'So...will you still have CF after transplant?'

Today I thought I'd do a little (or a big, we know I like to ramble) post trying to explain a bit more about the transplant process, although it's still new to me so bear with me! The usual questions people ask me are when and why I need a double lung transplant. I've explained when (or rather the fact that I don't have an answer for that question) and also a little bit why, but the short answer to that is cystic fibrosis has damaged my lungs irreversibly to point that I'm going to need new ones in order to still be here in a few years time. Then the next question is nearly always 'So will you still have CF?' The answer to that is YES.

symptoms of cystic fibrosis
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As you can see, CF is not just simply a lung disease - it likes to party everywhere. So for example my digestive system will still have CF so I'll still have to take enzyme tablets every time I eat something with fat in it as my body doesn't digest food normally. However the new lungs will be CF-free and I'll be able to breathe again!

cystic fibrosis oxygen, cystic fibrosis lung transplant
Hopefully these nasal things with be a thing of the past!


However that's not to say that they don't have complications. First of all there is the op itself which is major, major surgery and very high risk, although these medical people are amazing and clever and will only operate on people they feel have a good chance of survival. Then there is always the risk of rejection, because the body is smart enough to know that the lungs are new so tries to reject them, kind of like 'Heyyyy, you're not one of us!' But this is where the body is also dumb because it doesn't realise the newbies are there to do good. So medication must be taken for life, on time and exactly as you're told to take them, in order to try and prevent rejection from happening. These anti-rejection meds aren't without serious side effects, as they wipe out your immune system meaning you're more vulnerable to infections which can cause long term damage to the new lungs. So you always have to avoid people with lurgies for example and you can't eat certain foods that contain bacteria that can make you ill, such as shellfish and some soft cheeses (like, brie, *sobs*) Infection and rejection are unfortunately common side effects of transplant which is why it's not the straightforward cure people assume it to be and is why it's used as a last resort. It's why we need to keep fighting for a cure for cystic fibrosis *cue plug for The Blister Sisters fundraising page* However it can give you some extra years that you wouldn't have without it, with an incredible quality of life too!


I was in two minds whether to write that because I don't want to look like I'm putting a downer on organ donation but ultimately I want to be 100% honest with you, as always. It's not guaranteed, it's not a cure and comes with plenty of complications but in my mind it is so, so worth the risk. It's literally a second chance at life that I want to grab with both hands (and feet and teeth and whatever else I can wrap around it.) I try not to think about these things too much in case my call never comes but I have so many dreams, the most simple one of all not being dependent on oxygen tubes to breathe. I want to go to Paris. I want to go out and dance like idiots with my friends. I want to go back on Logger's Leap at Thorpe Park, I know it's for kids really but it's my favourite ride there. I want to be around when Baby Florrie is having proper conversations so I can know what it is that she tries so hard to tell me right now in her one-year-old gobble-de-gook language. Simple things that I'm not able to or struggle to do at the moment but if I had a transplant the world would be my oyster (I just won't be able to eat them...)


Well I hope that explains some of your questions you might have had! Like I said I'm not sure I'm too good at explaining all of this, if I've got anything wrong do let me know!!

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