✨️Coming back into hospital was in no way a failure, I’m proud of myself for doing it

There has been a huge shift in Cystic Fibrosis care over the last five years or so with the introduction of Kaftrio. This medication is a protein modulator which targets the cause of our chronic condition, rather than simply treating the symptoms. Kaftrio was not the first medicine of its kind, but it has been the one to make the latest big impact on the community and my life personally.

A few years ago, I was very unwell. No standard treatment seemed to be making a difference. I was spending so much of my time on hospital wards with little hope I’d get better. I then started on Kaftrio, and everything changed after that. My symptoms decreased. My lung function improved. I wasn’t cured, but I had hope again. And for two and a half years, I have lived my life away from the wards I previously felt tied to.

I do still have CF. I still have a port-a-cath that requires going to the hospital to have it flushed every six weeks. I still need to do physiotherapy every day and take all my pills. I still have lower energy levels that most and I am still at a greater risk of infection than the majority of the population and have to be careful. I still feel the effects of my chronic condition, but so much about my life is unrecognisable from what is once was.

I always knew that I could become unwell again; that I could have an exacerbation of my chronic chest infections and need to be admitted. But I held onto the belief that it might not happen. So when that possibility came into sight, it was scary.

But this hospital admission feels different. I have a community around me now, so this doesn’t feel like a period of isolation. I also still feel well in comparison to pre-Kaftrio times that it almost felt silly to choose to come in given how bad I once was. But, as a member of my team said: “why would we let you get that bad?”

So here I am in a hospital room with a new mindset. I came in as more of a preventative measure: to stop me from slipping back to that bad place. I am here so I can continue to live the life I have had the opportunity to build for myself in the outside world. I am taking a break so I can go out there stronger.

Coming back into hospital was in no way a failure, I’m proud of myself for doing it. It required me to challenge my perception of health and shift my thinking. To stop pushing through and put myself first. And I am already feeling better, so how could that possibly be a bad thing?

I am where I need to be.