Belfast Telegraph

Fighting spirit of Northern Irish woman Karen so clear despite last minute lung transplant blow

By Stewart Robson

A Fermanagh woman who suffers from a rare genetic lung disease says she has no choice "but to fight" as she awaits a life-transforming double transplant.

Karen Lyons, who receives oxygen 24 hours a day, was flown to a specialist hospital in Newcastle upon Tyne earlier this week in the hope of receiving new lungs.

Three days ago she believed a match had been found, but the organs were deemed too large for the 30 year-old's body.

"On Wednesday a match came but they were way to big for me," she said. "I'm just glad they got transferred to someone else. The right pair will come and they will fit me and change my life."

Ms Lyons was living in Australia with her fiance Greg Piergrosse, where she was in the process of applying for a partner visa that would allow her to become an Australian resident.

In a routine tuberculosis check-up for the visa, she found out that her lungs were severely scarred, and she decided to return home to Northern Ireland.

"I thought I should get myself checked because my sister Christine had passed away and I thought it may be something similar," Ms Lyons said.

"I had a biopsy in Belfast and they found scarring on my lungs but were unsure what it was, but I started declining and was getting more restless. The test came back positive for pulmonary surfactant metabolism dysfunction type 2.

"My family then ended up being tested and it was found that my mum was a carrier of the disease and that my sister actually had the same condition. We now know that was the cause of her death. The test wasn't available when she was alive so she was being treated blindly. Christine was just too weak and sick to get a transplant."

Seven weeks ago Ms Lyons' condition deteriorated and, after tests at the South West Acute Hospital in Enniskillen, doctors noticed that the area around her gallbladder had become inflamed. "When I arrived in the hospital they gave me a full body MoT and found a gallstone. They did an MRI scan on my gallbladder, but in the process doctors found a clot in my heart.

"My gallbladder had turned septic and because of the fluid in my lungs it put pressure on my heart, which was failing. I spent five days in the intensive care unit. Eight litres of fluid was drained from my lungs."

However, despite the wait for an organ match, she remains upbeat.

"My whole thought process on everything has just flipped. I only look at positives. I could have died but I'm now going to get the transplant I need and I'm so lucky."

Greg also thanked well-wishers, and said plans were being made after his fiancee's recovery to rearrange their wedding, which had to be cancelled two weeks ago.

To follow Karen's story, visit

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