“Starting Kaftrio after losing friends with CF really affected me mentally”: James’ story

I felt like I had a debt to the stage 

I was diagnosed with CF when I was 6 weeks old and was the first person in our area who was diagnosed through the heel prick test. My mum was the branch secretary for the Humber and Yorkshire branch of Cystic Fibrosis Trust so I don’t feel like I ever knew life without CF - I was surrounded by the Trust. Most of my childhood was spent fundraising – village fetes, abseils, and things like that. 

I missed quite a bit of school being unwell and drama was the only subject I excelled in. On my 16^th birthday I was supposed to be doing my GCSE drama piece and I couldn’t do it because I caught pneumonia and my lung collapsed. It sounds a bit corny, but I felt like I had a debt to the stage. I felt like doing drama was a lifeline for someone like me.

I got a job in accounts for a year and started coughing up a lot of blood every other week over the course of six months. I got taken to hospital and was very low at the time. My girlfriend broke up with me over the phone because she couldn’t handle it. It was then that I was offered a CF psychologist, which was massive for me. It gave me the push to do something I wanted to do with my life. It was a crossroads that was so apparent to me. I quit my job and started a performing arts degree at Manchester Met.

But after a year I became very unwell. I realised I needed to be closer to home so I could have support. I moved back and went to Hull University instead. It was actually the best thing to happen to me. The classes were smaller, it felt more personable, and my tutors really got CF. There were times I couldn’t do a show if I had IVs and they were really understanding.

Following my dreams 

My biggest achievement at university was that I was awarded ‘The Next John Hurt’ – he went to the campus I went to. I got to do media with him down at the House of Commons; it was an amazing experience and reaffirmed I’d made the right choice doing what I love. It opened some doors for me as well – I was in the British Youth Film Academy and got a main role playing Mephistopheles. Unfortunately, once again I was denied by body – I was passing a kidney stone during the shoot and had to withdraw. 

I then started creating my own physical theatre work. All of my performances were based around CF and my experiences and it was great to tell my story through movement and physical theatre. 

Since then, I’ve been working professionally as a freelance performer since 2014. I’ve never been out of work (apart from the pandemic) and I feel very lucky. The past 10 years I’ve been doing tours around theatres, performed at Glastonbury, schools, and been very lucky to do festival seasons. I've now created a solo act which has led me to performing at cabarets around Yorkshire and the Humber, and this year I shall finally achieve my dream of taking my own show to Edinburgh Fringe! I’ve also gained loads of new skills – I stilt walk and do interactive puppetry.  I love knowing there are other members of the CF community who are performers too! A huge shout out to Yvonne Hughes and Jack Norris who are both equally brilliantly talented and wonderful people.

Managing CF and my career 

I sometimes think I picked the wrong career because my health is unstable and the industry is unstable, and that is scary. I’m not getting any younger and I sometimes wonder if it’s the right thing. But I’d have never met my partner as she was stilt walking and I was doing a mime show at the time. When I was single, I felt selfish for wanting a partner because I didn’t want them to see me suffering. Danielle is amazing – she’s got the balance so right for me. She’s not too fussy and not too distant and appreciates my vulnerability.

I started Ivacaftor in 2013 and without that I wouldn’t have been able to do what I’ve done. My health was starting to decline and this really opened the door for me. I then started Kaftrio in April 2023; my lung function had started to plateau and it’s given me a second wind.

Before Ivacaftor I was in hospital annually for IVs, and then it changed to every couple of years or so. There would still be blips but I didn’t feel as fatigued or chesty and gained 10kg which I needed to do. My lung function was also very stable – it hadn’t been like that since I was a child. Kaftrio has had a similar impact.

Dealing with survivor’s guilt

Starting Kaftrio after losing friends with CF affected me mentally and I do have a lot of survivor’s guilt. The CF psychology team has helped so much and I've been seeing them all of my adult life. Mental health has only been spoken about in the past few years and because CF has so many highs and lows you don’t want to burden people (even if they have CF too), so talking to a professional is the biggest help for anyone in the community. 

The one thing that I still really struggle with physically is my kidney stones. I’ve ‘given birth’ to over 100 of them since 2010. It’s been constant and I’ve spent my life on painkillers. Without those I wouldn’t be able to do anything. My motto for life is ‘Work hard, rest harder’. Because some days the pain is so much I can't get off the sofa. But it’s always important to remember and celebrate the wins when I have them. Whether that is getting dressed or performing in front of hundreds of people. 

Building a community

I speak to the community a lot about my life and CF. I have been running a Facebook page for my ward for over 10 years. I was in hospital one night and I could hear someone coughing in the room next to me at 2am. It sounded like they were having a really bad time. It’s hard not to be able to check in, and so I made the group and a lot of people have joined. It’s nice that people drop in and give each other advice. I personally find it hard to be very close to people with CF, as so many of my close friends have passed away and I’ve put up a barrier because I don’t want to get hurt again. Every other condition has support groups and this is the best we can do. It's fantastic for the community and I'm so proud of how far it's come!