brothers three we would live, socialise, laugh and make mistakes together. Our lives were full, exciting, serious and wild.
Our mother Margo would display the wisdom of Job and more importantly employ the patience to watch an ice age thaw as we boys, with carelessness and with impunity, enjoyed our lives to the fullest. We three boys embraced life in a fashion that was seen and noted by many observers as impressive, tasting whatever delights life could serve up yet without a hint of selfishness or over indulgence.
We were imperfect and some would say occasionally ‘found out’ but we consumed life without fear or favour. As brothers we were courteous and polite, ready with a smile or an antic that would bring rapturous joy and delight to many, if not all, that came in contact with the three of us.
Warren especially had a sense of humour that knew few bounds and his larrikin ways were the stuff of legend.
One morning, just three days prior to Warren’s 26th birthday, tragedy struck and Warren was in an accident that involved a massive head injury. He was induced into a coma and kept alive by life support. Bravely young Warren hung tough and occasionally brief signs of life would inspire hope but after an overwhelming three day bed side vigil and enormous effort from a team of doctors and nurses displaying a courage and strength few could imagine, all the best joint efforts in the world could not revive Warren from his deep coma.
Sadly on Warren’s birthday a decision was made to turn off his life support. My youngest brother was ‘officially’ pronounced as deceased two days later. From that second on our lives were changed forever. A mother and father would lose a son far too prematurely and three brothers would be torn apart forever.
Warren was a fit and strong young man. While under immense distress, but sensitively and politely, we were asked about the delicate subject of organ donation.
Warren was generous and in keeping with his spirit and self-sacrificing attitude in life we wanted to preserve and continue his legacy of giving. It seemed not only the right and moral thing to do but it was in keeping with Warren’s lust for life. We were convinced that Warren would have wanted, indeed he would have demanded, the brave choice be made that in death he would generate life in others. It's with immense sadness I write these words but it must be acknowledged that during an event so disastrous, incredibly, happiness can be found.
I hope Warren’s recipients are living prosperous and fulfilling lives and that my young brother's ‘light of life’ glows on and shines bright in others for eternity.
Waiting for a transplant has cost me my job
I am waiting for a transplant to have a normal life again.
I was born in Hong Kong and came to Australia in 1984. I live at Westmead in Sydney. My sister also lives in Sydney.
I have been a nurse since 1973 and a nurse at Westmead Hospital in Sydney for 25 years working in Radiology and previously in Midwifery.
I had to resign from my position at Westmead as my disease got so bad.
In 1993 I was diagnosed with Sjogren’s Syndrome, an auto-immune disease characterised by dryness. It has affected my whole body including my glands and organs. As a result my kidney function has deteriorated.
Two years ago I was put on the organ transplant waiting list. Every day since then I have had dialysis. I do this every night at home. There are many other people who have been waiting longer than me. This is my life now – it revolves around dialysis.
I had to give up work because I have very low blood pressure in the mornings.
I would really like to have my kidney transplant so I can live a normal life again.
I want to encourage Chinese Australians to donate their organs and tissue as they can help save lives in our community.
Waste not, want not
For me, the decision to donate dad’s organs was obvious, but it was not easy. I always knew what my dad thought about an issue, even if I didn’t want to know! Dad was a man of strong convictions and an incredible work ethic. He was funny, tough and incredibly clever.
I knew dad would want to donate his organs. He was very pragmatic, why waste what could be used? However, trying to discuss this decision with your family is incredibly hard. We were in various stages of shock, grief, anger and bewilderment. I think dad’s strength of character was the deciding factor in helping us to make the decision to change another person’s life for the better. Amongst the confusion I focused on the people that might have been waiting for years for an opportunity to live a healthy life.
Our family had spent three days in the intensive care unit of the hospital hoping that dad would survive. To then switch our mindset to contemplating his death and organ donation was a significant shock. Like my father, I’m very pragmatic and practical. I knew it was the right thing to do. For other members of my family, processing this information was too much to comprehend. We talked and we fought, until finally the decision to donate was made.
The comfort we have, knowing that dad was able to help so many other people is very important. Dad was an optimist. We believe in looking for the good amongst the bad. Organ donation was our hope that dad’s strength might provide a new beginning in life for an organ recipient.
Organ donation presents a very unique and sometimes overwhelming decision to families, but its potential to create powerful change makes it more than worthwhile.
Ron, Sandra & Karen
The day our family changed forever
My sister was a special person from the day she was born, as she entered the world on Christmas Day. Our family—mum, dad, Donna and myself had discussed organ donation as a family and all agreed it was a good idea, but never thought it would happen to us.
Mum, dad and myself said goodbye to Donna as she got into her car to drive to visit her best friend. Life changed forever that day when mum and dad received a phone call from John Hunter Hospital to say Donna had been flown there and was in critical condition.
When we arrived, doctors explained that Donna was on life support. The shock is unexplainable and it is not a situation that anybody ever expects to happen. A Donor Coordinator was sent to talk to us and said Donna would be a candidate for donation. Our decision was an easy one as we knew that’s what Donna would have wanted. We knew this because we had already had the discussion.
Donna was pronounced brain dead and her organs were removed. Two children and two adults received organs and a new life. This has given our family some comfort over the years, knowing some good could come from our tragedy.
Donna wasn’t speeding or doing anything wrong, she simply leaned over to change a cassette tape in her car and lacked concentration for a few seconds, which we have all done from time to time. Nobody thinks it will happen to them but if it does, you need to know your loved ones wishes. That’s why it is important to discuss it with your family. People need to ask themselves if their child needed an organ, would they accept it? Of course they would, so people also have to be willing to give.
Ron, Sandra and Karen
I was only eight years old when my sister became the second person in Australia to have a kidney transplant and the first Tasmanian.
I would like to thank that donor’s family for giving my sister a chance at life. She lived for another 14 years though passed away when she was 31 years old. It wasn’t from the kidney transplant—it was from cancer.
My own daughter had the same thing wrong with her and we went through many difficult times. I found out she had reflux when I was pregnant with her. You can see that over the years things have changed—technology too. She is now 28 and living with kidney disease, but is managing OK.
One day she might need a transplant, though we will look to see if family or friends are compatible. I am sorry I have no photo of her or my sister.
Mr Peter Dann - In the business of saving lives...
I didn't give you life but I can give it back to you
Age 33 I started getting headaches. Not ordinary headaches, the kind that stops you from undertaking your everyday tasks. After seeing a succession of doctors, I never suspected the diagnosis that lie ahead.
I’d lost 85% of my kidneys to the disease known as the ‘silent killer’. I was advised to go to hospital. That week I heard many frightening words; chemotherapy, potentially sterile, steroid treatment, dialysis, transplant.
My stepfather Pete said with a quietly determined look on his face, ‘I’m sure we have the same blood type; I’m going to give you mine’. He said to Mum, I didn’t give her life, but I can give it back to her.
I dealt with my diagnosis with a trip to the USA to realise my lifelong dream of seeing Dolly Parton. My sister, partner in crime and best friend came along. I didn’t know what my future held and the doctors advised against it, but I was determined to go and needed the distraction.
Whilst away I got sick and was hospitalised for six weeks. Testing for a donor match takes six months and Pete was passing all the tests.
The transplant was performed within a day or two of needing dialysis. We broke a record. The fastest transplant performed to date at that hospital. My kidney levels came down at a screaming pace. The doctors jokingly pointed out that I was going to run out of creatinine and I responded with, 'even Pete’s organs are over achievers'.
I have renewed health and my quality of life is restored. Pete still down plays the whole thing. I’m still in shock and awe over the magnitude of what he did and there are no words to convey my gratitude. It scares me to think I would still be on that long waiting list.
Recently at a wedding my uncle joked about ‘Pete, such a generous man, he’ll even give away his kidney!’
The waiting list for a kidney which covers 70% of transplants is four to seven years.
Me today, living life to the maximum... lol
Gift from my mother
If you ever have a doubt about organ donation then please read my story.
I was sick for a year before eventually being diagnosed with chronic renal failure.
My first thoughts were - 'no way, I am only 25 and stay fit by playing sports, they must have it wrong' - but they were right.
We went through all the tests and I spent almost a year getting healthy enough to receive a kidney transplant from my mother - God bless her.
It has now been over 15 years and I am lucky enough to have a beautiful family of my own and I live life to the fullest. The gift you give WILL change or save a life and in turn can fulfil other people’s lives also. Please register to donate today.
Brad and Lyall
Brad’s life back on track
Our 31-year-old son Brad was suddenly diagnosed with end stage kidney failure. You soon learn what faces you- dialysis, transplant or death. Brad commenced haemodialysis at St Vincent’s Hospital Melbourne for 3 months, then opted for peritoneal home dialysis. It was impossible for him to work as hospitalisation and being hooked up to a machine for 10 hours a day, seven days a week ruled his life.
As a family, we were told there would possibly be a five to seven year wait for a deceased donor transplant. We decided to offer Brad a better quality of life and see if we were compatible as living donors. The transplant team chose me, his father.
The living transplant took place in April. This was both successful and rewarding. Brad was back in full time work six months later and I went back to work after two months. We are both well at the moment and must commend both hospitals and medical teams for their support which still continues to this day. Both my wife Lynda and I have since registered on the deceased donor register as we realise in death our organs will be of no use to us, but may be used to help someone in need.
We are actively promoting the Australian Organ Donor Register and will continue to do so until we pass on. Don’t wait until it’s too late. We encourage all Australians who are not on the Register to come aboard, as others in need will continue to face our situation in the future.
A child's donation
My eight-year-old daughter Georgia fought a hard battle for nearly two years with a brain stem tumour. Georgia was given a six to twelve month survival prognosis. This tumour attacks children usually between the ages of five and nine years of age.
The day we all never wanted came and Georgia passed away in January. The thing about Georgia was she was still functioning as a normal child- playing football, going to school and doing everything a normal child would do. That was our true miracle. Most children end up in wheelchairs—unable to talk, eat, walk and eventually go blind. We were so lucky.
The tumour was removed. Most of the tumour was sent to St Jude’s in Memphis USA while some went to the research centre at Princess Margaret Hospital.
We were so positive about donation. When we received the results back from the tumour, I went through a very negative patch for a few months.
Thankfully I have come through this and now believe that this was the best thing we could have done. I want to say to others in the same situation, donate tissue if you cannot donate organs. A cure for disease will only be found if you can do this.
Good luck to everyone embarking on this difficult life journey.
Maggie Angel, Georgia's mum.
Seeing is believing
The gift of sight is a precious one that many take for granted. I am not one of those people. When I was born with an ulcer on my left cornea, my parents were understandably devastated. The idea of me not being able to see the world in all its wonder and beauty crushed them. All, however, was not lost. My parents had me placed on the donor list, and at the age of two I had a corneal transplant.
As a child I was frustrated at what I had to go through. I remember drops that stung my eyes, tedious exercises and again that ugly patch I had to wear until I was school aged. I also remember countless visits to the specialist, and bright lights that seemed to burn through my eyes into the back of my skull.
I didn’t realise then how truly blessed and lucky I was. My parents had patiently sat with me, giving me drops and making me do my ‘tedious’ exercises, trying to make my eye as strong and healthy as possible.
I had a kind and brilliant surgeon who gave me so much of his time on those ‘countless’ visits—often at the expense of other patients. Most importantly, I now appreciate the miracle that happened. Someone gave part of their eye for me.
I am so very grateful. I am grateful to my parents for their constant love and support. I am grateful to the surgeon who miraculously performed my intricate operation, and I am eternally grateful to the wonderful and generous person who gave me the gift of sight through organ donation.
An Unknown Angel
Hi my name is Aleisha and I am 33 years old.
I was diagnosed at a young age with Alports Nephritis, a genetic kidney disease. This type of disease also effects my hearing and eye sight and I consequently starting wearing hearing aids by the time I was at pre-school.
I have always had a positive attitude with my Alports and did my best to look after my health. So after 22 years of relative good health, I started dialysis and 'obeyed by the book' my dialysis treatment (CAPD) for three and a half years.
I never really thought about transplantation while I was on dialysis, apart from having a mobile glued to my side 24 hours a day. I always focused on dialysis and the 'here and now'. It’s what I needed to do to stay alive and that was keeping me centred!
Nothing can prepare you for when the phone rings at 10.30 at night and you’re alone in bed on dialysis and after answering you hear, ‘Aleisha, would you like a kidney?’.
Your chest tightens. Its like time suspends and after a short time, you remember to breathe. 'Aleisha? Breathe, your about to receive a gift of life'.
I am 33 now and have been so thankful and happy for the years of being dialysis free!
I know it is hard for most people to understand what it feels like to be given life, and the easiest way I describe it is like this.....I wouldn’t be here today if the family of my donor said no to donation. I will be forever grateful and humbled to my unknown angel.
Being told that I had liver disease and needed a liver transplant came as a relief, as finally someone had told us why I kept getting crook and being admitted to hospital all the time.
After an initial work up at the Austin Hospital we were placed on the transplant waiting list with no guarantees. We had two false starts where we were called but sent home because of different complications. After twelve months on the list we received the call that was to change my life completely. To go from close to death to being well in a matter of weeks was unbelievable.
The doctors and nurses that perform transplants are nothing short of miracle workers. I need to take medication every day for the rest of my life, as well as monthly blood tests and regular visits to the doctors but I am very lucky.
One of the hardest things I did was to write a letter of thanks to the donor family. I was taken aback when I received a letter back thanking me for my letter.
If they hadn't discussed organ donation I wouldn't be here writing this, so thank you.
Dana & Andrew
Andrew's New Heart
After being at end stage heart failure the time had eventually come for me to be implanted with a Left Ventricular Assist Device (LVAD) to keep me alive until a donor heart became available.
Arriving at the Alfred Hospital in Melbourne to talk about the LVAD, we were informed a donor heart had become available. Suddenly it was all go, and within a short period I found myself spending a lot of time in my ward gazing out of the window at the contorted figures sculptured by steam rising from the hospital generators. As these strange and disturbing shapes vanished into the atmosphere, I realised I had a lot of healing to do.
I was aware that steroids could cause mood and sleep disturbances, however tears were to flow freely while my life was examined over and over with all the joy, regret and guilt such nostalgia brings. As time progressed, our routine became an ongoing round of clinic visits, education and carer sessions, biopsies, gym sessions and other cardiac investigations.
My partner and I were to meet many other transplant recipients and their carers. Returning to my home state after three months recovery, I quickly joined the gym and now three years on I remain an active member two to three times per week.
A chance for better sight
A few years ago I was told I needed a corneal transplant, and was placed on the waiting list. I had no idea how long the wait would be, but hoped it would not be too long, as my husband was already registered as being legally blind. I saw the surgeon again six months later, and was told it shouldn't be too long to wait.
Two weeks later, I had the call to attend the hospital for surgery and the operation went well. It is impossible to stress how grateful we both are for the gift of a cornea, and the surgeon tells me the graft is looking good. I'm told the sight in that eye will continue to improve for about two years.
Many thanks once again to the donor and family who made my transplant possible.
After a long illness, I was lucky enough to have been offered a liver transplant. The medical team were wonderful, but they can only perform these life saving operations when they have donated organs with which to do so.
I have been so fortunate. I am well, and am enjoying life with my family, friends and two beautiful grand daughters.This would not have been possible if someone out there had not made the difficult decision to donate. I will always be grateful, and I hope that the donor family have found consolation in the fact that they have given the chance of a second life to another.
As an artist attention to detail is important - a work I completed after my surgery.
New vision for a young artist
I was driving along Mounts Bay Road to a clinic appointment last week and I was amazed by the shape of the ripples in the river and the crispness of lines in the big old trees. Once I arrived at the clinic, I found I could read one more line on the eye chart since last months visit! These 'small' joys make me realise the gift of sight is the most valuable thing I have ever received.
A couple of years ago when I was 18, I received my first corneal transplant. It was a tumultuous and exciting time for me. I had just moved out of my parents’ house to a new city in order to study a fine art degree at university. I had been chosen to exhibit in the Year 12 Perspectives at the Art Gallery of WA. Since I was eight years old I had been coping with only one eye capable of vision with aids. That was until I got the call on a Friday and I was in surgery on the Monday.
Recovery was a challenge and journey, and it was often very hard to cope with. But everyday I experience amazing feats of vision that, as an artist and a person, are invaluable. I cherish my new cornea and the donor who so generously allowed me this gift.
My experience with renal failure
At the age of 15 my health started to deteriorate and by the age of 20 I had my left kidney removed. I managed to live a fulfilled life for thirty years except the doctors said I could never have a family because of my renal condition.
At this time in my life I adopted two children aged five and seven years. My health remained stable until I began to have more renal symptoms and I ended up on dialysis.
I had home haemodialysis for approximately eight years until I began to reject all forms of dialysis and ended up in hospital for nearly a year (so that I could be evaluated each day).
By the end of the year I had become sicker and was dialysed more regularly. I knew that my time was coming to an end and I had no promise of a transplant. I knew it would be a miracle to receive a new kidney.
My family could not donate for various reasons and then my adopted son came forward and the doctors found he was a match. I did not believe in fate until that moment. I feel that adopting my children was meant to be. It is 10 years since my transplant and I thank my son everyday for his greatest gift to me.
When I was just a young girl, I was diagnosed with a rare type of diabetes that made me severely obese. Last year a tragic accident occurred and I was called into the hospital. I was immediately taken into surgery where I received a pancreas. The surgery went well and I am just thankful that I received an organ.
I was so grateful that I have turned my life around. This young person’s family, in a time of tragedy, saw the opportunity to give life to someone else. A tear comes to my eye as I write this. It was the best news of my life and now I have successfully changed my life.
Now I am living the life I had always wanted—with my husband, Mitch.
I have encouraged many of my close friends to donate and I have signed my whole family up to be donors.
Mum's meaning for life—her grandchildren
Mum’s long struggle for breath
I feel that the sad stories need to be told as well as the successful and happy ones.
Mum was a 58 year old who had never smoked in her life. She loved the outdoors and her family. At the time of her death, her grandchildren were four and two. My twin sister and I were twenty-seven and our brother was nineteen years old.
Six years ago, Mum had to quit work because of her shortness of breath. She went from being able to get out on her own, to only being able to get out with me (Leonie) – her carer.
Mum was placed on oxygen at home in January and after three months of going through tests at the Alfred Heart and Lung Transplant Clinic she was placed on the organ transplant list. We were told the average waiting time for Mum’s lung size and blood group would be three years.
After numerous hospital stays and discharges, we expected Mum to come home to be with us last November. She was discharged a final time and came home on a Friday, only to be readmitted on Sunday. Mum was moved to ICU in a bigger hospital and decided that her five-year struggle had to end.
Mum was put on a ventilator (her wish) in the hope of removing excess CO2 from her blood stream. A week after trying everything we could, exactly two years and three months after being listed on the potential lung recipients list, we (her children) made the decision to turn Mum’s ventilator off.
Ashley. His gift saved six lives - his love and smile touched many.
One Chance. One Life.
Ashley. A remarkable young man, a larrikin, a devoted family guy and a true hero.
Ashley was 27 years of age and experiencing one of the greatest peaks of his life, attending the Clipsal 500 race meeting in Adelaide driving his very own V8 Supercar. A dream come true. But in a devastating accident on the track, Ashley’s race and life was cut short.
Ashley had lived his life to its utmost potential. He crammed so many outstanding experiences into his 27 years; almost as though he knew he had just that one short chance, one life.
Ashley grew up in a small town, surrounding himself with noble people, who shared his keenness for life. He had a mischievous humour and a smirk that brought delight to the lives of all he met. But for every part cheeky, he had equal parts genuine compassion and respect. A true gentleman and a true larrikin. Ashley was an incredible son, brother, partner, father and mate.
Following his accident and death, true to his giving and generous nature, he was able to give one final, ultimate gift. He was able to donate life. Ashley was a multi-organ donor and directly touched the lives of six people with his gift. Thankfully as a family we had discussed organ and tissue donation and knew what Ashley’s wishes were and, that if given the chance, he wanted to donate life.
His death was a tragedy that we didn’t see coming and we can’t imagine having made the decision to donate without knowing his wishes. We share Ashley’s story when we can and always encourage families to discuss donation so they know the wishes of their loved ones. For Ashley to be a donor was a true blessing to our family.
Ash didn’t have a second chance at life, of course we - his family - wish he had, but he did make the most of the chance he had, he lived a beautiful life and made us all so proud, he was the rock our family revolved around. His gift gave his donor recipients the chance to live their lives and share their futures with their families and loved ones. They had already battled through sickness and now Ashley’s gift has given them a chance that they each deserve. We think about the recipients often and wish them all a magnificent future.
Ashley will always be sincerely missed, it’s hard to make sense of losing such a precious person from our world. But .... he will always be remembered for his life, his love, and his gift – one chance, one life.
Something good out of something tragic
At 29 years of age our son was killed in an incident at work. It was an unexpected, preventable death.
On that day, one of the first phone calls we received was from a tissue bank. Our son was not registered as a donor at the time but we had often talked about donation as our other son is registered.
When they rang for our permission it was easy for us to grant it. We gave our consent to use whatever they could, as we knew our son would have wanted to do that.
They were able to use our son's two main heart valves to save the lives of two others, a couple of rib bones for reconstruction of a person's face and some skin from his legs and back to help burn victims.
Although we will never get over the loss of our son it is a comfort to know that he was able to help others to have a better quality of life.
Paul Andrew Flynn
In loving memory of Paul—our son
‘If tears could build a stairway, and memory a lane, I'd walk right up to Heaven and bring you home again.’
Paul was 22 years old when he passed away from an asthma attack.
Paul watched a news program on organ donation and one night said to us if anything ever happens to him they could go ahead and use any part of him if it could save a life.
When the doctors at the hospital told us they would have to turn off the life support, one doctor asked ‘had we considered organ donation’—well we didn't have to make that decision because of what Paul had said to us.
It was Paul's wish that made it a bit easier for us. I think it is a great issue that should be discussed with families.
Colleague's Life Saved
My work colleague suffered from kidney failure. Each day she came to work looking weaker and more jaundiced.
I asked her about her situation. She told me she had suffered for most of her life and that she would get progressively worse. She had been on a waiting list for a kidney transplant for many years.
She needed to live in the city to be close to hospitals, should she get a call regarding a donor.
She felt that she could not visit her family who lived interstate or go on a holiday in case the call came. One morning, commuting to work, traffic was particularly heavy. On the radio they advised of a road accident involving a fatality. The traffic jam was more newsworthy than the tragic loss of life or its consequences.
On arrival at work I received a message advising me my colleague was in hospital—but it was good news. Her kidney had arrived.
Rachel and Richard
Our deepest gratitude
Hello, I just wanted to share with you that my husband Rich is celebrating 15 years since his heart transplant. We wake up every morning so thankful, and so much in love with each other.
No words can describe how I am feeling. I am just so happy, yet also mindful of the sadness the family who donated the heart must be feeling. If I could personally say thank you I would for sure. I wish I could.
Rachel and Richard
My husband's story
My name is Tracy and two years ago my husband died suddenly and unexpectedly from an aneurysm in his brain. At the time we had a three month old baby and a 20 month old toddler—two gorgeous boys who would grow up never knowing the father that loved them dearly.
Both Sean and I had spoken about organ donation and knew each other’s wishes—so when the nightmare unfolded it was a relief to be able to convey his wishes and subsequently save six lives without the turmoil of making another decision. This was the one part of the day where I felt I actually made the right decision—one that I knew he wanted.
Sean was always full of life and made sure he lived every minute. He tried to take every opportunity he could and he would be so happy to know that he was able to save lives and give others to a second chance. I will certainly be sharing his heroism with his sons when they are old enough to understand.
I thought I would share my husband’s story so that others may also make their wishes known and hopefully become organ donors. There is no greater gift than the gift of life.
The heart of it all
I was only seven years old when my dad was in desperate need of a heart transplant.
Through the excellent work of Dr Victor Chang and the heart transplant team at St Vincent's Hospital in Sydney, my dad's life was saved. He lived a further 11 years.
I am so grateful to the family whose own personal heartbreak at the loss of a family member was not in vain. They are truly selfless people who deserve so much. As a result of my dad's transplant, I regularly donate blood and have made my wishes clear to my family (along with the Australian Organ Donor Registry). I will never forget the years I was able to have with my dad and I am forever in debt to the family that made that heartbreaking decision.
Life is a gift
My name is Kate and I am a transplant recipient. Four years ago I received a double lung transplant which changed my life forever. That’s why I want to tell you a little bit about my story and how it affected my life and the people around me.
Twenty-nine years ago I was born with a genetically inherited disease—cystic fibrosis. Having cystic fibrosis caused my lungs to deteriorate from an early age.
My health deteriorated to the point where my doctor told me I had less than two years to live and would require a double lung transplant to survive. A year later I was placed on the organ donor waiting list. Not knowing whether I would survive long enough to receive a double set of lungs was the scariest time of my life. Throughout that year my health continued to get worse, where I was spending more time in hospital than out. When I was not in hospital I was house bound and spent most of my day connected to oxygen. This I found extremely difficult as I have always attempted to maintain a relatively normal and active life.
My twin sister returned home from overseas to help care for me as I reached a stage where I needed someone with me 24 hours a day. Most people don’t know that on the night I received the call that they had a donor match was the 19th anniversary of my father’s death. I believe he was letting me know that he was up there looking for a pristine set of lungs just for me.
I woke up from the surgery and felt like I had been hit by a bus. It was all made better when I saw my family around me. It was the first day of the rest of my life. I will forever thank my donor and their family for giving myself and my family a life-changing second chance.
I have always believed that organ donation is all about turning something tragic into something positive.
I am so passionate about organ donation because I am living proof that miracles can happen.
I hope my story will help start a discussion about organ donation. Here is a life that was saved because of DonateLife Week.
My father had been slightly ill with liver disease for a few years. Bloating, drainage, tubes and inability to walk soon became standard events and words in our house. Before that, he was the owner of his own business, a grandfather of two and a father of two daughters. He was pretty active overall.
I received a call from my mother telling me to ‘come home, there’s something wrong; I think he’s had a stroke’. No, it wasn’t a stroke; it was to be the first of many encephalopathy attacks that my father was to suffer. They were horrific for all of us—him, mum, my sister and me. It was gut wrenching to see my father like this.
These attacks turned him into a shell of the man he formally was. He didn’t know his name or where he lived, he couldn’t even drink through a straw at some points. Forever—2am calls. There were many trips in the ambulance and many waits in emergency.
Then his kidneys started shutting down. The liver is vital for getting rid of toxins and without the liver, the kidneys had to pick up the slack. They were getting tired.
Our wonderful hospital team helped his kidneys to kick-start many times. But for each time the kidneys failed, there was another ‘touch and go’ time in ICU, another weakness that he was struggling to fight and another hope that this would all go away was gone.
By Christmas, the liver transplant team at the Austin didn’t feel that ‘he would live if he came home’.
Eventually we were told ‘they don’t get any sicker’. They gave him seven days. Our odds weren’t great, as Dads blood type wasn’t common.
It was just after DonateLife Week that I got a call from Mum. At first, she hung up. I honestly thought he’d died. But, she called back and struggled with ‘we’ve got a liver’. The surgery was a great success and really, he’s had a dream run. He’s now up and moving again, pottering at work and he’s out in his boat. The most important thing is—he’s spending time with his two grandsons and the rest of his family.
I can’t find words that even come close to thanking the people who said ‘yes, I would like to donate my loved ones organs’. To make such a selfless decision at such a harrowing time is something I couldn’t possibly begin to understand. But they have and because of that my father is alive today. And not only alive—but thriving!
I honestly believe that, if it weren’t for DonateLife and the drive they had, that my father wouldn’t have received the organ he was so desperate for. All I can do is thank them from the bottom of my heart.
My son passed away very suddenly. He died within 24 hours of a Grade V subarachnoid haemorrhage (a cerebral aneurysm). He left behind two children aged five and three, a wife, mother, father and sister who miss him greatly.
He was an organ donor and we have received two letters from the people that he gave his liver and kidney to. It is nice to know that both are doing well. It was a very hard call at the time but to know that he has saved the lives of two people is wonderful.
Patti and Mark promote organ donation
Brother and sister
It was the day of the surgery: a laparoscopic nephrectomy for me, Patti (then aged 55), and a kidney to be transplanted into my brother Mark, then aged 45.
Mark had been on dialysis for 10 months as a result of high blood pressure. He had minimal energy, was in and out of hospital and was spiralling downwards into depression. My sister, Lyn, and I were tested and it came back that I was a six out of six, a perfect match.
People would ask if it was a difficult decision, but what had happened to my two brothers years earlier meant the decision was easy. My one remaining brother needed a lifeline. This was a very daunting thought for me, being a healthy person, putting their hand up to be opened up. I did a lot of research and prepared myself physically for the surgery.
I was operated on at Westmead Hospital on a Wednesday and left hospital on the Friday. Both Mark and I recovered well, and Mark is a changed person with a renewed zest for living and a much greater attitude to life and work.
I kept a diary of the lead up as well as the barrage of testing, the transplant day and the days and weeks after for both Mark and myself.
I have written a book called Six out of Six, which tells the journey for both of us. My target audience is anyone considering doing the same, to give hope to those on dialysis, and to raise awareness of organ donation in general.
I am grateful for the grant I received from DonateLife to help with the book launch and for the display of materials from DonateLife.
Mark and his family are very appreciative of this second chance at life. If anything, I am more motivated to stay healthy, as I can't afford to get high blood pressure, diabetes or heart disease.
Phil and hospital staff
Our kidney transplant
My brother, Phil had suffered ill health for five years due to kidney disease.
From the first seminar I attended with Phil and our family, I had no hesitation in putting myself forward for possible kidney donation. This would hopefully eliminate dialysis.
I cannot say the entire testing process was smooth. My immediate family and I endured an emotional rollercoaster certainly there were the ‘up’ moments where I was so pleased to be part of something that will enable a family member to live a long and happy life. Then there were the down times when I was left waiting for results of tests, days where I was off work, my children were dragged around hospitals and told that due to radiation they had to wait in rooms where I could not even see them, and the parking fines outside Fremantle hospital!
These few times left me vulnerable and questioning myself. What am I doing here—I’m not sick. This is all by choice! At the end of testing it was a good result for me and an even better result for my brother!
Yes, the surgery was painful and at times I thought I was never going to recover, but as promised by surgeons, I will be running again at six weeks post op! At the time I thought they were stretching the truth and this would never be possible, but six weeks to the day, I went with my dog for a run and felt fabulous.
I could not have put myself forward for possible donation if it were not for my wonderful husband, who supported me through the entire process—a sounding board for the emotional times, and then taking the household reigns! To him, I am forever grateful!
Phil is well and in good health. His young family are enjoying happy times with their old dad back again, the one who doesn’t tire and has energy to play cricket, soccer, pool swims and lawn mowing without needing a rest. Something they had missed for many years.
To those considering live kidney donations, do it! Your physical life won’t change, emotionally and spiritually you may, but you will change the life of someone close to you for the better. And that is the greatest gift!
Our mum was and still is our hero. You see our mum was a polio victim who was diagnosed when she was only 10 months old, back in 1938. As a result of her diagnosis she was sent away to various hospitals throughout Victoria until the age of 10. Polio left our mum with one leg shorter than the other and a limp, but it gave her a strength and courage unparalleled.
She underwent many surgeries but never complained. One of her favourite sayings was ’there's always someone worse off than you’. At the age of 55, she was diagnosed with cardiomyopathy. This is a viral infection that made her heart muscle so large that it became very difficult for her to continue her work, or do anything strenuous.
Mum gave up her job after 25 years and travelled to the Alfred Hospital in Melbourne where she was assessed as needing a donor heart. She was put on the waiting list and was told there were very few donors, so her chances of transplantation were very low.
