Andy’s story: “Treatments for CF have evolved massively since I was a child in the 70s”

Balancing life with CF

I was diagnosed with CF at three years old, so it has always been a significant part of my life. I had two spells in hospital aged three and seven, but then apart from routine check-ups, I was fortunate to live a full and active life until I was 27 when gallstones became a problem.

From the age of about 30, my chest has been a big challenge, requiring almost annual stays in hospital. I worked from home as a computer programmer for a number of years, but I retired eight years ago in order to look after my health as best I could, giving me more time each day to exercise and maintain my health.

The things I have focussed on to help me manage my CF include making time to do the recommended daily treatments and ensuring that I get out walking every day with our spaniel to try and stay physically fit. Getting the CF and life balance right is also very important, so I’ve always tried to ensure there is time to do things that are enjoyable too, which for me includes working on house projects, maintaining my 50-year-old Land Rover, walking in the hills and canoeing in the summer.

How the CF landscape has changed

Treatments for CF have evolved massively since I was a child in the 70s. In the last 20 years, the content of my medication cupboard has increased tenfold, with all sorts of pills and potions for treating the various aspects of the condition. Now of course there’s also the remarkable modulator therapy Kaftrio.  

In my case, Kaftrio has improved my FEV¹ scores by up to 10%, which makes a huge difference. It has also reduced the requirement to undergo IV treatment once or twice a year to deal with chest exacerbations and it’s now three years since I was last an inpatient. Taking Kaftrio has also allowed me to stop using supplementary oxygen for strenuous walking, which is great, as lugging a heavy oxygen cylinder in a rucksack and wearing a canular takes the edge off the enjoyment of being out in the countryside. The only unfortunate aspect of Kaftrio for me is that my liver isn’t so enthusiastic about it, so I’ve had to drop to a half dose, which doesn’t give you the full benefit, but it still helps a lot.

Although the introduction of Kaftrio has made a big impact on improving life with CF, it doesn’t work for everyone, so it’s important to keep funding the research required to achieve this, as well as looking to improve or even resolve other key areas of difficulty such as CF liver disease and CF diabetes.

A life unlimited

When you are young, your body is more robust and able to deal with a lot more than it is when you're older, particularly with the demands placed on it by having CF. I realised this in my 20s and decided to make the most of this period by seeing the world, taking memorable trips to places including New Zealand, North America and South Africa.  These days I’m very much home based, but still enjoy great holidays on the west coast of Scotland.  Hopefully, with the introduction of CF modulator therapies, people will have a much greater window of time for enjoying adventures. It is also my hope that people with CF will hopefully be able to work for longer and take on a wider range of careers. With better overall health, there will be less restrictions on the socialising front, and the demands of family life will ease. To me, all of these things go a long way towards a life unlimited.

The support of the Trust

Over the years, Cystic Fibrosis Trust has been a valuable source of information about the condition, how it affects people and the direction that research is taking, which has always been a great help and provides hope for the future. The Trust also uses its knowledge and experience to help drive research in the right direction, always asking the CF community for their views on what the priorities are. My family and I have always been most grateful for these aspects of the Trust’s work and continue to appreciate and support it whole heartedly.

Everyone with CF has different needs, but if we join together we can make change happen.

Will you unite with us and the entire CF community this festive season so we can keep funding our vital work, that could bring improved treatments for people with CF like Andy?

There are lots of ways you can support us this festive season, from playing our raffle through to doing some festive fundraising or buying Christmas cards and gifts for a loved one from our online shop.  

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