Organ transplant: Have one on me, mate

5 December 2007 16:53

Organ transplant: Have one on me, mate

Andy Williamson faced years on dialysis. Then his friend and fellow band member made an offer he couldn't refuse: one of his own kidneys.

Rob Sharp reports
Published: 04 December 2007

If you had, perchance, wandered down to London Bridge last week, you might have heard a peculiar sound wafting around the area's medieval lanes. The Organ Grinders, an off-beat, slightly eccentric jazz-funk outfit of brass, guitars, Hammond organ and drums, was playing a tight, one-off set at The Clink, a musty onetime prison- turned-museum. And if you had strolled inside, you may have seen the band burst into one of its concluding numbers, "Live Life Then Give Life", a bizarre title for serious musicians, but with an important message: to promote living kidney donation.

Earlier this year, the band's saxophonist, Andy Williamson, underwent a kidney transplant, and the organ had been donated by the band's keyboard player. The concert's aim was to raise awareness of transplantation. This could all have seemed rather too earnest, if it were not for the stench of stagnant water and the waxworks of prisoners in stocks.

Andy Williamson, 39, and his university friend Maff Potts, 35, are great friends; it shows through their mutual affection. Recently they became even closer. Williamson's transplant took place in August, in the wake of changes to the Human Tissue Act, which allows anyone to donate to anyone else (previously it was just family and close friends). As Williamson and Potts are musicians, they decided to form a band to promote the issues, which they have also done via their website, www.haveoneofmine.com. Their profile has since spiralled, and the gig at The Clink was the official launch of "Live Life Then Give Life", which has been released as a single.

Their story starts in late 2005. Williamson, a musician and promoter, started noticing his energy was flagging, and his sense of taste changed. These are two symptoms of failing kidneys. Williamson knew that his mother had been diagnosed with polycystic kidney disease many years earlier and had needed a transplant, and that this was an inherited disease with which he, too, had been diagnosed. After a medical check-up, he was taken into hospital soon after for tests, and was then put under observation. His kidneys were breaking down. He was put on dialysis three times a week for four hours a day at Guy's Hospital.

Williamson says: "Because I wanted to keep gigging in the evenings, and because you need to book venues for this, I would go to the hospital during the day. That's when all the really old, really sick people go. I was on dialysis surrounded by people who were amputees. I felt like I was in St Peter's waiting-room. I thought, 'If this is the rest of my life, I'm not happy about it'."

He went online, thinking that there might be people in a similar situation, and stumbled across www.kidneypatientguide.org.uk. He soon realised that there was an active community of people trying to "get on with life" while holding down careers. "I thought, 'I'm going to find a way of living with this and making it OK, rather than it defining my life'," he continues.

After a two-month stint on "haemodialysis", he moved to "peritoneal" dialysis. The first involves blood circulating through the body and being cleaned in an external "artificial kidney" machine with a filter; the second allows the peritoneal membrane (the internal semi-permeable membrane "holding" all of our organs together) to act as a filter.

This latter process either takes place during an overnight session in which the dialysis fluid is replaced, or during four sessions during the day, employing more transportable fluid bags. It is a relatively convenient process, although ultimately damaging. These bags, Williamson could carry around with him; cue amusing snaps of him on stage at gigs with his fluid hanging nearby. "We did a Hallowe'en gig – we all had spooky makeup on, and everyone thought it was part of the costume!" he laughs. Potts adds: "I was following him to a gig once, and when I pulled up alongside him to ask for directions, I saw that he had been driving with a fluid bag hooked up to the central mirror!" (Indeed, the pair even gigged together in Guy's shortly after their operation – the results can be seen on YouTube).

It was at this point in his life that Potts, who was at Oxford University with Williamson, realised the gravity of his friend's situation. "News got round. We'd been playing in bands since we were 18," he says. "We'd always played together; our best friends have always been the people we play with. So the dialysis machines came as a bit of a shock. But it was more to do with the kind of guy Andy is. Seeing someone who is a music promoter, from whom you're used to getting phone calls from all over the world, confined to a bed for dialysis the whole time... I came away slightly panicky. Like, that's it for Andy."

The pair discussed the idea of a transplant – at the time, Williamson's sister was being tested as a living donor. However, she discovered that while she hadn't inherited the condition from their mother, her GFR number (Glomerular Filtration Rate, a measure of kidney function that operates like a percentage, 100 being perfect health) was 85; just one point below what was acceptable for a transplant. The criteria for a transplant are extremely strict; namely, the emphasis is on the fact that the transplant should have absolutely no repercussions on that person's long-term health. In fact, kidney donors live slightly longer, on average, than the rest of us, perhaps because of this rigorous selection process.

Next, Potts was thoroughly tested. "I am the most tested man in Britain; every scan, every test they could have done– they checked everything," he says. "Every month I had another set of tests. So, another added bonus of this is that I now have on my medical records a complete set of dog's-bollocks tests on everything; a complete MOT. When my wife nags me about cholesterol now, I say, no, I'm fine, I'm A1 fit."

He stresses again that it's all about it being as near to zero risk as possible. Additionally, during the run-up to the operation, the donor and the donee's medical teams are kept completely separate; ideally, there should not be a hint that one can influence the other's decision to go through with the procedure.

Potts adds: "The NHS has a reputation for being this monolithic organisation, but it was all terribly personal. They said, if at any stage you would like to pull out, we won't tell Andy that's the reason. They said that they would tell him that one of the tests was not good. So our friendship would not be damaged." Although Potts did come under pressure from members of family and friends not to go through with the operation, after being convinced that there was no risk to his health, and after his wife was given a reassuring session with the medics, he went through with the procedure.

Potts had his transplant in August, and now looks in fine fettle. He took one month off his job as a Civil Servant – they recommended that he take three months off, but he didn't need it. He emphasises the "98 per cent success rate" of the procedure.

In hospital, the pair even lay side by side in their beds after the operation and played Scrabble. "In both games, he used all his seven letters, but I don't want to go into it," laughs Potts. "I give him my kidney and he wipes the floor with me in Scrabble!"

Williamson adds that people do still exploit others' needs: he was approached by some people on the web asking if he wanted to buy their kidneys. As that is illegal, he reported them to the police. He sees some sort of compromise as a solution to those seeking to do this: "Something that would be the equivalent of maternity pay, given by the state, where someone who wants to be a donor could have some kind of financial compensation. The best idea I've heard is, because you are saving the state money in terms of the search for a kidney donor, that would be recognised through the tax system."

Recent statistics show that if all of the 7,000-10,000 people who are on the waiting list for organs had a transplant, it would save the NHS around £150m a year. As it is, only half of these 7,000 or so people get a transplant because they cannot get hold of an organ, either dead or alive (live organs have a much better shelf life). Indeed, of the 90 per cent of people who think that donation is a good idea when polled, only 20 per cent carry the operation through. "There's laziness," says Potts. "But then laziness doesn't often cost lives."

While the Organ Grinders' music might be all in the performance, the friendship between some of its members, thankfully, is movingly real.

http://news.independent.co.uk/health/article3220933.ece