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Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on August 10, 2009, 01:21:53 PM
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Brotherly love
When Alan Wheeler needed a kidney, his brother Greg donated one of his. But to get the operation done, they had to travel to Germany - and pay €37,000 - writes Arminta Wallace
MOST OF US would think long and hard before giving away one of our major organs - even to someone we love. But for Greg Wheeler it was, as he puts it himself, "a no-brainer". He phoned his brother Alan and said, "I believe you need a kidney? Well, I have two of them: you can have one." As it turned out, however, that was the beginning - rather than the end - of the story.
The Wheelers are identical twins. Greg is a director of television commercials; Alan, who lives in Belfast, is an interior designer. In the spring of 2008 they presented themselves at Belfast City Hospital, which - like Beaumont Hospital in Dublin - has a "living donor" programme for kidney transplants. "We watched the DVD they sent us, which is called The Gift of Life," says Greg. "It describes how best practice is to get a transplant before the recipient goes on to dialysis, because the outcome - and the lifespan afterwards - is enhanced. So we said, 'Great. When can we do it?' "
Almost 12 months later, despite a barrage of tests which showed that Greg was the ideal donor, the families still hadn't been given a definite date for a transplant. Meanwhile, Alan Wheeler's health was steadily deteriorating, to the point where his doctor was keen for him to start on dialysis. He was equally determined not to. His twin was ready to donate a kidney, they were a perfect match, what was the problem? Greg's wife Lucienne, who attended all the meetings in Belfast with him, offers an explanation. "I think the problem is resources," she says. "There are lots of people on dialysis, waiting for a donor to have their operation. And everybody has to get in the queue."
As operated in Ireland, this system is supposed to establish an even playing field. It's also intended to prevent potential donors from being coerced into providing organs, or even selling them - a scenario familiar to most of us only from fiction or film. In real life, organs for transplant are in short supply, which means that for most people who need a kidney, a suitable donor is almost an impossible dream. Of the 136 renal transplants carried out in Ireland in 2008, just 10 came from living donors.
After almost 12 months of anxiety and stress there was, as Lucienne Wheeler puts it, "no light at the end of the tunnel. At the hospital in Belfast they just kept saying 'maybe next year'." The Wheelers decided to investigate some alternative options. "I phoned the Mayo Clinic," says Alan Wheeler, "and they said, 'Yeah, sure. We can do that. That will be half a million dollars.' So I said, 'Well, no, thanks.' "
Their next stop was a website called European Medical Tourist, an agency which sets up all kinds of procedures, from weight-loss and cosmetic surgery to heart transplants and dentistry, from the treatment of spinal-cord injuries to adult self-donated stem-cell therapies.
"I spoke to a guy who said the best place for kidney transplants was Germany or Mumbai in India," Wheeler says. "I badgered him into giving me the information as to the whereabouts in Germany, and eventually he did. Then we just got on a flight to Frankfurt and blagged our way into the hospital."
Almost immediately they got to speak to the second-in-command in the kidney unit; within hours they were standing at the bedside of a patient who had just had a transplant, chatting to him and his wife - who had donated the organ - about the ins and outs of the operation.
"It's a massive university teaching hospital - like St Vincent's, but on a massive scale - so we expected it to be incredibly formal and incredibly difficult to get to meet the relevant people," says Lucienne. In truth, the opposite was the case. Once they decided to go ahead with a kidney transplant on a private basis, the Wheelers were given a date straightaway.
Even more impressive, they recall, was the speed with which routine tests and checks were carried out. Tests which had been two or even three months apart in Belfast - what's known as the "work-up" to a major transplant operation - were done in Frankfurt in a single week.
