He's got my kidney! The rise in living organ donors

[Clark]

http://www.telegraph.co.uk/health/8811303/Hes-got-my-kidney-The-rise-in-living-organ-donors.html

He's got my kidney! The rise in living organ donors
It’s the ultimate selfless act – giving up a vital organ in order to save someone else’s life. Bridget Freer hears three extraordinary tales

There can come a time in any marital disagreement where you sense your opponent is right, and you need a trump card. Well, Katherine Kearns from Nailsworth, Gloucestershire, has the trump to beat all trumps.
In November 2009 she donated one of her kidneys to her husband, Simon. So at the crucial point in an argument she will now say,'You’re right, but that’s my kidney talking!’

Simon, 49, an IT manager for Lewisham Council, and his wife Katherine, 42, a community landscape officer, found out in January 2009 that he was critically ill with kidney disease. The doctors said that both his kidneys 'were in a pretty parlous state’, recalls Simon.

His overall kidney function was very low at 20 per cent. 'You can live on 25 per cent, but because I’d dipped below that I was getting very ill.’ Simon would need dialysis to survive, but the renal team told the couple that a transplant kidney would be the best option.

They were sent home with some literature. 'I like to find out about things,’ Katherine says. 'But finding out about kidney disease was just too upsetting. I woke up very early one morning, read the leaflet and cried my eyes out.’

There are almost 8,000 people on the waiting list for transplants in Britain, and one of the facts that so shocked Katherine was that one in three will die waiting. The average wait for a donor kidney is three years but it can be longer depending on blood group and genetic type.

Katherine also discovered that over the past 10 years there has been a threefold rise in living kidney donations. One in three kidney transplants in Britain is now from a living donor – that means that more than 1,000 people received a live-donor kidney in the past year.

This rise could be due to better success rates – about 94 per cent of kidneys from a living donor still work well after a year, compared with 88 per cent of those donated posthumously, according to NHS Blood and Transplant.

Or it could be that planned surgery is preferable to an emergency operation performed as and when a deceased donor kidney becomes available. The 2004 Human Tissue Act, which allowed living donations from non-relatives for the first time, has also helped.

'I saw how much more successful transplants from living donors were than [so-called] cadaver transplants,’ says Katherine. ' I thought, “I like to solve problems. Here is a problem I could solve.”’

It didn’t look quite so simple to Simon, though. 'It’s a fairly low-risk operation, but it’s not risk-free and it is invasive surgery. I was worried, guilty, had a whole mix of emotions. How else could it be for me? My main worry was: what if it didn’t work? She would effectively have wasted an organ, a fairly major one; they give you two for a reason.’

Katherine went ahead with all the necessary tests to find out whether she was compatible and fit enough to donate a kidney. Meanwhile, Simon’s kidney function hit a dangerously low five per cent and he started dialysis. Then, in November 2009, he and Katherine were decreed healthy enough and given the go-ahead.

The journey to a suitable donor wasn’t quite as smooth for Holly Cocker, 26, a film-maker from Putney, west London. She’d first become very ill with kidney failure at 19, and four years later was still on the transplant list. 'I had dialysis – they put a tube in your tummy and you strap yourself to a machine for nine hours a night at home – for three and a half years while my brother and parents got tested, and no one was a match. I was really upset, but it was more upsetting for them.’

During this time her childhood friend, Oliver Foggin, 28, got in touch to say he’d been travelling round Asia and Australia, and would be passing through London – did she want to meet up? They went out for a meal and Oliver suggested the cinema afterwards. 'Holly said she couldn’t because she had dialysis that night,’ recalls Oliver. 'And that’s when she told me. I’d had no idea until then that she was ill.’

Holly and Oliver first met as 12-year-olds in Leeds and became instant best friends. 'We were round each other’s houses and playing out in the streets literally every day,’ says Oliver. 'It was a blast,’ recalls Holly. Then her father announced the family was moving to London: 'It was really hard leaving Oli and my friends.’

But they’d stayed close and Oliver was shocked when he learnt that Holly was gravely ill. 'Once Holly had explained there wasn’t anyone in her family who was compatible, my gut reaction was, “Where’s the nearest hospital? Let’s go and get tested.” But I didn’t say anything as, obviously, it’s not something you take lightly.’

A few weeks later he texted Holly to see how she was: not good, the answer came back. She’d had a call saying her renal unit had found a suitable kidney and she’d gone into hospital only to be told that the cadaver kidney was damaged and unsuitable. It was a real blow. Oliver instantly texted back: 'I’ll give you my kidney.’

Oliver’s blood group matched and, when they did the tissue test, he was found to be 100 per cent compatible. There was, says Oliver, 'a million-to-one chance of that happening, especially as we’re not related. It was unbelievable.

'The only doubt that ever came into my head,’ he recalls, 'was when I first found out we were a match, that I was fit enough and that this could actually happen. I had a flicker of, “Am I doing the right thing?”’

Oliver went online: 'There was a guy who said, “If your friend was drowning, you’d throw her a lifebelt, wouldn’t you? This is the same situation.” I realised he was right; Holly was drastically ill with no hope of help any time soon and I had the lifebelt of a kidney that I could throw to her.’

