I can breathe again: how new drug transformed Alex’s life
Christmas comes early as cystic fibrosis sufferer’s health improves dramatically
A CO Armagh woman living with cystic fibrosis has told of the miraculous turnaround in her health just weeks after receiving the newly approved drug Kaftrio.
Christmas came early for Alex Donnelly (32) when she began the life-saving treatment, known as Trikafta in the US, last month.
With a rapidly declining lung function of just over 50%, the rollout here came at a crucial time for the adventure-loving blogger and photographer.
“After three weeks on Kaftrio my lung function was up 30%,” Alex said. “My energy levels are incredible. Doing my physio has completely changed, I don’t have to spend hours a day clearing my lungs of mucus any more.”
The eldest of three girls all born with the genetic condition, Alex believes she is fortunate to have made it to 32.
“We were all very lucky in that we spent our childhoods fairly healthy,” she said. “I was in hospital when I was first born but all three of us were thriving until our teens. That’s when our health started to be impacted.”
Hours of physio, nebulised treatments and short hospital stays became a way of life for the Donnelly sisters as they each battled to fight off infections.
Then in July this year the Health Minister Robin Swann struck a deal with Vertex Pharmaceuticals to supply the drug in Northern Ireland.
While youngest sister Shannon (27) had already received it on compassionate grounds, Kaftrio was sadly a decade too late for middle sister Amy.
Described by Alex as the “gentlest” of the three, Amy passed away in 2010 after a courageous nine-year battle with Cf-related liver disease.
Ten years on and now thriving on the treatment, Alex insists she has never been a victim to her condition.
“I was still able to travel in my 20s. I went to university for four years in Edinburgh and once I graduated, I travelled with my friends and lived in Australia,” she said. “Since coming home in 2015, I’ve been in a long-term relationship, I’m engaged to get married next year.”
But while living through what should be the happiest time of her life, Alex began to see her health slowly dip to its lowest point over recent years.
“I felt like I was constantly swimming against the tide to try to keep myself well,” she said.
A month into her treatment, she can only describe the rapid return of her health as “bizarre”.
She added: “It’s been a complete change. My health has returned to what it would have been as a teenager. I wake up and I can breathe. I don’t have to worry about how difficult it’s going to be.
“Now I don’t feel the rush to go straight into treatment. The coughing fits have gone, the night-time coughing has gone, the crackle in my breath has disappeared.”
With her time spent on daily physio now more than halved, the bride-to-be believes she can now look forward with hope.
“We can plan for the future now. I can live a much more carefree life with my friends and family. With getting married next year, I am so excited whereas before I was apprehensive about what my health would be like at that stage.
“We want to have a family and knowing that I’ll be able to have children without fear that I won’t be around for a long time is important.”
‘I’m able to live a much more carefree life now’