The transplant was performed at the end of January. "At one point they had done an ultrasound scan of me," says Greg, "and there was something they weren't happy about, so they wanted to give me an MRI scan. The head of that department said, 'OK, I'll get that organised.' I said, 'How long is this going to take?' She said, 'Oh - it'll be 30 minutes.' "
It seems bizarre to be talking about organ transplants in Greg and Lucienne's graceful home in Killiney, with two Burmese cats squabbling over pole position on the sofa and a tranquil seascape gleaming in through the windows. The story of their experiences at the Wolfgang Amadeus Goethe hospital - or, to give it its full title, the Klinikum und Fachbereich Medizin Johann Wolfgang Goethe-Universität, Frankfurt-am-Main - sounds like something out of Star Trek. Effortless access to top specialists, daily meetings with the entire care team, instant scans and all the rest of it.
A scant three months after the transplant, Greg Wheeler is sitting on his sofa, a bit stiff but otherwise in excellent health, having just come back from a trip to the Far East and Australia. His brother Alan is also gradually recovering his equilibrium - which took a little longer.
"When you've been chronically ill for some time, psychologically it's difficult to come to terms with the fact that you're better," Lucienne says. Now Alan calls his new kidney "the kid", and calls to give Greg regular updates on its, and his, progress.
Greg, meanwhile, lifts up his shirt to show off the remarkably neat scar from his "Frankfurter slice" - "brilliant bit of stitching as well, isn't it?" - and recalls the fun that he and his brother managed to have during the whole process. Herr Veeler, it quickly became clear to the German medical team, was as much prankster as donor. "It was the first time Alan and I had shared a room for 45 years," he says. "At one stage I asked the doctors, 'After the transplant, will Alan be able to ski?' And they went into this big talk about some professional footballer that they'd done, and how he now plays in the Bundesliga, and they said, 'Yes, yes, he'll be able to ski.' And I said, 'Well, that's fantastic because he has never skied before.' "
Nevertheless, both Greg and Lucienne - especially the latter - were acutely aware of the dangers involved. They met one transplant patient during their time in Frankfurt - a young, fit-looking man in his 40s - who died after his operation. In their own case there were complications when, in the midst of the preparatory work-up, Alan had to have a pair of cancerous polyps removed from his colon. And Greg's operation to have his kidney removed began badly when the medical team had difficulty with his epidural, causing him to faint from the pain.
"I think, having decided to go ahead with the operation, Greg didn't want to think about the risks, or even discuss them," says Lucienne. "Well, you can't," Greg chips in. From his wife's perspective, however, it wasn't quite so simple. "I absolutely supported his offer of a kidney to Alan, but I was also conscious that he could have died," she says. "And you have to ask yourself, how would I react to that? How would I feel about his brother walking around alive and him dead, having given up his life? Obviously these things occur to you, and it is hugely stressful."
She's adamant, however, that the delays and indecision of the system they encountered at Belfast City Hospital simply ratcheted up the stress levels. "Obviously you feel terrible for people who are on dialysis and who have to wait until somebody who has been kind enough to carry a donor card meets their end," she says. "But the not knowing - for nearly a year - was really distressing to all of our family. To have that hanging over us for so long was dreadful. You also have to ask what's the most cost-efficient way of delivering these services to people who need them - and the most cost-efficient way of dealing with a living donor situation is to do the operation straight away, because the cost to the NHS of maintaining somebody on dialysis is crippling."
The Wheelers paid €37,000 to the hospital in Frankfurt, a fee which covered the transplant, all preparatory tests, aftercare and hospital stay. "It occurred to us," says Greg, "that people might be sitting there waiting for a transplant because they think the cost of doing it privately is off the end of the scale - and really, it's not. If a whole extended family got together they could certainly come up with that sort of money in order to help a family member.
"You can't find out how much the operation would cost here because you can't pay for a transplant in these islands," he adds. "But at one point I had to have a colonoscopy done in Dublin. For a day-procedure in St Vincent's private hospital, where you take up a bed for half a day, it costs something like €1,200. In Frankfurt we had all the tests, all the scans, a five-day stay in hospital for the work-up, a four-hour operation for each of us. And then my brother was in hospital for five weeks and I was there for a week - all for €37,000. Now do the math." Sure enough, it adds up to a bit of a shocker.
http://www.irishtimes.com/newspaper/magazine/2009/0808/1224252175871.html?via=mr