“My first thought was that it was truly going to change my life”: Dad with CF reflects on a year of Kaftrio
When Symkevi and Orkambi were approved in October 2019, it was a highlight I never thought would be topped. But then to hear that Kaftrio had been approved for use on the NHS was nothing short of amazing. It was like all my birthdays and Christmases had come at once.
My first thought was that it was truly going to change my life, along with all those eligible to take it. I’m part of a WhatsApp group with four other ‘CFers’ from England and one from Australia, and we found out very early after approval that we were all eligible for it. It was so exciting hearing one by one that we had start dates. Paul, our Australian friend, had previously been granted the drug on compassionate grounds, and he’d seen amazing improvements, so we were all so excited to start.
I started taking Kaftrio on 20 October 2020. I decided to work from home that day, as I’d heard of people talking about “the purge” – and it turned out to be the right decision! I took my first dose at around 8.30am and in three or four hours, I’d begun coughing up more mucus than I’d ever seen before. This continued for the rest of the day and the next one until it started to slow down.
The change in quality of life has been miraculous. I can enjoy things more knowing that I won’t get out of breath so quickly. I can laugh without breaking into a coughing fit. I’m a keen golfer, and I can now quite happily complete a four or five hour round of playing, keeping pace with everyone else and not getting out of breath or needing to use a buggy to get around.
This year, I took on the ‘Great Strides, My Way’ challenge and in June 2021, me and a small group completed a 25 mile walk in 9 hours – something I’d never have been able to do without Kaftrio! It was extra special because a very good friend of mine, Andy, who also has CF, was able to join us. Keeping our 2 metre distance at all times, we completed the walk together. Although it was our first time ever meeting in person, it was like walking alongside someone who I’d seen every day of my life.
The last lung function test I did, my result was 93.4%. That’s a number like I haven’t seen since I was a teenager – prior to Kaftrio, my lung function was around 61-65%. I’ve also gained 12 kilograms, which is amazing – although now I need a whole new wardrobe of clothes that fit me!
I’d like to say, on behalf of the entire CF community who are eligible for Kaftrio, a huge thank you to Vertex, the NHS and the Cystic Fibrosis Trust for all their work and effort in securing a deal so quickly. I now have more time to spend with my wife, Jenny, and our five-year-old son, Noah. All in all, Kaftrio has been a life-changer, a lifesaver and a miracle.
As we move forward in a changing world of cystic fibrosis, we want to reassure the CF community that ensuring no one is left behind as CF care and treatment develop will continue to be a key focus for the Cystic Fibrosis Trust.
Please talk to us if you are struggling with any emotions around the subject of Kaftrio – we are here to help. Call our Helpline for support with any aspect of cystic fibrosis, a listening ear, or just to talk things through. Our friendly team are here if you need us.
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Find out more about Kaftrio
Kaftrio is a medicine used to treat those aged 12 and over who have cystic fibrosis.
Donate today
Donate today to help us fund the best research in the world so that everyone with cystic fibrosis live a life unlimited.
Get support
Call our Helpline for support with any aspect of cystic fibrosis, a listening ear, or just to talk things through.