Going to try keep up to date regularly with this blog now!
Sorry about the last blog had a lot of ranting to get off my chest!
I can't really put a finger on how I'm feeling at the moment, I'm like a bloody yoyo, up and down. Sunday i was a mess, had this horrible Muzzy head that wouldn't shift, lungs felt like they were drowning me and just felt so tight...yet yesterday I was buzzing and had such a good day, until I came home that evening and the dreaded headache returned, felt quite feverish, hot then cold, goosebumps would come and go, just couldn't settle. Had a restless nights sleep, constantly coughing, struggling to breathe, back to going to bed every night with oxygen, have done now since end of November, just all getting to me now, clearly kalydeco isn't a complete cure for me which I knew it wouldn't be but these little moments just bring me back to how it was waiting for my transplant call...
I think I have an infection brewing cause its unlike me to get feverish without there being more going on, also at times feeling sick, which only happened pre kalydeco.
So after missing last appointment at Brompton due to snow, I've emailed them today to organise going up to clinic next week to see them plus need a port flush as that's over due lol.
Another thing that's been bothering me at the moment which I need to tell the doctors is my eyesight.
My eyesight has always been perfect, these good old big eyes have been in good working order all my life but just before Christmas and esp a lot recently I have been squinting a lot whilst watching tv, or looking at something in distance, really starting to notice it more and more and my vision sometimes goes blurry and I can't focus on things, really bothers me, this could also be why I'm getting headaches or a mixture.
A thought crossed my mind if it could be kalydeco doing it, I doubt it but there's always alarm bells going off in my head with this drug sometimes...
They say when things are too good to be true they normally are...and it's always baffled me that there aren't really any side effects to kalydeco.
This is the paranoid part of my brain kicking in. But think its something to mention to the hospital just incase and going to arrange to get my eyes tested next week as I haven't had one since I was a kid anyways!
Also I'm very jel of the people getting there kalydeco delivered to there front door as I have to travel up to the hospital every 4 weeks for a poxy supply!!
Can't be too jel I suppose, I have been on K longer than everyone else and should appreciate that!
Anyways off to sleep now!
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