“Every day I stop and remind myself of what life was like and how far I've come”: Luke's story

I’m Luke, I’m 53 and I was diagnosed with CF at 13 months old. At the time my parents were told I would be lucky to reach double figures. I was relatively fortunate with CF through my childhood, and it wasn’t until my late 20s that my lung function started to drop, which resulted in more frequent IV antibiotics and hospital stays. 

There was a gradual deterioration in my health and then in 2001 I became the first person with CF in the UK to be diagnosed with Mycobacterium abscessus (a type of NTM infection). I spent five months in hospital as CF teams around the world tried to find a concoction of antibiotics that would beat or at least fight it. My wife and I had only been married a year and a half at this point and it was a really arduous and difficult time for us. 

Things improved and we were delighted to have our son through IVF in 2011, and then a daughter in 2014. But in 2016 I would describe my health as "falling off a cliff". It was at that moment that my CF team at Royal Papworth Hospital suggested I consider going on the transplant list. After a lot of tests and a lot of soul searching, I agreed to do it. 

I waited two and a half years for the transplant and it was a horrible time. You’re waiting morning, noon and night for the call and my children were still so young at that point. My lung function was down to 15% and just going up the stairs would take 10 minutes as I was that weak. 

But then finally the call came – it was the third call, as the first two were false alarms – and I had my double lung transplant in May 2019. Since then, touch wood, the new lungs have been absolutely faultless. I've had no IV antibiotics, no chest exacerbations and no real health issues at all. Having been so ill for so long, to now having been so well for a number of years, it really is like living two different lives and I pinch myself most days. 

Having CF has definitely shaped my outlook on life. I never take anything for granted and try not to put things off. Every day I stop and remind myself of what life was like and how far I've come. But I also know that things could change and I'm very realistic about what may come in the future. I had some dark times and it helps me to remember what I’ve been through, so I don’t stress about the silly stresses and strains of everyday life. 

Something I wish more people knew about CF is that it’s not just a lung condition. It impacts the whole body and I think many people aren’t aware of that. For example, I have lifelong tinnitus from the antibiotics I’ve taken over the years. I think there also needs to be more awareness and research into how CF impacts us as we get older. There are now more people reaching 50 and beyond and we’re very much in unchartered territory. 

We’ve had some amazing breakthroughs in CF, but it’s important that science doesn't rest on its laurels. We need to keep researching so that everyone can live a life unlimited, and we can beat CF for good. I think we will get there and there are so many reasons to be hopeful. Whether it's drugs or therapies, improvements in care, or improvements in understanding the science behind CF – there's a whole field of knowledge being built and I believe the future is bright. 

Over the years, Cystic Fibrosis Trust has been like a safety net for me. It’s provided me with great comfort as I’ve navigated CF and my double lung transplant. It’s also given me many opportunities to give back to the CF community through my work with the Involvement Group, which has really enhanced my life.

Find out more about our Involvement Group

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