Organ donation: the gift of life

Every morning, Amanda Fraser traipses downstairs and flicks on the kettle as her home comes to life for another day.

Teenage feet thud across the landing, sports kits are shoved into bags and there are frantic sock hunts before everybody goes on their way.

It's an unremarkable family scene. But things could easily have been drastically different in the Fraser household.

Last year, mother-of-three Amanda suffered sudden liver failure.

"I'd come down with a stubborn chest infection in the New Year," recalls Amanda, 40. "Despite three rounds of antibiotics, it wouldn't clear. Then I noticed my skin had started to look yellow."

Jaundice can be a tell-tale sign of liver problems. Scans revealed nothing at first but on March 17, feeling wretched, Amanda asked her husband to drive her to hospital.

"I was told there was a problem," she says. "A couple of weeks later I was transferred to a specialist unit and had more tests.

"On the Thursday, I was told my liver was failing and I was one of three people in the country classed as 'super urgent' on the transplant waiting list. On the Saturday afternoon, I had my new liver."

Only afterwards did everything really sink in. "It all happened very quickly. The word 'transplant' was mentioned in hospital, but I never imagined it would come to that," says Amanda.

Doctors can't say for certain why her liver failed. "I was just one of the unlucky ones," says Amanda. "But then I was also a very lucky one, as somebody decided to donate a liver."

In the UK, 1,000 people a year die waiting for a transplant. Amanda was hours from becoming another tragic statistic, and leaving her husband a widower and her three children, aged 16, 13 and 10, without their mum.

She's now back at work and in great health. "My donor is my hero," she says. "I literally owe my life to them.

"I've carried a donor card since I was 17, but it's only now that I really know how important it is."

Unfortunately, carrying a donor card or, these days, signing the Organ Donor Register, is not always enough.

Honouring decisions According to NHSBT (NHS Blood and Transplant) figures, 96% of people say they'd have a transplant if they needed one, but only around 28% have signed the Organ Donor Register.

This equates to more than 19 million people, and is significantly higher than in previous years, thanks to successful awareness campaigns.

However, often - currently in around 45% of cases - registered donors' organs aren't being used for transplants when they die, due to their families not agreeing when asked by doctors.

"I find that a bit difficult," says Nigel Burton, 55. "Because you're overriding the person's wishes."

Burton knows how agonising it is to find yourself being asked whether your loved one's organs could be used for transplants.

In 2003, his 16-year-old son Martin died suddenly from a brain haemorrhage due to an undiagnosed arteriovenous malformation (AVM).

"We had no idea," says Nigel. "Until 2am one morning, when it ruptured, and Martin had a major bleed which killed him."

Organ donation wasn't something they'd ever discussed as a family.

"We never talked about it, because you don't lose children, do you?" says Nigel. "We were a typical family - two children, dog - we didn't consider what would happen if we lost our children, or if they lost us, because you don't think it's going to happen."

But the whole family agreed that donating his organs is what Martin would have wanted.

"He was very loving - he was a typical boy but he loved helping people and had wanted to be a nurse," Nigel explains.

Martin's heart, lungs, kidneys, liver and corneas were all taken. His heart saved the life of another teenage boy and his liver saved a young father-of-two, with whom the Burtons are now in regular contact.

Over time, the outcome of their decision has proved a comfort. "When a child dies, you are full of grief and wrapped up in that," says Nigel. "But as time goes on, you're able to look back and see that at least some good came out of that death. It wasn't just a 16-year-old lad's life wasted, and we're very proud of Martin for what he was able to achieve."

Nigel understands how difficult it can be for families to agree to organ donation.

"You have to decide very quickly - it all has to take place within a matter of hours," he says. "It's so easy to say no, because you want it all to go away. We've talked to families who have later regretted that decision.

"That's why we try to encourage families to talk about organ donation early on. Have those conversations now, when you're rational and your mind's not closed down because you're going through an absolute nightmare of grief."

Nigel and Sue now volunteer for the Donor Family Network (donorfamilynetwork.co.uk), a charity which supports donor families, and works to promote the importance of donation.

Their message - to encourage families to talk about their wishes to be organ donors - is also one of the key campaigns of National Transplant Week.

Sally Johnson, director of organ donation and transplantation at NHSBT, says: "The number of people waiting for a life-saving transplant would be dramatically reduced if more organs were available. This is why we need people to tell their loved ones they want to be an organ donor so that, should the time come, their decision will be honoured."

The waiting list Another crucial aim of the campaign is greater awareness about the dire shortage of organs and its human impact.

Stories like Amanda Fraser's are relatively rare - most people on the waiting list have long-term illnesses. Sometimes, a transplant might be their only chance of a quality of life - for somebody on kidney dialysis, for instance - or it could be their only hope of surviving to adulthood.

Stacie Pridden, who has pulmonary hypertension, has been waiting for a new heart and lungs for 14 months.

"I've known since I was 11 that I'd need a transplant at some point," says Stacie, 22. "The drugs are getting better for people newly diagnosed, which means you might not need a transplant as young. I was just a bit too early."

A double lung transplant is a massive operation with considerable risks, but for Stacie it's the only option.

She admits that when she first went on the waiting list, she'd jump every time her phone beeped - in case it was that all-important call from the hospital.

In May, she had a false alarm. "I found out when I got to the hospital that the lungs were no good so I was sent home," she says.

"It's always at the back of my mind that I could get a call at any moment. I have to make sure I have a bag packed at all times, and I can't be too far from home without letting the hospital know. I can't go abroad on holiday."

Stacie has been keeping a blog about her experiences (stacie-lifeisworththefight.blogspot.co.uk), highlighting what life on the waiting list is like.

Her writing is inspiringly positive, and Stacie's counting her blessings.

"We got told I wouldn't live to five, so the fact I'm 22 is a massive bonus," she says, though she admits she dreams of travelling abroad, and being able to see her nephews grow up. "And simply be able to walk up a road without being in pain and having to stop every 10 metres!" she adds.

"I'm a common blood group and, although that should essentially mean more donors, it also means more people similar to you are waiting," says Stacie. "And there just aren't enough people donating."

:: National Transplant Week takes place on July 8-14. For more information, or to join the Organ Donor Register, visit www.transplantweek.co.uk