“When I'm cheerleading, I feel like I become a different person": Catherine’s CF Week story

My CF journey

I was diagnosed with CF at birth following a complete bowel blockage (meconium ileus) and life-saving surgery at 24 hours old. I count myself lucky, because this was before routine testing of newborns for CF and the early diagnosis enabled me to access treatments at a very early age. My lungs were thankfully very healthy as a child, but I did have more digestive system complications and a lot of issues with my sinuses, requiring several surgeries from a young age. When I went to university I started appreciating the severity of my condition, as I started having more chest infections and fighting a bit more to keep my weight stable.

Back in 2020, after a long period of shielding during the pandemic, I was finally able to start on a modulator: Kaftrio. It was incredible and helped me to get rid of multiple colonised lung and sinus infections. I lost my constant cough, could gain weight like a 'normal' person, and was eventually able to reduce some of my treatments.

More recently, I've had a bit of a tough time with infections, and I ended up on IV antibiotics twice in six months. But I’m feeling much better again now, and I’m hoping that the modulators continue to work their magic! Despite my CF and the challenges it brings, I have been able to keep up with all kinds of sports throughout my life, which has also helped to keep my lungs clear.

My day-to-day with CF

I work full time, so managing a health condition on top of that can be a challenge, even with Kaftrio. In the morning, I have to eat a high-fat breakfast to ensure the modulator tablets work well in my body. I also take a handful of other pills, including enzymes (which I have to take with any fat-containing foods). I then complete my sinus regime, which is a mix of rinses and medications to keep them clear.

Out and about, I have to carry enzymes wherever I go as I can't eat without them. I also carry an inhaler and some pills to help with haemoptysis (coughing up blood), should this happen. I try to do exercise as much as possible as a form of chest physiotherapy and I also take a nebuliser to help me clear my chest. In the evening, I take another handful of pills that help to keep me well.

The moment I feel a chest infection coming on, I have to contact my CF team, who advise me on whether they think I need to be seen or have antibiotics or other treatments. I also have to organise a lot of prescription medicines, both delivered and from the local pharmacy, which can be quite a lot of admin!

The impact of CF on my physical and mental health

CF can be physically and mentally draining. It's a progressive disease so you are constantly fighting to stay well. I have to be careful about catching winter bugs, as a simple cold or virus can end up becoming a chest exacerbation or a nasty sinus infection. 

It can be a struggle mentally in many ways, too. I became aware of my reduced life expectancy from an early age by accident, which was difficult and confusing. On the flip side, I, like many others, have also felt 'survivor's guilt', especially when modulators made such a difference to my life but couldn't do the same for everyone.

What I wish more people understood about living with CF

I wish people understood how isolating it can feel. A lot of people don't realise that those with CF are unable to meet in person due to the risk of passing on infections. Growing up, I didn't really know of anyone else with the condition and I remember feeling like no one 'got' it. There were no support groups – you just had to get on with it.

What I love about cheerleading

I sort of fell into the sport by accident as a teenager when a friend's team was looking for people with gymnastics experience. I didn't really know what it was all about at first, but it soon became a huge passion of mine. I love the sport because it's based on trust and you become a bit like family. You get to work towards one routine all year round, repeating and perfecting sections of it, yet everyone has a different role and you can find the thing you're good at. 

As a flyer, I have to trust people to throw me in the air and maintain very good flexibility. I particularly love the all-consuming buzz and excitement of competing. On the mat when I'm performing, I feel like I become a different person and I don't have to think about anything else that might be going on in life.

I have worked hard all throughout my life to exercise to keep my lungs as healthy as possible, and benefit from the modulator drugs, so I am thankfully able to keep up with the routines most of the time. Becoming unwell with a chest infection is challenging; the sport relies on people being there as if one person is missing, a whole stunt group may not be able to practice. So, I still attend practice when I'm unwell and join in as much as possible. When I'm on IVs, I can't stunt or tumble due to the risk of damaging my IV midline, so I have to 'mark' the routine (which means pretending to do parts of it and visualising instead).

Luckily, the coaches on my team have been so understanding and accommodating of my CF. I compete in the adaptive abilities category, which is where disabled and non-disabled athletes compete together as one team. It has been lovely to meet people with similar experiences and challenges in life, and we are constantly adapting stunts for people with various conditions and disabilities. I am lucky enough to be heading to the first European Summit Championship competition in June this year with my team.

Recently, I was at a competition, unaware that I had an exacerbation coming on. I ended up coughing up blood right before we went to warm up and it took a while to stop. I began to worry that I'd struggle to compete, but thankfully I was able to control the bleed and of course, me being me, I wasn't going to miss getting on the mat for the world!

How Cystic Fibrosis Trust has supported me over the years

The Trust has helped me in quite a few different aspects of my life. They helped direct me towards grants to help me keep active when I went to university, apply for benefits when I was more unwell in the past, and of course, help fund life-saving research and medication. 

Unfortunately, not everyone is as lucky as me and some are still very ill or unable to access modulators. What I would say is that if it wasn't for the tireless fundraising work through charities like the Trust, thousands of people would be much more ill and many not here to tell the tale. I am lucky that some of those closest to me have done some incredible fundraising for the Trust, including my dad who ran the London Marathon in 2006, and one of my sisters, who did the 11,000 steps a day challenge in February this year.

In the future, I hope that everyone with CF will be able to benefit from modulators and that the treatment options continue to improve. For me, a life unlimited would be one which isn't ruled by treatment regimens or infections, one where CF doesn't get to make any choices for you. With the advances in medicine, it now feels closer than ever before.