ORGAN DONATION STORIES & EXPERIENCES

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RECIPIENT STORIES

BECOMING FIT & WELL AGAIN

Peter Chwal, 29 June 2015

I received the phone call that would save my life at 2am on 19 February 2013 – 15 months after I was listed on the transplant list. It’s impossible to describe the roller coaster of emotions that phone call triggered but at the top of the kaleidoscope was a mixture of relief and immense gratitude to the donor and their family. Thanks to them my daughters would have a father and my wife a husband.

Whilst everyone’s experience after surgery differs mine was remarkable. I was stunned at how rapidly I became fit and well again. Within 3 months I had completed a 4km fun run event and by 6 months I did a 40km mountain biking event. A 4km run is now just a stroll in the park and a 40km mountain bike ride is a relaxing Sunday morning.

My transplant journey opened my eyes to the complex issues surrounding organ donation, such as how few people will actually pass away in a manner suitable to become a donor and how the right hospital processes and training are imperative to achieve good organ donation rates. Those waiting on the transplant list can’t just decide to choose ‘a quicker private health system’ making it incredibly important that Australia achieves worlds best donation practices as soon as possible and to match our excellent transplantation success.

You can follow Peter on Twitter and Facebook.

A GRACIOUS GIFT

Will Chapman, 7 September 2014

For almost 2 years I’ve been living a quality of life that I didn’t know existed. I was unable to move without the support of intravenous medications, mechanical pumps or oxygen. My independence was completely stripped and my chances of survival weren’t great. Amazingly, I was lucky enough to receive a lifesaving heart and lung transplant in early October 2012 thanks to my amazing donor family and the expertise of my physicians and surgeons. Of course, transplantation is impossible without our selfless donor families. And for this reason all recipients are eternally grateful for their gracious gifts.

I now work, study and do the things that I love. I run, cycle, swim, play competitive sports and do things that were previously unimaginable. The first time I wore oxygen since my operation was when I went skydiving. And it wasn’t because of my medical history. It was because I was jumping from 5km over the New Zealand Alps and the entire crew wore it too – talk about breathlessness.

The capabilities of transplantation are undoubtedly amazing. But unfortunately not everyone experiences that amazingness. The current donor rate in Australia means people never get to experience the quality of life that I’ve experienced. It also means that a lot of the potential recipients suffer for longer and if they are lucky enough to receive a transplant, they have less chance of surviving the operation. The most devastating thing is that Australia still hasn’t implemented a proven solution that would place us amongst the world leaders for organ donation and transplantation.
You can find Will on Twitter and Facebook.

WAITING FOR AN ORGAN DONATION

WAITING TO LIVE

Kerri Cargill, 27 June 2013

Kerri Cargill is a registered nurse and is used to caring for others, in fact it’s what she loves to do. This month Kerri is marking one year since she began a leave of absence from work and seven months on the organ transplant waiting list. In this article she writes of the harsh realities and of the golden moments that punctuate her wait.

I wrote this in the early hours of morning when sleep would not come. It is not a unique story, nor earth shattering in any way.  It is not always grammatically correct! It is just a summary of my experiences over the past year. I have decided to share this with ShareLife Australia and my friends in the hope it will encourage you to discuss organ donation with your family and friends.

June 14 was one year to the day that I had to leave work. It was a day of sadness and tears when I realised I was no longer well enough to be at work. At first I told my boss I would “just be off for a couple of days”. Then I told her I needed a few weeks … a few months … and now it has been a whole year!  When, or if ever, I will be well enough to return to my grad program job and the profession I love is a question no one can answer for me – it is in God’s hands!

Leaving work was tough. I had a job that I had worked hard over many years to establish and was totally committed to.  It sounds uncool and oh so cliched but I often told family and friends that I was in the job I was born to do – I loved it that much!  A lot of my personal and professional identity – who I was – was defined by my job.  To leave my professional role, therefore hurt a lot. For months I dreamt most nights of being back at work and would wake up crying when I realised this was impossible.  It took me seven months to stop buying work clothes!  Occasionally I would visit my workplace to say hi to colleagues, who were always very happy to see me, however that also filled me with sadness and an overwhelming anxiety as I would inevitably wonder if I would ever return.

