This is DonateLife week. As an organ donation recipient, someone who has literally received the gift of life, I thought I would diverge from the law in this column and write about a topic which is important to me and many others.
Two years ago my wife, Melanie, donated a kidney to me because I had end stage renal disease – the result of an an inherited condition called polycystic kidney disease. I wrote at the time of my experience, gratitude to the South Australian Renal Unit’s exceptional team and to raise awareness about donation. Now, with the transplant a success, I thought I would write again.
Our Renal Unit is a national leader, performing the first organ transplant (which was from a live donor) in 1965. Last Sunday some of those doctors at the unit presented a session on live organ donorship. In the audience were many donors, often with their live organ recipients. Without live organ donation, a person with end stage renal disease must go onto dialysis in order to make the waiting list for dead organ donation, because there are not enough live donors prepared to sign up. So the gift is extraordinary in every sense.
Life on dialysis is not good. While it has the capacity to keep you alive for a time, it is intrusive, disruptive and barely masks a range of other problems. By the stage a sufferer reaches dialysis their health has declined substantially and may never return to what is was, even with a new organ. (Dead organ donorship, while highly successful, is not as successful as live donation.) Finally, there is the loss of quality of life and possible inability to work to support yourself while on dialysis and, if you have dependents, support your family. Dialysis buys you time, but eventually you will waste away without another kidney.
Living with a slow onset kidney disease, as I did, is a bit like being the frog who sits in a pot that slowly comes to the boil. You don’t realise just how sick you are, at least until kidney health returns, and the effect is pretty dramatic. The return of energy and vitality is immediate. The kidney cleans the blood, and when it’s not working there is a build up of protein. In my case, quite literally as soon as my wife’s kidney was grafted in surgery it started working. Within an hour the level of protein, known as creatinine, had substantially reduced. I now have completely normal levels, as has my wife.
Although being a donor is no small thing, long-term health effects for donors are negligible. In short, a person only needs one kidney for kidney health. The studies actually show donors live a bit longer than their non-donor equivalents for some reason. More to the point, you can live life with one kidney just fine.
People ordinarily donate a kidney when a family member is impacted, but it need not be the case. I read recently of an altruistic donor who decided, with an organ to spare, she would donate to a perfect stranger. There may be truth to what the Talmud says: “He who saves one life, saves the world entire.” It is a truly amazing gesture; live donors are courageous, selfless, extraordinary people who restore belief in humanity.
When it came to my wife there was never a moment of doubt. From the outset, even before we knew we shared a blood type, she wanted to donate. In her eyes, if we were not a match we could participate in a donor chain.
Frankly, I never shared her optimism, but beyond my imagining she was a match and could donate directly to me. It added new meaning to meeting the right person in life! She, like other donors, acted entirely selflessly in an act of love. To this day I find it difficult to find the right words to express my gratitude.
… others wait on the gift of life as you read this, often with the clock ticking toward death.
All of this is only made possible by the Renal Transplant Unit. At a time where health services everywhere are under pressure, the unit shines like a beacon of excellence. Its personnel, including Professors Graeme Russ and Toby Coates, and my treating physician Phil Clayton, amongs others, provide nothing short of a world-class service, as do surgeons Christine Russell and Santosh Olakkengil. The nurses are dedicated, highly skilled and wonderfully compassionate. The unit is a class act.
I was struck by a peculiar feeling while I recovered from surgery: it dawned on me that, while I’d imagined my life would be an abbreviated one due to my illness, in fact a new, unexpected chapter had been opened in life’s book.
Melanie and I, both a bit sore around the middle and with our children at school, sat for weeks reflecting on how unpredictable and wonderful life could be. Two years later and that wonder has not left, but my thoughts turn to others who find themselves dealt a genetically-inherited mess like mine, and how I might encourage others to an act of altruism such as I received, enabling the precious life I knew to continue on.
It is natural for both donors and recipients to be afraid. I was terrified. Yet Melanie, incredibly, was discharged from hospital after only 48 hours, myself after five days. And we have never looked back. Life returned to normality after a month, and Mel told me that after three weeks she did not feel like she’d had the surgery.
South Australia leads the country with our organ donor rates. However, as a nation we lag well behind many others. Globally, Croatia and Spain lead, while Australia sits in 20th place. Further, while other countries have gone up the rankings we have remained stubbornly at a similar level for quite some time. In our defence, the rates elsewhere are based lately on dead donor organs. Australia does much better on the live donor front. All that said, it is timely to talk about our society’s attitudes toward organ donation.
While I have concentrated here on live donorship, the majority of organs donated come from people who will not survive a trauma. It is, of course, a horrendous decision to make in horrendous circumstances, as Nat Cook MP who spoke on Sunday can attest, but it is a situation where out of tragedy can come life. There is no point not donating an organ that can give another person life. All of us ought to be prepared to be donors when we die. Its benefits are so great they ought to outweigh other considerations.
Organ donation is a tough subject. As a live donor recipient I often thought I would just accept the reality of dialysis rather than ask someone for an organ. In my case I never had to, because someone very dear offered. I never countenanced what ultimately happened to me. I am incredibly lucky.
But others wait on the gift of life as you read this, often with the clock ticking toward death. In the case of kidneys, I figure we were given two so one could be given away.
Think about it. It might be the best gift you ever make. In fact, humanity’s ultimate gift – the gift of life.
If you would like to find out more visit donatelife.gov.au and sharelife.org.au
Morry Bailes is the managing partner at Tindall Gask Bentley Lawyers, president-elect of the Law Council of Australia and is a past president of the Law Society of SA. He is a regular commentator on legal issues for InDaily.
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