Amazingly after returning to her home in the country, my mum got a call after only three days. We were all in shock. She was given the Royal treatment and flown by air ambulance to the Alfred. There was still no guarantee that the transplant would go ahead, but all the family gathered at the hospital to support her.
I flew from Brisbane and arrived after her surgery had begun. This was a terribly anxious wait and coincidently, our daughter's 11th birthday. I remember waiting in a room with my family when the surgeon came to tell us that the surgery had gone as well as can be expected and that the recovery would be challenging.
The first time we saw mum in ICU she had tubes coming out of everywhere. She looked at me and said, ‘Happy Birthday to Angie’. She was always thinking of others even in the toughest and most incredible circumstances. She made a good recovery and vowed to spread the word about organ donation. She spoke to various groups and newspapers and did all she could to promote awareness.
Our mum lived for another 11 years from the time of her transplant. She was and still is an inspiration to us all. Everyone deserves a second chance. We miss you mum- our hero.
Dr Jeannette Young, Chief Health Officer Queensland
Dr Jeannette Young, Chief Health Officer Queensland
With science and humanity what we can achieve
Throughout my medical career I have been privileged to regularly come in direct contact with the organ and tissue donation and transplantation process. It is an area filled with dedicated people doing fantastic work. Whether it is the families devastated by the loss of a loved one making the decision to help another family, the committed staff that make the donation process occur, the highly skilled surgeons that operate through the night to perform the transplants, the seriously ill patients that then come back to good health or the scientists who ensure that the whole process can proceed. Each of them contributes an important element in a highly complex process.
I have always been impressed and proud to be associated with this group of individuals who have shown a dedication to the life extending and life changing processes of organ and tissue donation and have done much to progress the science and ethics of this area of medicine at a state, national and international level.
Whilst it is a tragedy that transplantation often occurs because of the loss of another’s life, the fact that so much good can come from this terrible event is a testament to the combination of science and humanity that work together to make this process occur.
My husband passed away in an accident nine years ago. During his life he helped countless people and in dying he magnanimously donated his healthy organs to others desperately in need and gave seven people a second chance to live healthy, happy lives with bright futures.
The following is a poem I received from a lung recipient, who competed in the World Transplant games in Nancy, France in 2003.
It was not my birthday
but I did receive one.
The difference it’s made to my life
is hard to believe,
I could hardly eat
sometimes could hardly walk.
Then there were other times
I couldn’t even talk.
Then along came a stranger
with the best gift one could give
a new set of lungs
and now I can really live.
I feel for the family
the sorrow they must bear
their sadness I will share
the rest of my life.
They all now play a part
and for this I say thank you
from the bottom of my heart.
Ivan and Steve
Someone was looking after me
I emigrated from Croatia to Australia in 1959, first arriving in Melbourne and then moving to Adelaide before finally settling on the new capital being carved out of the limestone plains in Canberra. At that time Canberra had a large Croatian community and I felt at home in this new growing city. I married a local girl and started a plumbing business and a family.
After feeling tired and unwell for some time, I was finally diagnosed with Hepatitis B. Back then there was not that much in the way of treatment for the condition. I again started to feel unwell and was told by my GP that my liver was failing.
When you are having liver problems, you have no energy for any kind of work and you have to be extremely careful with your diet. No alcohol, no roasted food, no pre-packaged food and no condiments. I survived on boiled spinach, potato with a little oil and pasta with honey. Meals were small portions consumed frequently.
I later became very sick and returned to hospital with severe abdominal pain and lots of hot and cold flushes (which I wouldn't wish on anyone). I was informed that a liver transplant was my only chance of survival. I had a liver transplant at Royal Prince Alfred and the staff (my Guardian Angels) were working overtime for me.
I am extremely grateful to my family, all the hospital staff and to my organ donor (and family) for their generosity. I offer daily thanks to all involved in my recovery and my gift of life.
I would like to offer my appreciation, thanks and gratitude to our dear Lord and all the Guardian Angels who helped during those difficult times.
My twin sister has had kidney disease for the past 17 years and over the last few years her health has had its ups and downs. A few years ago the thought of live donation crossed my mind. Then last March she commenced dialysis three times a week, and without any complaint, she continued working full-time, as well as doing all the things she had done in the past. I still don't know how she did it all! Such an inspiration.
It was then that I got serious about donating a kidney to her. The hospital accepted us and further tests were performed—resulting in the decision to proceed to transplant. The staff at the hospital were very informative and caring and at no point did I ever question my decision, neither did my family.
The transplant went ahead and so far all results have been positive for both of us. We celebrated on Australia Day with her favourite drink. The most emotional time for me was this Mothers' Day when my mother told me how emotional she was at seeing how healthy her daughter was looking following her transplant. I saw her last Saturday and have to agree with my mother. My sister looks very healthy.
It is the most rewarding thing I have ever done, apart from giving birth to my daughter. Without the help and support of my husband and daughter it would never have been possible but the feeling is amazing—to see someone you love have their life back.
My husband and I
A New Start To Life
At the age of 23, I was diagnosed with liver cancer, and told I only had three to six months to live. After lots of chemotherapy I then had liver resections, and the doctors realised my only option for survival was a liver transplant because the tumors just kept coming back.
I was put onto the liver transplant list. It was a matter of waiting and not knowing whether a liver was going to become available or not—my life became a waiting game.
In mid August I got the call that was going to change my life forever. On the way into the hospital I was happy but also so sad for the donor’s family. I was unhappy they were going through such a hard and sad time after losing their loved one. I will never take this precious gift for granted.
All I remember when I woke up was that this was the start to my new life. All the things I can now do after recovery! My dream of being a mother is more likely to come true now and there will be no more stress on my husband and parents.
Now I have been given a new start, I am going to make the most of it. A part of my donor will always be a part of me, and every year I will be lighting a candle on my transplant anniversary to remember my donor.
Aaron at Perth Transplant Games
Aaron was diagnosed with Cystic Fibrosis at the age of one. He spent most of his early life battling the disease with trips to hospital. At 19 he had to defer his university studies due to ill health and was placed on the transplant waiting list. At the age of 20 he was given a second chance by receiving a double lung transplant.
After this he qualified as a Registered Nurse; joined the board of Cystic Fibrosis Tasmania and became its president two years later. He married; bought a home; was prominent in the media; was a leader for the Ready for Life diabetes camps; worked with Transplant Australia to promote organ donation; competed in multiple Transplant Games; was Tasmanian Team Manager for the games held in Perth and won over 15 medals. Aaron took part in the City to Casino fun run; was named Tasmanian Young Achiever of the Year 2008 and also received the Young Achiever Community Service Award and the Pride of Australia Courage Medal in the same year.
All this (plus too many other achievements to list) were all made possible by the gift he received. Unfortunately, Aaron passed away on Anzac Day, aged 29, but he made the most of the extra 10 years he was given and left behind a great legacy.
After his sister Megan was diagnosed with Cystic Fibrosis, Justin was also found to have the condition and from then onwards the life of the family revolved around clinic visits and hospital admissions.
This is part of the story Justin told as he took every opportunity to educate his fellow mountain bikers about organ and tissue donation.
"The mountain bike bug hit me in the late 80s. Riding fully rigid bikes up the bush for hours on end was like mountain biking Nirvana. I rode until the early 90s, as often as I could, even though by then Cystic Fibrosis had taken its toll on my body. My weight dropped to 49 kilos, not a good look when you are six foot tall. I was oxygen dependent 24 hours a day and even the simplest of tasks seemed like tackling the final summit of Everest. The daily grind; shower, shave and breakfast, took hours.
It was a long and hard 12 month wait for my new airbags (lungs). I'd often look out the window and dream about hitting the bush again on the bike. Then a miracle! My new airbags arrived just in time.
Since that time I have raced in Club, State and National cross country rounds. My favourite form of racing is the endurance events - anything above six hours is what I really thrive on. I experienced the ultimate - the Canberra 24 hour race. As part of a four man team, I experienced a mix of emotions; I had finally achieved another goal: to be out on the course with the likes of world champ Trent Lowe. Nine years before I could not have hoped for this!.
Organ Donation is something most people think about doing but never let their loved ones know their wishes. So please, sign up and tell your family. Who knows, one day you or someone you love could need a life-saving organ transplant too. The greatest gift one human can give to another is the gift of life! Be in it!"
Justin eventually needed another transplant (a new set of airbags as he put it). During the first week after discharge severe complications arose and he was re-admitted. Justin died a few days later, attended by the staff who had become his friends and with his mother beside him.
I have heard the most terrible news a mother can hear: my son was killed in a motorbike accident.
Broden was my second son. Growing up with an older brother and a younger brother, there was lots of fun and just as much mischief. Everything Broden did he seemed to do well without too much effort. In his teen years his friends would turn to him for support, as he had reason beyond his age.
When he found a plumbing apprenticeship, his life goals were set to take off.
Then the boys lost their father due to illness. Broden found that hard to deal with. One day, while talking to a mate, Broden decided to give motor bike racing a go. He bought all the safety gear and headed off to race. This seemed to help with his grief and brought a smile to him and the rest of us.
We always had Sunday night tea together so this was the perfect opportunity to discuss our wishes, and that's how I had the privilege of discussing organ donation with my boys Corey, Broden, Curt and Tarlen. The conversation went like this: "Well boys, just letting you know I think we should all be organ donors." Their reply was, "Yep no worries mum, that sound good to us." The boys then decided it would be a good idea to select the parts of their anatomy they thought would be appropriate! We had made a serious conversation into one that wasn't scary or uncomfortable. In the end we all agreed it was just the right thing for us to do.
When the day came that this decision could be put into action, the door had closed. As a mother one of the hardest parts of my grief has been that Broden's wish to donate his organs could not be met. Now though, I'm very proud of my son's generous, selfless wish.
Words Broden lived by: "You never know what you've got until it's gone, so go hard or go home!"
Damian, a loving husband and father
Damian's Gift of Life
Damo was only 35 years old when he died. He was a loving husband, doting father, a son, brother and son-in-law. He was also a very accomplished police officer. He came out of that special mould that makes the best cops. He died doing what he loved.
Although his life ended a long time before it should have, how many people can say that they had it all. Our life was nothing special but we had each other and our children, our home and we were making plans for the future. All of that was taken away in an instant because Damo was doing what he loved best, "catching the bad guys".
Damian was ridiculously fit. It was nothing for him to go and run for a good hour and a half and cover a substantial distance. I would often ask where he was going just in case he didn't come home as planned. He wasn't training for anything in particular but he always felt the need to go to the gym and smash himself. He would come home dripping in sweat and stinking, then leave the gear he'd worn in the laundry sink for a couple of days for the smell to mature until I gave in and threw it in the wash.
We had never spoken of organ donation for him. I was always keen, "If I can't use it and someone else can, please Hon, make the right decision," I would say. I had signed up on the organ donation register but he hadn't. He didn't think there was any need.
Damo had attended an armed hold-up at a Tavern, and being the cop he was, was the first one in. Unfortunately the offender had a shotgun that he wasn't afraid to use, not even on a cop. Damo didn't stand a chance. He died at the scene but was revived by his heroic partner. He came back because his heart was so strong and I believe, because we didn't have a chance to say good-bye. Due to the nature of our job, we hadn't seen each other for nearly two days. This wasn't uncommon, just how it worked out.
Damo and I always went to work with the unspoken promise that we would come home to each other and the kids. Getting shot is always a risk of the job but we never spoke about it, it was always someone else's family on the news having to deal with the aftermath of a "job" gone wrong.
When I was told how bad Damian's injuries were, the first thing I thought of was organ donation. Damo was so fit and healthy, I thought it would be a waste if he died in vain. That's why the decision to donate his organs was so easy. I thought if I could give someone else a chance at a full life then at least something good has come from this. I know that the recipients of these organs will be able to live a full and healthy life, and perhaps even "have it all".
Jason was a fit energetic 27 year old who had just moved from South Australia to Queensland to start a new life. He was working as a carpenter and loved living in Queensland. One day he started to have a shortness of breath and decided to go and see a doctor to find out what was wrong. The next thing he knew he was in an ambulance off to the Prince Charles Hospital as he had an enlarged heart and had been diagnosed with cardiomyopathy.
The next six months of his life were a struggle as he could no longer work and was tired and out of breath all the time. He got so sick and was talking with the doctor about being put onto life support when the doctor received "the call" that they had found Jason a heart. Words can't describe how grateful we were that he had been given this gift. Within one week he was able to go home.
He then received a letter to say he had also saved the life of a 16 year old boy as they could use the valves of his original heart.
He returned to South Australia to be closer to his family where he lived life to the fullest even competing and winning medals in the Transplant Games.
Sadly, one month shy of his six year anniversary, Jason passed away from heart failure. Without that gift of life we never would have had Jason for those extra years. I have always been an organ donor but never really realised just how important it is until it affected someone I loved.
Once only second chance
This is being penned from my hospital bed with about two weeks before I get to go home following a double lung transplant. Most of us get one shot at life and quite frankly a lot of us don't treat that honour with any great respect.
We abuse our bodies and smoke (I did) we eat poorly and drink too much (I did) and we generally wait until something breaks down before we bother to seek medical help.
My actions and unfortunate exposure to toxins earlier in my life saw me on permanent oxygen treatment for the past two years. Given a short term survival rating about six months ago I was extremely fortunate to be placed on the transplant waiting list.
That's right, a waiting list! There are literally hundreds of very usable human organs being buried and/or cremated every week in this country mainly through ignorance of how easy it is to organise to become an organ donor.
The solution is simple – we need people talk to those they love to encourage them to become donors and get the opportunity to give a once only second chance to others.
Anyway enough soapboxing, at least this grandfather will be at home in a couple of weeks playing with eight grandchildren, seven children, a loving wife and family who would not have seen me again if it had not been for the unbelievable generosity and unselfish attitude of a stranger, who I'll never meet, and his/her grieving family.
My organ donor has given me the true gift of life. It is now my responsibility to honour those organs for the rest of my life. I am giving 101% for what I consider is my ONCE ONLY SECOND CHANCE at life. Thank you never seems enough, neither does a million thank you's.
Any other words I seek to describe my gratitude sound hollow when placed against the enormity of your family's grief. So generous donor whoever you are, I now consider you my eighth child and trust that I can make you as proud of me as I am grateful to you.
The joy of a transplant
I was the support person for my friend Diane after she was diagnosed with emphysema. Di was only in her late forties and it looked like she wouldn't see her 50th birthday.
I took her to her appointments weekly or fortnightly at the Prince Charles Hospital. The agony of walking beside her at a snail's pace and listening to her battle to breathe made me feel so useless. She was on the transplant list waiting for a double lung transplant.
Because of a loving, caring family who donated their family members' organs, Di was given the chance to make it to her 50th birthday and beyond. After an operation that took over three hours, the surgeon came and told me that she had made it through OK.
Watching her begin the rest of her life after the transplant was a wonderful experience.
I cannot say enough about the donors, their families and the wonderful medical staff who make these dreams possible.
Everyone who can, PLEASE ADD YOUR DETAILS TO THE AUSTRALIAN ORGAN DONOR REGISTER. You will help save a life and give new hope and dreams to so many.
Our Angel Lucas
Lucas was an amazing little boy who brought so much enjoyment into our lives. Every day was an adventure and he would not let anything get in his way. He enjoyed playing with his sister and his friends, fishing with his dad and mucking around with his dog Jessie.
Lucas has a very special imagination and believed that the Transformers were real. Late one afternoon his uncle brought a very broken jet ski over which had the transformers logo on it. Lucas immediately thought that it was a real one and every day he would talk to it. We didn't have the heart to tell him that it was not real. The excitement in his eyes was just priceless, and the stories that we would hear were unforgettable.
Every day you would hear Lucas singing and laughing which brought a smile to everyone's face. He had a big beautiful heart, he was kind, caring, giving and he was a typical five-year-old with his whole life ahead of him.
Suddenly he became very ill and was diagnosed with Bacterial Meningitis. The wonderful team at Westmead Children’s Hospital did everything that they could to help him, but to our horror Lucas was pronounced brain dead. We were given the opportunity to allow Lucas to donate his healthy organs and we knew that Lucas would want to help. He gave some very special people that much needed chance at a healthy life, and for that we are so very proud of our special little boy.
The love that we hold in our hearts will live on forever and our beautiful son Lucas will never be forgotten.
Brooke, Leah and Aaron
Flying across the Pacific Ocean, the little girl looked down onto the cotton clouds below her and said to her mum, "We're closer to Aaron up here."
That was two years after her mum's best friend had come to her with the news that she could not bear to say aloud. "Leah, Aaron is in the hospital, and he's very, very, very, very sick." Leah could visit him in the hospital when he was better. Anything beyond him getting better had not even occurred to the little girl.
The following few days were a blur in the little girl's mind. A murky sea of flowers, cards, visitors, condolences, tears.
Now looking over the clouds, the girl couldn't imagine the rest of her life without him. Would she survive the first family holiday without the cheeky, playful, energetic, laughing, loving brother she had known to be the cherry on top of the perfect family they had always been? How would anything ever be the same with him just looking over them, not actively participating in this life?
But he WAS participating. Through the lungs that breathed precious oxygen into another. Through the heart that beat inside another's chest. Through the eyes that saw a brighter, more magical world.
Seventeen years later, the knowledge of what those gifts brought to the mystery friends, keeps the little girl (me) going. Aaron's beautiful soul is no longer in need of a vessel, and he was able to offer many gifts of life - I passionately believe that this is the simple duty of all human beings.
My eldest son Barney was a typical boy, cheeky and headstrong, long and lean like his dad. He played soccer. He was into collecting Pokémon cards and playing Star Wars computer games. He was learning to surf and loved being in the water.
Barney was nine years and 22 days old when he died. He fell ill with Influenza A and suffered a febrile seizure whilst in the bath.
Barney was kept on life support for two days, before his organs began shutting down, and he was declared brain dead. Rob and I are registered organ donors. When we were asked if we would consider donating Barney's organs, Rob and I just looked at each other and said yes. That's exactly what Barney would want.
Barney's lungs, kidneys and liver saved the lives of four very ill people. Unfortunately there was no compatible recipient for his big strong beautiful heart, but it was donated to research, along with his corneas. All research conducted adding to the body knowledge, to help save lives in the future.
I don't think you ever get over the death of a child. The pain becomes an ache that never leaves and it doesn't get any easier. You just somehow learn to live with it. We still have Sam, Barney's younger brother, to live for, and we now have a new baby girl Lucy, to tell all our Barney stories to.
We pray for Barney's recipients every day and hope they might find the strength to contact us. In the mean time we thank God for the Gift of Barney and for Barney's Gift.
At the age of 16 months Brett was diagnosed with Type 1 diabetes, the youngest in Canberra at that time.
Throughout his school days, he led a full and eventful life with many school excursions, representing his school in athletics and playing soccer, tennis, golf, cricket and squash competitively, never for a minute letting his diabetes impede his enjoyment of life.
At age 26 he had his own home, had travelled overseas four times, travelled in a 4WD and camped through inland Australia.
He was in charge of a large sports store and later joined our family business as Manager.
At the age of 29 his life changed forever when he had a stroke whilst by himself at home. He was not discovered until 12 hours later. As a consequence, he was left with permanent extensive left side DVT and his recovery to get back home took five months of rehabilitation. His eyesight was affected and he is still unable to read fine print. This is why I (his mother) am writing this on his behalf. His speech and memory were not affected. He is able to walk slowly with a stick, but uses a wheel chair for distances.
In the years that followed, he has worked with a radio station relaying events information and was a police volunteer for nine years.
Five years after his stroke, he had a heart attack and a stent was inserted into his heart. Following this his kidneys started to fail and he was then under care of the Renal Unit at the Canberra Hospital. Talk of a kidney/pancreas transplant was mentioned. Brett fought dialysis for seven years, but with rapidly failing health, commenced dialysis.
To our eternal amazement, the phone call came to say a suitable donor was available and to come to the hospital ASAP for a kidney/pancreas transplant.
All those families who have experienced this miracle would know the feelings of gratitude, sadness for the donors’ family and anticipation of what these wonderful doctors were about to perform.
This dream has been fulfilled. It is now four months since the transplant. Brett is no longer on dialysis, nor after 41 years is he in need of insulin injections. His attitude has always been positive-never down-always with a joke and a laugh. Never resentful at what life has dealt him.
Having been given this wonderful gift, he hopes to go forward and experience as much as he is able. He is now 42 years old.
Thank you does not seem enough to say to the family of the donor who gave Brett the chance of a better life and as we go forward we will never forget to take time to reflect on this wonderful gift.
My uncle Bruce passed away suddenly early this year, just 49 years old. He adored his family and life. His other great love was his farm and his woodwork. He made the most amazing pieces of furniture and always loved his footy. His team was the West Tigers.
When we received a phone call that he was flown to hospital and was in the ICU, our life changed for ever. One day we are all doing our everyday things and the next we are sitting in the ICU being told that our precious uncle was brain dead.
I will never forget when we were asked about organ donation. I put my head up and I said NO. My Auntie turned to me and said 'you know he was an organ donor' and before I could even think my answer was OK.
At the time it was very hard to accept that he was a donor as I knew next to nothing about it. After the process of donation I became aware of what a precious gift he had given to five people.
The support from the DonateLife team has been amazing and to have received a letter from each of his kidney recipients was beyond anything I can explain. After reading so many stories of the gift of life people have given, I am now an organ donor myself.
My uncle has gone but he lives on in these five people and that gift is something not many people can give.
He is my hero and always will be. Our family often think about the people he has helped and even saved. We wish the best of health for them and hope they have a long and happy life—thanks to Bruce.
Love you forever. Till we meet again. xxxx
Jenni (left) with her family, Thomas, Rebecca and Jan.
The benefit of tissue donation
In 1993 when Jenni was 28 years old, she was diagnosed with a malignant tumour in her right leg. She underwent 3 months of chemotherapy before she had major surgery to remove the bone tumour - during which she received a large bone graft from the Perth Bone and Tissue Bank. The surgery took 15 hours, saving her leg from amputation. Following surgery, Jenni underwent weeks of further chemotherapy treatment.
Jenni knows she would not have been able to save her leg without receiving the bone graft; something she says has made a huge difference in her life. She is especially grateful to the donor family who agreed to donation after losing a loved family member; but also to her surgeon, the Bone Bank and for the great support she received from family and friends.
After 5 years of annual check-ups, Jenni was given the all clear and has led a very fulfilling life since. Jenni returned to full time work, and has managed to maintain a good work/life balance; still doing all the things she was able to do before the surgery.
Jenni has been married now for 16 years and has two healthy children Rebecca (14) who is a very keen jazz pianist and classical guitarist, and Thomas (11) who is a passionate soccer player. They are pictured here with Jenni's mother Jan who herself has some association with tissue donation.
Jenni's mother Jan has had two hip replacements, and each time she has donated her femoral head to the Bone Bank. Jan didn't hesitate when asked if she would like to donate, knowing that she could help someone else in need, just as Jenni had been helped by a generous stranger.
Both Jan and Jenni have been actively involved in promotion of donation through their membership of the Friends of the Perth Bone and Tissue Bank.
Jenni said "I will be forever grateful to the donor family and everyone involved in my surgery".
Donation is a valuable conversation to have
Dale was a proud Jaywon and Torres Strait Islander man, who I was lucky to call my life partner. He was looking forward to the birth of his first granddaughter when he died suddenly at the age of just 38.
Dale collapsed at work surrounded by his colleagues who frantically tried to save his life. I would like to take a moment to pass on to those colleagues that the paramedics that attended to him have told me that they were incredibly impressed with their efforts – I know they did everything they could.
Dale was rushed to the Intensive Care Unit, where again the doctors and nurses did everything they could. Despite this, very quickly I was faced with one of the hardest decisions of my life – whether to donate Dale's organs and tissue.
The decision was relatively easy for me. And that was because prior to Dale's death, we had had many conversations about his wishes to be an organ and tissue donor. Indeed the first of these was on our very first date, where we talked literally about life, death, the universe and everything. Throughout the next 14.5 years, each time we would have those discussions, they were always relaxed and informal conversations – we both cared about what may happen in each other's futures.
Having had those conversations, when the time came, the decisions I had to make were so much easier as I knew Dale's wishes.
As a result, Dale was able to give sight to two people through the donation of his corneas. As well as making a difference to the lives of these recipients, his lasting legacy has made an enormous difference to the healing of the family as, even in his death, Dale was able to give the gift of sight.
I urge you all to please have the discussion with your family, your partner or your significant other as I did.
Corneal transplants: the gift of sight
My journey began when it was found that my eyesight was deteriorating and I was having severe discomfort from contact lenses. The eye specialist and optometrist advised that my problem was caused from Keratoconus. Keratoconus is a degenerative disorder of the eye in which structural change within the cornea causes it to thin to a more conical shape than its normal gradual curve.
I was not able to obtain satisfactory vision from spectacles because of Keratoconus.
After years of treatment and extensive trials and experiments with contact lenses, I was informed that there was nothing more that could be done with contact lenses. This was a major trauma. If I could not wear contact lenses, I would be declared legally blind. I had a wife and two children to support and my focused vision, without aids, was limited to perhaps 30 centimetres. The outlook was indeed bleak.
The eye specialist recommended I consider corneal transplants for both eyes.
I received a corneal transplant for my right eye and struggled for vision, working and supporting my family, with one increasingly painful left contact lens, until the sutures were removed.
This first transplant was an emotional experience for me. I had to come to grips with the fact that a person would have to die in order for me to receive a desperately needed cornea.
I had the second transplant. I was then able to wear spectacles with satisfactory vision, no pain or discomfort for the first time in many years.
The vision in my right eye had deteriorated with the recurrence of the Keratoconus condition. This resulted in a replacement corneal transplant. This was successful.
This has been a long and involved journey. I hate to think what life would have been like had I not been able to receive the wonderful donation of three corneas.
Joel, and his best friend, his Dad
Double or nothing
Being told that I was going to need a double lung transplant at 18yrs of age due to Cystic Fibrosis was something which was both exciting and scary at the same time. It was exciting knowing that there was an opportunity out there, but scary knowing what would happen if I never got there. Life would definitely have to be better than what I had at the time, with no contact with the wider community and being stuck at home.
The wait during the next seven months was extremely hard. Every time the phone rang, I was on tenterhooks. Could this be the call? But the call at midnight was unmistakable. Containing my nervous excitement in case it was a false alarm was difficult.
Things weren't simple following my transplant. I had my best friend, my dad, with me the whole way. He would just sit beside me keeping me company, reading the paper. He was there for my highs and for my lows. I went from being so sick before my transplant, depending on him for everything, to walking everywhere and enjoying things with him after the transplant. 'I was a new man'.
Almost eight years later, I never thought that I would need to go through things all over again with another transplant. I was told I would need a kidney transplant. I just thought 'what next', knowing the wait for kidneys can be a long one.
My dad was once again with me throughout the whole process. Not wanting this to take over my life, he made the decision to donate his kidney to me without a second thought.
I was once told that I would never turn 12, but that is in the distant past with a lung and now kidney transplant. I look forward to living every day and I take nothing for granted. You can't tell anyone how their life is going to turn out—you just make your own destiny.
A big thank you from the bottom of my new heart
Life. We wonder at its origins, we marvel at its complexity, we find peace in its beauty, yet we take it for granted.
I took my life for granted. Suddenly it became significant and my future became a mystery when I was diagnosed with cardiomyopathy. A career that was planned became early retirement at age 30. My wife Lorraine's plans for a child in five years became the need for a child now, so part of me could live on in a new life.
I was limited in what I could do and Lorraine did what I couldn't. She reduced work to part time so I could sleep when our new son Lochie needed to play.
Slowly, over a period of nine years, I became less able. I was dying. Fluid in my lungs made it a struggle to breathe. My muscles became weaker. Night time sleep was difficult because I was afraid of dying in the quiet darkness. Depression was with me constantly.
I couldn't take it anymore. I was assessed to be put on the transplant waiting list. This was the second time in my life a transplant was high on my agenda. When I was 20 years old I was in remission from Acute Myeloid Leukaemia and had to decide if I wanted a bone marrow transplant. Back then I wasn't mentally ready and decided not to go ahead. However this time, I was ready. Also, I had no choice.
In the last days before the heart transplant, I wasn't me. My spirit was there hanging on by a mere thread, but I was ready to die. Everyone I knew thought the same and visited me in ICU to say goodbye although I was oblivious to it all.
After observation by the transplant team, I was taken off the list. My body wouldn't cope. However I somehow improved the next day and was put back on the list. Luckily, a heart became available and I had my operation.
Life has its ups and downs. It has its miracles. It has those who give miracles.
To my donor and their family—you gave me the miracle.
To Lorraine and Lochie—you are the miracles that keep me going.
To my doctors and medical team —you are the miracles who control and monitor my progress.
Without you all, I would not be here to marvel at life's miraculous beauty.
Helen and Barrie
On the 5th June, a baby girl was born to Barrie and Helen, baby sister to Darryn, eight, and Denise, six.
Danielle always wanted to grow up fast and do the things her big brother and sister were allowed to do. She was very fussy about what she wore and how she had her hair.
When she was old enough to go out, she was always amused that her older sister was required to show her ID and not her.
Danielle was always willing to help anyone out if they needed assistance, so her decision to donate her organs was not a surprise to her family.
Her illness was sudden and would have taken her life immediately if it were not for a dedicated team of intensive care staff who tried to halt the effects of meningitis. It was a virulent strain of the virus and had already shut her system down. Obviously it came as a huge shock to her family and friends—she was only 21.
We take some comfort in losing Danielle from the fact that she was able to continue to help people by saving and improving their lives. We are fortunate that we have been kept informed of her recipients' progress.
Helen and Barrie
Christine, Rod and Jarrod
My donor family heroes
My name is Christine. I was a blue baby and my parents were told I needed heart surgery to survive. I was operated on the very next day. Five days later Mum and Dad came to collect me. My parents were told to take me home and love me as I probably wouldn't live to see school age. Well—I did, although I was so small Mum had to make my first uniform!
I underwent a cardiac catheter at 18 and it was then I was told there was nothing further the doctors could do for me apart from a heart/lung transplant. They also told me I would never have children.
I met and married a wonderful man and in 1999 we made a beautiful baby boy who was carried to term by his generous Aunt.
My journey towards transplant started when my oxygenation levels were dropping significantly. It took me over three months to become 'listed' for a transplant and then I waited almost 16 months for that miracle call.
I remember being very scared as I was wheeled away from my family that night, hoping that I would make it through. For me the recovery was a long road. Mum and I spent three months in and around hospital. Finally the wonderful doctors and nurses won the war and I was heading home —a new woman.
Since my transplant I have been able to take my first overseas holiday, stand on the top of a live volcano, attend the car races at Bathurst and so much more. The absolute best is I've been able to watch my baby grow into a beautiful young man, see him score his first goal on the soccer field and put a band-aid on his grazed knee. It's those small things like spending time with your family that I just love.
There are no words in the English language to convey my gratitude to my donor and their family. Thank you just doesn't seem to get anywhere near it. I think of them every day of my new life and hope that they can have some peace in knowing that the wonderful gift they gave me is being cared for and enjoyed to the fullest. They are my heroes, although I shall never meet them.
Lyn on her bike
A life renewed
The words 'you need a heart transplant' are very difficult to hear. After three operations, the prospect of facing more heart surgery was pretty terrifying. I knew that this was the only way I would survive. After all the tests and appointments to prepare me for the transplant, I received the call that would give me life! It was the hospital saying they thought they had a new heart for me.
This was such a surreal moment. I had been living on 24 hour a day intravenous infusions for six months to keep my heart from failing completely. I had to fight just to live and everything I did was so difficult and so exhausting that I hardly managed. I couldn't care for my family, play with my grandchildren or walk more than a few metres.
I was driven by two strong feelings that night. One was of extreme gratitude to the generous person who had decided to donate their organs and the other one was that my fight had to go on for a little longer so I could make the best of this gift I had been given.
