Noreen hopes for a transplant

Birdhill woman living with the rare condition

A woman from Birdhill who has been diagnosed with a fatal 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) back in 2015, a relatively rare condition that up to 1,000 people in Ireland struggle with ever day.

Life expectancy back then for those with the condition was one to three years when Noreen (63) was first diagnosed. But seven years on, she has lived to see her first and adored grandchild - Pixie - arrive into the world nine months ago.

New drugs, costing €40,000 a year and paid for by the State for people with the condition, have come on stream and have given Noreen and others a whole new lease of life. However, the efficacy of even these wonder medicines is limited and ultimately she needs a transplant.

Discovering there was very little support in the Mid-West for people with the same condition, Noreen decided to set up a support group in the region four years ago. The group has proven to be a real lifeline for her personally and for others who have joined.

“Medics don't really now the cause of the disease, but it's life limiting and there is no cure,” says Noreen, who first experienced a cackling sound to her breath after waking in the mornings.

“I was 57 when I was diagnosed and that was odd in itself because the disease mostly affects men in their seventies,” she reveals.

Two years later the difficulties of trying to cope with her condition led to a decision to take early retirement from a highly responsible job after 27 years working in the health service.

“I knew nothing about the disease and had never met or known anyone who had the disease and that's why I decided to set up the support group,” Noreen explains.

The group has brought help, comfort and consolation to members, including Noreen herself.

“I remember one gentleman who came to the first meeting and who was after having a lung transplant. I said to myself, ‘I may not be dead and buried in three years time after all’- it was just amazing to discover a transplant could give me a new lease of life.”

Noreen, a mother of two adult children, says family support is wonderful, but the group offers the additional comfort of being able to share experiences with other people who live with the condition. “You get to talk to other people who really know your day-to-day struggles and the difficulties often encountered in negotiating medication and other supports,” she says. “Some people don't even know they can be referred for a transplant assessment and where to go and get that information.”

Being part of the group makes it easier for people to cope, she feels. “You know what to expect. You get to know what you are entitled to and the experience overall is really more positive. I think its harder for those who are just led by the services.”

MOTORBIKE RIDEOUT

On Sunday week last Noreen was part of a small group that organised a 100km motorbike ride which raised in excess of €3,000 for the Irish Lung Fibrosis Association (ILFA). Among those who turned up to take part was comedian Pat Shortt, and indeed Noreen's own husband, Dermot, and a group of his friends - all bikers who spend many weekends taking part in charity rides around the country - and who finally decided to organise one of their own, starting out from the Roundhill Bar, near Birdhill. Among those who took part was one man with the condition who had a transplant and whose life has been greatly enhanced as a result. “He came with his bike and he looked fabulous and four members of our support group have also had transplants, so, there's always hope that I too will be suitable for a transplant,” says Noreen.

The ILFA as a charity depends totally on donations. It plays a tremendous role in helping to support people like Noreen and others with the condition.

further details

To find out more details about the association and to get a contact number for the support group in the Mid- West go to https://ilfa.ie/