It's finally official. Today, 30th May 2012 I have been listed for a double-lung transplant at Harefield hospital!!
I've waited a very long time to be able to write this blog and I have no idea what I want to write but I'm just going to let it flow and we'll see what happens :) it may be all over the place as that is how my head feels right now, like mush, but hopefully it might make some sense :)...
I feel so excited but frightened at the same time, it's weird, right now I feel literally every emotion possible. As I stated in my last blog, there have been times when I didn't think it would ever happen, but it has and I'm absolutely over the moon that I'm finally listed!
It's hard to put into words just how I feel because I'm not sure I even know what I'm feeling, lol! I'm sooo proud of what I've achieved, the fact I increased my weight by almost 2 stone, going from a very scary BMI of 13.3 to a healthy 18, improving my average blood sugar from 16% to 9% - all this while getting more and more sick, I can see why a lot of medical experts didn't think it would happen and from their persepective, what I've done was pretty insane and defies the odds! It's extremely difficult for us CFer's to gain weight and control our sugars when we are well so for me to have done all that as ill as I am is an achievement :) and the fact I survived 3 lung serious collapses, infection after infection, setback after setback, yet I'm still standing!
It was so important for me when I had my actual assessment because it was suddenly real, that I'd done enough, even if I'd never got on the list I'd still got to the point where I was safe enough to transplant, but to think now I'm a giant step closer. Literally, I could get a call tomorrow, unlikely I know, especially with my blood group being what it is, my wait is expected to be 1 year to 18 months but it actually can happen any day.
Before I was listed, I was seeing myself going downhill fast, day-by-day. Yet there was no hope to cling onto, no light at the end of the tunnel, I was absolutely stuck in limbo but I still kept the belief and I carried on.
But now it's different, no matter how ill I feel or how much of a bad day I am having, I have that hope of a call, and that is something I can hold onto because a call could come at literally any second, it's exciting but damn right nervewracking at the same time!!!
I don't think anyone can ever be prepared for a transplant or all the feelings that come before and after, even though it's been 1 year and 7 months since I was told I needed to be listed, it still hasn't sunk in and I don't think it ever will, well not until it's happened anyway, I know I'm a lot more unwell now than I was then but I still feel weird, it's like I can't believe I am at this stage, but then I see myself on 24 hour oxygen, permanenent IV's, morphine and heaps of medication, then I realise I actually do need this transplant more than ever and now I finally have that opportunity :)
I am keeping everything crossed that I get new lungs, I need to stay well enough so when the call comes I will be ready, I can't let the weight/diabetes slip now I need to maintain this standard and keep going. The reality of the transplant list is that 50% of people in my situation aren't going to get the transplant, but I know I'm going to get there :) I've fought way too hard to get to where I am today, I'm not stopping now, no chance!!!
New lungs, new lungs, new lungs, there is no other option now :)!!!!!!
Again, I just want to say a huge thank you to everyone for the continuous support, it really has been so motivating and has genuinely helped me to get to where I am today, where is that I hear you ask?! ...On the transplant list!!!
Thank you for reading :)