At the hospital. No idea what that gorilla is about, but I like him! I'm not usually in a chair with oxygen, I was just feeling particularly out of puff and tired this day (not helped by the early start and long journey!)
So we arrived at quarter to 9, I had a list of tests to get through in the morning. These included:
- Blood tests (they took about 17 bottles!)
- An ECG (monitors your heart)
- An ECHO (like an ultrasound of your heart)
- Lung function test (a machine you blow into that tests how much air you can breathe in and out)
- A chest x-ray
I thought I did quite a good job on the lung function test but then when I saw the number come up on screen it was only 22% so I was a bit disappointed haha! We then met the transplant co-ordinator, she is like your port of call when it comes to the whole process. They're the ones you get in touch with when you have questions or have to tell the hospital something and also the magic person who phones to tell you there are lungs available. She was super lovely and explained some things to us about compatibility and things which I'll go into later. But after all of that it was time for lunch, I had a roast turkey dinner which was delish - my hospital most definitely needs to take note!
Then it was time to meet the doctor. I was supposed to meet the head consultant but he was ill and didn't want to come near me in case he passed whatever on to me, this made me feel in safe hands immediately because he obviously puts his patients first! But I met another registrar, she looked at the screen at my results and pretty much said straight away 'You definitely need new lungs.' I just burst into tears, there was no kind of warning and she wasn't even looking at me, it was just like woah haha! It was the first time anyone had said it to me, I'd been asking my CF team if they thought it was time for a transplant and they said it was more of a 'just in case'. I'd been thinking that Harefield would say I needed one but I thought I was maybe being pessimistic but I guess no matter how prepared you think you are nothing ever really prepares you for that moment - especially as although I feel very breathless I don't feel particularly ill right now! Looking back now that moment was quite funny, I think I scared her because there was no sniffling I was just like 'Waaaaaaaaaah!' haha!
Then the doctor was explaining how transplant isn't a cure, it's a last resort treatment when there is nothing more that can be done. There's no guarantee I'll get the new lungs (I'm a blood group O which apparently means you can be on the list a long time) and if I do there's the whole surviving the operation thing. Then the lungs won't last forever, they'll just give me a bit more time - how long, no one knows. These are all things I knew but it really wasn't nice being told them all in front of your mum, I don't even know how difficult it was for her - I honestly think all of this is worse for my family than it is for me! I feel like I need to go back and explain stuff to them though, she was asking questions about my quality of life and what I'm able to do etc but I couldn't really talk properly or give proper answers. So she was like 'Sitting in bed all day isn't going to do you any favours' so said she was going to refer me to pulmonary rehab which is like a gym/physio type thing. But I don't sit in bed all day, I'm able to do things - there's proof on this blog haha! I don't mind doing the rehab thingy if it helps but I don't want them thinking I'm this lazy bum who wallows about all day feeling sorry for myself. The way the doctor said to me after all of this 'You don't look happy' yeah well no sh*t haha! I did like her though, I don't need her to hold my hand or whatever - I want someone honest and more importantly knows what they're doing!
However despite all the risks it's a chance worth taking because it's a chance to live. So it's worth going for it I think!
But then again there is no guarantee yet I'll be able to be listed. It's really not as simple as saying you need new lungs, onto the list you go - you need to go through a whole load of tests to make sure you're a suitable candidate for organ donation. This is a 3-day assessment that they said will probably take place in February so I won't know anything more until then. So obviously I'm very nervous, I want to be listed if they say I need a transplant but if they say I'm unable to be put on the list I'll be pretty fooked haha! I'm just trying my best to not worry about it until I have to, in the meantime I'm going to try my utmost to gain weight. You know it's been a massive struggle for me but now it's more important than ever because they said I'm not likely to survive a transplant at my current weight. So of course I've been stuffing my face as much as possible!
Remember I was sad about the chicken at Frankie & Benny's? All is not lost, I found it on the lunch menu haha!
Thank you for your lovely comments and tweets, it has honestly meant a lot. For a couple of days I felt completely drained and heartbroken and this comes and goes but I feel a lot better about things now. Apart from yesterday, I was raging haha! But I think I was entitled to have a moody day, especially when people were still messaging me about how unwell their cold was making them or they hate their job or blahblahblah. I know it's all relative and if I wasn't in my situation I'd be moaning about those things too but I do wish people had a bit more tact. I'm usually very happy to be there for people but this week I kind of needed them to just not bother me and it's a bit baffling that they just didn't realise that. You know I'm not one to be down in the dumps and I'm not feeling sorry for myself, it's just a huge thing to get your head around! More than anything I'm worried about my family, when my brother was ill last year I know how horrible and upsetting it was for everyone and it's so unfair to think they'll have to go through it all again. Also, and it sounds weird, I just feel so sorry for my lungs haha! They're so battered, poor things - all they wanna do is do their job and CF stops them!
But mostly I'm very lucky to have the biggest and best family and lots of family friends and I know whatever the outcome of things I'll not ever be alone. Not everyone has that so I know how fortunate I am and I'm so grateful to them all! I also have a great CF team and I liked the people at Harefield so I feel in very safe hands indeed. So for now I'm just going to throw myself back into what I usually do, which is trying to do as much as I can and enjoy myself! And also look forward to Christmas (it's never too early!)
But mostly I'm very lucky to have the biggest and best family and lots of family friends and I know whatever the outcome of things I'll not ever be alone. Not everyone has that so I know how fortunate I am and I'm so grateful to them all! I also have a great CF team and I liked the people at Harefield so I feel in very safe hands indeed. So for now I'm just going to throw myself back into what I usually do, which is trying to do as much as I can and enjoy myself! And also look forward to Christmas (it's never too early!)
Sorry if this post is rambly, I just decided to write it and not edit because to be honest it's all I've thought about all week and it's time to move on haha! But I thought I'd tell you all that happened while it was fresh in my brain, not because I want attention or people feeling sorry for me or whatever - just thought someone might find it useful or informative. I really want to get the point across that transplant isn't a quick fix cure like people think it is! You can check out my post on organ donation here!
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