Wednesday, 30 May 2012

I'm On The List!

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 :)


Kim said...

I am so happy for you! Exciting and scary, indeed! You will get those lungs, and for readers like myself, you will teach me so much more on a subject I know nothing about, and make me appreciate just how precious life is.

Thank you for sharing!

cath said...

So pleased at this fantastic news,you certainly are an inspiration...will be following you every step of the way-wont be long before you get your new lungs xxx

Mark W said...

Congratulations on being listed! You have worked so hard to get to this point and you deserve to take it easy now!Do all the things you like to do and take care of yourself, so that when you get the call you will be ready.The waiting can be hard, but I hope it will only be a short time before you are writing about your successful transplant
Sending all my best wishes for a quick and successful call very soon:)

Anonymous said...

So pleased for you. You are one amazing woman and I hope your call comes soon x

Karen R said...

Good luck you always was a fighter with a smile. I will have my fingers crossed for you.

Josie said...

I've not had internet for a bit so haven't been able to catch up with your blog and I'm so pleased to come back to it and read this! That's such excellent news and you should be so proud of your achievements and you're so right...I'm fairly healthy but struggle so much with gaining weight so I'm so in awe of you! What's your secret haha! Wishing you the very best of luck xxx

Brigette said...

Best wishes to you! I was just listed on May 29th (I'm a 30 yo F w/CF). I completely relate that you begin to feel like that day of being listed seems so far off. It's a lot of emotional and physical work to complete every test necessary so you should be proud of that :) I hope you have a short wait!

Anonymous said...

Well done!! Lets hope it's sooner rather than later hey!!
Just wondering Kerry, what happens after you've had the transplant, do you then go on to leave a normal life? Also, what happens if your body rejects them?