Matters of the heart

:: Hannah Swift, 17, from Helmsley

HANNAH Swift remembers nothing of the desperate dash up to Newcastle which saved her life. She was nine at the time, unconscious and heavily sedated in the back of an ambulance which was racing to reach the Freeman Hospital before she died. There, surgeons were preparing to carry out an emergency heart transplant operation that was her only chance of life.

Hannah's mum Carol, however, remembers every moment of that ghastly dash.

There was no room in the ambulance for her or her husband Frank, so they had to follow in their car. They had already been told Hannah probably wouldn't make it. It was 1996 and they didn't have a mobile phone. "So I said before we set off, 'If she dies in the ambulance on the way up, turn the light off and we will know.'"

Hannah had been ill for several weeks, feeling chronically tired. It was put down to a virus - until two days before that emergency dash, Carol and Frank took her to outpatients' at York District Hospital. She was so weak she couldn't even walk from the car park into the hospital, and her dad had to carry her.

It turned out a virus had attacked her heart, making it swell and leak. Already, her kidneys and liver were beginning to fail. Hannah was rushed to the intensive care unit at Killingbeck in Leeds, where next day, she was sedated.

The following day, Thursday, Carol learned just how serious her daughter's condition was. She was dying and needed a heart transplant, the doctor said. "I remember thinking, 'Should I be carrying on, getting hysterical?'" Carol says. "But it was like they weren't talking to me. Like it was on TV."

Things happened very quickly after that. That same afternoon, someone came down from the Freeman Hospital at Newcastle. "He said, 'Do you want the good news or the bad news?'" Carol recalls. "I said the good news. He said 'We've got a heart for her. The bad news is we don't think she's going to make it'."

So began that desperate mercy dash, with a police escort, up the A1. They made it, just - another two hours and it would have been too late - and Hannah was successfully operated on that night, receiving the heart of a 13-year-old girl who had been killed in a road accident.

The first thing Hannah remembers is waking up afterwards and feeling ill. "I was saying to my mum 'I want to go home!'" she says.

Hannah, now 17, recovered quickly, and before long was making headlines for different reasons. A few weeks after her operation, she was recovering in bed at home in Helmsley when she looked out of the bedroom window and saw thieves trying to break into a clothes shop opposite. Hannah called her dad, who rang the police - and Hannah gave them a blow-by-blow account of what she could see. Three men were later jailed, and Hannah received a police commendation.

That was not all. Before long, she had picked up what was to be the first of a clutch of medals at the British and later World Transplant Games.

Not everything was to go smoothly, however. Four years after receiving her new heart, she developed cancer - a form of lymphoma that was a complication of the drugs she was taking to ensure her heart was not rejected (see panel).

She was given a 20 per cent chance of survival - but with the help of a newly-developed anti-cancer drug, battled through again.

That was three years ago. Now she is a bubbly 17-year-old studying beauty therapy at York College who dreams of owning her own beauticians. She still plays sport, picking up two silver medals and a bronze in the badminton events at the World Transplant Games at Nancy in France last summer.

She knows she is lucky and never takes life for granted. She doesn't dwell on the fact that she has someone else's heart inside her. "I just think of it as another muscle," she says. But she has seen a photo of the girl who died, and has had letters from her grandparents.

"I feel sad for that family, of course. But the grandparents say they think she was put on this earth to save me and that God knew it would happen."

She herself is just grateful to be alive and well. "And I think I value life more because of what has happened to me," she says.

:: Claire Woodcock, 29, from York

Claire Woodcock has not had a heart transplant and hopes she never will. She is one of those for whom advances in medical technology may mean the condition of her heart can be managed without the need for such drastic measures. (see panel)

At the age of 14, Claire was diagnosed with hypertrophic cardiomyopathy, an inherited and potentially fatal heart condition that causes excessive thickening of the heart muscle.

Doctors were not too worried at first, telling her it would probably never cause any problems. Many people can live with it most of their lives without showing symptoms, they told her.

Claire was not so lucky. By the time she was 18 she began to suffer from angina, and at 21 began to develop an erratic heartbeat.

She has been in and out of hospital, has had her heart stopped and then started again, and has gradually come to accept that it will never go back to beating with a normal rhythm.

So it is a question of managing her condition. She has had an implant fitted which monitors her heartbeat and which will automatically kick-start her heart with an electric shock if she has a heart attack.

She has to avoid strenuous exercise - it tends to make the problems worse, she says, so she tries to avoid even going up the stairs whenever possible. And she is also tuned in to when her heart begins to beat strangely. If that happens, she says, she jumps straight into a cab and goes to hospital for a check-up.

But she refuses to let the condition spoil her life. She holds down a demanding job as an occupational therapist, and plans to get married next year. She even hopes to have children one day. Doctors have said that if it is well planned it should be 'do-able', she says.