The sense of shock, loss and chaos that follows sudden, irreversible deterioration of a long term condition is immense. My congenital heart condition & pulmonary hypertension had been stable for nearly ten years. I knew things may go wrong someday but had always hoped it wouldn’t happen to me. Plus someday may never come … Or so I thought!  Anyway, within four months of becoming unwell, a few hospitalizations, quite a few scares I was now attached to oxygen 18 hours a day. I was urgently referred to the heart/lung transplant unit at Sydney’s St Vincent’s hospital.  It seems I needed a double lung/heart transplant to survive.  Without one, my cardiologist gave me 12 to 18 months to live.

Referral to a transplant unit is both a relief and a huge scare. Meeting the team for the first time is an ‘event’ – a nerve racking event. That’s only the very beginning as the work up for transplant list is exhausting and all consuming.  I travelled to Sydney every week for six weeks for one or two days of medical tests.  When I wasn’t in Sydney I was attending medical appointments at home.  With every test, appointment or intervention, we held our breath hoping for ‘normal’ findings and worried that I would not ‘pass’ that stage of work-up.

Thankfully I got through all the assessments with no surprises. The final stage of transplant work-up is a meeting with the surgeons. This is BIG as they have the final say as to whether you are listed. This is because surgeons must be confident they can technically do the transplant. It makes sense – if they can’t match your unique anatomy with a donor’s organs – transplantation is impossible.   The sense of relief & evaporation of anxiety when you ‘make’ the list is enormous & we celebrated!

And then the waiting begins …

Of course, every cloud has a silver lining and it turns out that my lining is in fact golden. Golden because I am blessed with extraordinary family and friends who have been there to love, care & support through the tears and laughter, fear and hope.

My family’s incredible strength, love and wisdom has enveloped me every single minute of every day. They are steadfast in their focus of getting me to transplant day as healthy as possible.  They are my anchor when things get tough and my compass when I feel lost. No matter what happens they are resilient and positive.  My two young nieces take all the ‘medical stuff’ in their stride and treat me just the same as before – I love that! They never miss an opportunity to tease and make me laugh. Our extended family and close family friends have also provided fantastic support and will do anything – absolutely anything – to help out.

And friends – fabulous, kind, generous friends who regularly keep in touch and show they care. Real friends who are never “too busy” to call or visit or even just text.  Their spirit of generosity, care and love makes a difference – a huge difference – to my wellbeing.  When I am too sick to go out they come, sit by my bed and share stories and laughter. It is because of these wonderful friends I still feel like I belong somewhere, can still make meaningful contributions to their lives, that I am of value and can retain a sense of being the real Kerri – not just the girl waiting for a heart/lung transplant.

And sometimes my colleagues or even complete strangers have made me smile. So often it is the little acts of kindness that can lift spirits – never, ever underestimate the impact of being kind!

I am not alone! There are thousands of Australians on the organ transplant waiting list right now.  Sadly, our organ donation rate is not world’s best – nowhere near it.  I have been on the waiting list nearly seven months and have been told to prepare for a long wait … maybe a year or more.

I think about everyone on the waiting list often and wonder if they (like me) sometimes question “Am I waiting to live or am I waiting to die?” because that’s what it feels like.  At times I feel so desperate for the phone to ring & hear the transplant coordinator’s voice.  At other times I am overwhelmed with gratitude that I have a chance at a second chance. I am so aware that not everyone gets this amazing opportunity.

However, I am mostly VERY optimistic that I will get new heart/lungs and I often day dream about what my life will be like when I am healthy & can breathe easily!  It’s going to be fantastic!  As my friend, Will Chapman says  “… any day now.”

So while I wait and milestones like this pass, I am filled with gratitude for the golden lining to my little cloud … family, friends, love, kindness, laughter, resilience and hope for the future … the very essence of life. Xx

Kerri received a successful double lung and heart transplant in January 2014.

THE FAMILY OF A RECIPIENT

STRANGERS ON A SHARED ROAD

Julie Chapman, 24 December 2012

In this story, the mother of organ donation recipient, Will Chapman, writes about her family’s experience and their gratitude to a family they do not know.