Since that day, I have regained so much energy. I can now do many things I couldn't even have thought of doing before. I have climbed the harbour bridge, been away on a holiday with my husband, been to the gym and played cricket in the backyard with my grandson! My husband and family have been wonderful in supporting and encouraging me to live life to the full. I will be able to watch five grandchildren grow up and I have a wedding to plan for my son. Things that I never thought I would do.
I am so grateful for this precious gift. I celebrate and give thanks to the donor and their family every day.
I want to tell everyone that it is so important to talk to your loved ones about your decision to donate. The fact that I can live my life to the full shows what an amazing gift organ donation is. I want to celebrate the doctors and nurses who do this fantastic work. Their magnificent skill gives the gift of life to those who need it.
I'm off for a bike ride now!
Walking on Water
At birth, I was premature, breach, unable to pass urine and unable to breathe without assistance. I had a condition known as Posterior Urethral Valves. The doctors gave my parents two choices; one was to turn off the life support and let me die and the other was an operation that might prolong my life for two months. Mum told them 'we are going to pray for a miracle' and my parents told the doctors to go ahead with the operation.
After six weeks I was able to go home for the first time. At one year old I had my left kidney removed as it didn't function at all. I couldn't go to the toilet naturally until I was five and had reconstructive surgery on my bladder. I can still remember going to the toilet for the first time.
I had many trips to the hospital for check-ups and minor operations. At age 12, I began getting serious infections in my kidney as my bladder muscles were too weak to fully drain. Doctors performed an Appendicovesicostomy which is an operation to create a stoma from my appendix to drain my bladder.
At 16 and studying Year 10 at school, my kidney function fell rapidly. I lost a lot of weight fast and remember lying awake every night thinking I was going to die. Both of my parents were compatible, however Mum decided to be the donor so Dad could stay and work the family dairy farm.
Mum had the five hour operation. The next day I woke up and even though I was unable to move, I felt well. I had never known what it was like to feel well until that day. The new kidney had almost instantly started to function and functioned fully within days.
I had a year off to fully recover and just enjoy myself. I surfed and fished almost every day. I had a very close encounter with a 2.5 metre shark going under my board. Then I joined the surf life-saving club and trained with them for about four months. I did weight training and went running every day and became very fit.
My neighbour had a heart attack and asked me to mow the lawn while he recovered. I discovered I was very good and very fast at it and I loved working with plants. I started a lawn mowing and gardening business, which I still own and run today. I have been quite successful with it and have gone on to study Certificate III in horticulture.
I still surf, fish and ride motor bikes every chance I get and I thank God every day.
I love life...
Kevin, Aurora and Steph
Walking on Water
At birth, I was premature, breach, unable to pass urine and unable to breathe without assistance. I had a condition known as Posterior Urethral Valves. The doctors gave my parents two choices; one was to turn off the life support and let me die and the other was an operation that might prolong my life for two months. Mum told them 'we are going to pray for a miracle' and my parents told the doctors to go ahead with the operation.
After six weeks I was able to go home for the first time. At one year old I had my left kidney removed as it didn't function at all. I couldn't go to the toilet naturally until I was five and had reconstructive surgery on my bladder. I can still remember going to the toilet for the first time.
I had many trips to the hospital for check-ups and minor operations. At age 12, I began getting serious infections in my kidney as my bladder muscles were too weak to fully drain. Doctors performed an Appendicovesicostomy which is an operation to create a stoma from my appendix to drain my bladder.
At 16 and studying Year 10 at school, my kidney function fell rapidly. I lost a lot of weight fast and remember lying awake every night thinking I was going to die. Both of my parents were compatible, however Mum decided to be the donor so Dad could stay and work the family dairy farm.
Mum had the five hour operation. The next day I woke up and even though I was unable to move, I felt well. I had never known what it was like to feel well until that day. The new kidney had almost instantly started to function and functioned fully within days.
I had a year off to fully recover and just enjoy myself. I surfed and fished almost every day. I had a very close encounter with a 2.5 metre shark going under my board. Then I joined the surf life-saving club and trained with them for about four months. I did weight training and went running every day and became very fit.
My neighbour had a heart attack and asked me to mow the lawn while he recovered. I discovered I was very good and very fast at it and I loved working with plants. I started a lawn mowing and gardening business, which I still own and run today. I have been quite successful with it and have gone on to study Certificate III in horticulture.
I still surf, fish and ride motor bikes every chance I get and I thank God every day.
I love life...
Tanya and Juana
137 steps...a donor's story
My sister Tanya was diagnosed with leukaemia. Within two hours she was heading to hospital for treatment.
The next time I saw her she had undergone aggressive chemotherapy and was extremely sick. She could barely move, had lost her hair, her skin was peeling off her body and she was losing finger and toe nails. However, her inner being continued to fight this demon within.
One cannot imagine the strength and courage it must have taken for her to pull through this ordeal. She did, however, as she was in remission for the next 16 months.
Her leukaemia returned and we learned that Tanya required a stem cell transplant. I am her sister and live in the same street—only 137 steps away. I was a perfect match.
The hospital staff extracted white blood cells from me and replaced those which chemotherapy had destroyed in Tanya.
David, Tanya's husband, and I stood and watched every single drop, as it dripped into my sister's body. I said a prayer from all her family and her close friends around the world were praying for her too.
Not once did I think she wouldn't pull through. She was a fighter and a wonderful and kind person. Most of all she was MY sister and I love her.
The transplant was successful. After recuperating, Tanya returned home. It was still 137 steps from her front door to mine. How miraculous that Tanya's donor was so close.
It has been an honour and a privilege to be a stem cell donor for my beautiful sister. Not once did I think this journey that we took together would not have a positive outcome.
Now, seven years since the transplant, Tanya is living a healthy life. Every year, on her anniversary, we celebrate by doing something special together.
We now share an exceptional relationship. She is my sister and my friend. We can't verbalise the experience. 'Thank you' and 'you're welcome' are not enough.
There is an unspoken link between us that will remain in our hearts forever.
Double or nothing
Being diagnosed with lung disease was initially something that shocked me. I still led an active life, involved in work and numerous sports. Deterioration of my lung capacity down to 6% meant that I was eventually placed on the transplant waiting list. I was no longer able to do the things which I had previously taken for granted. I required constant support from my family for simple tasks, which took a toll on everyone. Without the support of my wife and brother, life was an existence.
Getting that midnight phone call was both a relief and exciting. It took a while to gather our thoughts and understand that this opportunity was actually happening. Everything was surreal. I was about to receive a double lung transplant and have a new chance at life.
Since that phone call, I now look at every moment and every day as being a bonus. I have gone from nothing to having everything following my double lung transplant. Getting out of bed, performing simple tasks, and catching up with friends while on continuous oxygen was frustrating.
I am now able to spend time with family, working, and walking nearly 10km every day. When asked why I enjoy my daily walks so much, I quickly respond with, 'Because I can'.
I treasure every day since that moment, spending time with my family and knowing that I may not have had this opportunity. Each morning I am reminded of the generous gift that my donor and their family made. Waking up and taking my first breath, I always pause and say thank you. Thank you for the opportunity to go for a walk, to cheer on my favourite footy team, for the time spent with my family, for everything.
Thank you for giving me my life back. Thank you.
Alison and Dean
I was nearly two when I was diagnosed with Type 1 Diabetes (Juvenile Diabetes). My parents were told this was a 'life sentence, with no cure'.
That news changed my whole family. Daily urine testing and injecting became the routine. As time went by and technology improved, blood testing with four injections a day was the routine. I grew up with a future filled with fear of amputations, blindness and continual illness—not like the other kids who were dreaming of fun, family and future.
I was warned not to have children as this would accelerate the damage to my kidneys but I wasn't going to let my condition stop me. I now have two beautiful children.
As I got older, I was fast becoming very ill. High blood pressure, swelling limbs, unforgiving tiredness and vomiting—all while I was still working full time and bringing up my teenage kids and trying to fulfill their needs as a single parent.
At this time my son was in his decision-making years at school. My daughter was an angel, caring for me and accepting of the circumstances. My partner entered our life during this chaotic period of illness and teenagers needs. Then, when I was told that I needed a transplant to stay alive, he accepted this news without any hesitation of the journey ahead.
After having diabetes for most of my life, to hear that I needed a transplant for my kidney and pancreas I felt a mixture of emotions—shock, disbelief and excitement, but most of all anticipation of a future.
We got the call at 1.48 am. I knew it was my gain, but at someone else's loss. I shed the first of many tears for the donor. I think of my donor and their family as much as I think of my own family now.
My support from the first day until now has been my partner. The only way to describe him is 'my rock'. Every day I'm thankful for my family's support during my time of need and also the donor family's generous gift to me. If not for that generous decision by the family, my life would be a different story.
I can now look forward to spending many healthy years with 'my rock' and spending more time with my children. I am able to see grandchildren in my future which was something I was afraid to dream of before.
My donor kidney and me
I was diagnosed with renal failure after a number of years of non-specific illness, which was not diagnosed as relating to my kidneys. At this time, I was married with two adult children and was aged 49.
I suffered a partial loss of my eyesight. The eye specialist to whom I was referred told me that the problem could be related to my kidneys. I subsequently consulted a renal specialist and after a kidney biopsy was told that I was in renal failure.
I commenced haemodialysis at a Sydney renal unit. After two years, I started home training after being encouraged by the wonderful renal nurses and later undertook renal dialysis at home.
We then relocated to Forster on the North Coast with the home dialysis machine. I received a late night call about a kidney being available for transplant in Sydney. However, after being prepared for surgery, the kidney was found to have been damaged and the operation was cancelled.
The day after my 60th birthday, I received a call to say that another kidney was available. We were told that the kidney was not a match, apart from the blood type, but we decided to take the risk after nearly 10 years of dialysis. The operation proceeded well, due in no small part to the wonderful doctors and nurses at the transplant unit and the great follow-up staff.
As you may notice, I have used the term 'we' as my husband was my carer for the period I was on dialysis and also attended all medical appointments and discussions. I found this to be most important as I did not always take in what was being said and was sometimes emotional.
Since my transplant, my health has improved beyond belief. I have always tried to follow medical advice and stay healthy even during dialysis, so that any transplant would have more chance of success. I have kept this attitude as I realise that a transplant is not a cure but another form of treatment.
The hardest thing about dialysis was that my family, including grandchildren, were a long distance away and we could not travel to see them without having to arrange dialysis in hospitals. This was particularly difficult on short notice when a family emergency arose and left me feeling helpless.
I would just like to let donor families know that their brave decision to donate the organs of their lost loved one means so much to so many recipients and their whole families.
I have lived with my donor kidney for nearly 10 years. I would not have been able to see so much of Australia had I not had a transplant. I bless the donor family every night.
Shirley and John
A good luck story
My husband, John, had kidney disease, but he was lucky to be diagnosed long before 'end stage'. At 55 years old, John had 35 percent kidney function, and it was declining.
Luckily, we have an excellent local renal specialist. John was committed to following instructions and adapting to the ever diminishing dietary choices. He continued farming, surfing, refereeing rugby and going to the gym. Despite the expertise of the nephrologist and John's determination, it was hard watching the inevitable loss of energy, and the resulting shrinking of John's world, as one by one he was unable to continue doing the things he loved, and eating the things he loved to eat.
Luckily, when we started looking for a live donor, I was the first person tested—and I was a match! It was like an early Christmas present.
Making the decision to donate a kidney was easy. The hardest part of the process was waiting for the final decision to go ahead and use my kidney. In the second cross match some problems were discovered. The final delay, though, was because of the transplant team's great care for the health of the donors. I had to have extra tests to make sure that my health wasn't compromised by the operation. At all times I had ready access to support and information, and being a donor gave me a chance to feel really involved in John's recovery.
Many people feel that giving a piece of yourself away is daunting. I had no reservations. I have always regarded my physical body as machinery; not part of the intrinsic psychological, spiritual and intellectual 'Me'. I have only ever had positive experiences in hospital and the wonderful care and counselling of the transplant team and hospital staff made my operation another life adventure.
Luckily, John and I now have a whole new life of adventures ahead of us.
Luckily, we live in Australia, where all this is possible.
The best gift
My dad was diagnosed with hereditary kidney disease when I was two years old. He was very sick my whole life. He was on dialysis and often rushed to hospital in the middle of the night. He eventually had to resign from work and we were struggling financially. My pop (Dad’s dad)who was in his 70’s, didn’t realise he could be a donor. He gave Dad a kidney! Dad had been on the transplant waiting list for years though. Not good enough!
When I was 21, I was diagnosed with the same hereditary condition as Dad and the specialists have said in the future I will need a kidney transplant. I am really passionate about organ donation, and would love to offer my time to help.
Obviously, I can’t donate my kidneys because they are dodgy, but everything else is free to a good home when I go!
I believe organ donation is the best gift you will ever give and never know you gave!
Thanks for promoting awareness and educating people. All my support.
I’ve had insulin dependent diabetes for 25 years. Throughout that time I developed many complications including neuropathy, blindness and then renal failure.
I have been on dialysis for over a year and this was a life changing time. I found it difficult to attend work, drive and maintain a home. I felt worse coming off dialysis than I did going on—but I battled along.
Then that unexpected and wonderful phone call came to say ‘yes I have my organs’—so off I went to Sydney. It was a frantic roller coaster morning that I will never ever forget.
I have been blessed by an angel, for I can now lead a happy, healthy and long life.
It has been 10 weeks since my kidney and pancreas transplant and I feel fantastic. I also believe that being positive goes a long way and that this attitude helped my recovery.
Thank you is not a powerful enough word to use, for the selfless act of kindness by the donor family. I am forever in their debt and believe that their loved one continues to live on—in me.
Kyla at four months and today at four years.
A gift from a stranger
I would like to tell you about a gift I received. It was from someone I don’t know and may never know, yet it is the most generous gift one can receive—the gift of life.
My name is Kyla. I was born with a serious and rare liver disease called biliary atresia. This meant that my body was unable to remove bile from my system as the ducts that carry bile from my liver to my gallbladder were completely blocked.
At five weeks old I had an operation called a ‘Kasai procedure’ to create new ducts aimed at removing the bile. At first we thought the Kasai procedure worked, but unfortunately when I was 10 weeks old my condition began to deteriorate. I was constantly getting infections, extremely lethargic and not able to eat. My skin became very yellow to the point where I looked green—even my tears were yellow. The doctors said my only chance at survival was a liver transplant.
I was placed on the transplant waiting list as a high priority as I was already in chronic liver failure. Then, when I was four and a half months old, the call we had been anxiously waiting for arrived.We were told that there was a family who despite their grief and loss, agreed to donate their loved one’s organs, one of which was given to me.
Because of this exceptional, selfless act this donor family saved my life, as well as several other people in the same situation as me. Without their gift it is highly unlikely that I would be here today to share my story, and I am eternally grateful to this special family for giving me the chance of life.
As a transplant recipient I know first-hand how important organ donation is. I also know how important it is to increase our organ and tissue donation rate, as currently we don’t have nearly enough donors for those waiting for transplants. So please consider becoming an organ donor—your one decision can change a person’s life forever. My donor family’s decision changed mine, and I can’t thank them enough.
A breath of fresh air
From as young as I can remember, I had been preparing for this day. It was always known to me, that it would come around at some point in my life. The only thing I wasn’t prepared for was that I would have to face this path at the age of 18.
I was told that I had a maximum of two years to live. I was born with the chronic and debilitating lung disease, cystic fibrosis. By definition, cystic fibrosis affects mostly your lungs, pancreas, liver, intestines, sinuses and sex organs.
CF causes your mucus to be thick and sticky. The mucus clogs the lungs, causing breathing problems and making it easy for bacteria to grow. Difficulty breathing is the most serious symptom and results from frequent lung infections that are treated with, though not cured by, antibiotics and other medications. By my definition, it does all of that and so much more.
I received a call that changed my life. I received a double lung transplant that night and have been living my life to the absolute fullest since.
I am so thankful and so grateful to my donor family for giving me such a precious gift, the gift of life. Because after 19 years, I was finally able to take a breath of fresh air. And I’ve never felt better.
Gail and Paul’s story
Our story begins when Paul was nearly 19 years old. He was a big strapping fellow, just starting out in life.
He and his cousin travelled to Stuarts Point to visit their grandfather and to look for work. I received a phone call from Paul who said he couldn’t see properly and his vision was blurry.
A few days later he had an eye test which showed something behind his eye. He was sent immediately to an eye specialist who confirmed what the optometrist had seen. His blood pressure reading was 190/140 which triggered alarm bells.
Paul’s next step was an urgent trip to emergency. There he had various tests until he was diagnosed with kidney failure. We were all totally shocked and bewildered.
Doctors predicted he would need a kidney transplant within 18 months but, luckily, he managed eleven years. He then had to start dialysis five hours a day, three days a week. This took a terrible toll on his body. I was so devastated at this time because I couldn’t help Paul.
Paul was placed on the transplant waiting list and every time the phone rang we were hopeful it meant a donated kidney. As five and then six years went by with no call, hope faded.
Paul was then told about ABO incompatible transplants (between different blood types) which had been carried out in Sweden for 25 years. Doctors here discussed the procedure with us. I didn’t hesitate in agreeing to donate one of my kidneys. Paul was very ill at this stage and I wanted to give him the opportunity to have a normal life without being hooked up to machines.
Paul went to hospital three weeks before me for preparation. His antibodies had to be brought down so his body would not reject my kidney. Paul is O Positive and I am A Positive.
The operation was a complete success and now when I look back at it all seems like a dream. I prayed a lot and asked for a miracle to help my son.
It is four years since the operation and things are going well. Paul is now doing all the things that healthy people take for granted. He now has a life with his two beautiful children; Harrison (four) and Annabelle (three).
We were so lucky I could help Paul.
My name is Cheryl. I am 50 years old and I was given a second chance. I received a liver transplant.
I am a single parent with two teenage boys who were 14 and 15 at the time. They were staying with their grandparents while I was in hospital dying. They hadn’t seen me in months and the hospital often wouldn’t let me talk to them on the phone because my lungs had filled with fluid and my kidneys were failing. I was on dialysis.
The phone calls were stressful because I was gasping for breath and they knew that I was really sick—but not how bad it really was. My eldest was in Year 10 and was trying to cope with study and his ill mother. My youngest was the rock, helping his brother and trying to stay brave for all concerned.
That time is sometimes a blur for me, I was so sick I was delirious and had trouble remembering even the smallest of things. I didn’t want to scare my children but I missed them enormously. I didn’t want to leave them without a mother.
I fought my hardest to stay alive but when your body is giving up on you there isn’t much you can do. My family had had a tough year. My sister lost her eldest daughter, Naomi, to cancer. She was 35 and left behind an 18 month old daughter, Scarlett. My brother, Les, died from cancer as well. My sisters, Leonie and Christine, took turns staying with me every day while I waited. The strain on them was enormous.
The call came to the nurses desk—they had a liver for me. I was awake, and when the nurse approached me with a huge smile on his face I knew.
I felt stronger than I had in months and nearly jumped out of the bed. Please, please I said, I need to ring my sisters and sons. The nurse told me to calm down and got a phone for me. I rang both my sisters who jumped in their cars and raced to the hospital.
They promised to ring my children as soon as I went into surgery. I knew it was going to be OK. I believed I was going to make it. I silently thanked the family that had had to make the hard decision to give me life. I knew someone had died to let me live and I thanked them again and again as I slipped into sleep. The surgery took nine hours and 22 litres of blood. It didn’t go as planned but I made it through. All I needed was that chance.
Today I am still going well and have only had a few minor problems after the surgery. My sons are now 18 and 19 and getting on with their lives. I am so grateful to the family of the person who made the decision to donate. He/she is the hero of my family. I think of them often and hope that their family is doing well. Many of my friends and co-workers have decided to donate since hearing of my story and I hope this can inspire someone else as well.
Hi, my name is Shaun and I am 17. I like hanging out with my friends, the Bombers (Essendon Football Club) and girls—all pretty normal teenage stuff really. But my life hasn’t always been that normal.
Here is my story.
I have had two heart transplants. Yes, two. When I was born I had a problem with my heart. By the time I was eight I couldn’t run, I was tired all the time and I wasn’t growing. The doctors said I needed a new heart. I didn’t really understand why, but I cried with happiness when the doctor told me I would be able to play footy like the other kids.
One night about 11pm the hospital rang and said they had a new heart for me. I had an operation that lasted 14 hours and then I was given a new life at eight. I played my first footy game and I went swimming. I loved playing with the other kids and keeping up!
Nearly five years later, when I was 13, the doctors found another problem with my heart. My heart was not working again. But a second miracle occurred and I was lucky enough to have a second heart transplant. How can one person be so lucky?
That was four years ago now, and I am doing really, really, really well. When I finish school I want to be a nurse so I can help sick kids like I was—because I know what a big difference the nurses make.
I was chosen to be an ambassador for ‘Heart Kids’—a support group specifically for kids with heart problems. As an ambassador I talk about my life and help them to stay positive.
I want the families that helped me to know that I am living life to the fullest for them and for me. My motto is stay positive, and never, never, never give up. You never know what tomorrow will bring.
Paula and Ian
I always found a rainbow
I am 4 feet 8 inches but have a very out-going personality. I have always known what it is like to be ill. It all started when I was 14 years old and I was rushed to hospital. I was in a very bad way with my health.
I had been diagnosed with peritonitis, which led to renal failure, heart failure and pneumonia. I remained in the hospital for about three months.
My kidney recovered somewhat, but I still required a transplant in the near future. Time and time again the doctors and nurses worked so tirelessly around the clock to save my life. I weighed 45kgs when I was admitted to hospital and when I was discharged weighed only 22kgs. I received my first renal cadaveric transplant when I was just 20 years old. I felt like a bird with new wings.
Nothing could stop me. I volunteered everywhere I could, went everywhere I could and had an amazing 17 years with my kidney.
After fostering two children, I contracted chickenpox and was hospitalised. My kidneys failed and once again hospital became my second home.
When I needed a second transplant my husband offered his kidney to me. We discovered that we were not a match. There was some sadness—but not for long. The doctors said they thought there was a way we could still do this although it would be very tough.
We went through with the treatment and my husband never faulted once. I had to receive dialysis and plasma exchange in order to change my blood group to match my husband’s. After all the blood, sweat and tears you can see the difference straight away. My eyes were whiter and my skin clearer. I didn’t feel nausea all the time either.
I am so lucky I have the doctors and I have and the loving support of my husband and friends. You see there will always be a mountain to climb, a river to cross, but it’s how you go about it really. Look for the rainbow because it’s there. I would not be the person I am today if I had not fallen so ill.
I appreciate the very small things in life, like the way every second counts and you will not get it back again. Do it now—not tomorrow. Tell people how you feel about them and don’t take things for granted. From the bottom of my heart, thank you to all who have become organ donors—you are heroes!
Michelle and her daughter Amelia
Twice as lucky
Hi, my name is Michelle. Unlike most transplant recipients I enjoyed a life full of health and fitness right up until I ruptured my liver from a hard fall during a game of sport. A freak accident.
A week after initial surgery, my liver suddenly failed and I was in real trouble. My only chance of survival was an urgent liver transplant—ideally within 24 hours. As time ran out, I received a liver that was not particularly healthy but it kept me alive long enough to receive a second liver two days later. Upon waking, finding out I had two liver transplants was the biggest surprise of my life, and it has also been my source of life for nearly ten years now.
After the transplants I slowly recovered with a few ups and downs and more daytime TV than I could imagine. But before long, I was back working, studying, riding my bike, swimming and enjoying good health and a full family life once again.
My greatest joy came in 2007 with the birth of our daughter Amelia—two days before the fifth anniversary of my transplants. Being a mum makes me even more appreciative of the amazing gift I have been given. I also have a wonderful partner, Jo, who was a tower of strength when I was ill and continues to exude optimism for the future.
None of this would be possible if two special donors and their families had not acted selflessly and courageously to agree to organ donation. I was incredibly lucky to receive two donated organs in three days, but many others are not as fortunate as me and will die waiting for a transplant.
My donors and their families are often in my thoughts and meeting other donor families is always special for me. I truly hope my donor families gained some comfort from knowing that the generosity of their loved one made such a life-giving difference to me and my family. Please consider organ donation and make your wishes known to your family. Many lives depend on it.
Luke and Toni. Enjoying life and breathing deep.
Enjoying life and breathing deep
I was diagnosed with cystic fibrosis at the age of three months. During my school years and early adulthood my health remained very stable. I lived what I considered to be a normal life like any other teenager (I only had one admission to hospital while I was in high school).
In my mid 30’s I noticed my health was slowly deteriorating and with it my lung function. I was becoming more tired. I struggled with weight, daily chores, and working at my part-time job as a youth worker.
I kept pushing myself to prove I could do it and I was ok. It was coming at a cost physically and emotionally. I was approached about lung transplantation. I decided the time was right and the work up began.
I knew deep down I needed a transplant. I was feeling angry at times and frustrated because I was losing control.
One special day I was woken by my nurses to the news that there was a possible match and if all goes ok, I will be getting some new lungs.
Luke and I made a pact we would not say goodbye. When I went into theatre it was ‘see you when I get out’.
Today, as I write this, I am now nearly 12 months post transplant and my life is just perfect. I am walking,bike riding even jogging short distances. Due to my old lungs I was not able to fly in a plane so I had not flown for 16 years; since my transplant I have flown a dozen times and loved every minute of it.
There is so much more I would love to write about the happiness I feel. Also how much of a role my family and friends have played in this journey of my second chance of life. Most of all, I have a connection with a family I will never meet, and due to their decision to donate their loved one’s organs, I will always be eternally grateful. I will light a candle for my donor every year in remembrance. I will continue to celebrate my life every day.
Please everyone, discuss organ donation with your family.
Natalie and Cooper.
After 25 years of having Type 1 diabetes, my kidneys started to fail at the age of 30. For two years my renal specialist kept a close eye on my kidneys with regular check ups and constant blood tests.
He arranged an appointment for me to be assessed for a possible kidney and pancreas transplant. I went through all the pre-transplant testing including fitness tests, stress tests and the usual bloods.
My kidney function became bad enough for the doctors to put me on the transplant waiting list. By this stage I was quite unwell and getting through everyday things was becoming a struggle.
Just two months later I received the greatest phone call of my life, asking if I would like to come down the next day for my new organs! How could I refuse this wonderful gift, the gift of life!
I received my new kidney and pancreas and I have never looked back. Due to being quite ill for a number of years, my life had been on hold, but now there was no stopping me! Just 12 months later I began my Education Degree at university and I will graduate in two years time.
Without my transplant I don’t know where I would be today but I know for sure that I wouldn’t be sitting here so happy, healthy with a great future ahead of me.
Every single day I walk around with someone else by my side—my donor. I will have this person with me for the rest of my life. Without my donor, my doctors and nurses, my friends and of course last but not least my wonderful loving, caring, amazing family (in particular my caring, supportive, loving parents and brothers) I would not be here today writing my story.
No greater gift
I am a double lung transplant recipient. Without this life saving transplant, I would not be here today to share my story with you.
As a toddler, I was diagnosed with cystic fibrosis, a genetically inherited disease that affects the lungs and digestive system. From birth my lungs produced an abnormal amount of thick sticky mucus resulting in constant chest infections and causing irreversible damage.
The few years leading up to my transplant were the toughest. I was struggling to breathe relying on oxygen and intravenous antibiotics to keep me alive. At the start of 2010, I had a common cold and ended up very close to death. The doctors decided to put me on the transplant waiting list and were worried that I wouldn’t last while waiting for my transplant.
I waited nearly a year on the list and was very fortunate to receive that life saving call when I did, because I only had one or two months left to live.
I was house bound and spent at least four hours a day doing chest physiotherapy while hooked up to an intravenous line twenty-four hours a day. I required a carer to look after me as I couldn’t even make myself a cup of tea.
The hardest part was being pushed around in a wheelchair by my family.
The disease had taken its toll on my body. I was hardly eating and struggling to absorb any food. I looked like a skeleton and got down to about 45 kilograms in weight.
Approaching my one-year anniversary I can reflect on how my life has changed. I am living life and making up for lost time.
I enjoy going swimming and to the gym about six times a week. I walk the dogs, shop, go out with friends and family and can drive again. The Australian Transplant Games are my next goal where I hope to compete in swimming. I also look forward to going back to teaching in the near future.
I am so grateful to my donor family for giving me this precious gift; I now have a future to look forward to and many hopes and dreams to achieve.
There is no greater gift, than the gift of life!
I was 55 years old and working full time with my wife Lorraine as a very active antique dealer when my life was changed forever.
Eight months prior, while fishing at Lake Jindabyne in the Snowy Mountains I suffered a massive heart attack, leaving me with only 13% pumping capacity in the heart. Needless to say that made breathing extremely difficult. I was placed on the transplant waiting list which subsequently saved my life.
At the time neither of us had any experience or knowledge of transplantation. A Pastoral Care Worker spent time talking with me, and two days before my transplant she came to me and said that she lived with a group of retired nuns and as they were ‘awfully powerful prayers’, would I mind if she asked them to pray for me. My words were ‘Go ahead Sister. I need all the help I can get.’ Two days later it happened. Was it a co-incidence?
All through the transplant work-up, operation and recovery, the importance of the patient’s carer was heavily emphasised and I was fortunate in having a loving and caring wife and family to look after me. It takes an enormous toll on a person’s loved ones as well.
The Heart Lung Clinic became our second home until with time in the gym, heart biopsies, a minor dose of RSV and general check-ups, I was able to return home.
After the transplant I was told that I was the 1000th transplant at the hospital and that they would like to celebrate the occasion with a Press Conference and presentation. It was a momentous occasion for me and my family, meeting Fiona Coote, our most celebrated transplant recipient.
Back home and I returned to work with only a few minor health problems. With both my daughters working in the local hospital it was inevitable that I would meet with the Organ Donor Co-ordinator. She was a great inspiration to me with her tireless work and I did all I could to support her program and promote organ donation. She was responsible for my appointment to the Organ Donor Task Force in which I worked for three years on a voluntary basis giving me a greater insight into the medical and legal side of organ donation.
It was my pleasure to be involved in the conversion of a room in ICU at The Canberra Hospital for the use of relatives of prospective organ donors. A first in any hospital in Australia and since its opening it has been very well used.
What has a generous and grieving family and the transplant given me? To start with it gave me life. Ten years I would not have had. Three more grandchildren and I have seen my eldest granddaughter get engaged. So far three good years of retirement with many more to come.
Your powerful gift
A week before my 24th birthday, I was diagnosed with kidney failure. This was a real shock to me and all of a sudden I knew my life was going to change forever. After thinking about all the information that was presented, I decided to take full responsibility and ownership of this condition.
I made a promise to myself, ‘to create the best life possible’. I continued to work full-time as a tradesman and never gave up. I spent eight years on nocturnal dialysis at home. Setting up the machine to needling my fistula and switching off the machine in the morning, I was my own nurse.
I received a kidney. It was a complicated procedure, and I spent six weeks in hospital fighting to keep this gift. I never gave up, and the doctors and nurses where amazing and so supportive.
A few years ago I decided to try snowboarding and with some reservations, the sport has now taken over my life.
I recently came back from my first trip overseas where I went snowboarding in Japan to celebrate the fourth anniversary of my transplant. With this second chance I have been able to reflect my life. It was a very emotional and amazing experience.
Thank you for the opportunity to experience this beautiful life.
Faye and Les
Our son Troy, aged 33, contracted streptococcal meningitis through a simple earache.
Within 48 hours we were informed that Troy was brain dead.
The decision to donate his organs was made easier for us as we knew that Troy was a passionate organ donor who thought it would be a great idea for his dad and mum to become donors as well. Troy was always coming up with great ideas!
