It started with the day I left hospital, when my doctor came in to tell me I was okay to go and finish my IV's at home she then rained on my happy-going-home-parade with some not such good news -
I'll cut it short, they said they don't think I will get my weight up in time, with transplant there is only a short space of time in which to get on the list, when you are classed as 'too ill' for transplant, you cannot be listed. They said judging by my x-ray this admission compared to my last one in May there was significant difference in my lungs, basically meaning they had got worse in a very short space of time and the fact my weight has remained stable and not really increased much lately is suggesting I could be out of luck. I'm allergic to the best feed calorie-wise, I'm allergic to almost all of the calorific supplements and have very limited options for weight gain, there are things I can have and am having, but the best things aren't available for me unfortunately :(
So I'm in a bit of a difficult situation at the moment regarding the weight, but of course I am still trying very hard to eat as much as humanly possible, consume the extra calories from the supplements I can have and just hoping that someone throws me a lifeline soon and that my weight magically increases by the last 7 pounds that are required!
It's difficult knowing my time is running out, but as always, a happy positive mind is always needed in situations like this. I could of course decide to give up, but that is not me and never will be, I am determined even if I'm unable to get on the list I will continue working hard to maintain my health and increase my weight, because anything is better than nothing.
Now onto the better news, I have managed to secure myself a referral (finally) so a letter will be sent off to Harefield and I will be able to attend a transplant assessment, my thoughts were - even though my weight is too low to be listed at the moment, at least we can tick all the other boxes - I could have some underlying problem and be refused for transplant anyway, so at least I will be wiser as to what is completely required of me to get on the list, if I'm lucky enough to have that chance.
So as always I like to finish on a positive note, there hasn't been too much to smile about lately but I still am :) I didn't make it to V festival as I was too unwell, but I did manage to attend the poker finals which was fun! I went for a nice meal last night and went to see some family tonight!
CF, transplant or my weight will never get me down, regardless of what curve balls are thrown at me and what hideous obstacles are planted in my way, I always try my best to keep a smile on my face and overcome those hurdles in ridiculously high heels of course ;)!
Thanks for reading :)