Thursday, 25 August 2011

Bad News, Then Some Better News!

I apologise for the lack of updates, I haven't really felt like blogging and some things had been playing on my mind a lot and was unsure how to put it into words...

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 :)

Friday, 12 August 2011

I'm Back With An Update!!

Well, I couldn't stay out of hospital too long! I've been in 5 times already this year, prior to going downhill, I'd usually stay in 1/2 times maximum, so we are already at 5 hospital stays in 8 months!! 

I had a very bad night about a week ago, I spent the whole day and night coughing up pure blood, had oxygen levels of around 80% whilst on 2/3L of oxygen, I hate to think what they would have been had I not been on oxygen! I was very breathless, to the point that even trying to speak was exhausting, I felt completely clogged up as if there was literally no air in my lungs, it was very very difficult and at times I wasn't sure if I'd make it through the days, so I gave in and called the hospital and they arranged an appointment for me, from which I was given a bed and here I am!

I've been on IV's now since Thursday afternoon and I'm not feeling better yet but I will hopefully feel the benefits soon. I'm also having extra calorie supplements, a 300 calorie drink and 3 shots of something called Calogen down my peg tube which gives me an extra 800 calories a day, so with my feed that's a total of 2100 just from supplements, because on top of that I am eating a lot too, the weight should go up now we are adding in all those extra calories!!

Anyway that is a quick update on me, It's been very difficult and I'm thankful for all the supportive messages I have received, it certainly has cheered me up and brightened up what has been a very tough time!! 

I am going home Saturday morning because I have a few things to attend this weekend which I did not want to miss, then I'll be returning back to hospital on Monday. I'm glad my team have given me permission to carry on living and attend these things even whilst very unwell. I like to keep going and sitting in hospital for 2 weeks on end drives me crazy, however, the rest was very much needed and eases the pressure of trying to struggle doing things at home :)

I'm hoping that my next blog will be from a slightly healthier Kerry!
Thank you for reading.