Reporter witnesses the true gift of life

[okarol]

19 August 2008
Reporter witnesses the true gift of life

Two months ago Western Daily Press reporter Polly March experienced the wonders and worries of 'live' kidney donation when her mother gave a kidney to her father. Here, she writes about how an unselfish act of kindness can turn a family's life around.

If you look at it in black and white, my mother saved my father's life. Having watched her husband Peter battle kidney disease for ten years, she opted to undergo major surgery so they can look forward to the possibility of a future where they grow even older together.

People ask why my two brothers or I couldn't offer our ailing Dad the same vital "gift of life", but Polycystic Kidney Disease (PKD) is genetic, so one or all three of us stand a 50pc chance of developing it.

PKD is where cysts cover both kidneys which then often spread to the liver and pancreas. Over time, the cysts grow and multiply, replacing normal healthy tissue and causing the kidneys to lose their function.

The disease is incurable and leads to high blood pressure and also can damage the heart and brain. It is probably what killed my dad's dad as he played cricket at the age of 49.

So if you ask me, my brothers and my parents' many friends, there is no question that my mother Caty is a hero, brave beyond belief. But, after 39 years of marriage, she doesn't quite see it that way.

She told me that what many view as a difficult dilemma was actually the most simple decision of her life. Dad had two failing kidneys, she only needed one working one, job done.

She told me: "Friends' first reaction was usually a mixture of shock and what a great thing you are doing, how brave you are and how extraordinary that you are a match.

"For me, it felt like none of those things. I don't remember the conversation or even thought processes about how we decided I should put myself forward for donation – it was automatic."

The question of being a "perfect match" is one of the many myths surrounding live kidney donation and when I told other people Mum was donating to Dad, they looked at me in wonder, as if it was some kind of miracle, or in horror, as if they were actually brother and sister.

In fact, donors and recipients generally only have to be blood group compatible. They should ideally share as many of six tissue types as possible as this decreases the risk of rejection and the need for another transplant. But while Dad was in hospital, we met another recipient whose donor only matched one of his tissue types.

Before the transplant, we worried about Dad constantly. He got progressively sicker and tired and unable to participate in many of the things we love to do together.

So while the thought of both parents going under the knife on the same day was terrifying, it was also the best chance we as a family had of getting our dad, granddad and husband back and seeing him enjoy life as he should.

About three years ago consultants at Guy's told us that his best chance of survival was a transplant from a living donor. The risk of disease ruled us three children out and very soon Mum became the most likely candidate.

Although blood relatives are usually excellent matches and unrelated donors, such as spouses and close friends, are unlikely to match as well, in all except the "perfectly matched" situations, the success rates of these transplants are equal to those of related donors.

There is also evidence to suggest living donors enjoy longer-than-average lives. Consultants always try to push for live donation over donation from cadavers where possible because the survival rate is so much better.

The latest UK figures show that 92pc of kidneys that come from dead donors will still be working after one year and 81pc after five years. But for kidneys from living donors, that figure shoots up to 95pc after one year and 88pc after five years.

Myths also surround the operation itself – that it is a highly-risky procedure with an agonising recovery. Actually, there is just a one in 3,000 risk of the donor dying, it is mostly done by keyhole surgery, and two months down the line my parents are driving, walking, entertaining and even, in my mum's case, swimming and going to work.

Before the operation they both underwent several vigorous "health MOTs" to ensure that Mum's body was fit enough to cope with the operation.

But it wasn't until my father's kidney function deteriorated rapidly, dropping to just 10pc, that the operation became a thing of urgency. This is because once a patient is on dialysis their health declines more drastically, their body is put under enormous pressure and they become dependent on a machine.

Perhaps their strangest experience was meeting with the Human Tissue Authority to prove they were a genuine married couple and my mother had not been coerced into the operation.

She said: "Our interview felt a bit like applying for a Green Card, except it was held in the foetal ward at another hospital. I had to take evidence of our relationship including photos of ourselves together."

Our lowest point was just a fortnight before the op when we thought it might be cancelled. Dad suddenly developed a high level of antibodies in his blood and Mum an infection but then we got the green light at the hospital just the day before.

And it wasn't until I kissed them goodbye that night that it seemed real and I don't think any of us slept a wink.

Despite the encouraging statistics and the expertise of the highly skilled medical team, families going through such a huge procedure will always worry.

But the army of fantastically kind and knowledgeable medical staff were meticulous, wonderful and vital, repeatedly reminding us this was a normal procedure with fewer risks than having your appendix out.

As Mum and Dad quickly recovered, we relaxed and began to look around the ward at the other patients. For Dad at 71, this has been an emotional process.

His chances of getting a kidney off the transplant register were not great at his age and going onto dialysis would have signalled the start of a rapid decline.

But it wasn't until we saw the 30-something mothers and fathers who were on their second or third transplant, or beginning to suffer organ rejection, that we realised just how lucky we are and how truly vital the "gift of life" is.

Dad is tip-toeing towards the end of the crucial three-month assessment stage now and has just been told his tri-weekly hospital visits can go down to one. However, he must take a cocktail of anti-rejection drugs for the rest of his life.

Looking at him even immediately after the operation, the improvement was visibly obvious – he looked ten years younger and healthy.

He said: "Before I had the op I had a creatinin level – the level of toxins in my blood – of 400. Now it is just 105, five above what the doctors want.

"People said I looked a much healthier colour immediately and now my energy levels are much improved. One of the nicest things is I can enjoy food now, when before it just tasted of chemicals."

Dad can't really sum up how he feels about what Mum has done in words but he did give it a try: "Going into hospital made me realise just what a gift it was. Other people were so poorly with complications or rejections.

"Fingers crossed I will not suffer a rejection episode. Two months ago I was facing dialysis and a grim future, now I'm hoping this kidney will see me out."

The giving of a part of oneself for the benefit of another has to be one of the most selfless and wonderful acts of human nature. As a family, we will forever be grateful for what Mum gave Dad, even if she doesn't think what she did was that amazing.

My deepest wish is that more people do consider being a donor so that theirs or other people's loved ones get to enjoy that second shot at life.

To join the organ donor register to save lives after your death or to find out more about becoming a living donor visit www.uktransplant.org.uk or phone 0845 60 60 400.

http://www.holdthefrontpage.co.uk/news/080819kidney.shtml