Holly’s moment of doubt came in hospital when Oliver was wheeled off for surgery, just two hours before her own operation. 'I was a complete wreck when I had to say goodbye to him, I was terrified. If anything happened to him I’d have felt awful. I couldn’t believe what he was doing for me; I’m still in shock that he did it for me.’

When Holly came round it was to the slightly surreal sight of a nurse waving a big bag of urine saying, 'It’s working, it’s working!’ 'So I knew I was OK. Before the transplant, it had felt as if I was carrying my arms and legs, so much so that I thought it would be better not to have them, but as soon as I came round, they felt normal. I was sore, but I wanted to get up and run around. I couldn’t remember feeling that well since I was a little kid.’

Both Holly and Oliver became fascinated by the details of what had just happened. 'Once they’ve removed the live donor kidney,’ Holly explains, 'they put it in ice and clean it with lots of saline and plug it into you.’ Holly’s new kidney has been put just under her ribcage on her right. 'I can feel its outline; it’s attached to the big artery that goes down to my leg. It is kind of weird. It’s my party trick. People are always really intrigued.’

Oliver also has a lingering sense of strangeness, although physically he felt no side effects. 'I have this very faint little scar. You can’t really see it, but if I catch sight of it I think, “I’m missing a kidney under there, and part of me is working Holly.” It’s quite unbelievable: you can take part of someone, put it in to someone else and it keeps going like nothing has happened.’

'He’s like family,’ says Holly. 'We have a bond, the most special relationship of anyone I know.’

James Baxter, 37, and Peter Allinson, 42, also share a very special bond, even though they met for the first time in a hospital waiting-room in 2002. They were both waiting for appointments at Harefield Hospital when they got chatting. Inevitably they started comparing notes about their treatment and operations when James suddenly said to Peter, 'You’ve got my heart!’ Despite strict confidentiality rules to prevent such an occurrence, donor and recipient had met.

James, currently unemployed, from Maidstone in Kent, was diagnosed with cystic fibrosis as an infant. He’d had a sporty childhood until he was 16 when he started getting increasingly severe chest infections. By the time James finished university he needed daily physiotherapy: 'Someone laying you on a table and whacking seven bells out of you to get the liquid off your chest.’

Aged 22, James caught a chronic chest infection and almost died. 'It was my first big scare and the first time transplantation was mentioned.’

This was 15 years ago when it was not possible to transplant just the new pair of lungs James needed, but was deemed safer to transplant heart and lungs together. Then, in what is known as a domino operation, James’s heart would go to someone on the heart-transplant list. Over the past eight years, though, it has become much more common for people such as James to have a lung transplant and leave their own healthy heart in place.

James struggled with increasingly severe chest infections for a further five years and then, told that time had run out, went on the transplant list. Having been warned it could be a year, James got 'the call’ in January 2001, six months after going on the list. It was his transplant co-ordinator saying, 'Don’t panic, we have a heart and lungs for you. We need you to go straight to hospital.’

James went down to theatre at about 1am. His parents stayed up to see him come round. 'And,’ he says, 'they saw my heart leave in a cool box for the organ transplant. They saw it go to Peter.’ Not that any of them knew anything of Peter at that point.

Several weeks earlier in Staines, Surrey, Peter Allinson, a telecommunications manager, had suddenly developed dilated cardiomyopathy, which affects the heart’s ability to pump blood. He was 32 and had a six-month-old son, Kieran.

In January 2001, after a battery of tests, Peter was told the only option was a heart transplant. 'They said the waiting list was about 10 months, but two weeks later Harefield called saying they had a heart for me.’

And now here were James and Peter at the clinic, having worked out their extraordinary relation to each other. 'I’d donated my heart without a thought,’ says James. 'It was a no-brainer. I wouldn’t need it, so someone else should have it. But to know it was fit and well and sitting next to me in a clinic was an amazing bonus.

'Peter had been so ill with his heart condition, he wasn’t able to do dad duties including giving cuddles – that’s not a nice thing for a young dad to endure. Knowing what I’ve done has allowed that to be reversed is fantastic.’

Ten years on Peter says the two see each other as brothers. 'James is godfather to our second son, Henry, who we almost definitely wouldn’t have had if not for him. We don’t need daily contact, but it’s nice to know he’s there and we can ring each other up at the drop of a hat.’

As a married couple, however, Simon and Katherine are in contact every day, something for which they’re both very grateful. Katherine says that renal disease had turned her husband into 'a grumpy old git’. But since the transplant, she says, 'I have got my husband back.’

For his part, Simon says, 'She has given me the gift of life. It’s an incredibly selfless gift, and I recognise that, but life does go on. I obviously have said thank you, but you can’t keep saying it.’

Katherine agrees. 'The last thing I want is for him to feel guilty or beholden to me, but we do joke about him taking on my characteristics: will he start doing crochet? Actually, I tell him I only did it because he was so rotten to be with when he was ill, I didn’t really have an option!’