I survived another year! | Life with Cystic Fibrosis

I’m 31… 31.
30 was a huge birthday for me, very significant given my expectancy with CF from a young age was 30 or lower, it was a huge reason to celebrate.
But for me personally, 31 feels huge, and I’m guessing every age I reach from this point will feel more significant as they happen. But August last year we sat down and had the talk of what was to come & we estimated 1-2 years given my trajectory at the time, my lung function and weight plummeting at a speedy rate, my body failing me in general, hospital stays every 2-3 weeks up until recently. The admittance from some healthcare professionals that they didn’t think I’d see 6 months…
I have worked SO hard, not just physically but mentally & emotionally, to be here still. It’s meant that my sole purpose in my life is to stay alive, that making decisions at the right time, making the right decisions in general has become a daily need, because everything I do has consequences on my health, it had been exhausting & at times it’s hard to see where it’s all leading because realistically I won’t be able to achieve anything but staying alive, a lot of ships have sailed in terms of what life could have been, but I’ll always believe I’m where im meant to be.
I have achieved a lot, from being told a lung transplant will likely never be on the cards due to how weak my body to it actually being something we can seriously consider & expect when the time is right, I did that, I put that work in despite being given up on by my team… people will see it differently but whilst they were shrugging their shoulders I was plotting how to turn it around & I have not got a lot to thank them for unfortunately.
I bought myself some time and that’s been so important to me, to not follow the path they wanted me to take & to make medical decisions for myself even if it was against recommendation, but I think I’d have been dead 6+ months ago had I not done that.
So all I have to do, is that, over and over again; infinite life expectancy 🤣 told you I wasn’t done yet 🖤

[@JackieCredland]

Happy Birthday Jet, thanks for the update. Keep smiling - you are doing so well. Xx

[@tettyfelarious2304]

“Why cant it be follow the butterflies?” made me laugh!
Happy Birthday! Every year over 30 is a major achievement with CF isn’t it. Hope you had a lovely day with your little boy :)

[@spynles7947]

Happy birthday Jet. Just my opinion but I'd take anything the medical profession says with a grain of salt. They treat everyone as a generalisation/stereotype rather than an individual that can have subjective outcomes. You may have touched on this in a previous video and hopefully not too much of a stupid question but Trikafta wasn't an option?

[@lowenplas]

Hey! So I am very much flying solo right now other than lung medication & IV antibiotics, because NOTHING was improving & heading downwards fast and everyone was shrugging and I was desperate so I made a few decisions against their advice and I’ve managed to keep myself a little more stable, only stable but that’s better than dead! Trikafta is a big no for me, and I don’t say that lightly as it did wonders for my lungs but everything else was deteriorating & I wasn’t leaving the house.