What's it like to spend 12 hours a week on a kidney dialysis machine? Mary Hampshire talks to a teacher who did it for 19 years before a transplant gave him a new life as a top-class sportsman.
PE teacher Seaun Orpen was shell-shocked when he was diagnosed with kidney failure at 22. The former county schoolboy rugby and football player thought: "Why me? I've thrived on sport all my life."
He still does. This August the 44-year-old, who teaches PE and geography at Old Swinford hospital school, Stourbridge, West Midlands, will represent Great Britain in the world transplant games in Kobe, Japan.
Mr Orpen was told he had kidney failure in November 1978, after he collapsed in the school grounds. "My kidneys had probably been damaged from a viral infection as a teenager, and if I hadn't received treatment I'd only have had a few days to live," he says.
For the next 19 years, until a successful transplant in 1997, his life revolved around three dialysis sessions a week, each lasting four hours. He had the treatment 3,000 times, which took up the equivalent of one-and-a-half years of his life. "I had no idea what dialysis was. Once it was explained to me (dialysis purifies blood of toxins that the damaged kidneys cannot eliminate), I thought I'd only be on it for a few months.
"It dominates everything. For instance, you can only go on holiday to places which have dialysis clinics, and social events have to be planned weeks in advance. Sometimes it was very stressful. But I dialysed to live, not lived to dialyse."
For the first nine years, he was treated at his local hospital, the Wordsley near Dudley, on Tuesday and Thursday afternoons, when he had non-contact periods, plus a Saturday session at 3.30pm.
"I was in charge of football and rugby teams, and it meant I couldn't referee matches at the weekend. But the school and colleagues have been really supportive," he says. "I was still able to teach, I just had a lot less energy. And I found my concentration was slightly affected too."
In 1988, Mr Orpen started dialysing at home with the help of his wife, Sharon, 42, who is acting head of design and technology at Sandwell high school. "We put the machine in our extension and my wife trained as a dialysis assistant and learned how to set me up, inserting needles into my left arm. I'd organise the sessions for after school from 5pm. I'd feel tired and groggy afterwards and sometimes had nasty headaches, but I had the evenings to recover in time for work the next day. While I was on the machine, I watched television, caught up with marking or read background material."
He explained his situation to his pupils, telling them he'd had a vein in one of his arms enlarged to allow nedles to be inserted for dialysis. "It's quite noticeable - some boys joked I had a bionic arm. I'd also tell new pupils it was nothing to be afraid of.
"All I wanted was to be treated like everyone else. I said they could still tackle me in rugby and football. When I was on the machine, I was a kidney patient. When I wasn't, I was 'normal'."
During the summer of 1997, Mr Orpen received a call saying a kidney was available. The operation was successful (he'd had an unsuccessful transplant in 1979) and the new kidney's function slowly improved. He gradually reduced his dialysis time from 12 to six hours a week, giving up altogether in August 1998.
With all that extra time, he was able to enjoy more sport. In July 1999 he won a gold medal for golf and two bronze medals for squash and hurdling at the British transplant games. At the world transplant games in Budapest in September 1999, he won a golfing silver. Now he is brushing up on golf and tennis for this year's world games.
His transplant has given him more energy; he can now referee weekend matches, and attend after-school meetings. Last year he joined a school rugby tour to Australia, something that was unthinkable when he was on dialysis. "It feels wonderful to be dialysis-free. I can't imagine where I found those 12 hours a week."
DESPERATE FOR DONORS
Donor organs are in desperately short supply - more than 4,800 patients are waiting for a kidney. And the situation has worsened in the wake of the organ retention scandal at Alder Hey Children's Hospital in Liverpool.
Doctors are blaming the revelations for relatives of patients now refusing to donate organs for transplant. The Health Secretary, Alan Milburn, has called an emergency summit - expected in the next few weeks - to combat a collapse in the number of transplants and to rebuild public confidence. The shortage means doctors are increasingly considering live donors. In 1999 there were 231 transplants from live donors, an increase of 16 per cent on the previous year. "A relative's blood group and tissue type are likely to be more compatible," says Beverley Cornforth of the Transplant Sports Association. "But there are ethical issues. For example, we wouldn't put a teenage girl through such a major operation. It would be too risky for her to cope with pregnancy in later life with one kidney."
Ms Cornforth says many people assume all they need to do is carry a donor card. "But often, when someone has died suddenly, all their possessions will be handed back to their family and we don't find the card. Donors need to discuss their wishes with their family and register to ensure this is honoured."
To register as an organ donor, telephone 0845 6060400.