Troy’s whole family and large circle of friends were devastated by his untimely death, but knowing that Troy was able to give seven people a better quality of life helped ease the pain of losing him.
We exchange cards via DonateLife with several of Troy’s recipients. We are always happy to receive news of their progress and how their lives are going.
Faye and Les
I owe my life to a stranger
It was mid-February when I woke up feeling very ill and assumed I had gastro. I was very wrong.
I was eventually diagnosed with Hepatitis A, most likely from food poisoning. Ninety-nine per cent of people get over Hepatitis A, but unfortunately I was in the one per cent. I had gone from being a healthy, active woman to someone who was facing death. I needed a liver transplant and without it, I would not survive.
Four months after waking up feeling unwell, I was put on life support in ICU.My liver had poisoned my whole body, my kidneys were collapsing, my brain was swelling, my lungs were suffering and everything was collapsing rapidly. At 10:00pm that evening my family gathered to say goodbye.
Later that night my family got the phone call. They had found a liver that matched—a liver that would save my life.
I had been given the ultimate gift. If I had not received the transplant, I would have died. It is as simple as that. Organ donation is a very simple choice but I think it is one that everyone should consider.
My road to recovery has been very slow, my family and friends have been an amazing support for me.
I have had many further stays in hospital fighting severe rejection, but I now have a new outlook on life. After being stuck in bed unable to do anything and so close to death, everything changes.
I am so very thankful for being given my second chance, and I owe my life to a stranger.
Even storm clouds have silver linings
My DonateLife story had a different ending than I expected. A year ago my sister had returned from living in the USA for the last 18 years to raise her boys in Australia. She and her husband were in the process of finding accommodation, jobs and schools to start this new chapter in their lives when she became acutely unwell.
My sister had a rare genetic condition, erythropoietic protoporphyria (EPP), which causes sensitivity to ultraviolet light. Rarely does it cause liver failure, but in Jennet’s case it did. She spent the last five months of her life in hospital, determining the cause of her liver failure and then the ongoing management of it. It became apparent that Jennet required a liver transplant to survive.
The events over the following months saw my sister’s condition deteriorate. At the time, the doctors were also trying to ‘keep alive’ other patients on the ward who were also waiting for suitable liver donors. This highlighted the fragility of life and the importance of organ donation.
In the end Jennet was placed on life support. Her condition became irreversible and she was no longer a suitable candidate for transplant. It was then the medical team approached her, and us, about Jennet becoming an organ donor herself. Jennet made it very clear that this was her wish. It was then up to us, as her family, to respect this very hard decision.
This was the surreal nature of our experience. Within weeks we had gone from waiting for a donor, to my sister becoming a donor. This was hard to comprehend in the face of our own grief. I had often wondered how I would write to a family to thank them for this second chance at life, but now I face life without my sister.
Knowing that through Jennet’s death, the lives of three people and their families have been improved, is the silver lining in a very dark storm cloud.
Thank you for the greatest gift
Six years ago I was diagnosed with a lung disease called pulmonary fibrosis. There was evidence that medication could not help this condition as scarring is permanent once it has developed. For a non-smoker this news was very hard to understand because the scarring of my lungs was going to end my life. A lung transplant for me was the only option available. Before my double lung transplant I was reliant on oxygen 24 hours a day and fearful I may not see another Christmas.
My life has been saved by the very generous gift that one person and their family made—the special gift of new lungs. I haven’t felt this good in seven years. After three months recovery I could go back to work with two of my three sons in the building industry and very much enjoying my second chance at life.
Since my transplant, I have met a lot of special doctors and nurses as well as a number of young people training to be a part of an amazing team involved in transplant. It is thanks to people donating the greatest gift possible—LIFE that people like me have been given a second chance. I can plan for a future with family and friends.
At this stage I am taking a lot of medication and every day I think of the person and their family that have had so much pain in their life. I hope that time and the strength of family and friends will make things easier for them. I have never met my donor family but I promise to value the gift they have given me.
I would like to encourage people to talk to their family and friends about their decision to ensure organs can be given to those in need if the time comes.
Hi, my name is James and I am 20 years old. Just being able to say that is an achievement in itself. When I was 11 years old, I was diagnosed with pulmonary hypertension after collapsing during a game of football with my mates at school.
After months of trials with medication, the doctors told my mum to take me home and explain to me that I had three months to live. My mum, being the strong persistent woman she is, didn’t accept the fact that I was going to die. Through her research she found a transplant team and things began to change.
The heart-lung transplant teams worked hard to keep me alive. They controlled my disease with a variety of medications, but unfortunately when I was 15, I took a tragic turn and the medications started to fail. The only option left for me, was to go on the transplant waiting list for a heart and double lung transplant.
I was told that if I didn’t get a transplant within the next nine months, there was a high chance I wouldn’t live much longer. Fortunately for me, I received a phone call three weeks later offering me the second chance at life.
After hours of surgery and multiple blood transfusions the transplant was successful.
Five years later, I am nothing but grateful to my doctors, surgeons, family, friends and, most of all, the beautiful donor and their family. They turned their tragic loss into an amazing gift and gave me, an absolute stranger, a new life. I now live my life to the fullest, stay healthy and talk to others about saving lives through organ donation.
Hello, My name is Demi and I am seven years old. When I was only 10 months old I got a nasty virus and it attacked my liver and sent it into acute failure.
Before my family knew it, I was on the highest priority list to receive a new liver. Apparently without one, sadly, I would not be here today to tell my story.
I was so blessed to receive a new liver after five days. This amazing gift saved my life and has allowed me to live a normal active life with my twin sister Lilli and big sister Hannah.
Thank God for organ donation.
I will always remember Anton saying 'Mum, please don't tell people about my high distinctions, I don't care about being better than everyone else. I just want to be normal'. That was Anton. Never a boaster, always positive. He was a well educated, friendly, fun loving 22 year old with a bright future. Everyone loved being around him.
He was a lucky boy, especially lucky when he was very young. We thought we would lose him before he was one year old. He had heart surgery at seven months and many months of medication following. That surgery allowed him (and us) another 21 years of a healthy and fun-filled life.
Anton was passionate about film—from animation to documentary. He completed a degree in Film and Screen and, on a shoestring budget, set off to produce a movie on Longboard Skating. He wasn't an experienced skater but after a great day of filming he got into his skater safety clothing and helmet and tried the course. He had a freak collision at slow speed with another skater, hit his head on the concrete and never regained consciousness. He had a massive brain injury.
We were devastated. His father, brother and myself struggled to imagine life without him. As a critical care nurse I knew he would never recover from the huge brain trauma. I knew he was an ideal donor candidate. Anton had declared on facebook his support for organ donation plus we knew what he would have wanted. We saw Anton's organ donations as the only positive thing to result from his death.
Accepting death is extremely difficult for many families. When it happens to someone you love so much there is an early stage of disbelief and a wish to preserve the life that exists. Many people take a few days to accept the reality.
Every day we miss him. It is a monumental challenge to enjoy life without him. I am comforted by the thought that somebody has a chance they would never otherwise have had.
Judy, Michael, Daniel and Harrison
Christopher's donation story started when he collapsed at school one day from a cerebral haemorrhage just five weeks short of his 15th birthday. That evening we were told that Christopher was not going to survive. Michael, our two other boys (Daniel and Harrison) and I sat huddled together absorbing the news. Our beautiful, happy and seemingly health boy would not be coming home. He would never be coming home. It was unimaginable!
There were many thoughts that went through our minds at the time but the one constant thought was that Christopher's big, beautiful, loving heart had to keep beating. Knowing that part of Christopher was going to keep living was a great comfort to us whilst we were dealing with losing him. Christopher donated his heart, lungs, liver and kidneys.
Although he hadn't specifically stated that he wanted to donate his organs, in a family conversation about organ donation a short while before his death, Christopher had indicated that he was a supporter of organ donation. Michael, Daniel, Harrison and I just knew that he would have wanted to help others in this way and so it was an easy decision. The transplant team led us through the long process, showing great care and compassion and treating Christopher with dignity and respect.
It has been said that donating Christopher's organs was a very generous thing for us to do. We didn't feel generous, instead we felt that we were doing what felt right - right for us to help get through our loss and right for Christopher.
It is now nine months since we lost Christopher and we miss him terribly. We miss many things about him but mostly we miss the love and laughter he brought to our lives. We know that this gift has given five very lucky recipients and their families a new beginning. We hope that they all lead happy and healthy lives filled with some of the love and laughter he brought into our lives. We are so very proud of Christopher. He will live forever in our hearts.
Judy, Michael, Daniel and Harrison
Judith and Barry
Gift to last a lifetime
I decided I could make a significant difference to my ailing brother's lifestyle.
I had done enough research and had the appropriate preliminary tests to know I was a suitable kidney donor.
I dropped by and told Barry I would like to give him a kidney. I suggested we should make some formal appointments and get things moving. He was quite shocked at my offer, but grateful.
Such is the miracle of life, Barry and I were a perfect match for transplant. The surgery uncomplicated, and the recovery powerful. In September this year we will celebrate 24 years sharing a radiant health.
I maintain my advantage with being robustly healthy - as I am today. I remain healthy and ready for life's challenges.
Barry was diagnosed with diabetes at the tender age of 12 years. There was no history of diabetes in our family. Our dad was one of eight children and my mum is one of 10. Barry has five children and seven grandchildren - amazingly, no diabetes.
Living a very full and active life, Barry grew to his own earth moving business, married and had children. His kidney failure put his active life on hold.
Dialysis made an immense difference with the chronic diabetic complexities which had left Barry so weak he was unable to walk across a room. The treatment could not sustain him indefinitely, hence my decision to help out with the transplant.
He maintains good health apart from being sight impaired, carries a little weight and has ongoing diabetes issues.
With the use of his motorised mobility aid, he maintains his independence. With a supportive family he enjoys Steam Engine Rally's, dance classes (not quite ballroom) and his grandchildren's sporting activities. On the whole he is living a very full and active life.
My life is whole again
I am a farmer and we run sheep and grow vegetable crops.
My wife would often ask me what was wrong as I was getting tired easily and couldn't stand for very long. I started to get terrific headaches that would last for 24 hours, and at times I became confined to bed.
Following several visits to the doctor and hospital, I was told my kidneys were failing and I would have to commence dialysis before long. The hospital staff were great, providing support and lots of information not only to me but to my wife and family.
Several months passed and I was encouraged to start dialysis. To my surprise I felt much better. We explored the possibility of a family member being able to donate one of their kidneys to me. Despite all the wonderful people who offered, it just wasn't going to be.
I got to the point where I had to plan and manage the farm from the hospital and an armchair, as I was unable to do manual work. I had to let others do the work for me, which was very frustrating.
We spent a weekend away and had bought some trees for the farm. The following Monday we were planting these trees, or a least my wife planted and I did what I could.
We were coming back through the sheep yards to bring in some sheep, when I received a call from the renal doctor.
By 9.30pm that night I was in theatre for a kidney transplant. After five weeks recovery, we were able to return home, where I am now able to look after our farm again.
I sincerely thank the family of the person who donated their organs to me. It has made my life whole again.
I was born with kidneys that did not work. As a baby I had one removed and somehow a surgeon got the other one to function. I was not allowed to play rugby, but apart from that I was a normal kid.
At the age of 13, I started to get headaches, feel tired, thirsty and needed to go to the toilet more often. I was told that I needed a kidney transplant as the kidney I had was no longer working. I am one of the lucky ones as, following all the tests, my parents and sister were all compatible. Dad donated the kidney and I had the transplant. After a rocky year, things went really well. I was able to finish school, study medicine at university and travel overseas. I got married and had a lovely daughter. Things were great.
Then came the illness. I contracted a virus that resulted in the transplant failing. Despite the excellent treatment I received, the only option was another transplant.
My wife was pregnant with our second child at the time and my mother decided she would donate her kidney. Unfortunately there were problems with the blood vessels on one of her kidneys, so she needed to go through a long series of tests and reviews before she was able to donate.
Eventually the surgeon agreed to remove her kidney, repair the blood vessel and transplant it into me—a risky and rarely performed procedure.
After a period of eight months existing on dialysis, not sleeping and feeling tired all the time, during which time our second daughter was born, I had the transplant. After 24 hours, I was better, being able to live and be a husband and father to my family again.
Since then, I have completed my medical training and I am now a Physician. I am eternally grateful to my parents and sister for their love and support, staff at the renal units and to my wife and children who have supported and stuck with me through it all.
Because of Dad, I graduated to become a nurse.
The day that changed our lives forever!
I still can’t believe six years has gone by so fast! It only feels like yesterday that Dad was fighting for his life in hospital, hooked onto a dialysis machine.
It isn’t something you want to hear at age 16 that ‘your father has kidney failure’. I didn’t even know what that meant! All I could think of was ‘would my father ever be alive to watch me grow up?’. But those who know my dad know what a strong, determined man he is.
He was my inspiration to become a nurse. Through the six years he never took life for granted. He continued a normal life with a few exceptions for dialysis. Even as a nursing student I supported organ and tissue donation and have registered as a donor myself.
Our prayers were finally answered a week ago. My dad got the call and was speechless. His first thought was for the donor, of how grateful he was for receiving a second chance in life. My dad is progressing well and is already looking better. I am truly grateful for the generous donation of the family and urge people to sign on to save lives!
A chance diagnosis led to a transplant
I was always registered as a potential organ donor, never once considering that I may one day become a recipient. I knew little about organ donation other than it saved lives and I knew of no one who had ever had a transplant.
Unexpectedly, on a routine visit to my GP, I was diagnosed with high cholesterol and needed medication to control this. A liver function test was carried out before I could take the medication and a liver problem was found.
Several months passed with more GP visits, a referral to a specialist and more tests before a final diagnosis was made. I had a disease called primary sclerosing cholangitis which, due to inflammation and narrowing of the bile ducts in the liver, causes the accumulation of bile in the liver and liver cell damage. It is a disease with no known cause and a transplant was the only cure.
This all sounded a little far-fetched to me as my health was good. After a couple more years, small problems arose such as infections, meaning short hospital stays. My life was on hold and I took sick leave from my teaching career.
I began the wait for a donor—an agonising time for my family. With the uncertainty of a suitable donor being found, I became yellow, more tired and unable to cope with normal day-to-day routines. I felt helpless when I could no longer do my patchwork and quilting.
One year after going on the waiting list, the call came that a liver had been found for me. After a lengthy surgery and recovery period I was back to my old self again, being able to do all the things I used to do. Now retired, I can focus on new activities.
My thoughts will always go to the family who lost a loved one. Their generosity in a time of grief is admirable and ‘thank you’ does not seem quite enough.
I am now committed to spreading the word about organ donation through my volunteer work with DonateLife and Transplant Australia.
Ali was 32. She was my wife and devoted mother to our two beautiful children, James (three) and Stella (one). When she collapsed at home in the early hours and called out to me I knew straight away that something bad was happening, but I wasn't prepared for just how bad. I didn't know it at the time but Ali was suffering a brain haemorrhage.
She made it to hospital and was still trying to move before being airlifted to hospital. By the time doctors were able to assess her she had suffered a second bleed and there was nothing they could do. I was devastated, mostly for our children who would now grow up without their mother, she loved them so very much.
Ali loved medical shows on television and made me watch them more than I liked. Because of this I knew what was coming next—the question of organ donation. We were registered donors but registering is the easy part. It was the hardest decision of my life. Hard because it felt like I was giving up on Ali, giving up on us and giving up on our children. Miracles happen, right?
Miracles do happen, just not for our family that day. Ali delivered a miracle to four other families whose lives have been changed forever. It has provided our family with some comfort to know that our Ali has been able to give something so special to four very sick Australians. If she were a soldier they would be awarding her a VC. Now Remembrance Day for me will be about remembering Ali and her life of giving to others.
Phillipa and Scott
My name is Philippa and one year ago my husband, Scott, died unexpectedly from complications associated with swine flu. Scott and I had discussed organ donation and we were both keen to be donors, if the time arose.
The only relief on the day that Scott passed away was that I knew Scott's wishes around organ donation. There was a peace in conveying Scott's wishes, along with a tremendous sense of pride that my husband was about to save lives. Scott's kidneys were successfully transplanted to two recipients, which freed them from dialysis; a life-changing and life-saving outcome.
Scott loved life and was so excited and optimistic about the future. He enjoyed going for walks, playing with our cats, playing on the computer, cooking, gardening and enjoying good food and great wine.
Scott was always passionate about medical research, having worked in the pharmaceutical industry for the whole of his career. I know he would be pleased that his death was not in vain and that, through his death, others had been given a second chance of life. Scott also loved science-fiction, so I think he'd be amused at the idea of his tissue living on, long after him and advancing medical research. Scott always said that the happiest and proudest day of his life was our wedding day. This was definitely my happiest day, but my proudest day is now the day that Scott became a hero and saved lives.
I hope that in sharing Scott's story, others will have a conversation with their loved ones about organ donation and agree to become organ donors. Please give the gift of life
Adam before and after his liver transplant
Any better and I would be a super hero
I had a healthy childhood, married my wonderful wife and had three beautiful girls. Then, at age 41, my life changed. I was diagnosed with cirrhosis of the liver, caused by a genetic disease, Alpha 1 Anti-Trypsin Deficiency Syndrome.
I spent the next four years in and out of hospital and everyday things became hard. Feeling sick, discomfort, fluid build up, breathing difficulties and low energy levels made the simplest jobs difficult. Sleep became a thing of the past. I was pacing the house or hospital floors, watching TV and dealing with constant cramps due to fluid inbalance.
My family was under pressure, visiting me in hospital and wondering how long this could go on. Trips from the country to the transplant team fitted in between hospital admissions.
I was put on the transplant waiting list, and during a draining visit in hospital, I received 'THE CALL'. I was flown by air ambulance to hospital and, due to the wonderful gift of one individual, I received my new liver.
I spent one week in intensive care, due to kidney failure. My kidneys recovered and I spent two more weeks on the ward before flying home.
Eight months on, I visit the transplant team every three months. I don't know how long I was sick before I was diagnosed, but if I was any better now I would be a super hero.
I am very passionate about organ donation and help any chance I can get with the cause in our area. The transplant team is fantastic and deserve credit, as well as my specialists and GP.
Finally to MY donor family and to all the other donor families, thank you for changing our lives. Your loved ones will never be forgotten They live on in all of us.
Brent before the transplant and Brent today.
From death’s door to the Wiggles and John Lennon
As Brent lay in a coma our family travelled from across the country to say their goodbyes, but Brent was to have another chance. The tragic end of one life gave him a new beginning when he received a donor liver—just in time.
Unlike most children who need transplants, Brent developed rare hepatitis very rapidly and without warning, which meant we and the hospital staff had to swing into action quickly. To find a suitable liver within 24–48 hours. This required a miracle and luckily —it happened.
Fast forward 15 years and Brent is now 18, has just finished secondary school and is contemplating his tertiary options. In the years leading up to now he has been predominantly fit and healthy. He has achieved academic success and enjoyed playing football in junior ranks, culminating in captaining under 14’s into the finals. Unfortunately his smaller body and enlarged spleen made it too dangerous to continue against bigger bodies that had not been subjected to years of anti-rejection medication.
His childhood fascination with the Wiggles gave way to a love of the Beatles and in particular John Lennon. Brent has now taken up playing piano and wearing round sunglasses!
Brent’s biggest adventure since his liver transplant was a snow skiing trip to Switzerland with other transplant kids from around the world—a trip he made without his mum and dad. His biggest concern about going to a foreign country alone was ‘what do they eat over there?’.
Brent is a passionate member of the Richmond Football Club and attends games whenever possible, travelling to Melbourne on the train with his mates; a far cry from the very sick little boy with little or no chance of survival as I (his father) was told one dark, cold night.
None of this would have been possible without the gift of life given to Brent by a total stranger, someone that we have never known or ever forgotten.
Allan (Brent’s father)
10 years on and still going strong
I’ve had bronchiectasis all my life as a result of whooping cough when I was two years old. My lung function got so bad I knew a dose of flu could be fatal so I dreaded every winter.
A few years ago my lung function was so poor my doctors told me I should seriously consider going on the lung transplant waiting list, where the average waiting time was 12 to 18 months.
After waiting 15 months I received a phone call telling me suitable lungs had been donated. After nine hours in the operating theatre with two surgeons working together, the operation was a success and I was taken to the Intensive Care Unit to recover.
The first time I tried to walk was very hard and I needed the support of the handrails on the wall, but gradually I got stronger. The following three months involved three sessions a week at the physio gym, numerous doctors appointments and giving blood regularly. The medication consists of over 30 pills a day and at first it was very daunting but now it is a habit like cleaning your teeth.
As we had been away for 18 months it was very emotional arriving home and being met by our family. I couldn’t wait to go to the beach for a swim and to be able to enjoy the clean fresh air and ocean water.
I feel stronger as time goes by and since my double lung transplant the transformation to my life is amazing. I feel very privileged having a second chance at life and am very appreciative to all concerned. It wasn’t easy but positive thinking and a very supportive husband helped me get through it.
Vern and Justin
16 extra years...thank you
At the age of 49, our lives took a sudden change forever. After returning home from a beautiful day with friends and family at the local Christmas parade, a viral infection caused me to have a cardiac arrest. A quick thinking new neighbour performed CPR and got my heart and breathing started, after which an ambulance transferred me to our local hospital. Six hours later I woke up in hospital very confused by what had happened, and it was then I was told that the permanent damage to my heart had left me with cardiomyopathy.
I was transferred to hospital via air ambulance for further treatment, and returned home again in time for Christmas Eve. I later travelled for more tests, only to realise due to the nature of my condition I would be unable to return to work.
I was assessed for a heart transplant due to the deteriorating health I experienced. Months later we got a call to notify me that a compatible heart had become available for transplant. We flew to Melbourne immediately and I received my heart transplant.
At this time we were the proud grandparents to three grandchildren with the youngest being one year old. Prior to my transplant, the only way I could hold him was if someone put him on my knee.
We now have four granddaughters and four grandsons. I am so pleased that I have had a further 16 years of life following my transplant that I otherwise might not have had. My wife and I recently celebrated our 50th wedding anniversary—a milestone I just would not have been able to achieve without my transplant.
All this with thanks to our wonderful donor family.
Cheryl and Greg
A gift to treasure
My kidney failure had been a relatively slow process until the beginning of 2010 when I became very unwell. In April of that year I started dialysis and in August began home dialysis.
Even though you are told not to let dialysis rule your life it becomes very difficult when you are hooked up to a machine three days a week for five hours. You don’t feel like doing anything after dialysis so your social life changes. I am a primary school teacher and dialysis affected my work—which I enjoyed very much.
I had a kidney transplant. I received the kidney from my amazing partner Greg. Before the transplant took place my partner and I were well aware that we were high risk. I had some antibodies which I had got from a blood transfusion when I was 18. My partner’s kidney had a couple of extra arteries which could make it difficult to attach to me during the transplant.
Following the transplant I had to have plasma and albumin exchange which hopefully would suppress the antibodies and help my body to accept the new kidney. This took place over a number of days each week for 11 weeks. I am finally not attached to any machine but still going to the hospital two days a week and have to be monitored very carefully.
During my time at the hospital Greg and I have met and become friends with many kidney transplant recipients. Like myself their lives have been changed for the better.
Everyone’s story is different, but the one thing that is the same is the gratitude and thanks we all feel for the families who made the decision to donate their loved one’s organs—or in my case and some others, a family member or loving partner—who were selfless in their decision to donate their kidney so as to make our lives healthier and happier.
Jason became a donor at age 18.
Jill and Keith
A life too short
Jason was nearly 19 years of age when he died. He was accidentally killed while attending an automotive spare parts traineeship.
Being the eldest of four children (two brothers and one sister), Jason was a very loving, caring and loyal son and brother with his family always coming first. Life was lived to the fullest, always in a hurry as though time was running out. He loved V8 cars, motorbikes and loud music along with his mates.
At 15 years he commenced work as a salesperson with an electrical store. Having the ‘gift of the gab’ he made many sales. Being an avid reader, Jason loved company and telling stories.
When Jason acquired his driver’s licence at the age of 17 he proudly announced ‘I’m an organ donor just like mum and dad’. His aunty commented that she couldn’t be one. His response was ‘When you’re dead you’re dead. If you can help somebody else you do’.
When Jason was pronounced ‘brain dead’ the doctors noted ‘Organ Donor’ ticked on his licence. As parents, never in our wildest dreams did we ever think we would be in this position. Jason’s words echoed in our ears there was no other alternative but to fulfil his wish and give our consent.
We are very proud of his decision. It is of great comfort that he saved four people’s lives, two being imminent deaths. His life was not in vain!
The Service of Thanksgiving is a wonderful event which we have attended every year since Jason’s death. The Closing Song ‘What a Wonderful World’ always brings tears to our eyes.
We have shared in something very special over the years, thanks to Jason and all the other organ donors. May They All Rest in Peace.
Jill and Keith
A mother's story
I had lovingly and willingly cared for my son on dialysis for eight years. In this time I watched his body weaken, suffering setbacks and health problems, until that long awaited phone call came at 4am one morning.
Before this, his diet was strict - vegetables that had to be peeled and soaked in separate bowls of water for three hours, and then re-boiled in unsalted water; protein was limited; and, no more than 500mls of fluid in any one day.
After two years of dialysis every alternative day, his loving father was diagnosed with non-Hodgkin’s lymphoma and our nightmare began, alternating between dialysis, chemotherapy and radiation. Sadly my husband died three years before our son received his transplant. He died traumatised at leaving me with a very ill son, and my grief was intense, but somehow I gained the strength to continue.
‘Yesterday is history. Tomorrow is a mystery. Today is a gift, that’s why we call it—the present’. This little rhyme became my bible!
When my son was driven to hospital to have his transplant, I cried. I appreciated the sacrifice that had been made by another family somewhere. In their time of utter despair and grieving, they had agreed to donate the organs from their loved one to rescue the lives of others—of complete strangers.
My son’s life would be transformed. What generosity – what humanity. I silently and tearfully thanked the donor and their family.
Severe pain and a lengthy battle against infection and rejection awaited my son as we outwardly showed confidence it would be successful. But he is a tough one, my son, and once well again, started to experience the freedom of a normal healthy young man. I am only sad to think of the joy my dear husband didn’t see – his precious son released from the bondage of dialysis.
The support we received from friends and family aided in his recovery, and our eternal gratitude goes to our donor family, who we thank annually for their most wonderful ‘Gift of Life’.
A new liver, a new life
It all started when I was born and diagnosed with Alpha 1 antitrypsin deficiency—a rare liver disease. When I was three months old I had to have an operation so the doctors could find out more. After this, other than regular medication and doctor’s appointments, I wasn’t really affected by this disease until I was 12.
Towards the end of grade six, I was always sick with stomach aches, migraines and I never had energy. My stomach was filling up with more fluid each day as my liver was not able to do its job. This resulted in me having to quit sport and my skin and eyes turned yellow from jaundice. I was eating non-stop and never feeling full. I was just skin and bone and had no muscle tone. I wasn’t able to attend high school normally like all my friends because I was always tired, sick or had to go home. After a while I had to stop going to school altogether.
I was put on the transplant waiting list and was told that it could be up to two years before I got a liver. Although it was making me really sick, I always tried my hardest not to give up all the things I love. The day before my transplant I went to football training and played with my team mates.
We got a phone call saying that they had my new liver only two months after going on the list.
After just six weeks in hospital I was sent home feeling the best I had ever felt in my life. My energy and fitness started coming back and I could start playing basketball and football again. My new liver is the best present I have ever been given.
Four years after my double lung transplant.
A new beginning
I had a double lung transplant. Six months previously, I had been sent home from school with a headache. Over the next couple of weeks I progressively became sicker until I was eventually diagnosed with mycoplasma pneumonia and was ventilated in ICU for a few weeks.
My family, friends and I all thought we were incredibly lucky when I was able to be taken off the ventilator and moved back to the ward. Three months later I was still in hospital and requiring constant oxygen and a wheelchair. At this stage I was diagnosed with end-stage respiratory failure and bronchiolitis obliterans.
This is when the wonderful paediatric team came in to our life. I was accepted onto the transplant waiting list and then transferred to the Children’s Hospital for three months while I waited for a donor.
The team had originally planned on a heart/lung or double lung transplant from a child, but when no suitable organs were available, they decided to use adult cut-down lungs. This proved to be a great success.
After six months living in hospital and using a wheelchair, I was able to walk out only ten days after receiving the transplant.
The first couple of days post-transplant were very long and hard, but once I got past these my recovery was a breeze. I stayed a further three months for rehabilitation and then my family and I returned home just in time for Christmas. I returned to full-time school and apart from a few overnight stays in hospital for minor infections, I have been extremely well ever since. We now live on the Central Coast in NSW and I enjoy life to the full!
I have competed in two transplant games, where I have won several medals and experienced great things. My family, friends and I are so grateful that the paediatric lung transplant team exists and know that we owe everything to them.
My son Jackson was a very positive person who was extremely loyal to his family and friends. His greatest love was paddling out in the ocean to enjoy a good surf. He was very protective of his family especially his younger brother. He could always put a smile on my face through his fun loving personality.
Jackson was 17 when his life was tragically cut short due to being a front seat passenger in a high speed car accident. His younger brother Rhyley was a passenger in the back seat when the car careered out of control and hit a power pole.
Rhyley kept his brother alive until the paramedics arrived. Jackson was then air lifted to hospital sustaining massive head injuries.
My two sons and I had spoken before about organ and tissue donation. Jackson had told Rhyley and I that he didn't want to stay alive on a life support machine and that he would like to donate his organs if ever anything like this happened to him. His attitude was 'they are no good to me if I ever die'. He knew that by donating he would be saving other people's lives.
In living and dying Jackson was never ever a selfish person. He was strong and young and healthy. He was also a rare blood type which meant that the recipients he saved were people that had a very slim chance of receiving these organs.
I am very grateful for having had discussions with my boys about organ donation. When asked about donating Jacksons organs I felt the decision was easy, at such a traumatic time, because I knew what he would have wanted.
Jackson has made me, his father, his brother, and our families so proud of him in his short life.
When I was 14, I was dying. I said no to transplant a million times and even walked out of clinic appointments whenever it was mentioned. I thought that being born with cystic fibrosis meant that dying was my destiny and that was OK with me.
At age 15, I did the work up and I was put on the official waiting list for a double lung transplant. I waited almost four years for a donor. Because I am very small in stature and I have a specific blood type, the wait was grueling. When I was 17, I had a stroke and I believe that this deprivation of my abilities was what gave me the strength I needed to keep on going until I got my second chance.
A year later, I received the phone call (the frantic footsteps up the stairs confirmed it). No matter what happened from that moment on, I had a chance at living. I felt peaceful, though sad that somebody must have lost their child that night...and that's never an easy thought to process.
After it was all over, I could not believe the inhale could be so long and not in gasps! It was the most amazing feeling.
Since my transplant I have done things that I have always wanted to do including becoming a qualified youth worker/counsellor to young people. I volunteer support to young people living with chronic conditions, I help run support groups, I have been part of a rotary club, I have spoken at international and national events and I also sit on an advisory council for the children's hospital.
I have learnt to appreciate the people who love you. I have watched 17 of my very close friends pass away from illness and complications. But they all taught me something that I take with me through this journey and for that I am always grateful.
I think of my donor family literally every single day. I think of their loved one and I'm always imagining they are enjoying things alongside me. I think the word hero gets thrown around so flippantly these days....but donor families are true heroes in every sense of the word. They literally save the lives of people they have never and will most likely never meet. In their darkest hours, when they are at their most vulnerable and in so much pain...they choose to save lives and bring a light to the end of the tunnel for so many people who are suffering. That is something i will never ever forget for as long as I live.
