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“Growing older with CF is an unknown”: Tonia’s story
I never in a million years thought I’d be here
It makes me emotional every time I talk about reaching 50. My mum was told I wouldn't live to 18! There was always that little voice whispering, "you’re not going to make it". As the years went on, I passed 18, treatments were getting better, then I had my children. When I turned 50 it was during COVID-19, so my daughters put up one of those bubbles in the back garden so we could celebrate such a milestone – just my husband and my two girls.
My mum was brilliant when I was growing up; always making sure that I did my physio, that I had good nutrition and the right amounts of Creon with food. I have a real positive outlook too which helps! I’m especially fortunate since taking Kaftrio and I don’t really get poorly anymore.
I have a full-time job, and I do more hours than I should, especially at busy times of year, like when there’s exams at the school where I work – it’s non-stop. This can make managing CF treatments a juggle, especially for the breathing treatments which I have to do three times a day.
There have been many challenges in my 50+ years. My most difficult time was during COVID-19 when I had a bowel operation. I was due to have some routine tests and scans for checking my CF and things like bowel cancer. They got put on hold, but as my symptoms got worse, I was booked for a scan at a different hospital. I got the call to say they could see a mass and I was referred to have an operation. It was very scary not knowing what the results would be and being in the hospital on my own, but luckily it was good news and it wasn’t cancerous. I’m normally a strong person but that really hit me.
Growing older with CF is like an unknown
Your mindset changes from being told you’re not going to live to a certain age, outgrowing that, going further and knowing you can probably go further. It’s amazing growing older, but I’m now in the unknown.
There’s lots more research needed to find answers. I’d like researchers to understand why it is that a higher proportion of people with CF are susceptible to bowel cancer. Also, from a woman’s perspective – more understanding of the menopause. My menopause coincided with taking Kaftrio; people were talking about side effects including brain fog, but menopause is quite similar. It was hard to know what was causing the symptoms and the doctors weren’t sure either. I’d love if there could be more research into understanding this.
Defying the odds
To the younger generation of people with CF my advice would be stick to your regimen and you could defy the odds. It’s you who must manage yourself and your health; people around you can guide you, but it’s you that makes the decision of this is what I need to do to allow myself to grow older.
My hope is that children with CF who are born today may live their life unlimited. Medications and treatments have come such a long way, but there are still question marks and we must fund more research so we can one day find a cure.
With more research, you can give the gift of more years, and more memories
Research is the difference between leading a life limited by CF, and leading a life you choose. From the big things, like starting a family, travelling the world or going to university. To the small things, like saying yes to a night out, taking up running, or simply meeting friends for coffee.
Regular donations are the bedrock of medical research. They provide certainty and stability, the confidence to plan ahead, the power to back the boldest ideas with the biggest potential.
When you commit long term, people living with CF can think long term.
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