Belfast Telegraph

It's a tragedy people are dying while waiting for a transplant, says man who needs new lungs

ADRIAN RUTHERFORD

A NORTHERN Ireland man with cystic fibrosis has said that it is "a tragedy" that people are dying while waiting for a transplant.

Daniel Gray was diagnosed with the condition at birth, and has been waiting for almost a year for donated lungs.

It comes as a report reveals how one in three sufferers will die while on the transplant list.

Only around 20% of lungs donated are actually used in transplantation in the UK, the Cystic Fibrosis Trust said.

The charity has called for an overhaul of the system to end the "transplant lottery".

Belfast man Daniel (24) called for an increase in the rate of transplantation, saying it would save lives.

"It's a tragedy that people die on the transplant waiting list if there are ways of overcoming the amount of organs that sadly get discarded," he said. "There is no doubt a change in transplantation rules and increasing the amount of lungs that get used could help save lives.

"Surely investing in the technology and training of staff would also save the NHS heaps of money in the long run too because then they won't have the likes of me visiting their hospitals every week."

The Cystic Fibrosis Trust said sufferers on the transplant list wait for more than a year – 412 days – on average.

Its report states that lungs from fewer than 25% of Donors after Brain Death (DBD) are used for transplants. Within the remaining 75% there are clinically viable lungs which are suitable for use.

It says more must be done to make the most out of lungs which are available.

Currently lungs are offered to the closest transplant centre, when a matching recipient has been identified.

However, the report's authors called for a new 'lung allocation system' that balances the needs of medical urgency and long-term outcomes.

"There is concern across the cystic fibrosis community about equity in lung allocation," the report adds.

"There is a perception that the likelihood of getting a lung transplant, and the time frames for this, vary according to where an individual is listed.

"A donated organ will not currently necessarily reach the most in-need candidate anywhere in the country."

Professor Andrew Fisher from the Institute of Transplantation, Freeman Hospital and Newcastle University said successful lung transplantation can transform the life of someone with very severe lung disease caused by cystic fibrosis.

"By increasing the acceptance of donor lungs that are currently available and directing them to those most in need, we will have the chance to make sure all those with cystic fibrosis who need a lung transplant get the opportunity to benefit from it," he said.

Ed Owen, chief executive of the Cystic Fibrosis Trust, said that for some people, a lung transplant is the only option available to prolong life.

"It's a scandal that one in three people are still dying on the lung transplant waiting list," he said.

Mr Owen added: "We are calling on all bodies responsible for transplantation policy to work with us and act on our recommendations to ensure those waiting for a transplant get the organs they so desperately need and to bring new hope to their lives."

 

BACKGROUND

More than 10,000 people across the UK suffer from cystic fibrosis, a life-shortening condition caused by a faulty gene.

It leads to a sticky mucus clogging the lungs and digestive systems which makes it hard for sufferers to breathe and eat.

Cystic fibrosis affects people differently. More than half of all people with cystic fibrosis can expect to live beyond the age of 41. This number is constantly increasing with improvements in treatment.

 

CASE STUDY: 'I just want my life back again and to be able to play sport'

Daniel Gray (24) from Belfast has been waiting for a transplant for almost a year.

He was diagnosed with cystic fibrosis at birth and, despite his condition, was extremely fit and used to play lots of football.

A few years ago his health took a turn for the worse and he lost most of his lung function.

He has to take oxygen overnight and consumes around 60 tablets a day. Daniel said: "I really miss being able to get out and do some exercise, I try to walk the dogs when I can." Daniel lives at home with his mum and little brother, who doesn't have cystic fibrosis, and the family are trying to live as normally as possible, not thinking too much about the wait or waiting for a call to come.

When it does come, because the operation will be at Newcastle's Freeman hospital he will have to be taken by air ambulance to get there.

Daniel has great hopes for his life once his transplant call comes.

"If I get my chance I want to travel to Asia with my friends, go back to college, get fit again, play sport, so much. I'm single so would love to meet someone when I'm well," he added.

"If I had a message to give it would be sign up to the organ donor list. I bet if you needed a life saving transplant you'd grab it with both hands. The more organs there are the more chance people have of survival."

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