I think that you need to be able to see the beauty that every single day brings to you. And if one day you are having a really hard time seeing it, then make the beauty yourself. Go out and try something new, do something new, see someone you love and be grateful you have them there to make you smile. Life is there to enjoy and I'm so unbelievably lucky to be here to experience it in all its glory!
I should be so lucky
It was ANZAC Day 2001 when I was rushed to hospital with agonising pain in my right flank. After some tests the emergency doctor informed me that I had polycystic kidney disease (PKD). This was what had eventually killed my grandmother, father and his three sisters. I was devastated and felt like I had been given a death promise.
On returning home I was monitored very closely for the next seven years, then it was decided that I simply couldn’t hold off any longer and needed to go onto peritoneal dialysis. That became a bit of a nightmare for me. My diaphragm was perforated and the fluid was leaking into my lungs. The doctors decided to perform a pleurodesis which basically glued up my lungs and stopped the leakage.
The procedure worked well and I continued with my work thanks to the exceptional support from my new employer. I dialysed four times a day and did one of the exchanges during my lunch break in a quiet corner of the lunchroom. My husband, and then one of his sisters, tried to be a donor for me but both were ruled out through medical reasons of their own. If it hadn’t been for the stringent testing they went through they wouldn’t have known about these problems.
My younger sister in the meantime received a kidney from her husband and my older sister had also commenced PD. There are about 20 other members in our family who also have PKD so the hope of any relatives being donors was almost nil.
I was put on ‘the transplant waiting list’ and received a phone call at 11:30pm one night to say that there was a kidney available.
Did I want it? Did I what! How lucky was I? I recovered so quickly I was amazed—as were the staff at the hospital. I was discharged on the fifth day after the transplant.
I cannot thank the donor or their family enough for the gift they have given me. To those who are waiting, don’t stop praying—it will happen.
Jan and her daughter Jay
Having life is simply the best
I am about to celebrate my 60th birthday this week—57 years longer than my original life expectancy!
I was diagnosed as a child with cystic fibrosis. The numerous hospital visits each year were good because they gave me time to rest from playing and fighting with my brothers—I was the only girl. To me, regular hospital visits, coughing and wheezing was normal.
It was all I ever knew.
As life and time went on, so did my illness. I never let it prevent me from living my life. My saying is 'I'm here for a good time, not a long time', and I've done both. After being told that I was not expected to live, I ensured my life was filled with quality, living life to the fullest, partying, spending time with my beautiful daughter and great friends. I felt good pre-transplant when I lived and worked by the ocean. The sea air did wonders for my lungs.
A transplant was the only option to continue on life's journey. I remember one time I was not expected to survive the night. That was until a 6ft gorgeous nurse named Laurie came to look after me. I thought to myself—I'm not going anywhere!
My memories of waiting are positive due to the friendships formed with others waiting too. Not everyone survived and not everyone received a transplant, but the friends I made at that time and the transplant co-coordinator were invaluable to me.
I waited just over two years for my transplant. Surviving afterwards was a concern for the doctors, but not for me. I knew I was going to live. 24 hours after the operation when I was chatting away, the ICU nurses were ready for me to go to the ward. The staff were excellent.
I felt free. No coughing, no wheezing.
Eight years ago I was given a new life and a new responsibility. I wanted to look after my new lungs for they belonged to somebody's loved one.
I admire and I am forever thankful to the donor family. If it wasn't for them, I wouldn't be here with my beautiful daughter and she wouldn't have her mum.
Having life is simply the best.
Kerri and Terry
When a tragic skateboarding accident led to a midnight phone call, a trip to the local hospital, and a high speed ambulance transfer to hospital, we were met with the news that Peter was unlikely to survive his critical head injuries. Peter was placed on a ventilator and, as a CAT scan revealed, he had brain injuries which would probably be irreversable.
We maintained a bedside vigil as his sisters flew and as family drove through the night to be by his side.
Peter's deam was to become a doctor or paramedic. He wanted to make a difference and save lives. He was an advocate for blood donation and as Captain of his High School he had instigated blood donation as the main focus of his year on the Student Representative Council. It was a natural progression when he gained his licence that he tick "Yes" to the organ donation question on his licence. Peter had discussed it with me, his mum, in passing and asked if I was an organ donor and in an offhand manner I replied I was. We never really discussed it as I never really considered it likely to happen.
Peter died in the early morning, around 11 hours after his accident, of a fatal heart attack caused by swelling of his brain and massive blood loss. This type of death in a country hospital prevented organ donation. We were doubly disappointed that his final wish to save lives was not realised.
Today, however, Peter is saving lives through a special 'Be Positive 4Pete' group which anyone can access on Facebook. Over 1500 new donors have signed on to donate on his behalf. The 42% increase in local donation which has in part contributed to the new and expanded service in Coffs Harbour.
The distress of lack of knowledge about organ donation has led to my interest in education about organ donation in schools. As the local teachers, students and Nurse Educators bring this program to the Valley, Peter's dream of saving lives will be realised.
We hope 2012 will bring the message to schools throughout NSW so that other families are able to fulfill the wishes of their family when they make the ultimate decision.
Kerri and Terry
Proud to be a DonateLife Ambassador
I am proud to be a DonateLife Ambassador. I have been a registered organ and tissue donor since the 1980s, and have carried the card in my wallet. I’ve also made sure my family know what my donation decision is.
When my mother passed away four years ago, at age 84, I consented for all of her organs and tissue to be donated. They were able to use her corneas to give other people the gift of sight. The decision was easy because I believed so strongly in the good that could be achieved through donation and because I knew it was something she wanted.
I think people have the perception that only young, healthy people can be donors, but this is not the case. Even in cases where organs may not be viable, tissue can still be donated.
Talking about organ and tissue donation with your family can be hard, as people find it hard to talk about death, but it is so important. Your family need to know your wishes – because one day they could be asked to confirm your decision at a very sad and difficult time. Knowing their wishes makes your decision that much easier at such a difficult time.
In 2010, 309 Australians generously donated their organs and tissue for transplant – saving or improving the lives of 931 Australians.
Just knowing that when you die, you can help somebody to live is a truly amazing thing.
Thirty-six year-old Simon was a sculptor. He said, ‘If you were to ask me where my passion comes from, I would tell you that it comes from my need to create art. There is so much that I find inspirational that I often cannot work fast enough to get it all out. I often have no idea where it comes from—I just make the most of it. Carving stone is incredibly healing, satisfying, challenging and necessary for me.’
Simon wasn’t just my eldest son, he was my best friend. His spiritual nature and warmth meant he cared about the earth and the people on it, was willing to help those in need and generous with his time and resources.
He’d always been artistic—playing with a toy guitar at 18 months and later playing guitar, piano, didgeridoo, writing songs and singing. He studied art and design then teaching. He found his true voice when he took a stone carving lesson from a Maori artist.
‘Most of what I have wanted to say in recent years has probably been better expressed through my sculpture. Words alone couldn’t have said enough and I needed to learn a new language. This language comes from within and like any native tongue it feels natural’, he said.
For the last 11 years of his life, Simon worked full time as an artist—gradually building up a portfolio of work and exhibiting in Australia and New Zealand.
Large commissions started coming in and his work now graces establishments including Hilton on the Park, the Crown Casino and the Women’s and Children’s Hospital along with many businesses and homes.
Simon didn’t take anything for granted. He was a huge giver in life—of his heart and his time so it stands to reason he’d be a giver of life in death.
From one brother to another: Kelvin’s kidney donation
My story begins with the declining health of my youngest brother Roger, the youngest of eight siblings. He was a dairy farmer with six kids of his own and was fit and healthy at 35 years old. It came as a shock to find out that his kidneys had failed him and he had become dialysis dependent.
From day one I offered to be a living donor for him, if ever that time came. For the first two years he tried peritoneal dialysis until his nephrologist told him he was deteriorating and needed a transplant. Roger is a guy who is too proud to ask for help. But this was a situation he could not get through on his own. He needed a kidney—I’ve got two—so I decided I was going to give him one of mine!
I went to the nephrologist to see if he thought I was capable of a donation. He gave me the OK. The next six months were a constant array of blood tests, MRIs and angiograms. Although this was annoying at times, these tests were needed to determine which kidney was best to take, and how healthy they were. Everything was fine, and a date was set for the transplant.
Leading up to the operation I felt confident that things would go well. I was quite nervous and scared on the morning of the operation, but the nurses were fantastic and put me at ease. The operation was keyhole surgery. The pain after the operation was managed with medication. I was out of hospital four days after the operation and went back to work after five weeks.
I set myself the goal of running the Burnie Ten four months after the operation, and that was achieved. This gave me the confidence to get back into playing football again, with extra padding of course, the following year.
Now nearly three years on, my body is feeling great, I have had no complications at all and feel no different than I did before the operation. Roger’s new kidney is also doing well, so it has been a success so far, and one of the most rewarding things I have ever done. My wife Megan was a constant support for me through all of this and I can’t thank her enough.
Kerry and Ian.
As a kid growing up in a small town, Kerry was not only my big brother, he was also my mate and someone I looked up to. Our friendship became even stronger when we were playing sport together.
When I first found out that Kerry was sick with lung disease, I didn’t think anything of it at the time. I thought that with a few medications he would get well again and things would be back to normal.
However things were to take a different turn with the realisation that he was never going to get better—only worse. I was at Kerry’s place every day, assisting both him and his wife with everyday chores that he was unable to perform. I was his window to the outside world, a shoulder for his wife to lean on and support when the going got tough.
His illness brought us even closer, although I missed the person that he used to be. I missed being able to do the things that we had once done, laughing at a silly joke, going to a footy match and even going out for dinner.
Words still fail me if I try to describe how I felt when the call came through to tell us that he was going to get his life-saving lung transplant. I had given up hope that it was ever going to happen.
Life since his transplant continues to be surreal. We are closer now than we ever were—spending time together, and enjoying life because we know how close he came to not being here.
I am forever grateful to my brother’s donor family for their selfless act. Without them I would not have my brother here today. Thank you so much.
The best thing you’ll ever do
For any of you who are contemplating donating a kidney to a loved one, I can only encourage you to do it.
Making the decision to donate a kidney to a friend in end-stage renal failure wasn’t easy, but I have never regretted it.
The transplant was four years ago and my friend is doing really well (completely normal!). I have taken up jogging and will compete in my first half marathon this April.
I’m not saying there aren’t risks—but it can be the best, most rewarding decision you ever make!
A second life through the gift of sight
In 1953 I was losing my sight because of the genetic condition keratoconus. A surgeon told me a graft was a risky procedure but it could be beneficial.
I had tried contact lenses but they were hard and uncomfortable, so I wore them only when I had to—on special occasions such as going to the pictures with my boyfriend.
I didn’t sit down and say ‘poor old me’. Facing legal blindness at the age of 21, I thought I should go for it.
The donor was believed to be aged 80. Six months after that first successful operation on my left eye, I received a second cornea in my right eye and became the first person in Australia to have two successful corneal grafts. The first cornea was replaced and had lasted two people 130 years.
Following the operations I had to lie still for days, sipping blended food so I didn’t move any facial muscles. My head was packed with sandbags and I remember the dressing being removed and being asked how many fingers I could see.
The surgery opened up all sorts of new avenues for me. As a trained comptometrist (a comptometer was a forerunner of the calculator) I returned to work and gained my driver’s licence. I then graduated with a Bachelor of Education majoring in textile studies and later became a Lecturer at TAFE.
At the age of 55, I learned to play the trumpet and then the French Horn, following a musical thread that ran throughout my family. I established two community bands for adults with little or no prior knowledge of music. It gave me immense pleasure and a real sense of camaraderie.
I am now quilting and doing other craft work, drawing on knowledge gained through studying graphic design and have also traced my family history.
The blessing of sight has given me a very different life.
Kokoda Trail–Anzac Day 2011
My name is Jessica. I am 20 years old and was born with a condition called biliary atresia, which is a blockage of the main bile duct from the liver. This led me to have a liver transplant at the age of nine. I was lucky that my liver lasted until I was nine, as most require a liver transplant straight away.
I remember in my early school years I was often not able to participate in sports and activities at lunchtime as I was sick, tired and had no energy. I was always in and out of hospital with infections to the liver which made me jaundiced.
Once I had the liver transplant the jaundice went and I slowly regained my energy levels. I have learnt to live life to the fullest and take every opportunity given to me.
I picked up sports such as netball, dance and swimming. I was starting to feel like I really fitted in with all the other children and my friends at school. I graduated, studied and received a Diploma in Fitness.
I trekked the Kokoda Trail with the Kokoda Brothers starting on Anzac Day. There were 25 Australians of all ages (whom I made friends with) and 20–25 porters. The 96 kilometre trek through heavy terrain over eight days was the hardest, yet best experience I have had to date.
This year I completed my first 14 kilometre Run for Kids walk (with a friend Kate who has also had a liver transplant), the Royal Childrens Hospital Good Friday Appeal and also a 12 kilometre run for the Geelong Hospital Childrens Ward.
This year I volunteered with Transplant Australia to help raise funds at events. I will continue to participate and volunteer for these important causes that have helped shape my life today.
Please register to become an organ and tissue donor like myself and please discuss your decision with your friends and family during DonateLife Week.
As a mother of three small children, contracting glaucoma and nearly losing my sight was rather traumatic. It left us wondering how we would cope raising a family and being able to give them all that was necessary with limited or no vision.
With expert medical care including trips to the eye hospital, my sight was saved and although far from perfect, being able to raise a loving family and enjoy our wonderful grandchildren has been precious.
I suffered a severe infection of the right eye following surgery which was necessary to control the glaucoma. The infection could mean possible total loss of vision and potentially the eye itself.
My eye went from what initially felt like a minor irritation to oozing pus and severe pain within 24 hours. My surgeon commented when he first saw me that he may not be able to save the eye, let alone the sight.
But, due to the skill of my ophthalmologist and donated sclera (the white of the eye), I still have an eye and some sight.
I am ever so grateful for the care received and particularly to the family of the person who donated tissue enabling me to still have sight and quality of life. What a wonderful gift it has been to still be able to see the smiles on the grandchildren’s faces, to appreciate lovely scenery, to be able to do housework and care for my favourite roses.
My husband and I are registered organ and tissue donors and our family are well aware of our wishes. We urge others to discuss organ and tissue donation and make a positive decision to help someone else in need.
Bryce (brother), Rick (dad), Josh and Sandi (mum).
Imagine you’re 13 and someone said your mum was dying. Without a liver transplant she wouldn’t survive till Christmas. Imagine knowing that to save your mum, someone would have to give the ultimate gift of life. This was my family’s reality some years ago.
As Mum’s condition grew worse, she clung to the life she had left, but slowly it was slipping away. Then at midnight we received a call that changed our family forever as a donor liver had been found. Mum went straight into surgery and it went well. While there were still many post-transplant challenges, Mum met them all and returned to near perfect health.
This moment forever changed my life. Between the dedication of Mum’s medical team and the courageous and selfless gift of life from the donor family, I wanted to give something back.
In 2005 at age 15, I saw the Tour de France and an idea hit me—a ride to raise awareness and get people talking about organ and tissue donation. Two years later I completed the inaugural Awareness Ride during Australian Organ Donor Awareness Week, cycling over 1,800km and raising much needed awareness. Then in 2009 another cycle ride took me from Cairns to Brisbane, helping to further spread the word about organ donation.
Recently Mum needed another transplant, and again thanks to a kind selfless donor, one was found. They say each donor can help the lives of up to ten people and I knew that if I could change one person’s perspective on organ donation, then indirectly, I might improve the lives of ten.
I encourage everyone to think about organ donation and talk about it with your family. Imagine if your discussion or decision resulted in saving one life, or even ten. To you, I’d be forever grateful.
My husband was very ill though I had no idea how ill! As we saw doctors and specialists the seriousness became more obvious. He had cirrhosis of the liver and needed a new organ. I believe that his ‘bloody mindedness’ helped him to get through this difficult time. Apart from the ascites, loss of weight, peritonitis, tiredness and multiple visits to doctors and hospital, in hindsight, we now realise just how fortunate he was to get a transplant after only five months of being on the waiting list.
We got the ‘magic call’ at 10.30pm for the surgery to take place first thing in the morning. Although the operation itself was a great success there were some complications with several infections but this was a small price to pay for the chance of a new life.
Just six weeks after the transplant he was back in for major bowel surgery to correct the peritonitis that occurred as one of the complications. Two major operations in six weeks, but thank goodness he was strong enough to get through both of them.
We have sent ‘thank you’ cards to the donor family every year (these are sent via the Liver Transplant Unit) but my husband and I thank them every day for their very difficult and wonderful decision to make their family member a donor. Their ‘tragedy’ became our ‘miracle’.
My husband will celebrate seven wonderful years of extra life thanks to them! The only way he feels he can acknowledge this wonderful donation is by keeping as fit and healthy as he can; cycling several kilometres a day, eating as healthily as possible and living life to the full. He really does deserve to be well and he works hard to keep fit. I am so lucky to still have him here with me and my heart breaks for the donor family whose situation is so, so different. Our thanks will never be enough.
Finally I can breathe
My name is Laurn and I was given the gift of life.
I had cystic fibrosis with probably the worst infection in the lungs you could have. I went on the transplant waiting list and waited six months before I got the call.
When I woke up in ICU two days later I couldn’t believe the difference. I could breathe without gasping. I was in hospital for two weeks. During that time I was walking around the hospital, riding the exercise bikes, things I hadn’t done in I don’t know how long.
It’s been nearly nine years now and I have never had any rejection or problems with my lungs in any way. I’ve gone on to learn and work in the career I’ve always wanted but was never able to do before.
I think of my donor and their family often. To be able to make the decision to donate at such a time of loss must be so hard. I lost my brother to cystic fibrosis two and a half years before my transplant while he was waiting for his call.
Organ donors are the real heroes in our society, not sports stars. They aren’t saving peoples lives and giving them a second chance. The organ donors do that. They are heroes to every transplant recipient and their family. Without them we wouldn’t be here. We can never express our gratitude enough. Thank you just doesn’t cut it. But we can live and move forward, we can take our second chance and run with it. The best thing we can do is live for ourselves and for our donor who is with us every step of the way.
To every donor and their family, a massive THANK YOU for giving us a second shot at life!
An honour and a privilege
As a health professional working in organ and tissue donation for the past 21 years, I feel very privileged to have witnessed first hand the generosity of donors and their families who have considered and agreed to organ and tissue donation at an incredibly traumatic time in their lives.
Working originally as a Donor Coordinator, I was closely involved with the family, providing them with information and support and guiding them through the donation process. It is very humbling to sit with a family while they share intimate moments and recall anecdotes of their loved one with you. The decisions that they made have literally saved the lives of hundreds of Australians and enhanced the lives of many others.
Over the years, donor families have helped health professionals too. They have helped to shape our practices by providing us with valuable insight into their needs and how we can best support them. In my current role as Agency Manager, I manage the provision of bereavement support to families and education to staff in hospitals to ensure that families are offered the opportunity of donation in a compassionate and respectful manner.
In reflecting on my experience with donor families, I would say without hesitation, that many families have drawn comfort from the fact that they were able to honour the wishes of their loved ones by agreeing to donation and helping others.
My heartfelt thanks goes to all families who have been a part of the donation journey and my encouragement goes to future families who discuss organ donation and make their wishes known.
Anthony was the family’s first male grandchild, adept at getting his own way from an early age. Already showing signs of being a gifted child he knew complete movie scripts by the time he was three and taught himself Spanish from the TV.
His fascination with throwing things over the fence—all his toys, all the dog’s toys and bowls, made me wonder if he even tried to throw the dog over too (as it was a Chihuahua)!
Although his parents separated they stayed in touch and Anthony, who had a deadly left foot, loved to play footy in the backyard with his dad and little brother.
Anthony’s school reports were always impressive. He scored many A’s and nearly as many mentions that he loved to have a chat. His mates looked up to him as he listened, cared and was the mediator. One of his strongest traits was that he never discriminated.
He was a sportsman—excelling at swimming and training religiously to achieve a brown belt in karate. He won several trophies at Cycle Speedway and rode a customised bicycle flat out to finish third in the Aussie titles. He trained hard at tennis, becoming his local club’s Junior Rising Star after just one year. His dad practised with him to the point of exhaustion and never won a game! As his grandparents watched him grow to nearly six feet tall, they also saw him develop into a fine sportsman.
He battled asthma all his life and his mother was always there to support him. He was like her in so many ways, as he would rather give than receive. That’s what won people’s hearts.
When he suffered his final severe asthma attack and didn’t recover he was still giving. His healthy organs were donated to five families, bringing them the joy of hope for the future.
Anthony’s dad carries a permanent reminder of his son—a picture etched into the skin of his torso and the words: ‘He was never selfish; always helpful and kind. What beautiful memories he left behind.’
Another chapter of life given
My story started 22 years ago, when I first noticed I wasn’t well. At that time my wife had just given birth to a baby girl. Three months later I ended up in hospital on the liver transplant waiting list. I was waiting for two weeks, not knowing if I would receive a transplant, and given a 50/50 chance to survive another week.
A liver became available from a deceased donor and I didn’t find out until the evening that I had been chosen for a transplant. I was nervous, saddened and exhilarated all at once. I remember being prepared for surgery and saying my farewells, with my wife crying and myself not knowing if I would see my family again.
I was wheeled down the corridor and woke up 12 hours later in intensive care. I did see my family again! I did have a few setbacks, but after six months of rehabilitation I was fit enough to come home.
Without the generous donation of a liver I would not be alive to see my wife and daughter, who is now 22 years old and has grown into a beautiful woman.
I thank the donor, whoever they were, and the hospital and staff for the loving care they showed my wife, daughter and myself over the six months I was there.
Thank you for your gift!
Angelina and her grand-daughters
An act of undying love
Nothing could have prepared us for the most shocking, tragic news of our life. Our beautiful, loving, compassionate, priceless Mamma and Nonna Angelina suffered a massive cerebral haemorrhage and there was no hope of survival. Although we were (and are still) in a state of acute grief it wasn’t a difficult decision for my brother and I to have Ma’s wish of being an organ donor fulfilled.
You see, Angelina (Ma) died as she lived —generously! Her giving, selfless spirit and the fact that she always put others first—never having a bad word to say about anybody—made her love everyone. And everybody loved her. Ma would have given you her last piece of bread even if it meant she’d have to go hungry, so it came as no surprise to her family and friends when they learned of her ultimate gift of life.
The proud adoring Nonna (Italian for grandmother) of five grand-daughters, Ma lived for them. Her love of cooking, gardening and entertaining reflected her love for humanity and nature. The words we heard most from her lips were, ‘Love one another!’. Ma was always helping people and asked me to sign her up as an organ donor as soon as I told her of my decision. As this was the ultimate way of helping people, she knew it would bring happiness, hope and a better quality of life to recipients and their families.
So Ma’s wish was fulfilled and three people’s lives were transformed with her ‘pristine’ liver and kidneys. The letters we’ve received from grateful recipients truly honour Angelina’s memory. She’s not only our hero, but many people’s.
Please, please consider organ donation. Discuss it with your family. It won’t bring your loved one back but it’s a wonderful feeling knowing that her donation gave a new chance at life to others. God knows, we won’t need our organs up there!
Just to be here…
I was born with reflux of both kidneys. I was always sick as a child, with infections, anaemia and high blood pressure.
When I was five years old I had corrective surgery in an attempt to fix this. Unfortunately the surgery was unsuccessful, and at the age of eleven, I became unwell. One kidney had died and needed to be removed, which meant surgery.
I fell pregnant at the age of 14 with my son. When the pregnancy was confirmed at three and a half months, I was sent straight to hospital for rest, right up until I gave birth.
My son was born one month early due to my remaining kidney beginning to fail.
I’ll never forget my specialist saying ‘You’ve really done it now’, but despite this, my kidney continued to function and remained that way until I turned 22 and my kidney finally packed it in.
To cut a long story short I’ve had three kidney transplants in 20 years, all donated by members of my amazing family—my mum and two sisters. I come from a big family with eight brothers and sisters, two of which are indentified as perfect matches for donor kidneys.
Sometimes I think to myself I don’t know why they did it. I guess I truly would do the same if someone in my family needed a kidney and I was able to help. I think it’s just what you do for your family.
If you are as lucky as me (and I do consider myself lucky) when people say ‘you poor thing’, I say back to them ‘I’m very fortunate to have had the extra opportunities the kidney transplants have given me in life’. I know a lot of people who aren’t as lucky as I am.
My baby boy is now 27 years old and is married. He and his partner may even have a baby themselves next year.
I’m still here due to the generous gifts of my family.
Jennie winning the 100m in 60+ age group
I became ill and after many tests I was admitted to the Intensive Care Unit. I had a nine hour liver transplant three weeks later.
My new liver ‘kicked’ in straight away and started clearing out my brain of the toxins and three days later my head had cleared. I could think and read and said to my daughter, ‘My head has cleared, I’m back on the planet and I’m starving!’. It was a wonderful and unbelievable feeling.
After a total of three months, I was allowed to go home to Mount Gambier and driving from Keith down to the Mount (two hours), I saw three rainbows and I just knew that I was OK—it was a good omen. I went back to
playing social tennis after four months, then part-time work at five months.
I heard about the Transplant Games whilst in hospital. My first Games were the Australian Games in Adelaide in 1996 and I won two Gold and one Silver—and I was hooked! I have competed in the World Games in Sydney; then Budapest; Kobe, Japan; Nancy, France; Bangkok, Thailand; Gold Coast, Australia—winning altogether nine Gold, three Silver and three Bronze. I hold World, Australian and British record times for 100m and 200m in my age group. I have competed in Adelaide, Ballarat, Wollongong, Gold Coast and Canberra Australian Games.
In 16 wonderful years I have travelled the world to compete in the World Transplant Games and also fulfilled the dreams whilst lying in a hospital bed with only five-six days to live before my transplant.
I will be forever grateful to my donor family for saying ‘yes’ to their loved one’s organs being donated and for me to be able to receive a second chance at life. I have literally ‘run for life’ ever since.
I also thank my husband, family and friends for supporting me through the journey—which has been their journey too.
Priceless gift given to me by a generous donor
I was 18 years old when I was told I had renal failure. Although I had never heard of it before it did not take me long to experience it.
I was putting on weight so I went to Weight Watchers. I stuck to the diet but every week my weight was going up not down. My weight rose to 72kg and my legs looked like trunks of a tree. I went to see a doctor and another for a second opinion and was put straight onto dialysis.
Dad and I went to visit Mum in hospital on my birthday in 1986. She was upset because due to a previous illness she was unable to donate one of her kidneys. ‘Don’t worry Mum, it will happen’, we said.
Exactly one week later the call came. I was told it was not the best match so I could say no! Are you crazy?
The kidney took a long time to work. I was allowed a day out, so I went home to a stuffed roast chicken—my favourite. When I was told my kidney was working properly I was sure it was due to Mum’s cooking.
I named my kidney ‘Kingsley’ as dad had wanted a Kingsley in the family. I travelled, had a full time job, danced all night with my friends and more.
Kingsley lasted 18 years and I eventually went back on dialysis. It was harder to accept this time.
Three years later while shopping with Mum I received the call and this time it was a perfect match.
It is in giving that we receive.
A rainbow poem
Who’d want my heart it’s cold and black
But God told me not to bring it back.
He said to leave it from where I came
Others could use it just the same.
My eyes and all other parts as well
Don’t take them to Heaven or to hell.
So everybody when you go
Check all your organs at the front door.
Help save a life with what is yours
Sign up to donate it’s a worthy cause.
Gav and Jules.
My corneal transplant
A few years ago I was lucky to be a recipient of a corneal transplant. To my shock the optometrist informed me that I had keratoconus and I had to go to a specialist for more information. My cornea was in a cone shape so I was not able to see properly through my right eye. I decided to have an operation.
Five months later I got a call from the hospital to say the operation was to be the next day.
I had another operation to re-shape the cornea. The stitches needed to be replaced and I struggled at first with them.
My last operation was to remove a cataract in my right eye and this operation was fantastic. I had to be awake so I could see everything happening—even the disappearance of the cataract and the replacement of a lens.
I had many black eyes in this process but I have to say it was well worth it. I am able to live my life to the fullest now and have a fantastic boyfriend who is a great support and is the love of my life.
I love the countryside and am looking forward in the near future to being with my love on a farm.
My family have been there for me through thick and thin, they have helped me throughout the journey—when I have eye appointments, when I had the pain of operations and when the stitches were taken out. I now have no stitches in the eye. I am still taking eye drops but it is well worth it.
I am able to see again and want to thank the donor. It is sad to see someone pass but they bring life back to many others and I thank them for that.
The ultimate gift
I write this on the 12th anniversary of my kidney transplant. A day of thanks, a day when my thoughts return to my donor and donor’s family and a day when I reflect on how my life has changed since I first heard the words ‘you have renal failure’.
I was 37, fit, well and happily married with two young children when I felt as if I was coming down with the flu. Within days I had renal failure. My immune system had mistaken my kidneys for the virus and shut them down.
With the help of my family, I managed haemodialysis at home for five and a half years. During those years, a transplant seemed like the ‘light at the end of the tunnel’.
I expected to be excited when I first received the call that a transplant was available but, as my husband and I travelled to the hospital, I was filled with sadness for my donor’s family.
Initially, I experienced my fair share of problems and at times struggled with the unexpected physical and emotional challenges I faced. Thankfully things settled and today I’m pleased to say my kidney and I are going well. I have a happy life and my family and I enjoy the freedom that my transplant offers. I am very grateful to my donor and donor’s family for the opportunity they have given me.
I feel privileged to be the recipient of such a special gift and was able to express my gratitude in person to some local donor families at the opening of a special garden of remembrance created in my town to recognise the generosity of organ donors and their families. At the end of the ceremony I was given a rose, the Reflection Rose, developed and dedicated to organ and tissue donors and their families. I planted my rose where I could see it every day and today, on the anniversary of my transplant, it is once again covered in buds—a sign of new life and a reminder of the precious new life given to me.
Jessica, Melissa and Ellen.
Two lives were saved
Our mum Ellen was taken from us after battling influenza in intensive care for nine weeks. Mum was aged 45 at the time.
I remember the day well when I came home from work to find Mum wasn’t there, she had been taken to emergency by my sister earlier that day and I was none the wiser.
Mum had been sick with the flu for over a week at home before her health dramatically declined. I received a call that night to say they had to put Mum on a ventilation system to help her breathe. I spoke with her on the phone to say I would be up to see her the following day. I never knew then that it would be the last time I would speak to my mum.
I was very fortunate that over the nine weeks Mum was ill, I was able to be close by—unlike many of our family who could not be. We met countless ICU doctors, however, sadly, Mum’s health never improved and slowly declined as time passed by.
When we were told by the doctors that Mum would never recover, the impossible had to be done which meant turning off Mum’s life support.
There was no doubt in our minds that Mum would have wanted to be an organ donor, so when the question came up we knew it was what Mum would have wanted. Mum was the type of person who would help a stranger and could never say no to anyone in need of a hand.
It gives us solace to know that two lives were saved from Mum’s organs as we know it could have been us on the other end of the spectrum if circumstances were different.
I urge everyone to register for organ donation, don’t wait until you have to experience a life changing event yourself, as it could be your loved one who is given a second chance at life.
Our little black duck
The little black duck
When she was around 46, my mother was told that she was very ill and required a lung transplant. Over the next three years, she deteriorated substantially.
Very early one morning, the hospital called advising us that a transplant was possible and she had to get to the hospital. We were elated at the opportunity for Mum, yet saddened that this opportunity only came because someone else had died and another family was grieving.
As I watched her roll away on a gurney, I wondered if this was the last time we were going to see her alive. The transplant was a success, it was text book and she rested comfortably in ICU.
Within the next 12 hours, things went terribly wrong and all of her organs started to shut down. There was talk that she was rejecting the lung and it would only be a matter of time. A couple of months went by and we were asked to make the decision about her future. We had already discussed this with Mum and we knew her wishes.
