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Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on July 14, 2009, 02:29:33 PM
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'We defied the risks and give our kidneys to strangers'
By Laura Topham
For most people, it’s news you hope never to hear. But when Barbara Ryder received a hospital letter two years ago confirming she would shortly be losing one of her kidneys, she was thrilled.
‘I was over the moon when I saw the date had been set,’ says the 60-year-old nurse from Cornwall. ‘It was what I’d wanted for years.’
In an astounding act of altruism, she had decided to donate one of her healthy organs to someone who desperately needed a transplant.
And this was not a sick relative or a lifelong friend. It was someone on a waiting list — a stranger she would probably never meet.
Barbara is not alone — she is one of 22 people in Britain who have donated a kidney to someone they do not know since the practice was established by the Human Tissue Authority in 2006.
Figures released this week show the numbers have increased by half in the past year alone, during which 15 men and women passed the rigorous vetting procedure.
It is selflessness almost beyond comprehension — willingly risking your life to help an unnamed stranger.
Yet Barbara remains remarkably modest.
‘It’s not why, but why not?’ she explains. ‘It seems to me a perfectly normal thing to do — I’m single and my children have left home, so nobody relies on me, I have two healthy kidneys and need only one — while thousands of people desperately need a transplant.’
Barbara knows better than most the toll long-term illness can take, thanks to her work as a nurse in Plymouth.
So when the law changed, allowing strangers to donate a kidney, she was immediately drawn to the prospect.
Around 1,000 people die each year from kidney failure while waiting for a donor. For many a transplant is their last hope.
The new guidelines were published with the establishment of the Human Tissue Authority (HTA) in 2006, a body set up to regulate organ donation and enact a more flexible approach to who can donate to whom, so more people can benefit from a living-donor transplant.
But the experts never expected such an incredible response.
‘We thought there may be a very small number of cases when we started approving this type of transplant in 2007,’ says Vicki Chapman, Director of Policy and Strategy at the HTA.
‘It is remarkable the number of people who want to donate a kidney to someone they don’t know, and we never expected such a significant rise after just one year.’
It seems that hearing of the chance to help struck a chord with people across the country, including Barbara.
She says: ‘Being a nurse I’m fully aware of the suffering and difficulty that come with being on kidney dialysis, and this was a way of alleviating that pain for someone.
‘I spoke to the transplant co-ordinator at the hospital where I work and she explained what would be involved.
‘There were tests on my kidneys, bladder and blood which had to be done over and over, as well as the psychological analysis — an hour each month with a psychiatrist — to ensure I was mentally strong enough.
‘Ironically, the medical staff tried their best to change my mind, and kept asking “Are you sure?”
‘But I think they were testing my mettle to ensure I could handle what might happen.
‘I was given lots of information about the risks, such as infections and bleeding. But I had already calculated the dangers and wasn’t fazed by them.’
And yet the news this week that a mother in Australia died just a few hours after donating a kidney to her sick daughter proves there is always a possibility such an act of kindness can be fatal.
One study suggests there are three deaths for every 10,000 procedures involving living donors.
But Barbara says: ‘I was only frustrated that it took so long because altruistic donation was so new then.
‘I was only the second person in the country to volunteer, so I really was a guinea pig in that sense.’
The procedure is now much faster because living kidney donation is a growing trend. In 2008/09 there were 1,023 living donations approved by the HTA, up from 971 in 2007/08 — though most came from relatives or friends.
Kidney patients are the single largest group awaiting transplants, with 8,000 people on the UK list.
Five transplants take place each day on average, with most organs coming from people who have died.
Far harder than making the decision to donate a kidney for Barbara was breaking the news to her son Jeff, 36, who was naturally worried.
‘He asked what would happen if my other kidney failed, or if, for example, he needed a kidney to be donated to him, but he is a very healthy man.
I explained that this was something I really wanted to do.
‘After the initial surprise and concern, he understood my motivations and was very supportive.’
He is now deeply proud of his mother, as are her two grandchildren. Some of her friends, however, have not reacted so well.
‘I have lost a couple of friends over this issue,’ admits Barbara sadly.
‘It’s a shame, but they couldn’t deal with what I was doing. It’s sad, but I have no regrets.’