My name is Julie Chapman. I feel we have been blessed, as successful organ donation and transplantation has allowed us to finally move home to paradise, where we will celebrate Christmas, and a future, together.  For many agonising months I had to quell insatiable fear, fuelled by the very real possibility my 20 year old son, Will could die waiting. We desperately tried to remain positive despite being told by numerous specialists candidacy would be tough as Will needed multiple organs and a donor shortage existed.

Words expressing the roller coaster of emotions are inadequate. Now is not the time. As I write I weep, a year’s stored tears shed not for us but for a boy who won’t spend Christmas with his family ever again. Whoever Will’s donor family is, I hope you find some consolation your son’s heart beats strong in Will’s chest, his lungs give Will life sustaining breath. Not a sign of rejection. It’s a miracle. At times I wonder how many other lives you saved… Bless you and your family.

Will continues to fight for national reform in tribute to his donor. This boy saved Will’s life. If not for his family, my family would have been drowning in a similar black abyss this Christmas. You saved us from a lifetime of despair. You saved our son. Thank you.

Collectively, donor families have saved thousands of families all over Australia. The reality is generous donor families are grieving this Christmas. I hope the knowledge their decision prevented other families from burying loved ones gives some comfort.

These people are the true heroes of organ donation and transplantation.

Will began a campaign in June, launching his “A Gracious Gift” video on YouTube, believing the answer to the donor crisis was increased awareness. Since then we have experienced harsh enlightenment.

In August Will was transported by ambulance from St Vincent’s Hospital to RPA to sit on a SAV’D panel with transplant specialists, a beautiful donor family representative and a grateful liver recipient. Representatives of the Australian Organ and Tissue Authority and Donate Life were present. That night Will chose to launch the advertisement, its creation and network distribution further proof Australia wants a solution. Please take the time to read the open letter from Mat Baxter on Mumbrella. William passionately described the harsh message was not aimed at you, the Australian public, but at those who control and defend a failing organ donation system. I quote Will, “anything other than world’s best practice is unacceptable. I’m sure we can all agree on that.”

Other tragic victims of this less than adequate system are some individuals who in the past refused consent. The fact we have such a substantial refusal rate in Australia indicates something terribly wrong is occurring, or not occurring, when the time comes when there is a rare organ donation opportunity. Failure within the hospital system at this pivotal time is responsible for some families becoming innocent victims of regret in latter years. I hope this Christmas you too will find peace.

Did Will do all this for self interest or altruism? This question has been posed to Will. The answer is evident. Will, having received his gracious gift, has been advised by many to step back, smell the roses and focus on his rehabilitation, to heal physically and emotionally. For the sake of humanity he can’t. He knows too much to condone the status quo. He understands not all people in end stage organ failure can be saved, but he knows a proven solution was given to the Federal Government in 2008 and it has not been implemented expediently, resulting in devastating human suffering and death, some of these our friends.

Last month a record number of donor families gave their consent to organ donation and transplantation, 45 donors. Whether this substantial increase resulted from increased identification of potential donors or an increased consent rate is not known. Perhaps Will’s courageous endeavours initiated discussion. Life and death are the only constants in this life yet death is a subject rarely discussed.

I’d like to sincerely thank the physicians, lead by the humane Professor Allan Glanville and the entire surgical team whose professionalism and expertise saved William’s life. We are also indebted to the registrars and interns, our doctors of the future, the dedicated and compassionate cardio thoracic nurses on Level 10, the specialist transplant triage nurses and educators, the social workers, the pastoral care, the ward staff, the cleaners and the smiling faces on the front desk; I am eternally grateful to you all. And special thanks to a person I’ll never know, the donor coordinator who gained consent from William’s donor family in their darkest hour. May you all enjoy Christmas and the privilege of a happy, healthy 2013.

In time I will share our family’s journey through a mother’s eyes, and as you read I hope you too, will gain more understanding of the facts, and when the time comes, stand alongside us and say, enough.

This Christmas be reminded of love and giving, intrinsic in our donor families.

A DONOR FAMILY

DONATING BEN’S ORGANS

Graham Harrison

Donor dad, Graham Harrison lost his son, Ben when he was only ten years old. The family decided to donate Ben’s organs and Ben saved several lives.