Sue Jepson has never given blood. She doesn’t like needles. However, despite her phobia recently she went one step further when she had one of her kidneys removed and donated it to a compete stranger.
The 49-year-old, from West Yorkshire, didn’t tell anyone outside a close circle of friends and family what she was planning to do, it was, she says, her decision. Following the operation last October she went back to work and since then has done nothing to advertise the fact that she is one of the country’s small numbers of altruistic donors.
However, a year on Sue has been persuaded to speak about her experiences in the hope of persuading more people that when it comes to kidneys, one is more than enough.
“When you do something altruistic it doesn’t sit very comfortably to immediately go out there and tell people what you’ve done,” she says. “I always considered it a private matter and it would have stayed that way if I didn’t think that by talking about why I did it and the whole experience of donating a kidney it might make others think about doing the same.”
According to a YouGov survey commissioned by the newly launched Give a Kidney – One’s Enough charity, a third of British adults did not realise that they were allowed to donate a kidney to a stranger and almost 25 per cent were under the impression they could donate only to someone they knew or were related to.
It was a similar revelation that prompted Sue to begin investigating the whole area of altruistic donation.
“A few years ago I watched a documentary about people waiting for transplants,” she says. “Their family members were being tested as possible matches, but unfortunately it turned out that they weren’t suitable.
“I guess you always assume that if you were in that position someone in your family would be able to help. It just struck me then that if a relative wasn’t able to donate a kidney then may be I could.”
For most it would have remained nothing more than a thought, but in the days that followed Sue turned to the internet. Scanning various sites, she discovered that altruistic donation had in fact always been legal. However, the cash for kidney scandal which had seen impoverished Turkish men being paid to provide organs for British patients in the 1980s had resulted in much stricter regulations and a widespread fear of exploitation.
It wasn’t until 2004 that the newly formed Human Tissue Authority followed America’s lead and approved what it called Good Samaritan donations. However, with very little publicity surrounding the decision, only a handful of willing donors came forward and in the last 12 months there have still only been 28 altruistic donations.
Sue, however, was undaunted by the prospect of joining such a small minority and, armed with a dossier of information from the internet, arranged a meeting with transplant experts at St James’s Hospital in Leeds.
“It’s not that they tried to put me off, but they did make it very clear what I was about to go through,” she says. “There are risks with any major operation, but I also knew that they wouldn’t go ahead with it unless they knew I was already in good health.
“During that meeting they also asked me how I would feel in the future if one of my children needed a kidney transplant and I had already donated to a stranger.
“They are all questions you need to ask yourself, but I already knew the answer. In life there are a lot of what ifs and buts, but I don’t think you can live by trying to cover all eventualities.
“There is no guarantee that I would be a match for my family and I just felt that this was something I needed to do now. I’m pretty strong minded and by the time I had got to the hospital I already knew it was something I was going to pursue. Nothing was going to dissuade me.”
However, there were still a number of hurdles to cross and Sue was also told that, despite her willingness, she would have to undergo various tests to check that both her kidneys were healthy and a series of psychological assessments to ensure she wanted to go ahead with the procedure for the right reasons.
She sailed through them all and it was then the process of matching her to a patient on the transplant waiting list began. With the date nearing for her to go into hospital, Sue began telling her family.
She admits some couldn’t understand her motivation and all the usual worries for anyone going in for a major operation were intensified because Sue was voluntarily putting herself into theatre.
“When I told my son what I was planning to do, he just turned to me and said: ‘I always thought there was a strain of mental illness running in this family and now I know it’.
“The next thing he said was: ‘You know what, Mum? It doesn’t surprise me’. For me that was the green light.
“People are always going to react differently and I didn’t expect everyone to understand, but what they did realise was that this was something I had thought about for a long time and there was no point trying to change my mind.”
Sue opted to have the kidney removed through keyhole surgery and, while she suffered a little discomfort when she awoke from the anaesthetic, she describes the whole thing as virtually painless. Back home within a few days, aside from losing the taste for alcohol she has experienced no side-effects. All the evidence shows that altruistic donors are at no greater risk of illness or kidney problems than anyone else and the operation requires no change in lifestyle or diet.
“I’ve always kept fit and healthy and I never drank a lot, but I do notice that when I go out with friends I drink even less than I used to. I don’t know whether subconsciously I’m thinking I’ve only got one kidney I’d better really look after it, but it really doesn’t bother me.
“Aside from three small scars that are hardly noticeable, physically there has been no difference whatsoever.”
Each year, 300 people with kidney failure die while waiting for a transplant and, of the 6,500 people on the waiting list, only 2,500 operations take place each year.
“Despite public campaigns over many years to increase the number of donations from deceased donors, there is still a severe shortage of kidneys,” says Dr Chris Burns-Cox, founder of the charity, who says three million adults would consider donating one of their kidneys if given the right opportunity.
“Until recently living donors were mostly close relatives who volunteered to donate a kidney to a loved one who was suffering from kidney failure, but often they aren’t a match and experience has shown that they will never provide enough kidneys to bring the waiting list down.
“Transplantation is an uncertain business, and there are no guarantees of success, but living donation has all the right ingredients to create the best opportunities for a good outcome for the recipient. In fact they are the Rolls Royce of kidney transplants because we know the organ has come from someone in the best of health and the operation will have been planned under the best possible circumstances.”
Sue has very little detail about the recipient of her donation. What she does know is the operation was successful and a year on they seem to be doing well.
“I didn’t want to meet them or their family, because I didn’t want them to somehow feel obliged to strike up a friendship or forever feel indebted to me. That’s not why I did it. I did receive a thankyou letter from them and for me that was more than enough.”
How to increase the numbers of those holding donor cards is contentious. Some have suggested an opt-out system where everyone is on the list unless they say otherwise, while others have mooted cash incentives and contributions to funeral costs.
“The idea of introducing money into the donation system doesn’t feel right, but I think we should move towards an opt-out system,” says Sue. “However, I honestly believe the real key is greater awareness. Becoming an altruistic donor is honestly the best thing I have ever done.”
The charity knows of no recipients of altruistic donations in Yorkshire, but it is acutely aware of the impact they have.
“It is difficult to put into words the difference it has made to my life. In its simplest form my life has become a joy again,” says Chris Boustead, who until his transplant had to undergo dialysis three times a week after suffering acute kidney failure in 2007. “I do not know the motives of my donor, but I will never forget the act of such kindness and selflessness.
“Thank you is such a poor word for what she has done for me.”
For more information about altruistic donations visit www.giveakidney.org