‘My donor and his family are always in my prayers’

Jade Allistone, Eastbourne heart transplant girl.
Jade Allistone, Eastbourne heart transplant girl.

THIS week is National Transplant Week, with that in mind the Herald spoke to some local people who have experienced first hand the agonising wait for a donor and the new lease of life a transplant can provide.

“I AM a nurse and I thought I knew everything about organ donation,” says Julie Allistone, whose daughter Jade suffered a heart attack and was told she would need a new organ. “Actually,” her mum continued, “I knew very little.”

Jade (right) was just 11 when she began to experience pain in her chest. She was seen by her GP, who said there was nothing wrong.

With no obvious reason behind the discomfort, Jade and her family hoped it was something she would get over. Even in their worst nightmares they could not have envisaged what was to come.

She had a massive heart attack and was rushed to hospital where she stayed under observation until being allowed home for Christmas.

Things looked to be improving, with Jade apparently on the mend, until, as her mum explained, the family was given a bombshell out of the blue.

“We went back in January for what we thought was a routine outpatient appointment but by the end of it we had been told she had just months to live. We were told she could drop down dead at any moment. We had to live with that.

“Sat there with the transplant team in front of me, telling me the only hope for my daughter was a heart transplant and then hearing about all the complications which could occur, I cried my eyes out.”

Jade though was relatively lucky. She waited just four days before a suitable heart became available and, 16 months on, things are going well.

“After 15 months of setbacks it now looks like Jade is on the road to recovery. She is having less time off school and has her life back. She is getting stronger but we still need to be alert to infections going round school.”

And, of course, like most transplants, her organ has a limited shelf-life. She will most likely need another four or five operations over the course of her life. This, says her mum, is an unavoidable fact which looms large over Jade and her family.

“I have certainly had to learn to be positive,” Mrs Allistone says, “Jade often talks about doing things when she gets older, getting married, becoming a teacher and having children of her own.

“I used to think to myself that it was more of an IF rather than a WHEN because of her condition. But you have to just get on with things.

“We have had to explain everything to Jade because she is at an age where she can have an input into things and understand what is going on.

“When I told her she would probably need another heart she said, ‘When I am 70?’ I had to say no, then she said 60, then 50, then 40. It broke my heart. I just said, ‘Not for a while yet,’. The chances are she will need one in around 15 years.”

One thing Mrs Allistone hopes to achieve by sharing Jade’s story is to encourage more local people to sign up for the organ register. Recent figures shows while there are currently around 1.5 million people on the south east coast who are on the donor list, 23 people died in the last 12 months while waiting for a life-saving organ.

Nationally, that figure is three people every day dying before the necessary organ becomes available. And the way the list operates can see people put on it, get slightly better, taken off the list and then need to go back on it but at the bottom of the pile.

In the south east around 35 per cent of people are registered donors, although recent surveys show 89 per cent of people would happily accept a transplant if they needed it. The upshot is there are simply not enough organs to go round. And that is where National Transplant Week comes in.

Locally there are 397 on the waiting list for vital organs and, according to Professor William Roche, the medical director for NHS South of England East, the only way for that to improve is for more people to sign up.

Speaking to Herald he said, “Registering as a donor will cost you nothing but you could very well save a life. Many people have the generosity and intent to become donors but don’t get around to it. It is actually very simple to register and we need the numbers.

“The more people registered as donors, the more chances there are for the transplant teams to find a suitable match for those whose survival depends on these organs.”

It is certainly a sentiment echoed by another Eastbourne local who benefited from a donor. Nicola Langlands, born in 1976 with half a working heart, went on become just the 12th child in the UK to undergo a heart and lung transplant in 1989 and, 23 years later, is still grateful for the new lease of life she was given.

“Some people don’t get a second chance like I did. I have made sure I have lived my life to the full, enjoying each day and making the most of what I have.

“I wouldn’t have been able to do all I’ve done if some lovely family had not be kind enough to donate their son’s heart and lung. Living with someone else’s heart and lung was difficult as I know that sadly someone had to die to save my life. It had an effect on my spirit because I know while my family still had me, another family out there somewhere had lost their love one. Each day my donor and his family are in my prayers.”

In 1998, Mrs Langlands had her first child, Megan - making her the first person in the UK to have a heart transplant and give birth naturally.

Since then she has gone on to form her own support group for people who have received transplants and wants to encourage as many people as possible to sign up to the register.

“There are lots of people out there who don’t have a clue about organ donation,” she said, “It needs to be in the public eye more and brought into schools.”

To that end she has produced a children’s book all about transplants and donations and has launched a new puppet, Alfie Aftercare, to help introduce youngsters to the trials and tribulations that often come about after a successful operation.

Another local Nathanael Adams, had to take to social networking website Facebook to search for a suitable donor after being told by doctors he would need a second transplant. The 29-year-old has been waiting seven years and has to undergo the most painful type of dialysis and is restricted to just 500ml of fluid a day.

He said, “To get another kidney would change my life dramatically. I would no longer have to go to hospital three times a week for dialysis, I’d be able to find myself a job and generally enjoy all that life has to offer again.”

“I am amazed by the people who donate their organs, be it while they’re alive, or after death. If it weren’t for them, I would not be here today.”

Mrs Allistone summed the situation up perfectly. “I think the national register should be opt out. It is such a waste for people not to donate their organs once they are dead. They are left to rot in the ground when they could be used to save a life.”

To add your name to the register 0300 123 2323, text JOIN to 84880 or visit www.transplantweek.co.uk.