A cystic fibrosis (CF) patient on the brink of requiring a lung transplant has been able live her dream of dancing her first dance at her wedding.
Music teacher, Kirsty Nelson, 32, shielded for much of the pandemic and had her wedding to fiancé Chris postponed on two occasions due to the virus.
But she was healthy enough not only to take to the floor for her first dance, but stayed on for all the dances after that - something she would never have thought possible before being prescribed ‘miracle’ drug Kaftrio by specialists at Glasgow's Queen Elizabeth University Hospital.
CF is a genetic condition in which the lungs and digestive system can become clogged with thick, sticky mucus. The illness can have an enormous impact on a person’s quality of life and means even a common cold can land them in hospital. It requires life-long treatment and close management for patients to live even relatively normal lives.
For Kirsty, having CF meant struggling to complete even the simplest of day-to-day tasks like going up the stairs or holding a conversation while walking.
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However, thanks to ongoing care from the CF team at the Queen Elizabeth Hospital, Kirsty was put forward for a clinical trial of Kaftrio which drastically reduces CF symptoms in patients.
Two years on, the drug has become more widely available on the NHS for patients who are clinically appropriate.
Now Kirsty is able to live a normal life – one which she could only ever have dreamed of before Kaftrio. She said: “I was at a point where I was in and out of the hospital every other month. My lungs had deteriorated so much they were looking to get me on the transplant list. Then along came Kaftrio.
“I remember taking my first two pills at 10am. It was during lockdown, and I was sitting in my garden. Within hours I was breathing easier and within a week my lung function had improved by 20% which is a big deal when you have cystic fibrosis.”
Since then, with a steadily improving lung function and overall health, Kirsty has been able to take on a teaching role while also finally tying the knot with partner of seven years, Chris, in February this year at Crear Weddings in Kilberry.
Kirsty said: “Before Kaftrio, a realistic dream for my wedding was to have enough energy to dance the first dance. The reality was I had the perfect wedding and danced all night, which was thanks to the team at QEUH who have looked after me all these years to get me to that point and then also getting me on that Kaftrio trial three years’ ago.”
Now, Kirsty can be found walking in the countryside with her two dogs Òran and Machair, swimming or cycling as she continues to build up her fitness ahead of bagging her first Munro in the near future.
Kirsty said: “CF has gone from defining me to taking a back seat. It’s not an excuse I use anymore. I’ll still need to closely monitor it and there will be points where I need to rely on the team at the QEUH, but they have provided such amazing care so far. I know I'm in safe hands, which means I can focus on living my life to its new fullest potential.”
Professor Gordon MacGregor, consultant physician at the QEUH, and part of the CF team caring for Kirsty over the years, said: “Kirsty is really inspiring in the manner she has managed her illness over the years while also making a great contribution to raising awareness of CF in the media over the years. It’s fantastic to see how much of an impact Kaftrio has had on her quality of life.
"Currently, we treat more than 250 patients with Kaftrio, which is one of a number of treatments for CF patients helping them live fuller lives with less acute visits to our hospitals.”