The machines were switched off and we were told, again, it wouldn’t take long for her to be resting peacefully. Within 12 hours, she had started to respond and she, very slowly, started to regain consciousness.
Within a few days she was able to communicate with us. Then with a couple of months in rehab she was back home again.
Sadly, we lost Mum after a few years due to complications. She was not yet 54.
There is another family who lost their loved one and in doing so, ensured that ours could live. It was an unselfish gift from someone whom we didn’t even know and whose family we are forever grateful to. We got to spend five more years with Mum that we otherwise would not have had. Whoever you are, you will never know what you did for us but you will always remain in our hearts and thoughts—thank you is not enough but it’s all I have to give.
Sam and friend
Tony and Carol
In order to achieve in life, work or in sport, we all need to set goals. As we try harder we can reach those goals and taste success.
Samantha’s first goal was life itself. Born with a congenital liver disease, she struggled with many health issues which necessitated her having to spend much of her early years in hospital. At age six she had a liver transplant. She had a strong will and defied all odds in overcoming a post-operative viral infection resulting in life threatening pneumonia.
For about two years Samantha slowly recovered and endured the effects of anti-rejection drugs. It was during this time she developed a love of dancing and through this, strengthened her body and developed her will to succeed and excel.
She represented the Children’s Hospital Camperdown in the 1990 ‘Channel 7 Telethon’, raising much needed funds for the hospital. She also volunteered in the ‘Say Yes’ campaign in schools raising awareness for students to advise their family of their desire regarding organ donation.
Samantha participated in the National Transplant Games at Toowoomba in 1990—both in running and swimming. Whilst not a strong swimmer she proved her determination to everyone present. At times barely floating, she won the hearts of all when she completed her swim, definitely last, barely able to stand, but at least she finished.
At the next Transplant Games in Bathurst she picked up a few medals in swimming and running. Her love of swimming and running continued and when invited to participate at the World Transplant Games at Homebush, she readily accepted, resulting in four gold medals.
Whilst there have been a few health problems over the ensuing years, life has been good for Sam. She has travelled extensively overseas and lived in the UK for three years as a social worker. On her return to Australia she has continued with her profession working in inner Sydney.
Sam is turning 30 and leads an active, normal life. She is still dancing and loves the beach and surfing.
As parents we celebrate her life and give thanks for the gift of a liver. We remember and thank the donor and their parents.
Tony and Carol
Elisabeth—wife, mother, nana
My mother was diagnosed with kidney disease when I was born. One kidney stopped functioning and for the next 35 years she suffered severe migraines, blood pressure issues and deteriorating health. She was an incredibly strong woman, continuing to go to work every day. Most people had no idea how ill she was.
She retired to look after her first grandchild and at this time her second kidney failed. Mum was on dialysis every two days with my two year old sitting by her side as she drew her own blood and connected herself to dialysis. Her blood pressure was so low it was frightening and often crashed in the middle of a session.
After being on dialysis for two years, the call came. As a family we were excited and scared of the big operation she was to have. We were so sad for the family who had lost a loved one, but terrified we would lose her.
She came through the operation and was healthier than I had ever seen her. She remained so for the next 10 years.
Mum was able to see the birth of her second grandchild and celebrate her 48th wedding anniversary with my dad—who adored her. She was taken from us six years ago with lung cancer, but to the end her kidney worked well.
We are forever eternally grateful to the donor family for giving us more time with this wonderful woman.
My name is Beccky and I am 19 years of age. I was born with poylistic kidney disease and ever since I have needed a kidney transplant.
I had a brother who I never got to meet. He died at six and half months after needing a kidney transplant and not receiving one.
My kidneys lasted 11 years and then I was put onto dialysis. For my 12th birthday I was given a kidney transplant from my dad. Unfortunately the kidney only lasted three years and 11 months. I was in Year 9, really sick, missing school and hanging out with my friends.
By the time I was in year 10, I was back on dialysis. This meant going to bed early, being connected to a machine and missing out on all my friends sleepovers—which was important for me back then.
I was on the transplant waiting list for 18 months and it felt like I was just on my machine 24 hours a day!
In 2010 my mum was able to donate her kidney to me and two years later everything is still going really well.
It’s really important to become an organ donor. If my mum’s kidney fails on me I will again spend my life on the dialysis machine waiting for that magic phone call.
I feel so worthless spending time on the dialysis machine. Becoming an organ donor can save lives. I am not just thinking of my life, but those of younger kids like my brother, who have a whole big life ahead of them.
I don’t think people really understand what a gift organ donation really is until they actually see the difference of a life saved.
My husband's story
My name is Tracy and two years ago my husband died suddenly and unexpectedly from an aneurysm in his brain. At the time we had a three month old baby and a 20 month old toddler—two gorgeous boys who would grow up never knowing the father that loved them dearly.
Both Sean and I had spoken about organ donation and knew each other’s wishes—so when the nightmare unfolded it was a relief to be able to convey his wishes and subsequently save six lives without the turmoil of making another decision. This was the one part of the day where I felt I actually made the right decision—one that I knew he wanted.
Sean was always full of life and made sure he lived every minute. He tried to take every opportunity he could and he would be so happy to know that he was able to save lives and give others a second chance. I will certainly be sharing his heroism with his sons when they are old enough to understand.
I thought I would share my husband’s story so that others may also make their wishes known and hopefully become organ donors. There is no greater gift than the gift of life.
Some of the Aussie Nurses Giving Kife (ANGLs)
ANGLs in Kokoda
Late on a Sunday night my family and I returned home to a missed call from a Sydney number. Curiously, my mother phoned it back.
On the other end of the line was the liver transplant co-ordinator advising us to make our way to hospital immediately. By miracle an amazing family had agreed to donate their loved ones organs in a time of tragedy and my father was to soon be the recipient of a much needed liver.
He had been on the transplant waiting list for less than six months suffering with sclerosing cholangitis that had caused end stage liver failure. He was 45 years old at the time.
The wait for my father and our family was extremely emotional. From watching his clear deterioration every day, his increasing lethargy and regular check ups to ensure he was still suitable for a liver transplant, we all lived in fear that the call may not come in time. In the last few weeks before dad’s transplant, he was so fatigued he had taken leave from work and we all held our breath every day, cried every night and hoped that a miracle would soon happen.
After Dad received the liver transplant we were glad to see that he had made it. At the same time though, we were conscious that a family somewhere had just farewelled their loved one. It was also tragic to watch other patients that were on that same waiting list. Before our eyes they deteriorated, never receiving a phone call and adding to the numbers of those who never made it. Watching the sorrow and grief in their families eyes as they packed away their possessions and said goodbye, we couldn’t have been more thankful for the gift of life to our family but still saddened by what could have been.
Now almost 10 years on, the events of that night and the following few days remain vivid in my mind. I am amazed that people around me still have a poor understanding of organ donation. Many when asked state ‘yes’ they are potential donors. When I ask if their family are aware, they have never discussed it!
To try and help raise awareness for organ and tissue donation, I am attempting to complete the Kokoda Trail with some of my nursing colleagues. I aim to do my part in paying respect to the family that gave my family so much and to increase current donor rates. I also hope to reach other Australians and ease their wait, like that which my father and our family went through.
My life would not be what it is today if I had to prematurely farewell my father—as I realise many other families have had to do. Get on board and talk about organ donation with your family— I can’t encourage you enough.
Louise undergoes a heart transplant
Just another challenge in my life and I will win it. These are the words I said after my heart transplant. With my outlook on life and determination there is no doubt that I have won!
My remarkable story begins when I was 30 years young and 26 weeks pregnant with my second child. I had a sudden cardiac arrest in front of the Year 9 students I was teaching. For many years I had been involved in teaching cardiopulmonary resuscitation (CPR) and spreading the work about its importance in the community.
The students were able to revive me with the help of two teachers from the school who performed CPR and kept my blood flow going until the ambulance arrived and I was defibrillated on the classroom floor. I was then flown by the rescue helicopter to hospital where I underwent a caesarean and baby Katy was born while I was still on life support. I woke up about a week later and had no idea what had happened. Katy was very premature but survived her incredible entry into the world.
I was then diagnosed with hypertrophic cardiomyopathy and fitted with an implantable defibrillator as a back up just in case another such incident should occur. A number of other problems started to appear and two years later it was recommended that I be placed on the waiting list for a ‘new’ heart.
After 11 weeks on the list, I received the telephone call of a life time. Although I had a tough road to recovery, my spirits remained high. I did everything the doctors told me to do and with the love and support of my husband Gary and my two daughters, Grace and Katy, I have overcome another hurdle in my life.
Living a near normal, wonderful life is how I describe myself today. Apart from taking drugs (which I never had to before), I can do anything!
I devote most of my time not only advocating for CPR and defibrillators in the community, but have now added organ donation to my story.
Like many others I am most grateful and humbled by the family’s decision to donate at a very tragic and sensitive time. Organ donation is vital so that many more lives can be saved. Remember, one day it could be you who needs another organ.
Wife, mother and now a nan
At 37, I was diagnosed with primary sclerosing cholangitis (liver disease).
Some 13 years later, my liver was failing. I found I was spending more and more time in hospital. The doctors and nursing staff at the liver transplant clinic prepared me for a major operation—physically and mentally.
It might sound strange but I was actually relieved that I was now going on the transplant waiting list. I accepted the idea of the transplant as I was so unwell.
Seven months later the hospital rang and we swung into action. After being admitted, I was informed that the operation wouldn’t take place till the morning.
I remember that morning of the transplant. My family was with me as we looked at the possibility of organ donation (tears did roll). My life now depended on the skills of the doctors in theatre.
Finally, despite the pain, I felt so happy and relieved. I had my life back because of a donor, a medical team, my family and friends. There was no turning back. I had to be worthy of it and smile and shine so others could see. I reached into myself and told myself to find that tiny spark and be very thankful I had received a second chance of life.
I thank the donor and their family and hope they can find some comfort in the knowledge that their gift provided me with the opportunity to share a happier and healthier future with my family.
Their generous and courageous decision became a precious gift of life for which I am eternally grateful. It has given life to a complete stranger and I see this as incredibly special.
The donor and family are rarely out of my thoughts and I hope they have some comfort knowing they have saved a life by this wonderful gift.
Quality of life restored
As an active 75 year old widow I had to curtail many of my activities because of failing eye sight. I had to stop driving my car and doing dress making which I had done since I was a teenager. Reading was difficult and only possible with the aid of a strong magnifier. The cells of my cornea were disintegrating and as cells of the cornea do not replace themselves, as do other body cells, my only hope of improved vision was a corneal transplant.
When I visited the ophthalmologist I could not see the big letter on the top of the eye chart with my right eye. The left eye, while not as bad, was also deteriorating. I was put onto a waiting list and seven months later received a call as a cornea had become available. After a 50 minute operation my own cornea had been removed and the donated cornea stitched into place. It was about three months before it had settled enough for my glasses to be prescribed. The left eye received a cornea 12 months later.Five years later, with correct glasses, I am able to read the second bottom line on the eye chart, am able to drive my car, use my sewing machine and read comfortably.
Thank you to the two donors and their families who, even while coping with their own grief, consented to the donation and restored my quality of life. Through the Eye Bank I was able to write an anonymous thank you letter to them. Once again THANK YOU wherever you may be.
When I was first diagnosed with cardiomyopathy I received conventional treatment for my left ventricular failure until my condition worsened, requiring the implantation of an implantable cardiac defibrillator(ICD).
At the same time I was assessed for suitability for a heart transplant. I was one of the very lucky people put on the transplant waiting list. I was even luckier to receive a call to hospital after a lapse of only two and a half weeks!
I survived the transplant, but did suffer some infection. I survived this to emerge as a new man. I no longer suffer from heart congestion and regained the ability to walk normally.
My family was of enormous support throughout this time. I am now fit and healthy and consider myself to be one of the luckiest people alive—because I am alive!
Most people I know had to wait at least six months for a heart to become available. I am extremely grateful to the family of my donor for their sacrifice and will live to express it.
Liver transplant recipient: Joy
I had liver trouble for 16 years and my specialist said there was nothing that could be done. I had a condition called Primary Biliary Cirrhosis and there was no cure for it. I had regular blood tests to monitor my liver function and I had to take Questran powder before each meal to stop my itching. I had a massive bleed when the enlarged veins in my oesophagus burst.
I was eventually put on the transplant waiting list but continued to have health problems. However, the hospital always took good care of me.
Four years later I got the call to come in for my liver transplant. I had managed to keep working right up to that day.
After my transplant I was in intensive care for two days and left hospital 19 days later in time to be home for Christmas with my three sons and two grandsons. I had a few little problems after my transplant. On day four of my transplant my liver rejected but the Liver Transplant Unit staff were able to reverse this and my liver is still working well. I was home for two weeks when I got an infection and had to spend two weeks in hospital again. I was able to go back to work two months after my transplant.
In the next two years I had another two operations when a few things went wrong, but again the hospital was great and fixed them up.
I worked full time for another 11 years then retired when I was 70 years old. I have now been home for one year as a full time carer for my partner who has ill health. I also baby-sit great grandchildren.
I was a very lucky person to have a second chance and receive a new liver.
Rebecca lived a very full life even though she passed away from a heart attack due to Type 1 Diabetes and Hyperthyroidism.
The day I had always feared had finally come.
Rebecca had diabetes from the age of seven and was continually in and out of hospital. Despite her illnesses and struggles she got on with life and drained every drop out of the short life she had.
Rebecca enjoyed socialising and having fun, while also getting into a spot of trouble here and there. In other words she was a typical teenager who introduced me to grey hair at a young age.
She had just become engaged to the man of her dreams and enrolled in TAFE.She was excited that her future seemed brighter than ever before.
During her many admissions into hospital we would spend a lot of time talking about what she wanted if she should die. As I am from a medical family we openly discussed issues such as organ donation.It was natural to talk about this with my own children and relatives.
It gave our family comfort to know that in her death an opportunity for a better life was given to four other people. Two kidneys and two corneas were donated.
I received a letter which made me smile from one of the recipients of a kidney. Hearing directly from a recipient really gave my family great comfort.
The Honourable Chris Hayes MP has shared Rebecca’s story in Federal Parliament to highlight the importance of families talking about the issue. Rebecca’s story helped to promote the importance of the Australian Organ Donor Register. While she is no longer with us her organs and her story continue to make a difference to many.
Our Linda – our sister
Linda or ‘Lou’ as we called her was one of a family of seven brothers and sisters. She was also a wife and mother of two. Lou died suddenly when she was 42 years young.
She was someone who was fiercely protective of her family and friends. She was always there to give a helping hand, and even in death she was able to help by donating her heart, lungs, kidneys, liver and corneas. There are people alive today because she had let her family know her wishes, and we as a family honoured her wishes. It was simply part of her personality to give.
They say The Lord works in mysterious ways. In the hours before her sudden death she talked to all her sisters and even had a cuppa and a scotch finger biscuit, laughing and having a good time planning her trip to the races on Melbourne Cup day.
Linda would have been sorry to have missed knowing her beautiful grandchildren, seeing them running carefree on her beloved Nudgee Beach.
The world was a better place for her being part of it. She will always have a place in our hearts—love you Lou.
Cycling at the 2010 Transplant Games, Canberra.
The life I waited for
I had been ill since birth and treated for asthma when, at the age of 17, I suffered a stroke and was admitted to hospital for tests. The stroke turned out to be a blessing in disguise as doctors found that I was not asthmatic but had been born with a hole in the heart which had led to hypertension in my lungs.
When I was told I needed a heart and double lung transplant, I was thankful that there was a solution to the blue tinge to my skin, being unable to breathe or walk far. I saw my transplant as the solution I had waited my whole life for.
I was 26 years old when I underwent the operation. My donor had died, however their incredible gift of life saved not only me but others as well and all of us are aware of how this selfless act had prevented our deaths.
Following transplant I realised how ill I had been as I’d never known any different. For the first time in my life my feet were pink and finally I was able to walk up a hill. Then I found that jogging on the spot warmed me up rather than turning me blue and giddy. Who knew!
I have been incredibly fortunate to have had the last 17 years, where I can participate in the Transplant Games, make new friends, get married, have a career and basically do all the things I would never have been able to do.
And all because someone I never met was kind enough to make it all possible.
David gave life to five people.
Denice and John
Our wonderful son David was taken from us.
He had led a full life, always full of mischief and activity—until nine years earlier, when an investigation into what David described as ‘funny turns’ revealed that he had a large brain tumour.
On his 16th birthday, instead of celebrating a milestone birthday with gusto, David spent over eight hours in the operating theatre. When a clearly exhausted doctor emerged, he told us he had removed all of the tumour, but he had to sever a major artery. David would be hemiplegic, paralysed on the right side, for the rest of his life.
Over the next nine years, despite undergoing brain surgery more than 25 times, he accepted his bad luck with astounding resilience—determined to enjoy life, whatever the handicap. Sheltered workshops were not for him. He wanted a real job.
Soon he had his own car and was learning AutoCad drafting on the computer. He landed a job in a drafting office and continued his studies. Periodic bouts of pressure of the brain, caused by a blocked shunt, sent him back to hospital many times. One day he simply didn’t come home. He emerged brain dead from yet another operation.
That day we met a Donor Coordinator, who by coincidence had once met David at a family wedding. She gave us the options. We never had any doubt that David would have wanted to give that gift of life. His body, for which he had no further use, gave life to five other people in desperate need of healthy organs.
A week after David passed away, his Advanced Certificate in Civil Drafting arrived in the post.
Denice and John
21 and not giving up!
Two chances at life
My name is Gemma and I was diagnosed with Cystic Fibrosis when I was three weeks old. I remained quite healthy throughout my childhood, with parents Malcolm and Wendy always encouraging me and having fun with my older sister Natalie.
When I was 11 years old, blood tests showed my liver function started to decline and a close eye was kept on my liver for the next few years. Eventually it was decided I would need a liver transplant. As a 13 year old, I just accepted it and got on with it, although it was overwhelming and scary.
The phone rang one day and Mum gave me a thumbs up sign. It was the hospital saying they had a liver for me.
I was wheeled off to surgery after an emotional goodbye with the family (I knew I was in good hands though). After a long two month recovery, I got on with being a 14 year-old again. My teenage years were very healthy and the liver transplant also helped to keep my lungs healthy for a good six years.
At 20, after years of treatments, intravenous antibiotics and hospital admissions, my lungs started to go downhill and became immune to a lot of the antibiotics. At 21, I was put on the transplant waiting list. I have been waiting for three months. I can’t wait to get my lung transplant and get my 21 year old self back. What 21 year-old wants to use a wheelchair and be on oxygen all the time? Not me. I love partying with friends, having a laugh and living it up. I plan to travel and complete studying when I do get my transplant; right now I am too sick.
Organ donation does save lives and it is the greatest thing a family can do for someone else. I think of my liver donor all the time and am forever grateful.
Please discuss organ donation with your family and friends. We don’t like the topic of dying, but for those waiting on the list, we face it every day.
Just do it!
I was so touched by a news story where a woman donated a kidney to her friend, that I made the call to put myself on the living donor list. My donation was to be altruistic so everything was strictly confidential and I would not know the identity of the recipient. I told my very close family about the donation and they were all so supportive, even though their reactions were very different—ranging from ‘you are nuts!’ to ‘how generous’.
I started a healthier way of life so as to be able to give my recipient as healthy a kidney as I could and for me to recuperate quickly. My recipient could be of any age, sex, race or religion. Over the period of a year, I had many visits to the hospital for consultations, different scans, x-rays and blood tests. This also gave me time to think and I could change my mind at any time.
With a week to go until the donation, the butterflies started. So I just kept very busy and positive. Once I got to the hospital I relaxed and got caught up in the ‘excitement’ as the transplant team spend so much time with their patients that they become friends. Today one of their friends will soon have a second chance of a healthier life.
A couple of days after the kidney donation all the tubes were removed and I could get up and walk about. On the third day I was well enough to go home. Before I left, my transplant co-coordinator who was a wonderful, helpful and supportive friend gave me a ‘green ribbon’ which is the ribbon for live organ donors. I asked her to deliver a get well card to the recipient who I was told was doing well.
In all the time that has passed, I have corresponded often with my recipient through the transplant team and every letter is a treasure. Every year I receive beautiful flowers from my recipient and by me dropping a pebble in the water the ripple effect of ‘feel good’ continues for me and my friends.
I continue with good health, if not better, as I continue to drink lots of water, and keep well. If just one person makes the decision I did, this story won’t be a waste and the ripple effect will continue.
Memorial to Douglass
My husband Douglass was a generous man. He held dear his family, adoring his children, then grandchildren. He was generous with his time for others, be it family or friends.
When I was diagnosed with multiple sclerosis, Doug took it on with his usual energy and enthusiasm, deciding to bring his retirement forward so we could enjoy life as my future was uncertain. He kept me active and is the reason I am as mobile as I am today.
In retirement we did a lot of travel both overseas and across Australia in our caravan. We would come home every three months as he couldn’t be away from his family any longer than that. He often used me and my ‘granny fix’ as an excuse to return.
Doug loved to exercise and one particular passion later in life was bike riding. He passed away after an unimaginable and unexplained pushbike accident. Doug had always wanted to donate his organs and three people benefited—two received a kidney each and one person received his lungs. He would be chuffed to know that his organs were good enough!
Of course our time in hospital following the accident was difficult. The most harrowing of our lives. But after we farewelled Doug from this earth and left the hospital, we shared an uplifting moment as Doug’s organs were escorted away under flashing lights and plenty of speed. It was so apt – he loved going fast!
We received a ‘thank-you’ card from one of the kidney recipients. This was a wonderful thing for them to do. It certainly helps in the grieving process to know that a little bit of Doug lives on.
If we had not known so clearly what Doug’s wishes were regarding organ donation it could have been a difficult decision to make under the most stressful of circumstances. But we knew what he wanted, enabling us to provide consent confidently and without doubt.
Doug’s niece and her husband put a beautiful plaque up at the site of the accident which says it all!
Douglass—a giver in life and death.
Kylie, Stephen and son Joseph
It was in March that I went to see my GP regarding headaches that would not go away over a two week period. Preliminary observations showed a very high reading of blood pressure which had been left unchecked for a lengthy period of time. Blood and urine tests were also taken. Less then a few hours later my GP called to tell me to pack my clothes and head for hospital as I was in renal failure.
Initially I was in shock, then told myself it would be alright as I was only 29 and kidney failure is usually more present in the older generation. After several days
of testing and a kidney biopsy, the bad news was delivered. It was revealed that I had a disease known as IGA nephropathy and was at end stage kidney failure with a combined kidney function of only 7 per cent.
The news was initially hard to swallow as my long term partner and I had just had our first child and life was just taking a new and exciting path. The challenging road began as I was put on the transplant waiting list and was told it could be a lengthy wait.
My family had discussed the possibility of donating a kidney. My parents and four other siblings were more then willing to donate a kidney. As all my family members underwent a series of tests, my health was weakening. I had lost a significant amount of weight and was struggling to get out of bed in the mornings.
As the toxins continued to build in my body (through lack of filtration) I was told I would need to start dialysis. I underwent surgery to have the tubes inserted into my stomach so I could start peritoneal dialysis. During this period tests revealed that my eldest brother, Matthew, was considered a perfect match for donation.
In September I was transplanted with my brother’s kidney. It is now a little over a year on and my partner and I are expecting our second child. I now have the energy to enjoy life with my family.
Matthew has done a very selfless deed in that of giving. I hope that the way I continue to live my life brings joy to my brother, as without his gift I could not have planned for a future.
At the age of 20 I was in the prime of my life. I had my health, I had freedom and I was invincible.
I came down with a bad cold and I was sent home from work with the sweats and a barking cough. On the way home I dropped by a local doctor, who assured me it was a chest infection and I began a course of antibiotics.
Within three days I could not walk more than 100 metres, I was so tired and this cough would not give up! I went to my regular doctor, who ordered a chest x-ray. The doctor called me and asked that I immediately come back. I had a collapsed lung, litres of fluid on both lungs, pneumonia and a severe case of viral cardiomyopathy (myocarditis).
I was rushed to a private hospital where every test possible was run. I was told I was critically ill and may not make it and to call in my family and friends as soon as possible.
For three days the cardiologist came in and the results were never good. My kidneys went into failure, my liver was flooded and my digestive track was shutting down. I was emergency transferred to the closest transplant hospital and then straight into the ICU.
The specialists were amazing through the scariest time in my life. Things were going well, my body was responding to the drugs and I was out onto the ward.
This unfortunately did not last as my heart could not handle it. I went into cardiac arrest and was rushed back into ICU and then to surgery to have a ventricular assist device put in place. I was only on the transplant list for four months though it felt like an eternity.
My thoughts and well wishes are with all the people and families still awaiting their gift.
My deepest thanks go to my donor and family. Thank you will never be enough.
The staff at hospital had my life in their hands and at any given point would drop what they were doing to answer any of my concerns. They will never know the depth of my gratitude.
For me, every day is a blessing
It was many years ago that I was given the gift of life. Thanks to my donor I have enjoyed many milestones most people take for granted. I have shared the joy of seeing my children married and I have been blessed with grandchildren.
I was diagnosed with a rare genetic disorder which meant that, over the course of my life, my lungs had a total breakdown. Over time my health deteriorated so chronically that I was put on oxygen 24/7. I barely had enough puff to walk to the letterbox to get the daily mail. The oxygen tank became my handbag—my lifeline.
At the time, to have the transplant I had to relocate to have the best chance of survival. The relocation was a major upheaval for our family—not just geographically but also emotionally.
After 17 long months, I got the call we had all been waiting for. That day, I didn’t know if I would live or die but what I did know is that I didn’t want anyone else to have to endure such a life-changing operation so far from their family and support.
Once well enough, I mounted a campaign for a lung transplant unit in Perth. One of my proudest moments, and one I fought tirelessly for, was the opening of the lung transplant unit at Royal Perth Hospital in 2004. I also set up the Heart and Lung Transplant Foundation of WA to provide support for others walking the same road. The foundation also fundraises for vital equipment to continue transplants.
It hasn’t been an easy journey, but it’s certainly been fulfilling. My mantra in life has been ‘everything that is difficult is worthwhile’ – and to this day, I attest to that.
The eyes have it
(Say yes to becoming an organ donor)
I was diagnosed with Fuchs’ endothelial dystrophy. This means that over time I would gradually lose my vision, and the only solution is a corneal transplant.
That’s not something you want to hear when you’re 22.
I was fine for 12 years, until vision in my right eye deteriorated to the point where I couldn’t drive safely or see what was on my right side. Also, because I could barely tolerate light, I felt a bit like a vampire, having to stay indoors and in the dark on a beautiful, sunny day. We rely so much on vision to live a normal life and when that is compromised, it’s not easy.
I had a cornea transplant and, four and a half years later, everything’s fine. One day in the (distant) future I’ll need another cornea for my left eye, but right now my theme song is still ‘I can see clearly now...’.
Every morning I look in the mirror and promise my donor that I will take care of this wonderful gift I was given. That decision to become a donor has changed my life and words cannot express my gratitude. I also thank your family for being strong and ensuring that your wishes to be a donor were carried out in the midst of their grief.
All donors and their families are amazing—you not only give the gift of life to so many, you also make a difference to their quality of life. I know I speak for all recipients when I say this.
I have signed up to be an organ donor—even tissue recipients like me can do this! I encourage you to sign up today, and let your family know your wishes. We can all make a difference.
The day before my operation
Best present in years
Hey there world. My name is Tamika and I am 15 years old. When I was 32 days old, I was diagnosed with cystic fibrosis. I was doing pretty well until I was diagnosed with diabetes at the age of 10.
Ever since then my hospital stays were becoming more and more frequent. I would spend two weeks in hospital and then three to four weeks at home. It was like this for a few years until I became very unwell and I was placed on the transplant waiting list.
One day my lungs just gave up. I was placed on life support and rushed to hospital to be put on the high priority transplant list. The staff there called out to all states and then New Zealand.
Two days later I received my double lung transplant. At 5pm I went into the operating room and came out at 11pm. It was the best present my family could have asked for.
I am so grateful for the angel that donated me their lungs. They are in my prayers everyday.
That magic moment
Blissfully in love with my husband, we were planning to start a family 12 months after we were married. I was born with several disabilities and so we decided to have genetic counselling to find out if the baby would inherit my disabilities. After several appointments with the doctors I was given the all clear. Fantastic! I then had a check up with my gynaecologist who found an irregularity with my kidney function reading.
She referred me back to the hospital where I was told I was not healthy enough to have a family and my kidney function was bad. You could have knocked me over with a feather. My world was shattered. I had always wanted children.
My health slowly deteriorated, and as I assumed, my husband left me.
The doctors were fantastic and they wanted to try and find a donor as soon as possible.
My oldest brother offered to be my donor and he was a perfect match. I thought it was all too good to be true. Three weeks before surgery my world was shattered again. The doctors decided the transplant was too complicated because my brother’s kidney, although extremely healthy, had too many blood vessels which could have caused more health issues for me.
From day one of dialysis, life became a living hell. I had my regular dialysis sessions at the hospital where the nurses went above and beyond the call of duty—being so patient with the troublesome access I had. It was seven months of a nightmare.
I began to come to terms with the fact that I may not make it much longer. Then the magical phone call came. I still get goose bumps recalling that moment —’We have a kidney for you!’ .
My operation began and three hours later I was out of recovery and back in my room recovering from major surgery. Everyone at the hospital has my eternal gratitude for their care and support.
Each day I could see myself improving. I was amazed by my own recovery and how quickly I was beginning to see changes in my health.
Twelve months on and the kidney is still functioning really well. The pain from the transplant is a distant memory but what isn’t a distant memory is the fact that an angel gave me the gift of life. I would not have survived if it wasn’t for the generosity of the donor and their family.
I would like to say a massive thank you to all the medical and support staff, other transplant patients who would support you at clinic appointments and most of all my family for never giving up that this magic gift would come to me. I love them all dearly and am so thankful to have everyone in my life.
Almost 11 months ago my life changed in a way you never think would happen to you.
My husband had spent a week installing a kitchen for a mate, then had a glass of home brewed spirits and was poisoned by methanol.
Five days later at the age of 49 Bruce was declared brain dead. Fortunately we had discussed organ donation so out of that horrific week I was able to make one decision easily—yes to organ donation.
Five people were given a second chance of life when Bruce donated two kidneys, two corneas and his heart.
For all of us left behind we are so proud of his decision to donate. It is of great comfort for me and is the only thing that makes me believe his death was not a waste.
Turn a negative into a positive
When my husband Michael was diagnosed with lung cancer (he was a non smoker) we were devastated to find out it had spread to his bones. Here was a very fit man who had never been sick in his life.
He enjoyed telling jokes, was always busy, loved collecting motor bikes and was into formula one car racing. He grew native flowers for export, ran a successful consultancy business and was always helping other people—in addition to renovating a 100 year old house. Most of all he was a loving father.
The prognosis was not good for the type of cancer he had and we were told that most people that had this cancer are dead in four months. The best we could hope for was a year. We fought the cancer for three years and four months until he passed away last year. A week after he turned 69.
I was told we couldn’t donate his organs, as the risk to someone else getting cancer was too great. Initially we had not considered the possibility of tissue donation, however I was talking it through with one of the nursing sisters and she said we may be able to donate his eyes. This was a great relief as I was desperately seeking to turn this dreadful negative into a positive.
Arrangements were made soon after he passed away and as a result he was able to donate his eye tissue.
We later received a letter telling us that Mike’s generous and special gift had been used to help two people with corneal difficulties. That helped us so much in our recovery process, as we know a small part of him is still out there viewing life through different eyes.
Pay it forward please and consider becoming an organ and tissue donor. If just one person helps another in considering donation, the ripple effect can be enormous.
This is such an important discussion to have and an even greater decision to make.
