Diagnosed with cystic fibrosis (CF) at three months old, Carol McGrath has become accustomed to dealing with the illness, describing it as “manageable” when she was growing up.
But the now 47-year-old says as she is getting older, she has been diagnosed with other diseases that are directly related to her CF.
“I’ve type one diabetes that is connected with my CF, I’ve kidney disease, liver disease,” she says. “It affects every single organ in the body, not just your lungs. It becomes quite complex as you get older.”
This was particularly seen in 2021 when she was experiencing digestive problems resulting in consistent constipation and collapsed in her kitchen.
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Following this, it was discovered the digestion problems were a consequence of a “reperfusion injury”, in which a clear film had grown over her intestines and was, in effect, suffocating them.
“I had three surgeries in the first week. They had to leave me open with a vacuum pack. I was in [the] ICU for five weeks. I went into end-stage liver disease, and there were talks of needing a liver transplant. But my liver is now stable,” says the Tipperary woman.
“I had to learn how to walk again, I had to learn how to write again. All those fine motor skills that we all take for granted, I was literally starting from scratch again. It took me a good year to get back on track properly and to feel like myself again.”
The hardest part, she says, was “having patience with myself” because “I felt robbed”.
Though she is feeling much better, she says the liver and kidney diseases leave her feeling a “bit more fatigued” but she manages it with diet, exercise and medications.
People with CF are living longer, with 62 per cent being more than 18 years of age and 15 per cent being older than 40, according to research from Cystic Fibrosis Ireland.
However, the ageing demographic is resulting in development of other health challenges associated with the disease, according to Prof Barry Plant, consultant respiratory physician and clinical director for medicine at Cork University Hospital.
“Cystic Fibrosis health issues such as CF-related diabetes [CFRD], CF-related liver disease, CF-related bone disease and renal complications are well established and understood,” he says.
“Over the last five years obesity, cancer, cardiovascular risk and age-related hormonal changes are being increasingly identified in older adults with CF.”
Plant says research has shown that those with CF have a greater risk of developing colorectal cancer and coronary artery disease compared to age-matched people from the general population.
“The success of improving health and increasing survival creates the new additional challenge of implementing appropriate care for older adults with CF. The sustained development of designated CF centres is an integral part of this process,” he adds.
Cystic Fibrosis Ireland chief executive Sarah Tecklenborg says people can now “plan for the future with greater confidence” and are working for longer, buying homes and starting families.
Speaking in advance of 65 Roses Day, the annual fundraising campaign on Friday, Tecklenborg says research by the charity found 61 per cent of adults with CF are in employment, of which 60 per cent can work full time.
However, she adds that 28 per cent of people said they were unable to work due to their diagnosis.
“Almost half of people living with CF said they struggled to pay their monthly bills on a regular basis, highlighting the continued challenges of this condition and the implications for those living with it,” she adds.
