Health: Give me back the gift of life

EDMUND Brown feels like he's spent his life waiting. As the years tick past, he has to put his life on hold, waiting until someone, somewhere, can change it all.

The 29-year-old looks back fondly on the five teenage years which he was able to spend like most normal young boys - going out, playing football, attending university and holidays with friends.

Those years, between 16 and 21, have been the only years he's not been waiting for a kidney transplant.

Which is why he is giving his backing to NHS Lothian's Sign up to Save a Life campaign - which broke all records in November and December last year, when 10,000 new organ donors signed the register. Not that one is yet a match for Edmund.

"I was just seven when they diagnosed my kidney problem," says Edmund. "To be honest, I can't recall feeling ill before then, but my dad and step-mum knew something was wrong. I think I was drinking an awful lot and going to the toilet too often. They knew it wasn't normal behaviour.

"I ended up being sent to the Sick Kids and having all sorts of tests. Finally, they gave me a kidney biopsy. It was excruciatingly painful - my dad said he could hear me screaming while he had to stand in the corridor. It took me a while just to get over that."

The result of the biopsy wasn't good. The family from Penicuik were told that Edmund was apparently the first case in the UK of juvenile nephronophthisis, a genetic illness which attacks the kidneys, and that he maybe had two years to live before his kidneys failed.

"It's a condition which slowly destroys the kidneys. The doctors thought the future was pretty bleak. There was no medication, just some kind of calcium supplement," says Edmund. That was the first wait.

However, Edmund defied all expectation and it wasn't until he was 15 and a pupil at Penicuik High that his kidneys finally stopped working.

"By that time I was so tired. All I did was sleep all day. My parents still wanted me to attend school so they'd drop me off in the morning, but by the time I got to the classroom, I fell asleep at the desk. I had absolutely no energy.

"They don't put you on the transplant list until your kidneys fail, but I had been receiving regular check-ups to see how mine were doing. I had gone at Christmas and been told they were still working, although they were getting worse, but by the Easter they had failed.

"I was at my gran's and had white spots on my tongue, which really scared me. My bones were in agony, walking was so painful. It was all very quick. It shocked everybody."

Immediately the doctors started Edmund on dialysis, but it was a form which meant a tube had to be put into his stomach. "I was given peritoneal dialysis to take out the toxins, but they had to give me the operation two weeks earlier than they'd planned, or I would have died."

So began the next wait, to recover and see if a transplant was possible. "The recovery from that was slow. I was in the Sick Kids for a long time, and unfortunately the dialysis didn't work. It kept me alive, but it wasn't cleaning the blood the way it was supposed to. I spent six months of that year in hospital."

By this time, Edmund's father Kevin had started going for tests to see if he could give one of his kidneys. On June 17, 1998, the operation took place.

"It was great. It gave me my life back. It meant I could experience my late teenage years in a way I wouldn't otherwise have been able to do," says Edmund. "To be honest, I probably didn't fully comprehend the gift my dad gave me at the time, but it was massive."

As well as being able to live life again, it also meant he grew, as his kidney disease had stunted his growth. He shot up by six inches.

"I was able to go on holidays with friends, to complete school and go to university in Aberdeen to study hotel and hospitality management - and of course have a full student life," he laughs.

"But I hated the course and left after a year. I ended up working at the Mount Royal in Edinburgh and eventually became duty manager at The Point."

Life seemed good, but just before his 21st birthday, his kidneys proved they weren't finished with him yet.

"I was working long hours at The Point, 70 hours a week, and was putting my tiredness down to that, and I was getting bad headaches, but I ignored it.

"However, eventually I went for a check-up and it turned out my blood pressure was really high and my kidneys had failed again. It happens in 99 per cent of kidney transplant patients because of the immuno-suppressing drugs you have to take.

"It was hard to deal with because I was enjoying life, I didn't want to go back to how things had been before. My dad, I think, felt bad that the kidney had failed, and I kept thinking maybe I could have done something to stop it happening, but ultimately it was inevitable."

The third wait began - and is ongoing. Now, every Tuesday, Thursday and Sunday evening, Edmund goes for hemodialysis at the Western General, having his blood pumped out, cleaned by a machine and pumped back into him again.

It takes four hours every time, and has been going on for eight years while he waits for another donor match.

He knows that the NHS Lothian organ donor campaign could be a life-saving opportunity for him. "Becoming an organ donor could give people like me the opportunity to get a sense of normality back into our lives," he says. "I've got a higher than normal level of antibodies in my blood which dramatically reduces the number of potential donors, because only certain types of organ are suitable. That means, for me, it is even more important to increase the number of people on the register."

He adds: "I don't think you ever get used to going through dialysis, and my life has to be so regimented to fit around it. It also means I have to be very careful with my diet and I can only drink a litre of fluid a day or my lungs would fill up and I would drown.

"At the moment, dialysis is keeping me alive; getting an organ would give me the gift of life and give me the chance to live a normal life again."

John Forsythe, the consultant transplant surgeon at the Royal Infirmary and lead clinician for organ donation in Scotland, is also asking people to join the register. "There are around 650 Scots waiting for a transplant and three people die unnecessarily every day while waiting for an organ to become available - we can all help change this," he says.

"The more people we have on the register, the better the chance of saving lives. I would urge everyone to join the register today. It takes two minutes and you could save up to eight lives."

Edmund adds: "All of this has made me realise how precious time is. I couldn't work in the hotel trade because of the physical demands, so I got a call centre job with British Gas, and while there I wrote an article for Planet Hearts, a football magazine. It made me realise that's what I wanted to do, so now I'm about to finish my journalism degree course at Napier.

"What I'll do after that, I'm not sure. I'm applying for jobs, but I know how quickly and drastically life can change, so I don't tend to plan too far ahead."

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