Twanny's gift of life after 40 years
My name is Twanny and I received a kidney transplant 40 years ago. Today, with the same functioning kidney transplant, I cannot help but reflect on my life and the people who played a pivotal role in getting me so far.
Originally hemodialysis was only available in hospitals, which consisted of six to eight hours, three times a week depending on overall health condition.
When my father died I realised what an important person this man was in my life. My rock. He directly and indirectly taught me how to be a man in so many different ways. The biggest lesson he taught me was that even as a man it was alright to feel different emotions and to be able to cry whether you were happy, sad or in pain. On his death the family agreed to his wishes to become a donor. So for our family the circle has been completed. I was a recipient and in turn, my father became a donor.
Since my transplant I have been diagnosed with many other health issues such as vision, cardiac and mobility issues just to mention a few. However this has not stopped me from enjoying life to the fullest. Though now retired, I have been gainfully employed since my transplant, the last 15 years managing my own business.
Socially I have participated in competition ballroom dancing, cycling, bowling, dining out and much more. The last 18 months have been a pleasure working with my guide dog Valli who keeps me company and keeps me safe.
Most importantly, this journey would not be possible without the donor family. Even though I don't know who they are and they don't know me, I'd like to think that I haven't wasted the gift I was given in their time of sorrow. This has motivated me to become a volunteer public speaker for DonateLife Victoria.
Finally, remember to enjoy life, as it is the only one we have.
Glen and John
Our neighbour's extraordinary gift
Glen had a very unsettled start to life. He failed to thrive and was diagnosed with kidney reflux.
At eight weeks of age, after several operations to remove the obstruction, his left kidney was removed. His medical prognosis indicated that his right kidney had also suffered significant damage.
With expert advice and guidance from a pediatric nephrologist he managed to grow and achieve at school. He excelled at sport—in particular golf and cricket. He was selected in the under 19 Victorian cricket training squad.
During his teens it was necessary for Glen to be treated for rising blood pressure—an indication his remaining kidney was failing.
Glen undertook a Greenkeepers apprenticeship while working at the highly rated Barwon Heads Golf Course.
At the age of 24 he returned home to start dialysis. The hospital set up a dialysis machine in our home. Unfortunately he was unable to work due to the time constraints around dialysis. Family members were not compatible and he faced a possible lengthy wait on the transplant waiting list.
A neighbour, whose son was a classmate of Glen's at primary school, offered to donate one of his kidneys. After extensive tests and counselling, he gave Glen his life saving kidney. Initially the kidney suffered rejection until a suitable immuno-suppressant was found.
Wow! What a life changing gift. Glen returned to full time work and participated in the Adelaide, Canadian and Geelong Transplant Games. He and Barbara married and now have two beautiful boys Riley and Connor.
We continually think of this amazing gift. Glen loves his work as a greenkeeper, plays golf with a handicap of nine, enjoys gardening and most of all is a hands-on dad with his two boys.
What an extraordinary gift organ donation is.
My experience with renal failure
At the age of 15 my health started to deteriorate and by the age of 20 I had my left kidney removed. I managed to live a fulfilled life for 30 years except the doctors said I could never have a family because of my renal condition.
At this time in my life I adopted two children aged five and seven years. My health remained stable until I began to have more renal symptoms and I ended up on dialysis.
I had home haemodialysis for approximately eight years until I began to reject all forms of dialysis and ended up in hospital for nearly a year (so that I could be evaluated each day).
By the end of the year I had become sicker and was dialysed more regularly. I knew that my time was coming to an end and I had no promise of a transplant. I knew it would be a miracle to receive a new kidney.
My family could not donate for various reasons and then my adopted son came forward and the doctors found he was a match. I did not believe in fate until that moment. I feel that adopting my children was meant to be. It is 10 years since my transplant and I thank my son everyday for his greatest gift to me.
... you can't just wait
I can't tell you that Bek is an ordinary 13 year old, because she's not. In fact, she's extraordinary!
By her first birthday, after suffering many months with an unknown illness, she was diagnosed with a rare liver disease that would see her one day needing a transplant.
A shy and quiet girl, she does not stand out in a crowd, nor does she even like a lot of attention—but when she sings, she sings like an angel. She sings songs of hope, healing and courage.
In her lifetime of chronic illness, the last four years have been particularly rough going. Bek battles chronic nausea and is unable to eat. She requires tube feeding and multiple medications and treatments daily.
Bek continues to raise money and awareness of PSC (liver disease). She participates in events like the MS Read-a-thon and is now trying to raise awareness for organ donation.
We've stuck with the principle that we can't just wait for a donation– we need to live life, but 15 months of being on the transplant waiting list and multiple hospital admissions including the Christmas holidays are making that tougher.
It's hard to know just how much time Bek has, but she won't just sit around waiting for this personal and deeply precious gift. A gift that we know she will receive in someone else's great loss. When she receives it, not a minute will be wasted getting out there and embracing her new life of fun with friends and giving to others.
The way I remember Hunter is him being a little ratbag, laughing at the world and thinking that he was the boss. Hunter had my heart wrapped around his little finger. He was and still is the highlight of my life.
Hunter was born in late 2005. Arriving two and a half weeks early, he weighed 8 pounds 6 ounces or 3.8 kilos. Hunter had a difficult start to his life. When the doctors delivered Hunter he was struggling to breathe and he had to be whisked away and put on oxygen for the next few hours. Luckily for me I had a little fighter on my hands.
Hunter was just such an easy going baby. He was the kind of baby that people are jealous of. I guess I didn't know at the time that I was living with an angel without wings.
I think Hunter knew that he didn't have long in this world. He was in such a rush to do everything. He sat up and got his first tooth at five months, he crawled at seven months, started walking at eight months and was running by nine months! He was always so busy, never stopping for a breath?just go, go, go. He was the reason I got up in the mornings!
The day Hunter died is a day that I would much rather forget. Hunter's death was very unexpected because he wasn't a sick child, so when he was rushed to hospital with a bleed on the brain, I knew that I would never take my baby home.
That day was the day that my heart was broken! When Hunter's father and I were asked to consider organ donation it was not a decision that we had to think about. We decided that we would never want anyone to go through this, that no mother or father should ever have to bury their child and if Hunter could help just one other person or another baby then Hunter would donate his organs.
We had Hunter christened the next morning and we got to give him his last bath, and then we just waited for the doctors to take him for his donation. We did get to spend as much time with him as we wanted after the operation and I think it was the early hours of the morning before I left the hospital.
The doctors who operated on Hunter said that they were honoured to do so as he was the smallest person that they had operated on at that time. We believe what Hunter did was such a beautiful gift and feel that he was given to us to help other people. We have found out that he has helped both adults and babies with his donation and we are so very proud of him. I couldn't have asked for a more beautiful gift in my life than Hunter.
Daniel was born in Mildura. He raced through childhood with the usual broken bones and stitches. He played guitar from a young age and went on to share his love of music, laughter and stories while sharing a Bundy or a beer around a barbie with mates and family.
At about 20 he moved to South Australia, and worked as a sign writer and labourer. He had three beautiful daughters.
At 33, Daniel collapsed with a brain aneurysm. He was admitted to ICU where the amazing surgeons pulled him through with a repair operation. He seemed to be recovering and even surprised doctors by playing music with a food grater and whisk accompanied by his brother on a ukulele.
About a week later he suffered a massive stroke and was placed on life support for the second time. His condition deteriorated and after a 12 day struggle he passed from this life surrounded by loving family, friends and music.
We received a call from the Eye Bank asking if we would consider donation of Daniels' eyes as he had registered as an organ donor. As the family had previously discussed organ donation there was no hesitation.
Our son was always giving a helping hand to others in life. Doing odd jobs or painting and for a number of years helping cook the BBQ breakfast after the Anzac Day service in a small country town.
It just seemed right that he continue to help others in death, by giving sight to two others. We received a beautiful letter of thanks from one recipient and wish the recipients well.
The support from the Eye Bank of South Australia has been very comforting. They hold a Thanksgiving Service for families of donors and we received a voucher for a Memorial Rose and have just delighted in watching the first year of bloom.
We miss this special guy so very much and are so proud and comforted knowing he was still able to help others.
Daniel, you are forever in the hearts of your loving family.
My wife and I in Rome when dialysing
My transplant after 10 years wait!
I dialysed successfully for nearly 10 years in Sydney but I was determined to live as much of a normal life as I could. To stay as healthy as possible, I found that if I dialysed five times a week at three hours a time, and on HDF machines, I was in tip-top health.
That allowed my wife and I to enjoy three overseas trips, organising dialysis by the world wide website- www.globaldialysis.com which lists most clinics and centres around the world.
In 2004 we spent a week in Paris and a week in Calpe, Spain. In 2005 we spent five weeks driving around France. For holidays I drop back to three times a week at five hours a time dialysis.
The final trip in 2007 was five weeks in Istanbul, Vienna, Venice, Taormina in Sicily and Rome.
My transplant in February 2010 has been marvelous and I now enjoy all the freedom I wanted—but dialising if planned can let you do most things too!
So, do not give up but continue to enjoy life to its fullest !
Thank you to all donors for your precious gift of life
I am about to celebrate six months since my kidney transplant.
I have Type 1 diabetes and found out a week before my birthday in 1963. Back then they didn't have the technologies they have today.
I hated doing three urine tests a day. My mum weighing all my food and for a treat I was allowed six potato crisps but that was all.
As a teenager I didn't care about the rules for diabetics and did all the wrong things.
Fast forward to when I was diagnosed with end stage renal failure. I commenced dialysis and eventually it was three days a week for four and a half years.
Then I received the phone call. I remember the date. After dialysis and plasma replacement I was in theatre about 9.30pm. After 10 days I was allowed out.
Not a day goes past that I don't think of or thank my donor and their family for their ultimate sacrifice. You have enabled me to see my youngest girl start university and my oldest daughter to have fun and go out with her friends. We can now go on planned holidays or spontaneous drives.
My family and I will never forget you or the day you gave me life. Thank you and may God continually watch over you all.
In 2003 I lost my dearly beloved sister while she waited for a lung transplant. While she was ill my family had several conversations on organ donation. All three of our children have told their father and I that they wish to be donors—in the event of their death.
At the time of my sister's death my daughter was a married woman and she told her husband her wishes. She had indicated this on her licence since she was eighteen years old. Very recently I had a conversation with my daughter's husband and he told me that he would under no circumstances allow for her organs to be given away. ?
I strongly believe that the donor's wishes should be respected at the time of their death. I cannot help but think that possibly if the rules on this matter where different in 2003 my dear sister may still have been with us today. ?
This has made my daughter very upset with her husband.
We believe that if the next of kin were not able to step into the way of the wishes of the donor there would be far more beloved sisters, brothers, sons, daughters, mums and dads saved and that the decision would be taken out of the hands of the grieving families.
Danny and mum Edna.
Danny and Edna—A mothers gift to her son
Danny was two years old when he was diagnosed with kidney disease. Doctors gave him 11 months to live. Parents Ashley and Edna refused to accept this and looked for options to give Danny a future.
So started three decades of struggle. Dialysis started at the age of seven. At nine and a half Danny received his first kidney transplant and could be 'one of the kids'.
Danny's transplanted kidney failed when he was 16—a difficult time for a normal teenager. Danny's prime teenage years included struggles with depression and difficulties in connecting with people.
At 23 Danny received a second kidney transplant and he pursued a career in IT. Eight years on, aged 31, Danny started dialysis again. Danny made the most of the challenge. He was fitter than ever with Latin dancing and dialysis six times a week.
As the second kidney started failing Danny's mum Edna started to detoxify hoping to give her son a healthy kidney. Getting another mother's perspective helped Danny to gratefully accept his mother's wishes and Danny received his mother's kidney.
It didn't all go smoothly. Danny's lungs collapsed and he was in ICU for four days, but he bounced back and life blossomed.
Today Danny has four kidneys, the functioning one is named Shalah—its namesake a holy 16th century rabbi. Following the transplant Danny embarked on a start up and graduated from two top master's programs.
Edna aged 57 pursed peace in the Middle East and the global environment through her bicycle rides. In 2010 she completed a seven week, 4,000 km bike ride. Edna says, 'If you look after yourself, life is even better after donating, you appreciate life more.'
I met Danny the year after the transplant and we are now married. Danny says, 'experience tells me a normal life is how you define it. Life on dialysis wasn't terrible but it was limited. I aspire to succeed because I want to make something of my life, and also because a lot of effort by a lot of people has been put in to keep me alive. My success is a way of repaying that effort.'
Mitchell at his senior prom.
Too thoroughly loveable to ever be forgotten.
Mitchell Taller, smarter, funnier
Our son Mitchell was a beautiful person inside and out. He was tall dark and handsome, sensitive, generous and kind, with a great sense of humour and a special gift for making the lives of those around him just a little bit brighter. Sadly our lovely son also suffered with bouts of deep depression and it was one such episode that ultimately ended his life.
The circumstances could not have been more heart wrenching when we (his family) were called upon to make a decision about organ and tissue donation. Thankfully we had discussed organ donation as a family. As reluctant as Mitchell was to share his emotional pain, he was surprisingly candid in his support for the organ donation and transplantation process. In this way, he had made our tough decision long before we were called upon to sign the papers necessary to honour his wishes—for that we are forever grateful.
I don't think anyone can be prepared for the conflicting emotions surrounding organ and tissue donation. At first I found it confronting and upsetting to think that parts of our lovely son were still living and supporting the lives of others. Over time, especially when we received a heartfelt 'Thank you' from a young recipient, it has become a little easier. Instead of our 'family' becoming smaller with Mitchells' passing, it has actually grown to include a number of people we shall never know. Like us they will never forget our son and what his kind, generous nature has meant for them in a very personal way.
Every day we miss the wonderful young man Mitchell grew into, but somehow his loss is made just a little easier to live with knowing that the enduring legacy of his life is not that he chose to end it, but that he has made the lives of several chronically ill people that much brighter by his gift.
Three weeks after my amazing gift! Thank you.
Thank you for giving me my life back
When I was 23 years old I went to get a new pair of glasses. I was planning on a trip to see family and wanted to check my glasses were OK because it was a long drive. I fully expected to go in, have my test, pick out a pretty new pair of glasses and a week later go back and collect them.
Instead I was given the news that I had severe keratoconus (a degenerative condition of the cornea) and I was pronounced legally blind.
By the time my husband picked me up and I got into the car, I was sobbing. I couldn't believe that I had just received such life changing news with no warning what so ever. I started thinking about how much this would affect my life and my career (I was about to become a nursing student).
After extensive tests I was advised the extent of my condition was one of the worst they had seen. Nothing would fix it except a corneal transplant for both eyes.
I remember feeling so upset, because while I was becoming excited about receiving new vision, a family would be mourning the loss of their loved one.
I have just received the most treasured gift—my first cornea transplant—and things are better than ever! My doctor is very impressed with my results and said that 'things could not have gone better'!
Against all odds and some very negative attitudes from people thinking I wouldn't make it, I'm more than half way through my nursing program. I have vowed to spend my life using the amazing gift that I have been given.
I have no idea who my donor is, and I will never be able to find the words to express how grateful I am. I owe them my life. Thank you, from the bottom of my heart, you have given me my life back.
A better man
My story starts in the early 70’s when I contracted hepatitis which was not treated until 2009. By this time my liver was cirrhotic and needed replacing.
I was transferred from my hometown of Darwin to Adelaide and had a transplant soon after. This has allowed me to see my grandson born and grow closer to my daughters.
I thank the donor every day for giving me this opportunity, for without their gift none of this would have been possible.
Christmas with Ray
Ray Ray’s story
My husband Ray received a kidney transplant. Ray had a rough life up to then with several medical problems including Alports Syndrome. After the transplant he spent many months in hospital.
Under the amazing care of doctors and staff, Ray survived another 14 years before he passed away aged 48 years, from unrelated complications.
We had the opportunity to travel and enjoyed doing things you cannot do on dialysis. When Ray received his kidney he was also given the opportunity to watch his two children grow up.
Without this gift our children Jamie and Emma would not have had their dad for the extra 14 years.
The gift of donation is amazing and it’s so important to talk about your wishes when you are well.
We thank the donor and their family. We will be forever thankful to the Renal Transplant Team.
Also, there were so many other amazing people in Ray’s life who gave him quality of life as well as support and guidance through his many challenges.
New found friends
We have known for 20 odd years that Tony, my husband, has Polycystic Kidney Disease. Three years ago, our lives were turned upside down.
Acute kidney failure knocked Tony into hospital and so began our journey. He endured several surgeries to prepare for dialysis, which started nine months later. Our life no longer belonged to us—our social life, our work commitments and holidays were governed by dialysis.
I did not hesitate in offering my kidney so Tony, we as a couple and our family, could have a better quality of life. I hated seeing him unwell, even after dialysis.
We were privileged to have the most amazing team assist us with our work up. My never ending questions were always answered and not once did I feel frightened, but I felt empowered that I could help my man.
This team soon became like new friends. They cared for us as individuals and wanted us both to be informed and make independent decisions about the transplant.
Surgery and recovery went smoothly, and I was home four days after surgery and Tony after six days. Three and a half months later, we marvel at all our spare time. We love that we can just take off for the weekend and are tied to no machine.
We are both back to work, but are monitored by our treating hospital and a friend on the end of the phone if we need to call.
My name is Judy and I’m the mother of two very beautiful daughters, Gayle who is still with me and Naomi, who passed away last year.
I am also the grandmother of two adorable grandchildren, Tyson and Dannika. We all had a very close relationship when the most unimaginable thing possible happened and our lives were changed forever.
My youngest daughter Naomi passed away. I couldn’t and still can’t believe it’s happened. As far as we were concerned Naomi was a healthy 24-year-old and we had no idea what was to come.
Naomi was taken to hospital at lunchtime and passed away early that night. Being in the hospital with her as she slipped away from us was, I’m sure, any parent’s nightmare. I felt like someone had just ripped my heart into pieces. I was so numb, like it wasn’t happening to me.
It was a really bad nightmare and I wished I could just have a good night’s sleep and it would all be okay in the morning. I realised when the doctors had come back to talk to us again that it was all real, no matter how much I wished it wasn’t.
I knew once she had passed that I had to speak to the doctors about donating whatever we could as Naomi had made it very strongly known right from when she first got her learner’s driver’s licence, that she wanted to be an organ donor.
We all often talked about it, so to make that final decision for me wasn’t that hard. We were, however, surprised to know that due to her circumstances, we were only able to donate her corneas which helped two people. I knew, even though I couldn’t keep her here, that others would benefit and she would still live on in them. I know she would have been so excited to know she was able to help these people live easier lives.
It’s been the hardest thing I’ve ever had to go through and every day is still a struggle but I know that Naomi is and always will be around us.
We love and miss her so much.
Rachel and Marlene
Marlene first got sick with kidney dysfunction after she had her twin girls Rachel and Lisa. By the time they turned 12, Marlene’s failing kidneys meant immediate dialysis – four hours a day. The family’s time together suddenly shrank.
A few months later Marlene was away in hospital when Martin had a stroke. It was weeks before things got back to normal. Martin at home looking after the girls and Marlene on dialysis four hours a day.
At 11.30 one night Marlene’s doctor called, “We have a kidney here for you. Please be at the hospital by 8 o’clock tomorrow morning.” The girls cried with their Mum. Rachel said to everyone, “It’s really happening, I can’t believe it.”
The family had planned for this moment – the girls went to a friend’s and Martin took Marlene to hospital. A few days later it was the girls’ birthday. Finally Marlene was on the phone, “Happy birthday, the operation went well and I should be home in a few months.” The girls were over the moon and it wouldn’t be that long until they could see their Mum again.
When Marlene came home they all started a new life. Marlene was healthy again, the girls were in upper primary school and Martin was on the road to recovery – healthier because he wasn’t so worried about his wife.
The girls tell this story to all their friends and say, “We’re so glad and proud that we still have a Mum. We don’t know what we would do without her!”
The girls mean every single word, they adore their life, taking every day as it comes and they appreciate their parents for what they have been through.
Moral of the story: stand strong with your family through anything and never give up, happiness is waiting just around the corner.
A dream come true
I stood on the bank of the East Alligator River, Arnhem Land Northern Territory Australia. It was a dream come true. My husband and I were on the trip of a life time. A trip that a few years before would have been impossible for me to take.
I had suffered kidney disease since I was a young woman and now in my mid-fifties and having a new kidney I was at last able to fulfil my dream.
I had lived on just one fifth of one kidney for most of my adult life and the day the doctor told me that my little bit of kidney had died was devastating.
I spent three years on a dialysis machine before being called up for my transplant. What a difference it made to my life. I have been able to enjoy the birth of five of our eight grandchildren since then and to watch them grow is wonderful. I will forever be thankful to the family who knew their loved ones wishes regarding donating organs as their gift has given me a new lease on life-—a freedom that I would otherwise never have had. Thank you to the unknown donor.
Joan and John
To give and to take.
To donate and to receive
My wife and I have witnessed both sides of the donation and transplantation equation. We became a donor family when our youngest son David died at the age of 20 and became an organ donor, and then later I was to become a recipient following my own lung transplant.
Many years ago we were advised our son David was in the local hospital, after suffering a severe cerebral haemorrhage due to Marfan’s Syndrome. David was six feet seven inches tall (201 cms).
We were most appreciative of the way we were approached about donating David’s organs. The respect, dignity, empathy and professionalism from all staff was beyond reproach and was unforgettable. The whole process was explained to us in a most satisfactory manner and we were with the doctors at David’s bedside when we were advised that his condition was irreversible and terminal. The two doctors were very thorough in explaining to us how and why our son was pronounced ‘brain dead’.
I cannot emphasize enough how the donation of David’s organs has cushioned the shock of our loss. Every day since David’s passing we have appreciated the fact that eight other people are either alive today or enjoying a better quality of life, thanks to David’s generous gift.
My own transplant story began after being diagnosed with pulmonary fibrosis. It was not until four years later that I was added to the waiting list for transplantation and a further three years after that I received the long awaited call offering me the gift of life.
My sincerest thanks to the donor and family for this wonderful gift. After having spent three years on oxygen and with a mobility scooter, I now enjoy a free and active life pottering about on the hobby farm acreage my wife and I have bought. I see every day as an absolute bonus and windfall.
Jenni and Rodney
Paired kidney exchange
Several years ago we found out that my wife Jenni had kidney disease and that this disease would eventually lead to renal failure. Not long after, we were told that she was in the last stage of renal failure and that she would have to prepare herself to start dialysis.
We heard about something that would change our lives forever—the option of a living donor transplantation. From that point forward I knew that if I could, I would donate a kidney to my wife.
Unfortunately, after a series of tests, we discovered that I was not compatible and that I would not be able to donate my kidney. We were told that we might be able to participate in a kidney donor exchange program. I would donate my kidney to someone, so that Jen could get a kidney from someone who was a match for her body.
The testing began once more, and soon after we received the call we had been waiting for. We were to be part of the first paired kidney exchange in our state and our transplant operations were scheduled for the following month.
The operation was one of the most significant days of our lives-—for us and for our children. All three attended the hospital to be with us and to watch over us as we got through the day and those that followed.
We are both doing fantastically since the operation. It took Jen a while to adjust to her medication, but she has been lucky. We have both been so lucky.
Ken and Jo
Ken – As good as you can get
The one word that described my late partner Ken is ‘helpful’. Always pitching in – setting up marquees, fixing broken items around our home or at friends’, or just lending a hand to ensure things worked. If he found problems he solved them in a quirky way.
So it’s fitting that even in death he’s helping others. Five to be exact – who are able to live a better and more comfortable life, as Ken donated two corneas, two kidneys and a pair of lungs.
Ken was a practical but really fun-loving person who enjoyed life to the fullest. He was a ‘bridesmaid’ at the wedding of some running friends, complete with red dress, hosiery and a hair fascinator.
We had talked in general with mates about the fact ‘you can’t take it with you’, and both of us had agreed to have Organ Donor on our driver’s licences years ago, although you never really think it might be needed.
At 55 Ken was in Intensive Care on a ventilator, after suffering a massive heart attack and the prognosis was bleak. His loving family and I had to make some decisions.
Luckily the person who was relaying all the information to us was an absolutely wonderful ICU consultant – kind without condescension, factual rather than clinical, and happy to answer the questions of a grieving family.
He reassured me I had done as much as possible and that without my CPR and the OOO call, Ken’s family, who mostly live hours away, could not have said goodbye.
That word – GOODBYE. So very final.
We felt a terrible loss and grief, but the glimmer of hope and perhaps comfort was that others would benefit from his generosity.
It is empowering that a nearby stranger could potentially have Ken working in their body.
We shared 13 amazing years. If the recipients can have that, or more, they’re not only privileged but doing exactly what he would expect – being as good as you can get.
I have always tried to face challenges head-on, something which I have had to do since I was born.
At birth I was diagnosed with 1/8th of a working kidney and was told that I would never see my second birthday. Instead I spent the first five years of my life in and out of hospital having numerous operations.
I never had a childhood like all the other kids and I never played sport. Instead I learnt to play the guitar. It was a special gift from my grandfather when I turned 10 and a way to escape the stress of my health.
Dad was my first kidney donor when I was 12 years old. The change in my health was hard to believe. Before the operation I was wearing size six children’s clothes and was unable to walk without the aid of crutches. Seven weeks after my transplant surgery I ran from the plane to greet my family-—which brought tears to every eye. I was finally able to live and love life.
Ten years and three months later (I was told my kidney would only last 10 years), I had to face the same tough challenges again. Initially I required dialysis three times a week, but this was not sustainable due to the risk of cardiac arrest every time. For three years I had dialysis at home.
I received a call to say another kidney was available for transplant, which was amazing!
To this day, it still raises emotions when I think and talk about what has happened. Knowing that a family was going through so much pain and grief when they considered to donate a kidney which gave me back my life.
The challenges which I faced have taken a toll on my family, however I wouldn’t have made it through these challenges without their continual love and support. Having Mum by my side gave me the strength to confront and overcome every hurdle that I was faced with.
Every year I have a very special anniversary and I promise to remember the generous gifts I received from my Dad and from that special stranger.
I am 36 years old and come from a Vietnamese background. One and a half years ago I was diagnosed with liver cancer. I felt like I was sentenced to death and was waiting to be hung. It was the hardest moment in my life.
I was diagnosed with liver cancer by a doctor who told me I needed a liver transplant to get rid of the cancer. I then had further tests and was told the tumour in my liver was too close to the main arteries and the cancer may have spread to my lungs and bones. If this was the case, then a transplant would not be possible.
After two weeks of worrying and waiting, I was very happy when I heard the news that my lungs and bones were normal. Two months later, I was placed on the transplant waiting list.
I hoped to receive a transplant as early as possible—before the cancer spread to other organs. If that happened then my name would have been withdrawn from transplant waiting list.
One year later, I received a call from the transplant coordinator that completely changed my life. Thanks to the generosity of the donor and their family, I am now cancer free and have a new liver. It has been two months since my surgery and my recovery is going really well. In another few months I will be able to go back to work and live a normal life.
Words cannot describe how grateful I am to the donor, their family and all the staff from the transplant team for giving me a special gift.
I will never forget you.
Thank you to my unknown donor
I was 28 years old and lived a spontaneous outgoing lifestyle. I worked hard and enjoyed socialising. I was soon diagnosed with kidney failure due to an unfortunate case of extreme food poisoning.
After feeling unwell over a few days, I visited my GP and was prescribed blood pressure medication to treat the symptoms. By the time I admitted myself to the hospital, it was too late. I was told that I had to dialyse three nights a week and that the average waiting period for a transplant was approximately seven years.
Although I am afraid of needles, I chose to dialyse using home haemodialysis to maintain my lifestyle. For three and a half years, my routine was work, dialysis and sleep. It was mentally and physically exhausting. The immediate future was uncertain and the new constraints on my lifestyle made it difficult to keep up with work, friends and family.
I received an unexpected phone call from the hospital offering a kidney transplant. I thought I would have been waiting another three and a half years. Initially, I thought it was a prank in cruel humour. It was after a few more probing questions that I realised the phone call was indeed from the hospital.
I was filled with so much excitement on my way to the hospital that all the nightmares of transplant surgery never crossed my mind. The transplant took place immediately. There were no complications.
It has now been one and a half years since my transplant and things are going smoothly. I am exercising again, eating well and focusing on looking after myself and my donor’s kidney.
People are always surprised by the amount of anti rejection medication I take, but in all honesty, life is much better now compared to when I was dialysing.
To this day, I don’t know what I ate that led to the food poisoning and am still afraid of needles.
I would like to say a big thank you to my anonymous organ donor for giving me a second chance in life. Without you, I would still be living through the pain associated with dialysis.
DonateLife Walk 2012
In November two significant things are happening. I turn 50, and it is the fifth anniversary of my kidney transplant. I am acknowledging these special events by writing my story for the DonateLife Book of Life.
At 33 I was unexpectedly diagnosed with renal disease. I was a working woman, a wife and a mother of two young children. What started with fluid on my legs ended with a kidney biopsy, a diagnosis of renal disease and an uncertain future. My treatment was pills, chemotherapy and attitude, as I was too busy to be dealing with renal disease.
I went into remission and when the disease would flare up, my specialist would fight with more chemo and more drugs. We travelled this path for 12 years knowing that a transplant would be our final destination.
People knew I had kidney disease and would amaze me with offers of a kidney when I needed one. Family, friends, work colleagues – many very generous offers.
Of all the people who had offered a kidney, I felt one was in the right space, had come from the right place and I
knew would probably do it if at all possible. So I rang my friend and asked her if she was serious with her offer—she said, absolutely.
We went into ‘transplant mode’ and amazingly we were reasonably compatible for being unrelated, hitting three markers. The rest could be taken care of with drugs.
My husband, girlfriend and I all drove to Sydney for my transplant surgery and it was hugely successful.
Five years on, my girlfriend is well and running half marathons and I am well, happy, healthy and thankful. Every day I am thankful.
I am thankful to my husband, children, family and friends for their love and support, to my specialist for his knowledge and expertise, to the transplant team and the staff for their expertise and care, and to other medical professionals involved over the years. Most especially, I am thankful to a friend who gave me a gift and the opportunity to have quality of life.
Julie and her son Jarrod
A divorced working mum of one, Julie was constantly on the go. Julie was the older of two girls and like most sisters they had disagreements—but these spats were short lived and they would settle their differences.
Even though Julie was the elder, she was the littlest of the two girls and would be called ‘the little princess’.
On receiving her High School Certificate she worked at various positions but was always looking to improve her career skills and jobs. She worked long hours with the Defence Department as well as managing a boys soccer team.
She was known as a Pied Piper picking up different team members of the local soccer team so that they could attend training and games.
She also was part of the local cricket team and ensured that her son was part of a team. She was a helper and constantly worried about family and friends, having the right gift for someone, cooking the right meal for guests and helping others if she thought they needed it.
In November Julie complained of a head ache that she’d had all day, thinking that lying on her neck crookedly during the night was causing the pain.
After collapsing she was taken to hospital via ambulance where she began to have fits. Over the next ten days she was taken to the operating theatre on three separate occasions. During this time she was not able to communicate very well and was terribly confused— thinking she still lived in Sydney. The skills of all the medical staff were not enough to save her.
Julie became a donor at the age of 40. She gave seven people another chance in life. Her heart, lungs, kidneys, spleen and liver were transplanted successfully. Big things from a girl who was not five foot tall and who had hearing loss.
Her organs have helped the recipients and their families and we can’t imagine and the joy that they have received. It would be great to know that some of her personality has rubbed off on them.
Peggy and David
With my cousin before and after my transplant.
My second chance in life
I cannot find the words to thank the family and the donor of my liver—who is now resting in peace.
I was put on the transplant waiting list two days after my wedding. I was not allowed to go on a honeymoon because I was so sick. I can’t look at my wedding photos now.
