How it should've been

It feels like this entire port fiasco and never-ending hospital admission is my only personality trait now, but I’m going to continue digging into it until I can talk about it without wanting to die (that's an exaggeration btw). Somebody asked me a very significant question that I hadn’t stopped to consider and although it won’t change what happened, it did allow me an avenue to explore what should have happened, how I would’ve liked the experience to go, and what I would’ve taken from it. So, with that in mind, this is what I would’ve liked to have felt afterward the surgery had it all gone according to plan without the added complications of my lungs that we’re now facing.

After seven years, my closest companion has finally departed. This is such a significant moment in my CF journey. I had the port put in at 15 because I was getting so poorly, requiring hospital admissions and IV antibiotics every eight weeks, eventually my veins started to collapse and were prone to infection under the stress of multiple cannulas and picc lines. The notion of never getting better was beyond frightening but now seven years later (almost to the day) it's coming out because my team have been so happy with my health over the past couple of years (and the port is old and is becoming a risk of blood clots and sepsis lol). Literally crying now thinking about how we never ever thought a day would come where I could be a “normal” girl, earning a degree, pursuing a career, travelling all over the place, and finally really thinking about the future. I can’t articulate how grateful I am every single day for this life.

My port has always been a quiet reminder that CF was always there, lurking over me, reminding me there’s always a health risk with whatever I choose to do. Of course, there still is, I’m certainly not cured but Kaftrio has changed my life. Having my port out is symbolic of the journey we’ve had. Breathing to the bottom of my lungs is still a delightfully overwhelming feeling, I will never take for granted how lucky I am to be here.

I feel bereft at how I wasn't able to part ways with my port in a more peaceful way because it saved me so many times in those seven years. It should've been like leaving the old me, the traumatised version of myself in a past life, praising and thanking her for getting through all those awful periods of illness and loss of hope, and walking into a new, bright and shiny, well earned era of health and adventure of my life. But obviously it wasn't quite as smooth as that and now I'm grieving that experience. Not that I'm trying to compare the two situations whatsoever but it kind feels like how I would imagine planning a natural birth but having to have an emergency c-section would be.

Reading this, knowing how difficult things are lung wise right now is 1) really ironic and 2) really bitter because it feels like I’ve fallen so far with my Kaftrio progress. It feels like I’m going to be stuck forever in this state of ridiculously fragile lungs, I’m already grieving the post Kaftrio life I had been dreaming of for so long.

I’m really struggling to accept that 10 days of surgery and illness has, for the moment, seemingly eradicated three years of excellent progress. I’m still hopeful that eventually I’ll get back to post-Kaftrio level of health because quite honestly, if I don’t, then what am I supposed to do? It took time but a while ago I accepted the fact that I’m not really in a position to do a summer working at a camp america, or inter-railing for two months, or relocating to New Zealand for a year just because I fancied something different. I can (begrudgingly) accept that, but not being able to stand at a Taylor Swift for three hours (if I even get tickets obvs lols)? Not being able to walk the dog for hours at a time? Not being able to dance around my room? Not even being able to carry the weekly shopping?? That’s hard to swallow so I can’t let *not getting better* be an option. I just can’t. I have long deserved a life where health concerns are minimal and all I'm doing is out living happily, exploring with friends and family, meeting new and exciting people (and if you know how utterly terrible my 2021 was for non-health reasons, then I'm sure you'll appreciate that even more).

I’m doing my best to remind myself that I was in a far worse state of health back in 2019 – 2020, which nobody really expected me to recover from (I’m not saying I was about to drop down dead but there were certainly doubts about whether I’d be able to continue with the degree, or at the very least living away from home). But then the pandemic happened which gave my lungs six months to recuperate without catching any bacteria and was in fact the healthiest I’d been in years. Then Kaftrio came along which sky-rocketed my lungs and suddenly I could run up a hill?? I could go three months and not feel a thing?? I didn’t have a glucose crash at exactly 15:00 every day?? I could have a meal without creon and not be on the toilet in pain the next day?? My point is, nobody could’ve predicted the pandemic and then Kaftrio bringing up the rear of that so maybe, 🤞🏼hopefully🤞🏼, something unexpected will come along that will benefit my health in ways I couldn’t have foreseen. (And just for the record, I’m not saying I’m hoping for another pandemic obviously), but you never know what life will throw at you, or what modern medicine will magic up someday soon so I'm hopeful that I'll still reach my ✨healthy era✨.