Patients reveal transplant fears

Published: Monday 15th December 2014 by The News Editor

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This Christmas, two strangers will sit at opposite ends of England waiting for telephone calls.

Father-of-three Choudry Mohammed Ikram, 49, from Leeds, has been waiting on his call for four years. December 25 is not a day Mr Ikram, a Pakistan-born Muslim, celebrates – but he will take a Christmas miracle if it’s on offer.

Katie Quist, on the other hand, would be celebrating if she didn’t have to work. But she said that, i f her phone were to ring: “H onestly, I think I’ll forget that it’s Christmas.”

Mr Ikram and Ms Quist are on two sides of the UK organ shortage: h e is waiting for a kidney, and she has the heavy task of helping tragedy-struck families as they make the decision to donate a loved one’s organs.

On any given day in the UK, nearly 7,000 people will be hoping for a transplant, according to the NHS, and t hree will die waiting.

Ms Quist is an NHS Blood and Transplant specialist nurse in London, one of a network of nurses who work with families of potential organ donors, giving them guidance and information.

The worst-case scenario is not that a family simply refuses to sign off on organ donation, she said. ” We do understand that donation isn’t right for everybody.”

The nightmare is that a family has no idea what their loved one might want, and meanwhile the clock is ticking. “Sometimes you can just see it on their faces, the panic,” Ms Quist said. “It’s so hard for those families.

“Most people, I think, don’t like to think about their death, or if the worst should happen to them … For those families who have had just a one-sentence conversation – ‘You know, I wouldn’t mind’ – it’s so easy for them to say yes and know that they’re doing the right thing.”

In her experience, many families who are unsure err on the ‘safe side’ by deciding not to donate their loved one’s organs.

“If they don’t have a strong opinion on it and they don’t know what their family member wants, I think they often are afraid to (donate),” she said.

Even Mr Ikram – a man who is keenly aware of the question of organ donation, and spends every other day making the six-hour round trip to hospital for the dialysis treatment that keeps him alive – is not sure whether his wife would want to be an organ donor, if something were to happen to her.

“She has always said she’s willing to give a kidney to me,” he said. “At the end of the day, if my family want to help me, then surely they will be willing to help others.”

But he thinks he will ask her, now.

Mr Ikram is quick to point out that he is thankful for what health he still has.

But every year that he languishes on the kidney waiting-list means hours away from his children.

He has not had a holiday in seven years – even a trip to London can only last a day, since he needs to be near his treatment centre. Members of his extended family in Asia have died before he was able to pay them one more visit.

A new kidney would mean a road-trip at last, maybe a return to the civil engineering work he loves. “I’m quite a fan of Bear Grylls, I’d love to do the things that he does,” he mused.

Vanessa Bradley, from Twickenham, south-west London, had no such woman-versus-wilderness ambitions before her transplant came through.

The 42-year-old wanted the simple things: to go to work; to see out another year; to forget the terror of finding herself so weak and breathless while walking home one day that her husband had to carry her.

When she first began to get sick she was fit, an army reservist, and when she noticed her regular gym workouts were becoming more punishing she thought it was an unfortunate side-effect of leaving her 20s behind.

But her condition went downhill, rapidly.

“They warned me that it was a terminal illness, there was nothing they could do, only slow it down,” she remembered.

The procedure that saved her – a UK first for people with severe pulmonary arterial hypertension – also left her in hospital for six months.

This will be her first Christmas at home since her ground-breaking double lung transplant in 2013.

So many of her friends will not be around to celebrate these holidays, she said: ” It’s probably in the double figures, now, the number of people I know who’ve died waiting.”

Ms Quist knows that if she does get a phone call over Christmas – and she most likely will – it will mean terrible loss for one family, and great hope for another.

“When I worked last New Year’s and we found a donor, that was a family that unexpectedly and very tragically lost a very young member of their family.

“They sat with their family member over midnight, and then they left. And they knew it was the last New Year’s they would spend together. It was incredibly sad,” she said.

“But on the other side, the next morning, there were four people out there who actually had the chance to live another year. Before that they would have been starting the new year wondering if they’d make it.”

For those families who can say yes, it can offer a small square of redemption in a time of overwhelming sadness.

Though both sides of the transplant process remain anonymous, many recipients choose to pass along letters of thanks to the families of their donors.

“You speak to the families afterwards and they say, ‘The only positive thing in the early days was the letter you sent me. That was the only small, good thing,'” Ms Quist said.

“They lose someone, they lose control, they have no choice over that. When you ask them about organ donation you give them a choice. And it is a thing they can choose to do, a gift they can choose to give.”

:: Anyone wishing to join the NHS Organ Donor Register can visit, call 0300 123 23 23 or text SAVE to 62323. Those who sign up should let loved ones know their wishes.

Published: Monday 15th December 2014 by The News Editor

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