Living with lung fibrosis: therapies and hoping for a transplant
‘It is a daunting experience but receiving a donated organ is the best present you’ll ever get’
Edna Powell: “I was very lucky that the donor lung was suitable for me.” Photograph: Shane O’Neill
Edna Powell (71) was diagnosed with lung fibrosis (also known as idiopathic pulmonary fibrosis) nine years ago. It’s a chronic condition in which the lungs become progressively scarred until they can work no longer. “I felt tired and breathless, but, initially, I thought it was part of the ageing process,” she explains.
Powell is an active person who liked walking and swimming but noticed being particularly breathless when walking up steps or on an uphill slope. She was diagnosed with the condition following a thorough physical check-up which included a CT scan and X-ray.
“I was prescribed medication to slow down the condition but I had ongoing infections and my lungs gradually started to harden up,” says Powell. It got to the stage that she needed to use oxygen at night or when she was out and about. She was accepted on to the waiting list for a single lung transplant.
“I got the call that a lung was available and I was very lucky that the donor lung was suitable for me and I was able to have the transplant. It is a very daunting experience but receiving a donated organ is the best present you’ll ever get.”
After a two-week stay in hospital, Powell recovered slowly at home and gradually returned to swimming and walking and part-time work as a psychologist.
She has received great support from her local branch of the Irish Lung Fibrosis Association and believes there is a great need for further research into the condition, which remains relatively unknown. “I knew that both my mother and my aunt died from the condition so there must be a genetic component to it. There is a new register now for people with lung fibrosis which should improve things.”
The Irish Thoracic Society is the national organisation of healthcare professionals caring for people with lung disease. At the launch of the new national register for patients with lung fibrosis, Prof Anthony O’Regan, consultant respiratory physician said that new therapies mean more hope for those with the condition. “Treating lung fibrosis has changed dramatically in the past decade with novel therapies and an increased rate of successful lung transplants. Early diagnosis and rapid referral to treatment is now more crucial because as lung fibrosis progresses, patients’ needs become more complex.”
Evelyn Cooper (77) was officially diagnosed with lung fibrosis in September 2016. “I was taken aback when it was discovered. A scan the previous year had shown a shadow on my lung but my lung function test was okay then,” she explains.
Cooper has many chronic conditions including diabetes, arthritis, tinnitus and polymyalgia. “Initially, my reaction was, “not something else!” But I have got my head around it now with the help of a counsellor. Sometimes, my breathlessness gets very bad when I’m walking but I’m not taking any medication for lung fibrosis at the moment,” she says.
Cooper is a retired nurse and says that the condition isn’t very well known. “I belong to the Dublin branch of the Irish Lung Fibrosis Association. We meet every month. I believe we just have to accept things as they arise. I don’t ask why me. If I have a bad day, I rest up and read and watch the television. I can still drive and get out and socialise and I help my daughter with my grandchildren who I love spending time with.”