Cystic fibrosis: Waiting for a new set of lungs

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Media captionMatt Lodge allowed BBC Inside Out West to film his journey as he waited for a new set of lungs

People suffering with cystic fibrosis can face a wait of several years for a lung transplant operation.

The condition affects the internal organs, especially the lungs, by clogging them with thick sticky mucus, making it hard to breathe.

About a third of patients die before they get a donor lung. Here is one patient's story.

May 2014

Matt Lodge, 23, from Bristol, had been on the critical list for two and a half years when he agreed to allow BBC Inside Out West to film his journey in May 2014.

Currently in England people have to opt-in if they want to donate organs when they die. Some campaigners are calling for an opt-out system to be brought in.

Mr Lodge and his family felt so strongly about the debate they agreed for the BBC to follow them regardless of the outcome.

He had to complete a furniture design course at home because he became too ill to continue his studies at university.

"My plan is to hopefully have a transplant, and get back to being able to work and to design," he said at the time. "It will allow me to get back to normal."

It was a race against time. Mr Lodge's condition was worsening. If he became too weak to endure the operation he would be taken off the waiting list.

11 June 2014

Mr Lodge got the call to travel to the Queen Elizabeth Hospital in Birmingham after a possibly suitable set of lungs became available. He said he had "mixed feelings".

He was ready to have the operation, but it was a tense wait while doctors decided whether the donor organ was suitable.

And then came the bad news. He was told the lungs were not of high enough quality and the risk of a transplant would be too great.

27 June 2014

Later that month he received another call as he was preparing to go to the Glastonbury Festival.

Again he travelled to hospital and again he was told the lungs were not suitable.

"It's the right decision, it's just frustrating," he said, as he headed off to the festival.

September 2014

Finally, a suitable donor was found and Mr Lodge, who was now 24, was called in for his surgery.

A difficult operation was complicated further because his old lungs were so badly damaged they had become welded to his ribcage.

But after many hours in surgery the operation was completed. Mr Lodge woke up with a new set of lungs and surgeons were happy with the way the operation went.

However, he was not out of the woods yet. He suffered some serious complications including a stroke, causing temporary paralysis and tremors.

November 2014

Seven weeks later things had improved. He was still in hospital and was recovering well.

"My friends say the biggest change is that I don't cough any more.

"And I can walk and talk [at the same time]. Before the operation I had to choose [to do one or the other]."

His mum Liz said: "He's a real fighter and he's come through it really well."

December 2014

Mr Lodge still has cystic fibrosis - the operation is not a cure, and it's likely he will need another transplant operation in future. A new set of lungs lasts for eight years on average. But, for now, his quality of life has been vastly improved.

"I've still got a long way to go but I can see the light at the end of the tunnel," he said.

"Hopefully, in a few more months I'll be feeling my normal self."

Follow Matt's journey on Inside Out: West on BBC One on Monday 12 January 2014, at 19:30 GMT, and on the BBC iPlayer after the programme has been broadcast.

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