The operation was finally scheduled for September 2007. ‘I didn’t feel nervous, but I must have been anxious as my blood pressure went up on the day.
‘I lost a lot of blood during the operation, but aside from that the procedure ran smoothly and I was given heavy painkillers afterwards so I couldn’t feel much. There was pain, but I could deal with it.’
The kidney was then swiftly taken to another hospital where the recipient was waiting.
‘When I woke up, my first feeling was relief that it had gone smoothly and the kidney was off and when the transplant co-ordinator told me it was a success, I felt euphoric.’
Barbara was allowed home after four days and felt ‘normal again’ two weeks later. Occasionally, kidney recipients choose to contact their donor through the transplant centre, and ten days later Barbara received a letter from Andy Loudon, who’s now 69, thanking her for her generosity.
‘I wrote back and five months later, at Christmas, we met up. It was outside Brown’s Hotel in London and it was quite emotional — Andy is very shy, but he immediately gave me a huge hug.
‘He is a lovely man and he comes down to see me from Bedfordshire about three times a year.
‘Having a new kidney has changed his life and that makes me very happy — it gives me terrific satisfaction.’
Someone who understands Barbara’s sentiments only too well is Dr Paul van den Bosch, 54, a married father-of-four from Surrey.
It’s no coincidence that he is a GP — it was this experience and knowledge that pushed him towards giving a kidney to a complete stranger.
‘I’ve often seen the devastating effect of kidney disease on patients — as well as the way transplants transform people’s lives,’ says Paul.
‘So it was always in my mind to do this, and I knew that the risks are really minimal.
‘The turning point was when a man told me that receiving a kidney in a transplant was better than winning the Lottery; I realised I could really help someone.
I researched the operationon the internet and spoke to my wife, who is also a doctor and was very supportive, then decided it was something I had to do. I’ve always been fit and healthy so there was no obvious reason not to.’
Paul contacted Guy’s Hospital, the most convenient transplant centre for him, and was led through the process of tests.
‘It took about ten visits to London and an array of examinations, X-rays, blood tests, scans which seemed inconvenient at the time, but looking back wasn’t much fuss really.
‘It was only the mandatory psychiatric testing which involved a twohour assesment with a psychologist which I minded because I found it intrusive, and knew I was OK.
‘The risks are not as great as people think, so I wasn’t worried. I have more chance of dying from other causes. It is not trivial, but I trusted the surgical team.’
Nine months later, the operation took place, in April 2008. Paul was released three days after the fourhour operation.
‘I won’t pretend I felt absolutely fine, but it wasn’t an ordeal — it was sore and uncomfortable, but thousands go through much worse operations every week.
‘I was back at work a fortnight later, and went on a cycling holiday abroad that summer. I am fine physically and nothing has changed at all — there’s nothing I need to be careful about now.’
His children, Kate, 23, Peter, 21, Libby, 18, and Alice, 15, are very proud of him, though inevitably they found it upsetting to see their normally healthy father in hospital.
As with Barbara, the kidney recipient wrote a letter to Paul thanking him for what he had done.
But Paul is reluctant to get back in touch.
‘It was a very generous letter from a woman I know nothing about — and in honesty I’d prefer not to know. I just feel it could be an awkward relationship and I’d feel embarrassed, or they might feel embarrassed.’
Until he decided to speak out this week to publicise the cause, few people knew Paul had given his kidney to a stranger, aside from family and close friends. In fact his only concern about the operation was how people would react.
‘Some friends think it is a bit odd, others that it was a generous thing to do. Others asked if I need to suffer for the good of my soul.’
Is there any element of that? ‘I wouldn’t have said that, but I am very aware of the fact I have been fortunate — I have a nice family, good job and am fit and healthy. I’m a lucky guy with a good future and many people are not so fortunate.’
Paul believes most people would do the same. ‘If you saw a child drowning you’d feel an obligation to help, even if that was a risk, and I’m just doing a similar thing.
‘It is one of the few things you can do that is unequivocally useful. It’s something lots of us could think about doing, but I would never twist anyone’s arm. I’ve no regrets — it is just something I did and a part of my history now.’
It may be history to Paul, but for one woman, it was an act that will provide her with a future.
http://www.dailymail.co.uk/femail/article-1195368/We-defied-risks-kidneys-strangers.html
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