Hey!!
Lack of blogging due to freedom!! Left hospital on the 15th and couldnt wait to escape, was getting very frustrated in that place at the moment, was in ultimate bitch mode the day i left....the new sho doctors were pushing me, takes them a few months to settle in and get use to dealing with CF patients! lets face it we aint the easiest of people but ignoring us will not make our life or their jobs any easier!!
well i have to say for the first time in god knows how long i actually feel like a normal person! im amazed at myself! normally at this point 2 weeks since iv left hospital 9 times outta 10 id be heading back in again! but no not this time, i seem to be on a proper buzz at the moment feel so good, hardly using oxygen, weather i need it or not is another matter but im not struggling half as much as i usually am, when i do get a little bit funny my sats have been like 85% off oxygen but as soon as i go on my oxygen they go straight up to like 97% then come off oxygen and they stay at 96-95% so pretty flipping good i think considering im "on the transplant list" i must be a faker ;) hahaha
like i said i think im on a buzz at the moment, weathers soooo nice, been topping my tan up plus going on sunbeds :) busy doing up the new place...or shall i say watching lee doing it! lol and been reading up so much on this new drug, mentally getting myself ready for it, its seems to be having amazing results over in america! just hope when i go to see the doctors on tuesday they will no more about it and let me when i might be starting it.
iv come to a decsion also after reading about this drug, that i might ask them to take me off the transplant list for a few months, this might sound absolutely crazy to some people, mum and lee fully support my descion....but....
transplant is supose to be a last resort yes? well now they have offered me this new drug i feel like well that transplant isnt a last resort yet, if i was to get a call for transplant now, i would fully regret having it for the rest of my life knowing that i didnt try everythign else first! transplant isnt a cure it comes with alot of problems its self, so not doing everythign and trying everything first would be a complete fail on my half!!
also transplant is so precious, i wont feel like il appreciate it enough, my heart wont be in it!
if i try this new drug and nothing improves then yes il be back to sqaure one and back on transplant list and my head will be exactly the way it was before this drug was mentioned if not more because at least then i will no i did and tried everything!
all a bit crazy stuff going on in my head.
also had some really sad news after leaving hospital last week, one of my cf friends sadly lost her battle and died the friday after i left foulis ward, it came as a real shock and not sure its really sunk in yet, she was an amazing girl and was only 18! far too young its so shit! my heart goes out to all her family, its her funeral tomorrow so will be going to say goodbye! kelly was a proper fighter, and loved her attitude, didnt take any crap from anyone! definatly on the same level as me, just wanted to be treated normal!
miss u chick! breathe easy now rip Kelly Arnold xxx
Lack of blogging due to freedom!! Left hospital on the 15th and couldnt wait to escape, was getting very frustrated in that place at the moment, was in ultimate bitch mode the day i left....the new sho doctors were pushing me, takes them a few months to settle in and get use to dealing with CF patients! lets face it we aint the easiest of people but ignoring us will not make our life or their jobs any easier!!
well i have to say for the first time in god knows how long i actually feel like a normal person! im amazed at myself! normally at this point 2 weeks since iv left hospital 9 times outta 10 id be heading back in again! but no not this time, i seem to be on a proper buzz at the moment feel so good, hardly using oxygen, weather i need it or not is another matter but im not struggling half as much as i usually am, when i do get a little bit funny my sats have been like 85% off oxygen but as soon as i go on my oxygen they go straight up to like 97% then come off oxygen and they stay at 96-95% so pretty flipping good i think considering im "on the transplant list" i must be a faker ;) hahaha
like i said i think im on a buzz at the moment, weathers soooo nice, been topping my tan up plus going on sunbeds :) busy doing up the new place...or shall i say watching lee doing it! lol and been reading up so much on this new drug, mentally getting myself ready for it, its seems to be having amazing results over in america! just hope when i go to see the doctors on tuesday they will no more about it and let me when i might be starting it.
iv come to a decsion also after reading about this drug, that i might ask them to take me off the transplant list for a few months, this might sound absolutely crazy to some people, mum and lee fully support my descion....but....
transplant is supose to be a last resort yes? well now they have offered me this new drug i feel like well that transplant isnt a last resort yet, if i was to get a call for transplant now, i would fully regret having it for the rest of my life knowing that i didnt try everythign else first! transplant isnt a cure it comes with alot of problems its self, so not doing everythign and trying everything first would be a complete fail on my half!!
also transplant is so precious, i wont feel like il appreciate it enough, my heart wont be in it!
if i try this new drug and nothing improves then yes il be back to sqaure one and back on transplant list and my head will be exactly the way it was before this drug was mentioned if not more because at least then i will no i did and tried everything!
all a bit crazy stuff going on in my head.
also had some really sad news after leaving hospital last week, one of my cf friends sadly lost her battle and died the friday after i left foulis ward, it came as a real shock and not sure its really sunk in yet, she was an amazing girl and was only 18! far too young its so shit! my heart goes out to all her family, its her funeral tomorrow so will be going to say goodbye! kelly was a proper fighter, and loved her attitude, didnt take any crap from anyone! definatly on the same level as me, just wanted to be treated normal!
miss u chick! breathe easy now rip Kelly Arnold xxx
love love
3,776 hours, 5 months 5 days on transplant list x
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