Monday, 12 November 2012

hello winter!!

Ok so now all the exciting stuff has happened in my life its time to get back to reality....and quite frankly it sucks at the moment.
My lungs have turned on me this week and im finally admitting to myself that im not well and defo need to be admitted into hospital!

typical signs, no energy, sleeping more, needing oxygen most of the time, cant just walk around the house without struggling to breathe, the cold weather literally wipes me out so trying to avoid going out at the moment, sleepless nights where i wake up in the middle of the night coughing my guts up then literally takes me hours to settle back to sleep again...theres no such thing as laying flat to go to sleep at the moment...and 9 times out of 10 i tend to wake up coughing because ive slipped down off the pillows and lungs cant handle me laying flat!!

oh the joys of CF!! even with kalydeco i dont think i can hide away from the lovely winter infections!!

i dont want people to read this and feel that kalydeco doesnt work because it does, i am one of many that is extremly lucky enough to get on this drug, however i was at a point where i had no other choice but transplant to save my little lungs i wasnt going longer than 17 days out of hospital and so far ive done 4 months.....but kalydeco has stablised me and improved me from what i dropped too. in the end of the day i still have cf and there is alot of damage in my lungs, 22 years worth of infections after infections....if someone had given me kalydeco when i was 6 years old then i most probably wouldnt be in this situation now but thats life!!

this is why we need to support all the petitions and fight for this drug so that kids born now wont end up like me at the age of 22!! they will most prob live a life as near possible as any normal kid out there without cf!!

now that wedding and summer is out of the way, transplant is on my mind again. will be a year ago on friday that i had my first assesment at harefield and i remember feeling nothing but eager to get on that list and get some new lungs.... alots happened in the last year ive had my very very low points and then massive massive highs!!

ive learnt and spoken to alot of people who have gone through transplants and seen alot of close friends loose there life to cf aswell! ive seen people get there calls and do amazingly and ive seen people have a really rough time and struggle to get through the recovery stage and come out with other problems....
quite frankly im terrified about transplant now, this time last year i was scared because i didnt no how long i would last without a transplant but i was unaware of the ins and outs, yet now im scared because i dont know if im strong enough to handle it all! i know too much about it all now and its not always a good thing!

my heads in such a whirlwind at the moment. i have harefield appointment again in december so i think i need to see what the results come back with tests etc. and speak to them and my cf team and maybe make a decision in the new year when my heads clearer. i cant make a decision when i dont know how i feel about it all!!

crazy year!!

thats all xxxx

(119 days)3 months 27 days on kalydeco

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