Cystic Fibrosis Awareness Month

Maybe it's time to share the real nitty gritty.

I talk about transplant on here a lot but cystic fibrosis, the bastard that caused the aggy lungs in the first place, barely gets a mention. But I really wanted to write a post for Cystic Fibrosis Awareness Month and as we're coming up to the end of it I thought I had better finally publish something.



One thing I feel I should clear up is that although these shiny new lungs don't have CF any more the rest of me does - as if it was ever gonna totally go away, you know how bloody persistent it is. It's still there, lurking around in my other organs causing mischief from time to time but I can live with it. It was when it was in my lungs that it really buggered my life up. To breathe is the most simple of acts for living things to do and when you suck at it life isn't half difficult. I look back on old blog posts and I feel like I was so blasé about it. I knew it wasn't normal but it was my normal, I didn't know any different so just got on with it. Of course I had wobbly moments, all well documented on here to my great embarrassment, but on the whole I felt like wishing for anything different was a waste of time and I didn't have time to waste. Also maybe I didn't want to admit to myself just how bad it was because as much as I bloody hate the whole 'the only disability is a bad attitude' thing there is something to be said for having a positive outlook. 

However since transplant life has changed so dramatically I couldn't even fit it all into one blog post. Now I do know differently and now I have this new perspective on what living with crappy lungs was really like, as if I'm looking from an outsiders point of view. The specifics have slowly faded away over the past two years since transplant as I get more acclimatised to having lungs that work properly. But I do remember the general ways of it and I can see now that it was fucking awful. From the age of two when I was diagnosed up until 23 when I got the transplant it was a chest infection on even a 'good' day but it was x10 whenever I got ill. I had years of pill popping, IV antibiotics, physio, nebulisers, hospital tests, hospital stays all in an effort to just stay alive yet still my lungs packed in, which is just plain rude in my opinion. I don't want to make anyone afraid by sharing this photo again but I think it needs to be as although I look like I've been in a car crash or something all the destruction was happening inside me as a result of cystic fibrosis. It doesn't mess around! You can read more about my transplant story here but basically the got so fooked they stopped working completely and when the surgeon removed them he had to literally scrape them out they were so stuck to my insides - noice hey? But I'm sharing this because I'm not the first person CF has done this to and I won't be the last, though I was one of the lucky ones who got through it.

Smiling, because I was off my fookin' head on drugs.

I have happy memories, of course I do, but CF robbed me of my early adult life as it decided to really go hard as soon as I hit 18. It's a degenerative condition, so bar IV antibiotics every three months and the hours of treatment I did daily my childhood was relatively healthy. But we always seem to say that, 'relatively' - it's the same when we talk about the life expectancy going up and the average person with CF will live to the age of 47 as something to be celebrated. Of course it is, but that's not very old at all. It's only now being post transplant that I can truly see how unfair that is. 

Life now is beautiful, I'm not exaggerating when I say it's like a dream. Or maybe it's not, because it's greater than anything I could have ever dreamed of. I've written plenty on all of the wonderful adventures big and small these new lungs have allowed me to take but it's important that the reason I ended up needing them isn't forgotten. As positive as life is now these lungs are most likely going to give me a few more years - they come with complications of their own and I won't make 47.  This is fine, I accept that and obviously I'm so grateful for this extra time but it's my hope that one day no one with CF will ever get to that point of needing new lungs. I think that past me would have written a post being a bit like 'I have CF but CF doesn't have me!' Well it did, it fucking owned me and nearly killed me. It was only because a stranger and their family saved me through organ donation that I had any chance of surviving. I always reference Game of Thrones, I think of the Battle of the Bastards. I am Jon Snow being suffocated by CF Ramsey and then I am rescued by Sansa and her men, my donor and the amazing NHS.  Getting to that stage was humbling, when I was sitting there on oxygen 24/7 and literally relying on machines to stay alive I thought 'Ah ok, this is how truly nasty CF can get.' I always thought it was horrid but it really upped the ante here and went Regina George on my ass. 

So I know that this isn't really one of the more positive posts I've ever written but I didn't want to sugarcoat anything - it's a horrid illness and although you can, because you have to, find so many wonderful reasons to love life when you have it it brings a lot of suffering too. Not just to you, but your loved ones also. That's the thing I hate the most about it, I can accept what will happen to me but I don't think I could be so okay with it if it was happening to someone I loved. I have lots of friends with it who are some of the most amazing people I know and it breaks my heart to see what they go through. It's why we have to keep fighting for drugs and research to be funded and that people with CF can live as normal a life as everyone else. 

Check out the CF Trust website here! Or click here for my CF posts or here for my transplant posts if you fancy any more information!