Noreen is hoping for a transplant
Birdhill woman living with the rare disease
A Birdhill woman who has been diagnosed with a life-threatening illness is hoping to get a lung transplant that could prolong her life.
Former HSE worker Noreen O’ Carroll’s world was torn apart when she was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2015, a relatively rare condition that up to 1,000 people in Ireland struggle with every day .
Life expectancy at the time for people with the condition was one to three years when Noreen (63) was first diagnosed. But seven years later, she lived to see her beloved first grandchild – Pixie – arrive into the world nine months ago.
New drugs, costing €40,000 a year and paid for by the state for those affected, have emerged and given Noreen and others a whole new life. However, the effectiveness of these miracle drugs is limited and she eventually needs a transplant.
Discovering that there was very little support in the Midwest for people with the same condition, Noreen decided to start a support group in the area four years ago. The group turned out to be a real lifeline for her personally and for others who joined.
“Doctors don’t really know the cause of the disease, but it’s life-limiting and there’s no cure,” says Noreen, who first felt a cackling in her breath after waking up in the morning. .
“I was 57 when I was diagnosed and that was strange in itself because the disease mostly affects men in their 60s,” she reveals.
Two years later, the difficulties of trying to cope with his condition led to the decision to take early retirement from a senior job after 27 years working in the health service.
“I didn’t know anything about the disease and had never met or known anyone who had the disease and that’s why I decided to start the support group,” says Noreen.
The group has provided help, comfort and consolation to members, including Noreen herself.
“I remember a gentleman who came to the first meeting and who was after having had a lung transplant. I thought to myself, “I might not be dead and buried in three years after all” – it was just amazing to find out that a transplant could give me new life.
Noreen, a mother of two adult children, says the family support is wonderful, but the group provides the added comfort of being able to share experiences with others living with the condition. “You can talk to other people who really know your day-to-day struggles and the difficulties often encountered negotiating medications and other supports,” she says. “Some people don’t even know they can be referred for a transplant assessment and where to go to get that information. »
According to her, being part of the group makes it easier for people to adapt. “You know what to expect. You get to know what you are entitled to and the overall experience is much more positive. I think it’s more difficult for those who are service driven only.
Last Sunday, Noreen was part of a small group who organized a 100km motorbike ride which raised over €3,000 for the Irish Lung Fibrosis Association (ILFA). Among those who showed up to participate were comedian Pat Shortt, as well as Noreen’s own husband, Dermot, and a group of his friends – all bikers who spend many weekends participating in charity rides across the country – and who finally decided to host one of their own, starting at the Roundhill Bar near Birdhill. Among those who participated was a man with the disease who underwent a transplant and whose life was greatly improved. “He came with his bike and he looked fabulous and four members of our support group also had transplants, so there’s always hope that I too will be fit for a transplant,” says Norean.
ILFA as a charity depends entirely on donations. He plays a huge role in helping to support people like Noreen and others with the disease.
To find out more about the association and get a contact number for the support group in the Mid-West, go to https://ilfa.ie/