I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on November 16, 2008, 12:10:53 AM
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'You're waiting for the call that might mean life or death'
What happened to the boy featured at the start of our campaign? His mother tells their story
Interview by Denis Campbell guardian.co.uk, Sunday November 16 2008 00.01 GMT
The Observer, Sunday November 16 2008
In January, The Observer launched its Donor for Life campaign and told the story of Luke Heppenstall. At the time, three-year-old Luke was close to death. Both his kidneys had been removed to help him fight a rare form of cancer, he was being kept alive on dialysis and he desperately needed a donated kidney. Happily, two months later he received it. Here Luke's mother Ruth Jones explains how, despite his good fortune, other children in his hospital were not so lucky and why the UK needs to switch to an organ donation system based on 'presumed consent'.
Luke was one of the lucky ones, without a doubt. He got the organ he needed just in time. By March this year he was in a pretty bad way. He was running out of places in his body that the doctors could get a line into, without which dialysis would have been impossible and he would have died. We were just living in hope that he would get a transplant because the line that was in him in March was probably the last one the doctors were going to be able to get.
He only needed one kidney. But by then he had been on the waiting list for seven months, so we were all very, very anxious. The doctors said that Luke was near the top of the waiting list, but we didn't know when or if it was going to happen.
Then one day an adult kidney became available and Luke got it. We don't know anything about the donor; we didn't want to know. We were just grateful that whoever donated the kidney had signalled their consent for their organs to be used after their death by signing the Organ Donor Register. If whoever the donor was hadn't done that, we wouldn't have Luke today.
Luke's four and a half now. Since the transplant he has gone from strength to strength. He has put on weight and got taller. He started nursery in September. His condition meant he used to be small for his age but now he's about the same height as everyone else at the nursery, which is good.
But other people who are on the waiting list for an organ aren't so lucky. Some die while they are waiting because there are far too few organs. During the many months Luke spent in ward 15 of St James's Hospital in Leeds, a couple of other children who were on the same ward as him - and who also needed a kidney - passed away.
The current system of organ donation isn't up to the job. It's horrendous. It's a lottery, and it should be changed so that it isn't a lottery. Our organ donation rates are low because some people are frightened or squeamish about donating. That's the problem with people. At the moment the waiting list is really long because there aren't enough donors, so it's taking far too long for people who need an organ to get one, and people are dying while they are waiting. That shouldn't be happening. Lots of lives could be saved if more people donated.
Presumed consent is better than the 'opt in' system we've got now. If it gets more donors it's got to be better, hasn't it? I support it because it would make more organs available, which would save lives, and would also ensure that people who want to 'opt out' of donating their organs after their death can do so. To me presumed consent strikes the right balance between someone's right to refuse and the obvious need for more organs to be available.
It's an absolute nightmare to be on the waiting list, or have a relative who's on it. You're living but waiting all the time for the phone call that might mean life or death. Every time the phone rings late at night, you think: 'Is this it?'
I'm very disappointed to hear that the Organ Donation Taskforce has decided not to recommend that we move to a system of presumed consent. More people will die because the government is being advised not to make the switch. They need to do something to make it easier for people to get transplants and to stop people dying on the waiting list.
Luke will need another kidney transplant in 10 to 15 years time, because that's how long a donated organ lasts for. I hope that by then we will have presumed consent, because otherwise people will keep dying unnecessarily.
http://www.guardian.co.uk/theobserver/2008/nov/16/health-organ-donor-kidney
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It is very sad if you think about this. But we hear about people spreading the word of their need to the Church, the Internet, Everybody they know. Signing up in two or more states,going outside of the country, checking out matching donors. Keeping up hope for others.