Jon’s story: Kaftrio, side effects and mental health

Can you tell us a bit about your diagnosis?

They missed my CF when I was born so we had a few years of not really knowing what was wrong with me. I wasn’t very well and had a few issues, so my mum ended up getting a second opinion which confirmed that I had CF. It made the issues I was having suddenly make a lot of sense and they were able to get me healthier fairly quickly.

One big thing my mum told me later in life, that is coming to have more of an impact, is that when I was born, the doctors told her I’d be lucky to see 30. Because of medical advances, that isn’t necessarily the case anymore, but that number has kind of stuck in my head, so turning 30 was a big thing and it felt great.

What was it like growing up with CF?

My CF is a lot better for me as an adult than when I was a kid as I know how to manage it a bit better. Because I got diagnosed when I was still young, it’s all I’ve ever known, so talking to people growing up, it never really felt like anything other than normal to me. I was aware that other people didn’t have to do the same sort of thing as me, but I didn’t think that it was weird. Maybe because I’ve always been relatively healthy it just felt like something I had to do so I just got on with it.

I was always a bit slower to develop and I was a bit smaller and thinner in my teens. That did impact my confidence in terms of a physical point of view. I was a bit late to the dating scene because of this but I think overall my experience of dating has been great. Everyone I’ve gone out with has been really respectful of my boundaries. It was only when I got to my twenties, when you start think ahead and the topic of having kids comes up, which can be tricky. My wife, Hannah, and I have been together for eight years now and she’s been so supportive through everything.

How is your CF now and has it changed as you have grown up?

I was in and out of hospital fairly regularly when I was growing up, as much as I would consider normal for the average person with CF. When I turned 16, my health suddenly got a lot more controllable, which was around the time I started running and doing exercise as a form of physio. I started running in my mid-teens and from then on, I had no hospital admissions until I was 27. I had some flare ups that needed antibiotics, but they were all orals and I was really stable throughout those ten years that I didn’t have any hospital admissions.

I’ve had a couple of rough years recently with a few more hospital stays than I’d have liked, but my actual lung function has stayed pretty stable and throughout lockdown it was the highest it’s ever been. Over the past few years, especially during lockdown, I chose to exercise more, and I’ve really noticed a benefit on my health. Aside from the physical side of it, mentally I get a lot of benefit from exercise too - I find it frees up my mind after a day of work.

What was your experience of Kaftrio?

Before I started Kaftrio I was pretty healthy, especially through my adult life. I never really had to acknowledge I have CF, apart from doing meds and having an occasional chest infection and a perpetual cough. When they said I was eligible for Kaftrio I was initially surprised because my lung function was really good, so it didn’t feel like I needed it.

The first couple of weeks on Kaftrio were great. My fitness went through the roof, and I was smashing all my times, and had so much energy. I’ve always described it as like I could take an infinite breath. I never realised what a full deep breath was like until I had one and it felt amazing.

Then the side effects started kicking in. For me the biggest side effect was the mental health side of things; I’d only ever really experienced things like work stress and even then, it was never as bad as some people experience it. My mum always said if I was any more laid back, I’d be flat on the ground, but suddenly I was noticing every little thing about my body. I’d get a little bruise, and I’d be freaking out about it and worrying about it constantly. It was debilitating and I couldn’t not worry, even though logically it was nothing to worry about.

Another thing was that my Creon was all over the place. I couldn’t understand what my body was doing anymore. I would try to dial back the Creon and then it’d be too little, and I’d take more and it’d be too much. It was so hard to find a balance. I was also so fatigued all the time, which in hindsight may have been the mental health impact, but it was just too much change at once.

Kaftrio didn’t really do much for me lung function wise, apart from being able to breathe deeper, so for me, the side effects were just not worth it. I was seeing things in my body which I hated, and I was overtraining trying to fix things and make myself feel better which did more harm than good. I eventually made the decision with my wife and my CF Team to stop taking Kaftrio and go back on Symkevi which I had previously tolerated, but found I now couldn’t because the mental side effects were still there.

Even now I still feel so anxious. It’s like Kaftrio opened a gate and I’ve never been able to close it. I definitely have a better handle on it now, but still I’ll notice something different about my body and spiral about it for a few months. I’ve started seeing a mental health professional and I’m still receiving therapy to try and come to grips with it all.

What are your hopes for the future?

I’ve spent the past few years trying not to think about the future because it was scaring me so much. I’m now getting a better handle on things, and I do really want to travel with Hannah and see more of Asia. I really want to go to Japan because I’m super into anime and all that, and I’d also love to go to Egypt. Kids aren’t on the cards for me and Hannah and that suits us, but I’d love to get a dog or another cat to have something fluffy to love.

I’d like to see better treatments that everyone can have access to. Obviously, the hope for any medication is all the positives and none of the negative side effects. I think there’s more work to be done and it sounds like it is being done, in terms of trying to understand and tackle side effects that people have experienced. Having treatments for all gene types would also be a game changer.

We know that Kaftrio can be a difficult topic for some people. While many people have experienced amazing transformations to their health, other aren’t eligible or can’t tolerate it. Our Responses to Kaftrio factsheet, provides more information or reach out to our Helpline at 0300 373 1000 or 020 3795 2184, Monday–Friday 10am–4pm, or on [email protected].

Talk to your CF Team if you are experiencing physical or mental side effects on Kaftrio - they can offer support and advice, and discuss your treatment plan with you. You can also report side effects via the Yellow Card Scheme. Please discuss with your CF team before changing or dropping any treatment or medications.