Cork woman: Diagnosed with Cystic Fibrosis at 4, now I want to help others with disease

WHEN she was a child, Gwen Healy kept having re-occurring chest infections. She was just four years old when she was diagnosed with Cystic Fibrosis (CF).

Now aged 36, Gwen has been appointed patient liaison officer for the Southern region of Cystic Fibrosis Ireland (CFI) and says: “Being diagnosed with CF can be a scary time and people may not be aware of the supports and the contacts available to them.

“I always felt I’d like to volunteer for CFI and give back. There are new parents and newly diagnosed children eager to be involved.”

What does the service offer?

“The service is there to help new or existing people with CF to make contact with the branch in order to get support, information, or be signposted to other relevant agencies,” says Gwen, who lives in Ballincollig and who works as a community employment supervisor with the Mahon Community Development Project.

“I’m originally from Kerry,” adds Gwen, who is married to Padraic. “I moved to Cork for college.”

Gwen thinks back to those childhood days when she was suffering from frequent chest infections.

“I had a sweat test to diagnose the condition. I was in and out of hospitals a lot in Kerry and in Dublin, often for weeks at a time.

“In Junior Cert, I spent just two months in school, the rest of the time in bed either at home or in hospital.”

Gwen did well in her Junior Cert, even though she was absent from school for long periods at a time.

“The school was very supportive,” she says. “I missed a lot of school during my Leaving Cert year as well.”

Gwen missed out on other things besides school because of CF.

“I missed out on the social side of things too,” she says.

“I couldn’t always go out with my friends. I was on a lot of medication, and I had a lot of physiotherapy.”

Did she mind missing out?

“I knew no different,” replies Gwen.

“My friends were very supportive and I did what I could do. I knew my limitations. I wasn’t going to do marathons but I could cheer from the sidelines.”

Gwen again performed well in her Leaving Cert, allowing her to continue studies in her chosen course at UCC, on the Early Childhood Programme.

And despite having been on oxygen in her final years of college, and despite having to spend several months studying at home, Gwen graduated with first-class honours.

Gwen says: “CF has played a significant part in my life since my diagnosis at four years of age.

“I’ve lived with a routine of physiotherapy, medication, hospitals and illness throughout my life while also trying to navigate education, friendships, independent living and employment.

“When my health deteriorated significantly in 2008 and I needed full-time oxygen after a collapsed lung, I was placed on a transplant list.”

A double lung transplant is where both lungs are removed and replaced with two donated lungs. This is usually the main treatment option for people with Cystic Fibrosis or COPD.

Gwen played a waiting game for two years before she got the call that a donor had become available.

“It was a huge strain,” she admits.

“I waited by the phone and every time it rang I thought this could be the call.

“The anticipation by me and my family was a strain and very stressful. I was on oxygen full-time and that was scary.”

The call finally came.

“I was lucky to get the double lung transplant in 2010,” says Gwen.

“It was a gift of life. I went to Newcastle for the operation. My mum came over post-operation, and my dad was back and forth. Family members visited me in hospital.

“The lung transplant was the best thing that ever happened to me and I made a good, strong recovery.”

Gwen’s world changed.

“I went on to do an undergraduate degree and Masters in UCC, and I was able to live independently without full-time oxygen. I kept up regular exercise to increase my fitness levels. I had had enough of sitting around on couches and hospital beds,” says Gwen, who is one of about 1,200 adults and children living with cystic fibrosis in this country today.

She finished her thesis and got on with her life. CF might have dominated her life but she did not let it beat her.

“I met my husband in UCC and we got married in 2016 - we kept it local! We bought a house in Ballincollig. I’ve never looked back!”

Gwen has gone from strength to strength.

“I now have the ability to walk further than a few feet without getting out of breath or be attached full-time to an oxygen machine. I now have the energy to take my dog for a walk or walk on the beach and enjoy life to the best of my ability.

“Growing up, I didn’t get involved in team sports as much as I would have liked, GAA for example, because it would have been too much pressure physically. I had a strict regime of nebulisers, medication and physiotherapy. It was all I knew as well.

“I make the best of what I have,” adds Gwen, who has a positive outlook on life.

But a transplant isn’t a cure for CF.

“Unfortunately not, as CF affects many organs, but it has transformed my and my family’s life,” says Gwen.

“The knock-on effects, the stress and strain is considerably reduced.

“Transplant improved the quality of my life dramatically.

“Historically, people with CF did not live past young adulthood, however nowadays, as treatments have improved, many adults are living well into adulthood.

“Around 60% of the CF patient population in Ireland is 18 or older.

“This means new issues for PWCF (people with CF), to navigate, such as mental health, relationships, employment, fertility, etc.”

Support is available from CFI.

“Through the continued support from CFI, supported through the annual 65 Roses Day Appeal, additional resources are being established for people with CF and their families including counselling, exercise equipment grants, social distress grants, transplant and fertility grants as well as bereavement supports,” says Gwen.

“These are vital supports for PWCF as we continue to try and move forward in our life while managing a chronic life-long illness.

“I would encourage everyone to support CF day.”

65 Roses Day is on April 14 this year, and is the national fundraising day for Cystic Fibrosis Ireland, targeted to help fund essential services needed now more than ever by people with Cystic Fibrosis in Ireland.

Donate online: www.cfireland.ie

ABOUT CF

CF is a multi-system disorder, and although primarily the respiratory and digestive systems are involved, there are often problems with liver, joints, diabetes, fertility and reproduction.

Advances in medical management over the last few years have improved both quality of life and longevity.

These advances include exciting new drug therapies that treat the underlying cause of disease, improved CF centres, including those funded by or through advocacy of CFI, and good support networks for parents and people with CF.