This article is more than 2 years old
"I want to be able to inspire people": Rich's story
I’m 40 years old and was diagnosed at 6 months because my brother, was two and when they diagnosed him, they tested me at the same time. My brother passed away when I was 14 and he was 15. It was difficult. He was unlucky – he worked hard but got unlucky with infections.
In my life, I’ve been really lucky, I had very few infections as a child, played football, rode my BMX, played a lot of sport. I was in a football team for most of my childhood, and sport made me forget about my differences a bit. I was very late hitting puberty and was always a lot smaller than the other kids. But I always had that commitment to keep doing exercise even though I stood out.
Things were really different for people with CF when I was young. There were none of the cross infection rules we have now, and we used to mix, and hang out in common rooms in hospital, playing at the pool table. In fact, in 1999, Great Ormond Street Hospital took a group of children with CF away for a week’s ski trip in the French Alps. My love for skiing was cemented!
Kaftrio
In 2010 I did my first marathon aged 25, raising money for Cystic Fibrosis Trust. It was a disaster! At mile 16 I felt my cystic fibrosis really holding me back, I cramped and limped home in a time of 5 hours 22 mins and I vowed never to do it again.
When I hit 30, my CF became much more of a burden in my life. Until this point, I was able to live mostly a normal life but then it became impossible to ignore. I spent a lot of time doing everything I had to do including riding my road bike. Maintaining my lung function was almost impossible, I was coughing up blood, and was going to hospital twice a year. But then Kaftrio came out.
I’ve only got one common gene mutation, so I couldn’t have any modulators beforehand. I’m a chartered surveyor working full time, and previously I was spending hours doing cycling, physio, and nebs after work. I barely had time or the energy for anything else.
The purge was real. I got Kaftrio on 14 September 2020. Within 2-3 hours I felt it start working and I didn’t stop coughing for 4 days. Since then I haven’t coughed. There’s nothing to cough up. I’d previously had to sleep on 2-3 pillows every night, and for the first time I could lie flat. I could wake up and not be reminded I have CF by coughing. It was amazing.
In that first year after Kaftrio, I cycled 9000 miles. Before I would get ill, have IVs, and spend 2-3 months getting back to fitness, then go through it all over again. Now, it had levelled out and it stayed that way.
The one negative of this miracle drug for me was the weight gain. Pre–Kaftrio, I was a healthy weight and able to eat what I wanted. After Katrio, I didn’t change my diet habits and gained 10 kilos. Over the past few months, I have been on a a Kaftrio weight loss adventure - losing 10 kilos in order to get back to my pre-Kaftrio weight. Changing habits I have had all my life has been difficult but it is worth it,
Sport
2022 was a big year for me in my fitness journey. I signed up for the hardest stage of the Tour de France that they open to amateurs. It was over 100 miles of cycling in the French Alps, over 3 massive mountains with an elevation gain of 4,600m. It took me 9.5 hours! Even the fittest people (without CF!) struggle. Not only did I do it, I did it with a mild chest infection. I had a couple of weeks off then I did the London Marathon in October. I did 8-9 runs to practise and then did it, again for the Trust, in 3 hours 41 minutes. I was really happy about it.
I asked to do it again last year (2023) and I got injured around mile 9, but was still able to do it in 3 hours 52 minutes, even with 1 good knee for 17 miles. Before Kaftrio I could do things like this, but it was so hard, and now it’s incredible. It’s been keeping me well while I’ve been recovering my knee - I wouldn’t have even risked the injury before Kaftrio. Back then, if I didn’t exercise, I couldn’t clear my chest.
Turning 40 and Dragon Ride
2024 is a big year for me! I turned 40 in March which is a big milestone for someone of my age with CF. I celebrated by Heli-skiing in the Italian/Swiss Alps which has been a life long ambition of mine since my first skiing experience in 1999.
I’ve also signed up to the Devil’s Dragon Ride in Wales in June 2024 as part of my next challenge. It’s a one day event consisting of 185 miles with 4500m of climbing.). The training has been going well but the event will be my hardest day on the bike ever!
I want to be able to inspire people. I’m 40 now, and I now have friends who have friends with kids with CF. It’s important for me to be able to say I’m 40, I have a full time job, and I can do all these amazing things as well.
