I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on August 28, 2010, 05:18:59 PM
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I had to ask my friends for a new kidney. You shouldn't have to
It is a disgrace that the UK has one of the lowest organ donor rates in the western world
Two years ago, after a holiday in Brazil and Argentina, I returned to New York and fell ill. Dehydrated and nauseous, I thought I'd picked up a bug in South America and did all the things that one would normally do: take Imodium, drink lots of water, a couple of Nurofen and go to bed.
None of it worked. I grew sicker. Finding a doctor in New York on a Friday is impossible. They are either at the Hamptons or booked up. Eventually, a friend begged his doctor to see me and, as a precaution, he did a blood test. The next morning he telephoned and said: "Pack a bag, go to the New York Hospital and check yourself into the emergency department. I've arranged a bed." What is wrong? I asked and he said: "You're in an acute state of renal failure."
The shock. Within a couple of hours, I had tubes going into parts of me that I never thought you could get a tube into. And I very, very nearly died. They put me on dialysis. American hospitals are famously expensive and when I checked with my insurance company, I was told me that supportive treatment for renal failure isn't covered. "Oh God," I thought. "I'm dying and in a fight with the insurance company." So I came home.
My doctor at London's Royal Free did every test imaginable and continued me on dialysis. The consultant told me I was operating at about 15% of my kidney function. It would be possible to carry on for maybe six months, even a number of years, but eventually my kidneys would fail. And anyway, I would be going three times a week to the hospital for dialysis.
The best solution was to have a transplant. I was about to discover a tough new world. You can wait five years for a kidney from someone who has died carrying a donor card. There are nearly 8,000 patients on the transplant waiting list, of whom just short of 7,000 need a new kidney.
My alternative was to find a living donor. Most people turn to their spouse, but I don't have one. I'm a gay man. I have a small family; a brother in South Africa, a nephew, a niece who's pregnant, and another nephew whose wife's just had a baby and who lives in Sweden. Getting a kidney this way was not an easy option. And, unlike cheap dental operations in eastern Europe or plastic surgery in Brazil, under the Human Tissues Act you can't search for kidney donors abroad in exchange for financial inducement.
My mind turned to getting a kidney from friends. One of the things that you can't do is to ask directly, because you put people into, well, a very difficult situation. I'm a control freak, but for once I was out of control and at the mercy of other people.
The mercy of other people can take your breath away. Marie Alexander, who I met when her husband was chairman of the Royal Shakespeare Company, said she wanted to give me a kidney. I was bowled over. But that's not the end of it. You've actually got to find somebody who's a match in terms of blood type; you've got to know your body isn't going to reject it. Marie had to go through quite a number of tests to find out whether she could give me a kidney. Our blood types matched, but unfortunately there was a problem and she was told by the hospital that they wouldn't recommend it.
It took her three days to telephone me to tell me that she couldn't give me her kidney. I think she was actually more devastated than I was – and I was pretty devastated. And then I had to start over once again, mentioning to friends how much I needed a kidney.
It is the most humbling experience to be offered a kidney by a friend. They are giving you the gift of life that, without it, you would either be strapped to a machine three times a week or you would die. And it's a very emotional. It's most probably the closest thing that a gay man would ever experience to bringing a child into the world; that is creating life and this is giving life.
Someone else close to me offered me a kidney, but he was on blood thinners because he'd had a thrombosis and the doctors said it would put him in danger. You go through events like that when somebody wants to help, but they can't, and that's a tremendous emotional strain. Another friend put himself forward, but was asked what he would do if one of his children needed a kidney down the line. That's a completely understandable concern.
Finally, someone I've known for 15 years, who is currently studying for a nursing degree in Manchester, offered when I said how disappointed I was that Marie couldn't help. He said: "People have been very supportive in my life and it is nice to be giving something back." After we had gone through all the hoops and all the tests, I have a match. I'm having a transplant in just over two weeks' time.
People are very scared of donating. I don't know whether I would have offered; the psychological barrier of donating when you're alive is high. I suppose if I loved somebody enough, I would have. But I never faced that problem.
What I am certain of is that I would have no problem donating my organs on my death. The lack of information about donation is pathetic. We don't realise that we can survive perfectly well on one kidney and the after-effects are negligible. It's not such a difficult thing to do.
I like to organise, but after falling ill I have come to realise I have depended on luck. We need an advertising campaign talking about donation. More people should consider live kidney donation. What is criminal is how few people are encouraged to donate on death. The UK has one of the lowest donor rates in the western world. About 1,000 people a year die waiting to receive a new organ.
The current system is that you have to sign up to donate. In those other countries, hospitals can use organs from people who have died, presuming their consent. If we had presumed consent, there would be a significant increase in the number of organs available. I wouldn't have had to put my friends in such a position. There are thousands of people on dialysis, many of whom will die before an organ becomes available.
I was very lucky that I had a number of friends who were prepared to donate. One is blessed if one has got friends who are prepared to do that.
http://www.guardian.co.uk/commentisfree/2010/aug/29/laurence-isaacson-organ-donation