“I’m forever grateful for those unseen scientists working behind the scenes”

My issues of CF infections seemed to kick off quite late for a person with CF. My first experience of IVs and a hospital stay was when I was 11 years old and I had Pseudomonas aeruginosa. I found it interesting and exciting having all the attention at the time. That soon wore off! 

Needing two weeks of strong antibiotics three times a day, intense physio, lots of doctors and unusual food times took its toll. I was angry and frustrated at being away from family and friends and missing school. You can feel like a caged animal, with people looking at you and asking questions. It’s a very intense process, and unless you’ve been through it you can’t understand. 

But even in the toughest moments, my life is far from sad. I have this huge network of extra friends and family consisting of other people with CF, medical professionals and people I’ve connected with along the way. I find myself feeling extremely lucky to always have someone who will catch me when I fall. 

Dealing with cystic fibrosis in my daily life

My CF treatment routine consists of 24 tablets a day (this can be more if I have an infection), one inhaler, four insulin injections and 10 nebulisers. I also do chest clearance with a device called a PEP. It creates positive pressure that pushes through the airways so the mucus can move. I also count exercise as part of my treatment regime, I always try to do at least 30 minutes of something that raises my heart rate. 

It’s so important to use my lungs and to keep my overall health a priority. It’s also super important to do some weight-bearing exercises to help with strengthening my bones, as I’m on long-term steroids. 

As I come closer to my 40th birthday, CF affects my life very differently to how it used to. A lot is just routine that doesn’t encroach on anyone else. Only when I have an exacerbation does it cause logistical problems. My husband Stephen is a rock and a godsend because he is my taxi, my caregiver and everything in between. It’s not easy being with someone with such a medical need. I’m very lucky that he’s so calm under pressure and is such a strong organiser. He packs my hospital bags when I’m in a flap, carries it all when I can’t breathe and generally just picks up my slack. We’re a great team. My brother Michael is a big support too. He always lightens the mood, finds the humour in anything, and keeps us all belly laughing.

My mum is my biggest support emotionally; she’s been through everything with me and understands the ups and downs like no one else. I owe my independence to her. I was never treated differently or mollycoddled and that’s something I’ll always be grateful for. I grew up ‘normal’ for the most part. 

Looking to the future

Pre-Kaftrio, I didn’t feel I could plan for the future. The stability in my health now has blown the doors wide open with possibility. It’s something I’ve struggled to get to grips with mentally. I love to learn so I’d love to do a course with the Open University. I didn’t go to college as I was really poorly towards the end of my high school years, so I do feel I missed out on that opportunity. 

My passion these days is more centred on giving back. I enjoy sharing my journey and giving my insights from a patient perspective. I’m part of the Trust’s Involvement Group and I also co-run a support group for parents who have children with CF. Most recently, I was a surrogate patient for doctors doing their exams to become registrars. This kind of thing gives more to me than it does the recipients. I’m around people who understand if I’m unwell, so there’s no pressure, and I’m helping others gain real life knowledge of my condition. 

At some point in the future we would also love to become parents. We’ve been going through IVF for a while now so fingers crossed. 

One of my biggest dreams would be to meet some of the scientists involved in the creation of Kaftrio, to say a personal thank you and put a face to the many people they’ve helped. That would be the cherry on my cake any day!

Striving for a life unlimited

It’s a very exciting time in CF care. For 34 years of my life, there didn’t seem to be any huge advancements, and now they are coming thick and fast. In all honesty, it’s the most hopeful I’ve ever felt, and that’s comforting as someone approaching 40 that didn’t even think I’d be here, let alone experiencing these huge leaps forward in treatment.

I think when you have a life-limiting condition like CF it means everything to know that research is happening to try and beat CF. I’m forever grateful for those unseen scientists working behind the scenes and everyone else involved in pushing these treatments further. 

A life unlimited for me means no gruelling treatments. No waiting in for huge medical deliveries. Having more space in my house that's not dedicated to tablets, equipment and oxygen concentrators. No hospital appointments that last all day and take me away from other plans. Most of all it literally means taking away the limitations placed on me by the physical, mental and logistical constraints of CF. The ability to just be.

Going into hospital with an infection is frightening for anyone with cystic fibrosis. The devastating reality is that some people never get to come home again.

Research has come a long way, but it’s not enough. That’s why we’re funding research to unlock better treatments for CF infections.

With your support, we can find more answers. Will you donate today to help ensure more people come home from hospital?

Donate today