Healthcare news

Fermanagh lung patient hails her 'hero' organ donor

A thumbs up from Karen Lyons who has hailed her organ donor as 'my absolute angel'

A Fermanagh woman suffering from a rare genetic lung condition has described how she now has a chance at life following the "selfless act" of her "hero" organ donor.

Karen Lyons (30), from Enniskillen, underwent a double lung transplant less than a fortnight ago.

She is believed to be the only person in Ireland and Britain suffering from a condition which means her lungs are not lubricated enough to allow oxygen to pass through properly.

Speaking from her hospital bed in England, where she underwent the operation, she said: "I would have died without them making that decision to gift their organs before they died."

It was around five years ago, during a routine tuberculosis check-up for a visa to become an Australian resident, that medics found her lungs were severely scarred.

The test came back positive for pulmonary surfactant metabolism dysfunction type two.

Her family were tested and it was found that her mother was a carrier of the condition, which had also caused the death of her sister Christine.

The scar tissue has caused her lungs to stiffen, making it difficult to breathe. Before her operation, she only had a lung function of 20 per cent and was receiving oxygen 24 hours a day.

The Co Fermanagh woman underwent the double lung transplant last week

Late last year, doctors also found issues with her gallbladder and a clot in her heart, which led to her spending five days in the intensive care. Eight litres of fluid were drained from her lungs.

A transplant was believed to be the best option for Ms Lyons and last month she was flown to a specialist hospital in Newcastle-upon-Tyne.

Her hopes of a match were initially dashed when it was found that donated lungs were too large for her body.

But on January 23, Ms Lyons and her family "got the call we've been waiting for for months" - a suitable pair had been found and she underwent the double lung transplant.

Two weeks on and she remains in hospital, but continues to document her journey on Facebook.

Speaking to The Irish News, Ms Lyons said the first few days had been difficult, but already she is seeing a difference.

"I'm struggling with my eyesight and tremors from the medication at the moment," she said.

"I had a few horrendous days of pain and really struggled - it was so hard I thought I was going to die. Since yesterday the pain has massively reduced and the remaining drains have come out of my lungs so a lot less pain.

"I'm not using any oxygen now - I did my first 100m lap of the ward last night with no oxygen, which was incredible.

"Now it's all about taking each day and seeing how my body reacts to these new drugs and lungs. They have to be so careful and keep an eye on everything and how all my organs and bloods are coping with it all.

"It will be weeks of learning all about my medication and new routines."

Ms Lyons said while she was taking each day at a time, she is hopeful for the future.

"I will move into the hospital flats with (fiancé) Greg in a few weeks' and be more like an outpatient and call in daily for them to see how I get on by myself," she said.

"I've no idea how long I'll be here as each day can bring a new problem but most definitely for another few weeks."

And in a message to her organ donor's family, she said she would be forever grateful.

"To the organ donor, my absolute angel and hero," she said.

"I would have died without them making that decision to gift their organs before they died.

The Co Fermanagh woman underwent the double lung transplant last week

"I know they didn't die for me and circumstances unfortunately made that their reality, but I do hope the family and they have peace knowing they've saved me and I will get to live on because of their selfless act."

To follow Ms Lyons story, visit For information on organ donation see or call 0300 123 2323.

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