I was told they had a liver for me and that I would go into surgery for a couple of hours. I was shocked, surprised and scared ... but happy. So many mixed emotions running around.
After waiting for 14 months, constantly being hospitalised, I am back to life. I enjoy every minute of life and it felt like I was born again when I opened my eyes after the surgery.
May the person who donated their organs rest in peace.
I wouldnt be here now if you didn’t consider organ donation. I can’t thank you and your family enough. Sad to know such a good and thoughtful person is not here anymore. My thoughts are with you.
Turk loved all creatures great and small.
My husband Turk (Alan), put his life before others as he rushed to help two small kids from a car that had crashed into a guard rail.
He lifted the kids aged five and six from the car, and was assisting the driver when another car hit him. Turk was thrown in the air and he died at the scene.
Luckily, a doctor turned up and he was on life support for two days.
He always joked about parts of him not being good enough for transplantation. There are now many people leading a better life because of him. Someone now has a new heart and two others have his kidneys.
He also gave bone tissue. He had a blind eye, but someone now can see out of it.
He is my HERO.
Stewart in Uganda
Story of encouragement
My son Stewart was tragically killed in a freak motor bike accident. I still find it hard to believe that he is gone and that I just can’t wake up from this nightmare.
Stewart was like an angel that shone a light on this dark world. He lived to be a good servant of God and helped people in need. He was only 19 when he volunteered in Uganda and spent a further six months there when he was 21.
On the day of his accident he did some unpaid work to help out his boss, then he was fixing tiles on a roof and then crawling under a house to fix some piping.
It seems so unfair that the only time he had to relax and enjoy himself was when he went for a ride on his bike with his friend. It ended in tragedy.
He touched so many lives through his willingness to support anyone in need. Where God gave him eternal life, he too willingly gave the gift of life to six people through organ donation.
Stewart wanted to be a Minister and I was recently sent a tape where he was a guest speaker at a local church. He preached about encouragement and how we need to always support those in need. It made me smile again from within and I realised just how proud I was of him.
He has given me encouragement, and at the end of this year I am going to Uganda to volunteer.
I will continue to promote the importance of registering to donate and talking about it with your loved ones.
Stewart may be gone but he will always live on. Knowing about the lives he has changed through organ donation has brought me a sense of peace and balance in trying to cope with the tragic loss of my beautiful son.
Kerry and her family
Twenty-five years ago at the age of 23, I was diagnosed with the degenerative eye condition keratoconus.
As I sought to understand the implications of my diagnosis I learned that one day I may need to have corneal transplants to restore my vision.
More than 20 years later I suddenly lost the vision from my right eye. I had developed the rare complication of keratoconus—corneal hydrops. Slowly my eye healed and some vision was restored but I struggled with reading and distance vision. My eye was very light sensitive. I wore sunglasses even to put rubbish in the outside bin. Confidence in my vision and my ability to be involved with my family was reduced.
As a nurse I had dedicated myself to caring for and helping others. Now I was facing the prospect of losing my independence and being a burden to my family—it was devastating.
Making the decision to have a corneal transplant to improve my vision was difficult. Even being wheeled into theatre I still struggled. Should I just be grateful for the vision that I had and let sleeping dogs lie?
On the first day I inserted my new contact lens into my eye, I was simply stunned at how clear and perfect my vision was —before it became blurred with tears. I could not ever recall having vision like this.
I know my need was not life threatening, yet it was. It threatened the quality of my life and the essence of who I am.
My donor shall forever hold a special place in my heart. Every day when I wake, open my eyes and can see, I feel blessed to have received their gift.
The easiest letter I have ever written was to my donor family. The words just flowed and yet there were not the words to describe the overwhelming gratitude that my husband, my daughters and I feel for their decision. It does sadden me to know that it was the death of their loved one that enabled me to have improved vision.
Gone too early but not in vain
Ethan (or Jimmy as he was affectionately known) was a three-year-old boy who lived his life to the full. He was up before dawn, doing whatever he could before he fell asleep again (wherever that might have been). He lived and he loved. Always affectionate, with a kiss and a cuddle for anybody anytime. Sharing his love with whom ever he could. He was good at sharing.
One morning, he decided to climb the gate to wave to the train that ran behind our property. He was clipped by the train and airlifted to the hospital. It was there that we received the gut wrenching news that the doctors could do no more to help our little boy. We made the heart breaking decision to turn off the life support and donate his organs.
We didn’t need to think about it or even be asked, our Jimmy would have shared. The indescribable feeling of hopelessness and despair we felt, knowing that we could not take our little boy home, is something that was so painful we would do anything to help other families not go through it as well. If Ethan could help a family to be able to go home with their loved one, to live, to love and to laugh with... it was the least we could do.
This gave us some comfort in a time where there was none. He might have died far too early, but it wouldn’t be in vain.
Michelle and Jon
Hayden—born an angel
Hayden has always been an angel. Having an older brother with Aspergers, Hayden stepped up and was the little 'big' brother. From very early on he looked out for his brother and protected him. He wasn't just a brother but a best friend and they idolised each other.
Hayden went to get his brother from a friend's house at the end of our street and never made it home after tragically being hit by a motorcycle.
Because Hayden was such a giving child, the decision to donate his heart valves was very easy. This is what Hayden would have wanted—to be able to help someone else.
Hayden was always trying to ensure others were happy and helping out whenever he could. His teachers always praised him and said he was the one child that would always put his hand up to help out.
Hayden tried many sports in his short nine years and fell in love with tennis. This was his niche sport.
Hayden wasn't exactly sure of his career path but he knew that he wanted to help others. He was quite sure that he would either be a nurse or a teacher.
As parents we are heart broken to lose our son at such a young age but we are forever proud of such an inspiring young boy!
Robyn, Jeff and Ryan
My mum gave sight to two people
My beautiful and vibrant 61 year old mother died suddenly last year after being diagnosed six months earlier with a brain tumour. She had the most beautiful eyes, an eye for beauty, a sparkle in her eye for fun, an eye for a husband for me (she found me one), an eye for a good recipe and an eye for a bargain!
It is only nine months since she died and I miss her so much—as do her grandchildren and her husband of 40 years that she left behind. It is so comforting to know that even though we don't have her, out there somewhere are two lucky people who benefited from the donation of her eyes.
What a beautiful world they must see through those eyes! In a way, her fabulous legacy lives on.
Angus in intensive care after his kidney transplant.
My name is Angus. I am now 21 but my story begins when I was nine years old. I was camping with my family and friends when I became sick. Nothing too concerning at the time, just typical flu like symptoms. But after a week I hadn't improved so my parents decided I should see our GP.
The blood tests showed kidney failure, and just like that, I was off in the ambulance to the hospital. Completely oblivious to the situation I remember thinking how cool it was to be riding in the back of an ambulance!
Fortunately, both of my parents were compatible as donors so I did not need to wait for a kidney. I was even more fortunate to be bumped up the transplant list allowing me to avoid dialysis and In the end I was lucky enough to receive my mum's kidney.
The transplant couldn't have gone any better and I have had no kidney related complications in more than 12 years! I don't recall much detail from that period of my life and to be honest I didn't really understand the severity of what I had gone through. All I remember is that I wanted to be a normal kid again, playing cricket with my mates. Thanks to my doctors I was given that opportunity.
One of the risks of a kidney transplant is the ongoing medication and associated complications. Unfortunately such a complication eventuated and I was diagnosed with bladder cancer at the age of 20.
Given my suppressed immune system the prognosis wasn't great as a strong immune response and the prospect of my body beating the cancer was considered unlikely. The oncologist even recommended that my bladder be removed and that I live the rest of my life with an external bag. Thankfully the willingness of my urologist to 'give the treatment a go' resulted in the best possible outcome and I was able to beat the cancer—although I still require six monthly maintenance treatments for the foreseeable future.
I am extremely thankful to all the doctors involved and consider myself to be very lucky.
Lastly, I would like to thank my Mum for the kidney! I owe you one.
It's an international day of sadness but each year my family remembers September 11 as the day that brought them hope.
I was eight and having chemotherapy for leukaemia. The worst bit was when my long brown hair fell out. Although Mum spent time buying and making me hats, it just wasn't the same. All my friends were enjoying school and out having fun while I seemed to be stuck in hospital forever.
When a new chemotherapy wasn't working the doctors suggested a bone marrow transplant. My Dad was a match, and the bone marrow transfusion was scheduled for 11 September 2002—the first anniversary of the terrorist attacks.
I was worried because of the date, known to be a tragedy. Eight hours later the transfusion was over and I was feeling better than I had in months.
I grew into a healthy teenager enjoying life again, but when I was 16 I was diagnosed with Wilson's disease—a hereditary disease that unfortunately meant I needed a liver transplant. The two illnesses were unrelated. It was just incredible bad luck.
In another amazing coincidence, just a week after my diagnosis, a suitable liver became available. Some people wait years for a donor organ. I'd found luck in a very unlucky situation.
I felt a combination of emotions after realising the date, it was September 11. It was many years since Dad gave me his bone marrow. Dad said, "It must be your lucky transplant day." I was filled with hope now that my luck had finally changed and my fears melted away. But I also felt sad for the family who'd lost a loved one. Their kindness had given me a second chance.
In ICU after 10 hours of surgery, I was exhausted. I was moved to the ward after three days and a few weeks later I was at home and cured.
September 11 is a day I always mark. I remember the victims in New York and the illnesses I was able to overcome and am thankful I'm still here. For me, it's an anniversary of life.
Our beautiful Cheryl (Mum) left us— the result of a choking accident (food). It is hard to comprehend and brain death is even harder. On arrival at the hospital we were told to expect the worst and then asked if we had considered organ donation.
We spent the next four days bedside, barely speaking let alone discussing organ donation. We were all hoping that this reality would somehow turn out to be a bad dream.
Over the coming days all the tests were pointing to brain death. We would have to turn off the machine.
The dreaded day arrived and family and friends said their goodbyes. We were given some time in between brain tests. Two are performed, the second one would be the official time of death.
Among the four of us, two of us were in favour and two still unsure. We didn't know mums wishes. Finally we made the decision, we would donate. Even if you're in favour of organ donation it is still scary—all of the what ifs etc. Knowing she was a kind and giving person helped us to make the decision. I must say, in that
moment of great sadness and loss you cant help but feel somewhat happy for someone else. Someone else wont have to experience what you are now. The whole grieving process is strange, nothing seems normal.
A few weeks had passed and we were anxious to know the outcome, hoping something good had come from all we had, and still were going through. My brother had been staying with me and I was taking him home the day I collected the mail. Hesitantly I opened the envelope and read the results out loud. You can imagine the happiness and relief we felt when it read three people had benefited and all were doing well. There were a lot of tears that day.
Mum we are so proud of you. You are our hero, our angel and we love and miss you every day. We hope all the recipients lead long and happy lives.
To DonateLife, all the medical staff, donors and their families you are truly amazing people. This experience has changed our lives forever and we will continue to support organ donation and DonateLife in their endeavour to save lives.
Jennifer and her sons.
A precious gift
Hi, my name is Jennifer.
In 2004 I was diagnosed with a rare deficiency which affected my lungs. I was living on 20% oxygen and told I would need a double lung transplant.
I was afraid and couldn't quite get my head around the idea as I didn't know a lot about transplants. I had what I believed to be a good quality of life where I could still do most things, just at a much slower pace. I also have twin boys that needed their mum.
Seven years later I was still on oxygen and finding life a little hard at times. It was then I decided that I did need the double lung transplant. My boys were 13 years old by this stage.
After being on the list for only one and a half months, I received my precious gift. This has not only changed my life, but the life of my children.
I think about my donor and their family every day. The decision they made gave me a gift of life that I will cherish forever. I am taking care of their loved one, whom now is a part of me. I will be forever grateful.
I would like to thank my family and friends for their support and strength, even when they were hurting inside. I could not have done this alone. So thank you for your love and patience.
I feel amazing and make the most out of every day. Life really is beautiful. Thank you. xxx
In LA at Cafe Gratitude
A second chance
My name is Racquel. Last year I celebrated my 40th birthday and this year I will celebrate 17 years of life that I would not have had, were it not for a kidney transplant.
When I was 23, my kidney function deteriorated after years of kidney disease. I went onto dialysis and managed this at home for four months. During this time the staff at the hospital spoke with me about having a kidney transplant. My doctor confirmed that without a transplant I would die.
When I received the call, I had no idea that it would change my life so dramatically. I had a kidney transplant and was cared for by the team at Westmead hospital. Over the years I have taken immune suppression medication and I have been very happy to see real progress happening in the transplant world.
I feel as though I was not only given a second chance, but as though I was given life. I am blessed to have achieved so much during the last 17 years.
I am completing a degree in social welfare and I work for a charity with disadvantaged children. I’m in a loving relationship, I’ve travelled the world and I say thank you every single day.
A transplant not only changed my life, it saved my life. Were it not for the very courageous and generous decision that someone made, I would not be here today.
Rodney-the perfect man
Rod is a very much loved man. He lived happily married to Val for 38 years, had three children (Tracey, Trent and Kylie) and six grandchildren—the youngest whom he sadly never got to meet.
There wasn't anything Rod couldn't or wouldn't do for his friends or family. He could not be summed up in one word. A few words that do describe him are patient, helpful, calm, perfectionist, handyman, loving and family man. It has also been said he can 'walk on water'. We thought he was perfect.
He loved cars and absolutely anything to do with cars. Our family grew up watching all kinds of car racing. On Bathurst weekend, it was always best to leave the house as there was to be no talking while the race was on, Val included!
He enjoyed many hobbies including photography, gardening, working in his shed and lawn bowls which he took up when he retired only two years before we lost him.
So we were all very shocked when at 66 years of age, he suffered a stroke and brain haemorrhage. He survived hours of brain surgery and eight weeks in hospital. Sadly he had a fall in hospital and had another bleed on his brain. He was unable to recover and he was declared 'brain dead' the next night.
It was then we had some major decisions to make. Thankfully we had all talked about our wishes to be an organ donor and we knew Rod had registered to do so. He'd had a discussion with us all and made sure we all registered as well. So even in the saddest time of our lives there was no wavering in our decision for Rod's organs to be donated. The staff from DonateLife could not have been any more helpful, caring or understanding. They made this extremely difficult time so much more bearable for us all.
We then said that final word...Goodbye.
So even in death he is helping others. Six people are now able to go on living a more comfortable life. We know Rod would be as proud of us for following his wishes as we are of him.
Val, Tracey & Trent
Mike. A special son and brother.
A special son and brother. Forever young.
Our darling boy Michael was only 33 years old when he collapsed at home with a severe bleed to the brain (Aneurysm).
He had many friends who were shaken and sad when the news filtered through that Michael had passed away.
His family including my husband and I, Nick and Patricia, his loving sister Tina, her two little boys Lachlan and Mitchell (Mike's nephews whom he loved to bits) their dad Dan, Mike's big brother Paul and his Nana are all still very shocked and grieving in their own way. We miss him heaps of course, but we talk about him often and have a little cry for what should have been.
His story didn't end with him leaving us to start his next journey, in fact it was a new beginning for others. Because of his wishes his heart, kidneys, pancreas, liver and also his retinas and corneas have gone to help others lead a healthier life.
We learnt of his wish to donate from an advertisement on TV asking for families to have a sit down meeting to discuss this very delicate subject. So we, together with Michael, sat down and discussed what we each wanted.
Mike casually remarked that if anything happened to him he couldn't see the point of organs rotting in the ground when others could be helped to live a better healthier life.
This was Michael. He was always thinking of others. Sadly for us our darling Michael did pass away in hospital only a few months after this discussion.
After he collapsed at home, he was then taken to hospital but his lovely caring and thoughtful brain was gone. Because he had already told us that he wanted to donate his organs, it made it so much easier at that very incredibly sad moment in our life because we knew his decision. We just signed the papers.
It was and still is very, very sad that our youngest son died. Knowing that part of him is still living, that he has helped others to survive and that his last wish was extremely kind and caring —certainly helps us with our pain and grief.
Kisses good night as always Mike.
Angels of humanity
With your heart
I can survive
With your eyes
My sight revived
With your lungs
I breathe new life
With your liver
Blood pumps through me
Help me live
Your skin heals
My horrific scars
Burns now slowly fade
So to my pain
Your gift of organs
Given to me and my family
The Miracle of Life
We dared to believe
We would ever receive
We are sad
You lost your battle
But forever grateful
For your gifts of life
We promise to live for you
Enjoying each precious new day
Because of you
For your courage
And your strength
We will remember always
And your family
Who gave us a special part of you
Your spirit will live on
As you gave yourself to us
In our desperate hour of need
You are our hero
Not just an organ donor
But the precious giver of life
An Angel of Humanity
Thank you we wish to say
To you, but cannot
For you are gone
But NEVER forgot
So we say thank you
To all the future heroes
And their families
Who make that heroic decision
The gift of life
Thank you our heroes
You are inspiring for all to see
Our Angels of Humanity
May you Rest in Peace
After some months of being treated for a duodenal ulcer, I was referred to a physician who immediately diagnosed me with a renal problem and within two days I was admitted to hospital. I was 56 years old. I was told months later that an ulcer can be caused by renal failure.
It was there that I was diagnosed with 'microscopic polyarteritis'. My wife Loretta and I were trained in home haemodialysis and this worked well for us. We have a very active life style and were able to work around dialysing times. We didn't allow it to dominate our lives. I didn't want to be an invalid and I wanted to go to work, which I did until retirement.
One morning Loretta was preparing dinner for family and close friends whose first grandchild was to be born that day. I was at work. At 11:15am Loretta received a phone call from the hospital asking how I was feeling. Then they asked "how would Brian like a kidney?" No need to tell you the answer. The lamb roast was off. Some friends said "fancy putting off a lamb roast for a kidney".
As we began the three hour trip to hospital we reflected and prayed for the family who were grieving but were so generous. They have given me such a wonderful 16 years (so far).
I have experienced the birth of grandchildren and enjoyed all their activities. Sport, dancing and great family times which I would never have had without the generosity of my donor family. They are a big part of our lives even though we do not know them. I made a promise to them that I would look after and care for this kidney. I treat it as a very treasured gift—which it is.
With the help of the wonderful team in the renal unit and my local renal physician, I am a very happy and healthy man and very, very grateful.
I was badly burned during an ultra-marathon in 2011. After we were rescued I was put in an induced coma and airlifted to Darwin. It was there that doctors performed an eschartomy on me – slicing me from my feet to my thighs and from my hands to my shoulders. After Darwin, I was flown to Concord in Sydney.
After the doctors debrided (removed) my dead and burned skin they needed something to 'cover' me. As there was absolutely no skin tissue available in Australia they ended up using a synthetic skin replacement.
Sometimes there's no substitute for the real thing and this turned out to be true in my case. My doctors frantically searched the world for some skin tissue and managed to find some in America.
Then came their next problem. In Australia, it is illegal to import any skin tissue – customs would not let the package of life-saving skin through. In a race against time, my doctors put it plain and simple: 'if you do not let this skin through, she will die'.
The skin was rushed to the hospital, where the doctors performed miracles. Not only did they bring me back from death twice, but they also managed to put me in a relatively stable condition.
I want to debunk a few myths about skin donation here. Firstly, all the skin I have on my body is my own skin.
Because I was burned so badly, I didn't have enough unburned skin for the doctors to harvest and graft— they used cadaver (donated) skin to cover me while my own skin grew.
Only 1 out of 100 of people who die will make suitable organ donors. This number jumps significantly when you start talking about skin and other tissue—it's one in five. I was dumbfounded when I found out that there was no skin available in Australia.
I will be eternally grateful to the three Americans who donated their skin. Without it, I definitely would have died, and I definitely wouldn't be here today to tell my story.
Samuel, Ron, Suzi and Maree.
I have had renal failure all my life and I am currently 56 years old.
Straight after my honeymoon (age 20) I received my first access device (fistula) to go on haemodialysis at home which lasted four years.
As a couple we were always told we would not be able to have any children.
After receiving my kidney transplant at the age of 24 my life completely changed for the better, but I was still unable to conceive.
Then a miracle happened. After prayer my body healed further. Two weeks later I had a healthy period and two weeks after that I fell pregnant. Ron and I had beautiful boy/girl twins—Samuel and Maree.
My transplant lasted 23 years in which time we were able to travel and live normal lives.
After the transplant failure, I went onto PD (Peritoneal dialysis) for eight years and now I have been back on haemodialysis for two years.
The best news now, is that my twins are 28 years old and are both married. I now have a one year old baby granddaughter Bonnie.
The next generation...
His life, full of adventure.
My dad, Mark
My dad was, and still is, my biggest inspiration. He was a single parent who raised his only daughter to be strong, adventurous, honest and hardworking – just like him.
He travelled the world and never held back on adventure. When I was 15 we began our backpacking trips together, leaving the country for months at a time over the next few years to follow the roads less travelled. During these trips he would spend as much time as possible teaching me his thoughts on the world around us.
Back at home, he built his business from scratch and worked hard to put me through school, where he was strict on my studiousness. Dad taught me that you got nothing out of life without hard work, honesty and being a good person. He never missed a chance to sneak a life lesson into our everyday life.
Dad was killed when I was 18.
In one fell swoop I lost my hero, my teacher and my protector. He died of a brain haemorrhage, caused by the hand of another man.
My family had already been through hell; we lost my aunt in the Bali bombings, and another aunt when she was a toddler. This would be the third child my Grandparents had lost and they couldn't bare the thought of walking away from Dad for the last time, while he still technically lived. They wanted to be there with him. You can't blame them.
I knew Dad wanted to be a donor.
I'll tell you, it's not easy to convince a big family to step down in a time of such heartache and I didn't succeed without a fight! But I did, because I knew it was so important to him and it was what he would have wanted. It was his last sneaky little life lesson!
It's hard to express how much of a comfort it is to be apart of the donor community these days. Even five years on the letters still bring a smile to my face. I am so thankful that Dad taught me to be strong and my family are grateful too because they share the same comfort in receiving the letters and stories from the recipients and families.
I know chances are I will never meet our recipient families but if I ever did, I would give them the biggest smile and hug and thank them for living and loving every day, in honour of my dad.
Tracey and Trevor
In honour of DonateLife Week I would like to share my story.
In 2004 a week after my 40th birthday, my husband Trevor (on his birthday) donated his kidney to me.
My life started again with increased physical stamina and energy, improved brain function and mood stability. I have had perfect kidney function since then and Trevor has also had perfect kidney function.
He was in hospital for only three days, recovery time six weeks and return to normal kidney function within months. His operation was performed through key-hole surgery.
My big hero
My little brother, my hero
It was my husband's 31st birthday and our kids (two and four years of age) were fast asleep. My hubby and I had just finished packing away a load of washing and were climbing into bed when his phone rang. It was a phone call I will never forget—a phone call I wish we never had to receive.
A family friend had driven home past my parents house and saw three police cars; one each at their neighbour's and one at my parents house. My parents were five hours away in Mildura on a week's holiday and had been there for two days.
The phone call was to tell us my 18 year old brother had been in a car accident. She didn't know how bad he was, but he was being airlifted to the Alfred Hospital and we had to get their asap.
We were within five minutes from the hospital when my mum rang and told me there was no hope for him, but to get there and wait with him till she arrived with dad.
That night went forever. It was 3.30am before we made the heart-wrenching decision to risk leaving him to go home, get some rest and return later on and decide what to do.
My parents, husband, uncle and I returned later on that morning, still in shock, but after discussing my brother's situation with the doctor it was decided there was just no hope and we had to say good-bye.
My brother is my hero because at 18 years old he became an organ and tissue donor. His gift of several organs has improved the lives of so many and his tissue is being kept for future use.
He was a beautiful person in life and a beautiful person in the after-life.
Donald died at the age of 30—one day before his 31st birthday. He was fit, happy and had the world at his feet. His death was the result of a traffic accident.
Donald had a good life, making friends wherever he went. He travelled the world for over six years with his friend Travis. They worked in a summer camp in Maine, USA, taught snowboarding in Whistler, Canada, worked on cruise ships in the Caribbean and Alaska and he had many other jobs in the United Kingdom and South America.
He loved to play Australian Rules football and ride his bike. He rode through much of Europe with a group of friends. He took pleasure in everything he did and in the people he met.
He had recently returned to Australia and had started work as a Project Officer. He had just signed up to purchase a property and begin the next phase of his life.
His head injury was such that there was no hope of survival. Nothing prepares you for that news.
Donald had always been a loving and caring person and so he had told us that he wished to be an organ and tissue donor should the occasion arise.
His generosity meant that seven people's lives were saved or drastically improved by receiving his organs. Donald's heart, lungs, liver, left and right kidney and pancreas were all donated. His corneas were also donated.
As his parents it does give us some comfort to know that Donald has helped others to a better life.
"Life is not measured by the number of breaths we take but by the moments that take our breath away."
David and Joy
David (Dave) was born six weeks prematurely on 23 November 1960 the youngest of two sons to Judy and Ian. He grew up to be strong-willed and intelligent with many friends and interests including restoring VWs and surfing.
After finishing school he started an electrical apprenticeship and was about to be made a partner in the business for which he worked. He was super fit, funny, happy, clever, difficult, a joker and honest. He had just purchased his own home and was about to get engaged.
When driving to work he was hit by a vehicle that had been driven through a red light. He sustained major injuries and sadly passed away after being on life support for 32 hours.
We have been contacted by and spent time with the recipient of one of Dave's kidneys, who lives interstate, becoming firm friends of him and his family. It has helped us to know that out of a terrible tragedy some good has happened through organ donation.
He remains unforgettable.
Judy and Ian
Ian and Judy
My husband Ian and I have shared many challenges in our 58 years together, but our double-sided experience of organ donation has sparked a new passion—to promote organ donation as a wonderful gift of life.
When we lost our son Dave in a tragic accident, we didn't hesitate when we were asked about the possibility of organ donation. We knew Dave was incredibly fit and healthy and it was the right thing to do.
In a twist of fate, 12 years after Dave's kidney donation, I needed a new kidney. A kidney infection at five months of age had left me with ongoing health issues, which worsened after I had children. By 1997, I was on dialysis three times a week. A donor kidney was my only hope for a second chance at life.
The minute I went on dialysis, I packed my bags in the hope that one day a kidney would come. Thirteen months later, it did. Within five months, I had a new life and my family was amazed at my new energy levels.
It changed my life completely. I can eat almost anything I like and I have put on some weight. I know that the kidney has grown as well.
With our unique insight into the positive outcomes for both donor families and organ recipients, we urge people to consider donation, and to speak with family and friends about organ donation.
Judy and Ian
The three gifts
'We are going to the beach tomorrow, I can't wait—I'm dying for a swim ...'
She died the next day whilst swimming in the sea at Glenelg, South Australia. It has been the most tragic and desperate time of my life, but through her death she gave me three gifts.
My last conversation with Mum went like this: 'Wow Mum you're going to Australia on your own, you are so brave, I hate flying. I could never go on a plane for that long!'
She replied: 'I do not really like flying and I am not brave, it's just I am not afraid of dying, it's a win-win situation. I get to take some risks and have fun all at the same time!'
This was my first gift.
Since receiving this gift I have travelled to so many wonderful places in the world, taken life a little less seriously and I now love my life and take great pleasure in being alive.
When I was sorting through her personal effects, I noticed how many anti-ageing products she had bought over the years and couldn't stop thinking that at 63 she had never really become old – it made me think that this was such a waste of worries.
This was my second gift.
Rejoice in growing older! I love my wrinkles, it shows the world how full of laughter my life has been. I let my hair go naturally grey. I no longer waste worries on 'doing my roots' and I know that each day I am alive is a wonderful day.
Mum emailed me from Australia to tell me all about her holiday. I was really busy and thought I would reply the next day to tell her my news and end with a kiss and I love you.
Mum died the next day. I never sent her a kiss or told her that I loved her.
This was my third gift.
From that moment on I have been free with my affection, I never wait to tell someone they are loved and special I do it there and then. I make the time for the really important things in life.
I often heard Mum say 'Waste not, want not' which suited her so well. She was the most resourceful woman that I have ever known, she had the most amazing way of using up the left overs and scraps to make something wonderful, whether it was a meal, something to drink or even something to wear. She loved growing, making and mending things. So when we were asked about organ donation it was not a difficult decision to make.
'Waste not, want not' was her final gift to the world.
PS: I love you X
My second chance
I was diagnosed with a rare auto immune illness at the age of 14.
The doctors did not know much about my illness, it was all trial and error when it came to medication.
I've been battling the illness for 11 years. This year my health turned for the worst and I was in hospital frequently.
I got a call to say that they found a possible donor and I was transplanted the next day.
My surgery was successful and I am currently recovering well and looking forward to starting my new life.
My thanks go to my liver team and donor family who have given me a second chance at life.
Adam's liver transplant
My son Adam needed a liver transplant otherwise he wouldn't have made it to school age.
On day three after his birth the pediatricion sent him to another hospital and that's when they realised that he had Ornithine Transcarbamylase Deficiency (OTCD) which resulted in liver damage that was very serious.
We waited for over a year to hear about a liver transplant and in that time we had numerous hospital stays and Adam's condition continued to progressively get worse.
He finally had his liver transplant and we stayed close to the hospital for a further three months in case of rejection. We finally returned home after 10 months away from friends and family.
My son was 17 months old when he had his liver transplant. He is now 12 years old and still going strong. We have been so lucky to be trouble free all this time.
We still go every six months for checkups and for blood to be taken for testing.
It's because of another family's decision to donate, that my son is here today. There are no words that can ever describe that feeling. We are forever grateful to our special donor family who made the right decision.
To know what they had to go through to do this—it is the worse decision any parent would ever have to make. They now know that part of their special little man is still living on inside my little man.
We keep in touch through letters to our special donor family. We always will.
Valasia is familiar with the life-saving benefits that transplantation makes to people's lives. Her youngest daughter, Stephania, was put on the liver transplant waiting list when she was one year old, waiting 20 months before a liver became available.
"As a little girl Stephania was in and out of hospital and was not able to walk, play or laugh like other children. This was difficult to watch and all we wanted was for our little girl to be able to lead a normal life like other children.
"I find it difficult to put into words what it is like being on the transplant waiting list, waiting for the telephone call that would transform Stephania's life. This experience was not something that only affected Stephania; it affected our whole family.
"It was at midnight that we finally received the call. Nothing can prepare you for the call, and as we drove to the hospital we experienced mixed emotions. Crying tears of absolute joy for Stephania who was finally getting a new liver, and tears of grief for someone else's family who had just lost their loved one.
"Today Stephania is thriving and is a perfect example of what organ donation can do. Receiving a liver transplant has transformed her life and we know this is due to the generous act of the donor family who agreed to donate life in a traumatic time.
"I speak as a Greek Orthodox and while I can't speak for everyone, I urge you to help educate our children and communities about organ and tissue donation. Please talk to your loved ones about your donation decision so that more Australian lives, like Stephania's, can be transformed through organ and tissue donation. It's time that people understand that religion is not a barrier to becoming an organ and tissue donor".
The phone rang at 9.35 am to notify my wife Marilyn that a kidney had become available and that it had been allocated to her. It gave her the gift of life.
Marilyn had been waiting for over five years for an organ to become available, along with other Australians who watch as the list continues to grow.
Twelve months have passed and with the help of the wonderful medical team supporting her, she is doing great. She now lives a normal life and has so many happy moments to look forward to.
Lives were saved from that one donor and the family that chose to save lives in the memory of their loved one.
The good news is, Marilyn is doing remarkably well.
If we can play a part in spreading the word on how important it is to DONATE LIFE, then we have played our part.
We will continue to provide information and support anyone who needs questions answered.
It is truly a remarkable gift to save a life.
Thank you to the transplant staff for the great job they do, along with the different organisations and other medical teams that support organ and tissue donation.