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“People often don’t see how much effort is involved in day-to-day life”: Tom’s story
Growing up with CF
I was diagnosed with CF at 3 months old – I wasn’t putting on weight and was bringing up phlegm. My parents knew about CF as I had an older cousin who had the condition and sadly passed away when she was 21.
I was only in hospital two or three times during my childhood, but when I reached 16, I started to go into hospital more frequently with infections. By the time I was 19 I was being assessed for transplant. As a teenager, I didn't always do my treatments or take care of myself as much as I should. As years went on, I managed to pull things round as I knew I needed to improve my health.
In my late 20s, I started to get haemoptysis (when you cough up blood) and was embolised (a procedure to stop the bleeding), which has been ongoing since then. My worst episode was when I was on holiday in Dominican Republic when I was about 30. I felt great before the holiday and had been in for IVs, so we decided to go. We had a great time until I had a bleed two days before coming home. On the plane home I had several more bleeds, which was really scary. When we got to Manchester airport I collapsed and was rushed straight to the local adult CF centre for treatment.
Living with CF in my 40s
Living with CF in my 40s can be challenging, I’ve found I’m slowing down compared to my 30s and getting more breathless, so have to time doing simple things – like mowing the lawn or going out for a meal – with one of my nebs. Socialising is one of the big things; my friends always go to watch football or rugby but for me it can take a lot of logistical planning. It makes committing to things difficult. People often don’t know how much effort is involved day-to-day when it comes to living with CF – and even more as you get older.
Treatments are also a big part of my day and can be a burden. I’m up at 5am to do my first nebs, airway clearance, and then I take my dog for a walk. In the afternoon I do the rest of my nebs, tablets, physio, and inhalers – it’s a lot. And then last thing at night I have clearance before bed. I often find myself having a nap in the afternoon which helps. You never get a day off from CF.
Unlocking answers with research
My hope is for research that can help with the treatment burden. I’ve got a very understanding wife, but for so many others who don’t have support, it must be incredibly challenging. I’m taking part in research in Manchester over the next six months on how infections affect our lives and what causes them. This includes monitoring my home environment and taking blood and sputum samples. Hopefully something positive comes from that and we can start to predict what’s causing these infections.
I also wish there was more research and understanding into why men with CF struggle to become fathers. It was a complete shock to me when we started trying. We had two failed IVF attempts and it was such a stressful process that we made the difficult decision that was enough. More understanding of why, what causes it, and the options would help so many people going through similar struggles. I don’t want a young person with CF to have to go through that shock.
Vital support
The support of Cystic Fibrosis Trust can make a big difference to our lives and the daily struggles living with CF can bring. I needed a washing machine and was given a grant by the Trust. It doesn’t sound like a lot, but for someone who’s struggling, that is a huge help. Things can spiral if you can’t cover your essentials. It could be something simple like not being able to power your fridge to store meds or buy train tickets to the hospital, but it can quickly snowball into not being able to do treatments and affect your health.
Living life to the full
To a young person living with CF, I’d say try and live as normal a life as possible. My parents encouraged me to do everything, and I ran and swam for Salford. It puts you in a much better frame of mind and helps you cope. I have a really positive attitude and I’d encourage people to try and live life to the full – don’t let CF hold you back.
Research is the difference between leading a life limited by CF, and leading a life you choose. Regular donations are the bedrock of medical research. When you commit long term, people living with CF can think long term.
If you can, please consider giving a little a month so we can continue to invest in research that will unlock the many unknowns around growing older with CF.
With your support, we can give people with CF like Tom the gift of more years and more memories.