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Cystic Fibrosis sufferer to tackle 13-mile fundraiser

Story by Claire Elliot

 

 

 

ONCE too weak to even walk up stairs, cystic fibrosis sufferer Robbie Black was not expected to see his 17th birthday.

 

But now almost 30 - and an incredible 13 years after a life-saving heart and lung transplant - he plans to run a half marathon in a bid to help others with the disease.

 

The 29-year-old, who also survived two heart attacks when he was just 26, is one of only around a third of patients to survive more than 10 years after the transplant.

 

And remarkably he is as fit and healthy today as he was just after the operation, carried out by surgeons at London’s Great Ormond Street Hospital.

 

Mr Black, who has lost several friends to the killer lung disease, now plans to put his organs to the test by running the Inverness Half Marathon to raise funds to help find a cure.

 

He said: “The transplant changed my life and if I hadn’t got it I wouldn’t be here.

 

“I was two months short of my 17th birthday and doctors said I wouldn’t make it to 17. I got the transplant just in time – I don’t think I could hold on any longer.

 

“I was bedridden and on oxygen 24 hours a day.

 

“It’s a horrible disease and in the last year or so I have known several people who have died with it and they were all about the same age as me. It’s definitely starting to hit home a lot more.

 

“The best age most people can hope to get to is 30 so a cure would be great. I just want to raise as much money as possible.”

 

Mr Black, a restaurant supervisor, still needs to take 40 to 50 tablets a day to stop his body rejecting the implanted organs.

 

But he goes to the gym three times a week, plays badminton, and is fit enough to enjoy three rounds of golf a week when he has the time.

 

He even completed the Inverness 10k in just one hour a few weeks ago, has got his golf handicap down to 18 and, is now busy training for the 13-mile run in March.

 

He said: “When I did the 10k my chest felt fine. Within two minutes I was back talking and chatting away. It was my legs that were wreaked.

 

“I know I am very lucky. I can pretty much do everything and I know it helps me, like it does everyone, to keep fit.”

 

Mr Black was first diagnosed with cystic fibrosis when he was only three months old.

 

It left him tired and breathless for much of his childhood, which was spent in and out of hospital and, by the time he was 16, he was virtually bedridden.

 

He was put on the transplant list but, just weeks away from his 17th birthday and dependent on oxygen 24 hours a day, doctors warned he would not survive without a transplant.

 

There were even talks about admitting him to a hospice, when a donor was found just in time.

 

Mr Black said: “It took 15 months to find a donor. By this point I was too ill to care. But it was a worry for my parents who had to look after me.

 

“I could barely walk up the stairs, I was so tired from being ill. For the last couple of months before the transplant I would just stay downstairs on the couch on oxygen.”

 

Two days after the life-saving surgery, however, Mr Black was up on his feet walking, and breathing on his own for the first time in months.

 

“It was unbelievable,” he said. “Before I could hardly breathe and I was coughing all the time and all of a sudden I was breathing normally. Even being able to walk down the hospital corridor was something special.”

 

Since the operation he has enjoyed a normal life.

 

But aged just 26, he suffered two heart attacks within half an hour of each other, which was though to be a result of the gradual deterioration of the organ.

 

At first he thought his blood sugar levels were low as the condition, which also affects the pancreas, has left him with diabetes.

 

But doctors at Raigmore Hospital, Inverness, confirmed he had suffered a heart attack and he suffered a second one just 30 minutes later.

 

He was then airlifted to Aberdeen Royal Infirmary where surgeons operated to unblock his right artery.

 

He said:  “It was a bit of a shock because it’s not something you expect to happen when you are 26 years old.”

 

“But I know I am very lucky and for 13 years I have pretty much not had any major setbacks. I’ve had no rejection to the transplant.”

 

Mr Black takes a daily cocktail of drugs to stop his body rejecting the implanted organs, taking between 40 and 50 tables a day.

 

But he said: “It’s probably better than the alternative to not getting the transplant.

 

“It has changed my life – the difference is 100%.

 

“I don’t know what the future holds but I am lucky enough to have a future and I’m just making the most of it.”

 

He still gets hospital check-ups every six months but to date doctors are happy with his progress.

 

He now hopes by raising vital funds to help research a gene therapy cure for the lung disease it can help other sufferers in the future.

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