Cork woman: "My greatest wish of all is that they would find a cure for lung fibrosis…" – EchoLive.ie

Finula Rice, World Lung Day
FINULA Rice who lives in Ballincollig, was diagnosed with lung fibrosis secondary to systemic sclerosis in 2019.
What were her symptoms?
“I started to notice something was wrong around 2016,” she says.
“I was coughing a lot, a dry cough, which could interrupt me mid-word, let alone mid-sentence. I was always a good walker, but gradually found I could not keep up with my friends, becoming quite breathless.
“I thought perhaps my fitness levels had dropped, but couldn’t understand it.
“In 2019, on holiday with friends, not only could I not keep up walking with them, but I couldn’t walk up any incline or steps without becoming alarmingly breathless.”
Something was badly wrong.
“I thought it was my heart so, upon my return, I made an appointment to see a consultant who was treating me for an auto-immune condition,” says Finula.
“He sent me for a high-resolution CT scan, which showed the lung fibrosis, which is scarring (hardening) of the lungs. I had no idea what lung fibrosis was, so I googled it. My world fell apart. The prognosis was not good. It is a progressive, debilitating, terminal condition that causes respiratory failure. It has a worse prognosis than many cancers. There is no cure.
“A lung transplant is sometimes the only option in suitable candidates. I was sure I had very little time left.”
Finula was scared.
“It was, and is, scary,” says Finula.
“I was referred to a respiratory consultant. He organised an X-ray and pulmonary function tests, which demonstrated a decline in my lung function.
“Because my lung fibrosis was caused by an underlying condition (systemic sclerosis), it was decided that I continue with an immuno-suppressant but it was changed to one more commonly used when lung fibrosis is in the mix. I was prescribed an inhaler and asked if I exercised and to keep it up.”
Then Covid arrived.
“During Covid, I treated myself to a newspaper delivery and it was in mid-2020 that I saw a small advert on the back page for the Irish Lung Fibrosis Association (ILFA) for an upcoming event. I can’t remember if I dialled a number or if I emailed,” says Finula.
“All I can say is that ILFA has been a lifeline to me. I knew nothing about supports, rehabilitation classes, respiratory nurses and much more. They provided me with information packs, invited me to patient information days and included me in their weekly exercise for lung health classes on Zoom. I was able to get involved in yoga classes too and the Sing Strong programme for lung health.”
What does the ILFA do?
“ILFA is a charity, dependent on voluntary donations. Not only is ILFA of huge practical support to us lung fibrosis patients, but a huge psychological help also,” says Finula.
“It was the first time I got to speak with people who actually understood. As one person said to me, “lung fibrosis is an illness nobody gets, unless they get it”.
What is life like for Finula on a daily basis?
“On a day-to-day basis, lung fibrosis affects my breathing,” says Finula.
“I cough and suffer from unnatural fatigue. I actually find the fatigue the most distressing symptom at this stage of my progression. The coughing can be embarrassing, especially so during Covid, and still is. I’m afraid people will think I’m contagious.
“I’m lucky so far in that I’m not on oxygen yet, which I know, no matter how helpful, I would find restricting. I’m injecting myself weekly with an immuno-suppressant and taking an inhaler. I have six-monthly X-rays and pulmonary function tests and a consultation with the respiratory physician.
“I have recently been referred to Cork University Hospital and met with a consultant attached to the respiratory department. CUH is one of the specialist centres for lung fibrosis in the country.
“I am hoping that this will lead to me being treated by a multi-disciplinary team and having access to a respiratory nurse who, my fellow patients tell me, is an invaluable resource.”
Finula’s world changed as a result of her illness.
“My life has shrunk as a result,” she says. “I would have been very socially active, going to concerts, live sessions and dining out. I was a member of Cantaírí Mhuscraí, a community choir in Ballincollig, and I loved it. Because even a bad chest infection could cause me harm, I had to give up choir and the great social life that went with it.
“Ironic, isn’t it, that singing is good for your lungs, yet I am afraid of the large group at rehearsal in case I pick up something. It’s the same with eating out and going to concerts.”
Finula has wonderful support.
“I have wonderful friends who have been very patient, always including me in their plans, even though they know I’ll probably decline,” she says.
“We were able to keep up the book club on Zoom.
“I worked in the HSE but retired in 2011 on health grounds. I have kept up contact with my former colleagues, who are dear friends. Most of us started out around the same time and I met them recently for the first time since Covid.
“The only family that I have are my 88-year-old dad and my brother, both living in Portlaoise, whom I love dearly. I am up and down to them regularly.”
What are Finula’s hopes for the future?
“My hopes for the future would be that there would be more awareness of lung health and, in particular, lung fibrosis.
“Bizarrely, funding and support for lung fibrosis is not included in the National Clinical Care Respiratory Programme. Inadequate resources make it difficult to provide timely diagnosis and follow-up treatment. The lack of awareness is staggering.
“I believe there are over 200 types of lung fibrosis. Not being a medical person, I’m only aware of a few risk factors, such as smoking, auto-immune diseases, exposure to asbestos and dust, and for some there appears to be a family genetic link.
“Covid has caused lung changes in some people while, in most cases of lung fibrosis, no cause can be found. I do not know the full list of risks so I would implore anyone who feels something is amiss to get themselves checked out, especially symptoms of breathlessness and coughing.
“Try to stop smoking if you’re a smoker, get the appropriate ‘flu, pneumococcal and COVID vaccines. Exercise regularly.”
Finula is optimistic.
“My personal wish is to live as long as I can, as healthily as I can, to react positively to treatment and be independent always. 
“My greatest wish of all is that they would find a cure for lung fibrosis, if not in my lifetime, then surely for the next generation.
“All of this requires funding. Department of Health, please listen! I would urge anyone engaged in fundraising activities to remember the Irish Lung Fibrosis Association, who sometimes are the only support a patient has.”
World Lung Day is on September 25.
Visit www.ilfa.ietarget=”_blank” rel=”noopener noreferrer”> or check out the Irish Lung Health Alliance’s ‘Top Five Tips to Love your Lungs’ at www.lunghealth.ie

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