‘It was distressing being told that I could count my remaining years on one hand’

During a 15-minute conversation with a consultant, Noreen O’Carroll (58) recalls the moment she was given a life expectancy of two to five years.

“It was extremely distressing being told that I could essentially count my remaining years on one hand,” she says.

This was June 2015. From Bird Hill, Co Tipperary, she had been experiencing a persistent cough which led to lung infections and pneumonia. At this point, she had been living with bronchiectasis, an obstructive lung disease, for three years. She was admitted to St James' Hospital for a CAT scan which confirmed the progression of her existing condition to Idiopathic Pulmonary Fibrosis (IPF).

O’Carroll, who had never heard of IPF before says, it became difficult to hear anything else once the consultant referred to her condition as “life limiting”.

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She describes the next six months as a blur.

IPF is a lung condition which causes progressive scarring and fibrosis of the lungs. Symptoms include shortness of breath, acid reflux and pulmonary hypertension. Falling oxygen levels in the blood causes fatigue, resulting in a lack of concentration. In addition, some patients experience thickening on their finger tips and a dry, hacking cough. The cause of the chronic condition is unknown. About 1,000 people in Ireland live with IPF, which is usually diagnosed in people over 50. It is more common in men and older people.

After discovering the Irish Lung Fibrosis Association (ILFA), O'Carroll went along to one of their information meetings. She recalls what she saw at this first ILFA meeting. "Men and women in their 70s and 80s were walking around with oxygen tanks. At one point, a lady accidently bumped her oxygen container against my chair and I panicked. I wanted to run out of the place."

The meeting was helpful though. “It gave me huge hope as well as answering some of my questions.”

Medication helps to slow down the progression of her condition, but “medication was definitely difficult. I suffered from severe exhaustion.”

Many people with IPF require a single or double lung transplant which improves quality of life and life expectancy. O’Carroll knows this might be a possibility for her, but for now she is doing well and managing her condition. She talks about the importance of research and staying as informed as possible. “At some point you have to take control and not let the diagnosis define who you want to be.”

When O’Carroll was first diagnosed, she found it difficult to talk to her friends and family about her illness. “I just couldn’t find the words.”

Support group

Two years later, she became an advocate for IPF. She now gives talks about her experience for the ILFA. She says telling her story helped her “to regain control of my situation, to a certain extent”. She finds the most solace in talking to others with her condition as they understand more than most. She set up a support group in her local area where they meet once a month to compare notes on their shared experiences.

She describes her family as her biggest source of support. “One of the most difficult things was casting aside my own upset and fears.” O’Carroll had to think of her two children – “after all it’s a tough journey for them too.”

When she decided to take part in the Limerick Ladies Mini-Marathon, the event quickly became a family affair. Her son Steven wore a wig and took part as “Stephanie”. O’Carroll’s mother (83) also wanted to take part. She was given the role of official tea maker instead. O’Carroll talks about the benefits of finding joy in life, keeping a good sense of humour and always having something to look forward to “no matter how big or small”.

She retired from the HSE last year after 30 years "to give her illness the attention it needed" and is now making the most out of the free time. She enjoys yoga, meditation and continues to make plans for the future. Last year she headed off on an adventure with her daughter – they travelled around Asia, including Thailand and Indonesia.

O’Carroll thinks it is just as important to look after your mental health as your physical health. “It was invaluable for me to see a therapist and work through all the emotions.” She recommends others to do the same. “Therapy is also a great way for finding a positive headspace, a lot of people shy away from it and try to manage on their own but it can really only do good.” She also stresses the importance of talking to other people and remembering that you are not alone.

Creating positivity in her life and focusing on the present are both helpful practices for her. “I try to be positive but of course I have good days and bad days.” To anyone struggling with coming to terms with a diagnosis she has this to say: “The biggest part is acceptance. Of course your life is going to be different but you still have a life and that’s the most important thing.”

She has some advice to those recently diagnosed. “It is important to take things one day at a time. It can be very isolating, so talk to others, stay as informed as possible and link up with services.”