She hopes she will never need a heart transplant. But if she does, one day? "I know people who have been told some day they might need one and are thinking about not going ahead with it because of the problems that can occur afterwards," she says. "I think their idea was that they would have it, but would have to be really poorly first."

And herself? "I think each decision is very difficult but I cannot imagine myself ever actually wanting to give up on life," she says.

:: Michael Smith, 60, from Harrogate

Dentist Michael Smith had his first heart attack at 33. Nine years later, he had to have a heart bypass. Even so, by the time he reached 50, his heart was failing, the muscle damaged by his history of attacks.

"I couldn't walk up a hill," he says. "I got terrible pain even if I got excited watching TV. I put £1 on a horse in the Grand National.

"It came up and I won and I got angina, really severe pain."

It was, he says with masterly understatement, 'very worrying'. "You don't know whether it is going to be the last pain you ever have."

He was told he needed a heart transplant and spent six months on a drip in Harrogate District Hospital, waiting for the right heart to come along. Twice he was rushed to Newcastle for the operation; twice it turned out to be a false alarm. "The heart was not suitable," he says.

It was, however, a case of third time lucky. When he realised that this time the operation was going to go ahead, he didn't feel fear: just relief that at last the waiting was over. "It is the best chance that you have, and you jump at it," he says.

The operation was a complete success. Within three days, he was exercising on a bicycle machine in the hospital itself; within three weeks he was back at home in Harrogate.

Like Hannah, his life after the transplant has not been entirely without complications. He has to take a cocktail of drugs every day to ensure his body does not reject his new heart, and also to control the epilepsy which developed, possibly as a result of his operation.

But now, ten years on, he takes regular long walks in the Dales and is looking forward to seeing his children - a son aged 33 who married last year and a daughter aged 30 who is getting married next year - have children of their own. "It would be nice to see some grandchildren," he says. "But I've already seen an awful lot that I wouldn't have seen."

Hardest part is finding the right heart

:: Professor John Dark

HANNAH Swift's mum Carol is astonished by the matter-of-fact attitude doctors have towards heart transplants. After her daughter's operation she told the surgeon how marvellous it was that such a thing were possible. "And he said it is just plumbing, really, taking one part out and putting another one in," she says.

Professor John Dark, head of the heart and lung transplant unit at the Freeman Hospital in Newcastle which operates on patients from North and East Yorkshire, agrees that it is a relatively straightforward operation. The main problem, he said, lies in finding the right heart.

In the 1990s, the Freeman was carrying out about 350 heart transplants a year. Last year it performed just 150. There are a number of reasons for that, including advances in medical science which allow many more people to live with heart conditions instead of having a transplant; but one major reason is shortage of donors.

In one sense that's good news. "There have been huge advances in road safety, which means fewer 21-year-olds falling off motorbikes," Prof Dark says. But it does make it more difficult finding the right heart for a transplant. So one of the most difficult choices surgeons have to make is deciding whether a 'marginal' heart, from a slightly older person, for example, will function properly.

The world's first heart transplant was carried out by Christian Barnard in South Africa. The patient died 18 days later after contracting pneumonia. In the UK, the first successful transplant was 25 years ago, at Papworth Hospital in 1979.

In the early days, survival rates were poor. Then in the mid 1980s a new drug called cyclosporin revolutionised the treatment. It dampened the body's immune system, so preventing the new heart being rejected, but had fewer side effects than earlier drugs. Almost overnight, survival rates rose from 50 per cent after one year to 80 per cent.

Since then, those rates have not increased by much, creeping up to 85 per cent after one year. But that is mainly because advances in medical technology - new drugs for managing heart disease, and technology such as the implant that monitors Claire Woodcock's heartbeat - allow younger patients to go on living much longer with diseased hearts.

As a result, a heart transplant is very much a last resort; and the patients treated today tend to be older and sicker than those who were accepted in the past, Prof Dark says. That being the case, the survival rates being achieved today represent progress.

But there can still be complications. The most dangerous period is the few days after the operation. Any heart being used for transplant obviously has to come from someone who is clinically dead, so the donated heart is already traumatised and has begun to deteriorate. "It will recover completely as long as you get through the first few days," Prof Dark says. "But those days are absolutely crucial."

Other possible complications include the risk of cancer, such as happened with Hannah. The drugs which prevent rejection of the new heart also suppress the immune system and as a result a virus which normally causes glandular fever can cause lymphatic cancer instead.

The prospects for those with heart disease have improved hugely over the past 25 years. In the future, new techniques such as the injection of stem cells into hearts to help them regenerate without the need for a transplant should improve the outlook still more.

To register as an organ donor, call the National Organ Donor Line on 0845 6060400.

Updated: 11:06 Tuesday, June 22, 2004