FINALLY I have amazing news and I have got Kalydeco! I was planning on getting it tomorrow but I had a hospital appointment today anyway, did the exercise test as the physio had time & therefore they said I could leave today with K!
So yay! I must say though before a million people ask, there is a link on my Kalydeco page which explains how it works as thats better explaining it than I am. It is NOT a cure, I've had quite a lot of people say that now I'll 'be cured' or 'wont have meds' anymore and that isn't the case. Yes, this little blue tablet is bloody amazing and does mean better lung function, stable weight, less time in hosp or on IVs but I still need to do ALL my meds, nebs and I will still have IVs, get sick and be in hospital. K just means that hospital and IVs will be less often and the scarring from infections will be less :)
As the tablets have to be 12 hours apart I need to fit it in with work etc so my first dose will be 7.15 tonight! Very excited :):):)
My hospital appointment on the hand did not go so well in some ways. My lung function had gone back down - boo hoo :( - and for some reason my SATs (oxygen levels) decided to muck around..they were 92 at rest (mine are usually 99) so was a bit worried, as I did the exercise test they started dropping to mid 80s. I spoke to Judith & explained that I get awful headaches when I wake up in the mornings or if I've had a nap during the day..she said hopefully K will sort it out but if in 2 weeks when I go back it's still the same - or gets worse in the mean time - they might keep me in for an overnight observation to see what my SATs are doing when I'm asleep and also when I'm walking etc. Fingers crossed it sorts itself out please! :)
They said I could come off IVs as after a couple of weeks I seem to plateau, so Dr Higton said lets try a break, K might kick in a help, if not I'll go back and try new IVs/stay in hospital for a bit.
So there's my exciting news, finally joined the Kalydeco Club ;) I'll be updating my blog quite often probably over the next couple of weeks on how I'm doing so keep checking back if you're not bored of all my ramblings yet!
Lots of love
eeeekkkk you got K!!! can't wait to here what results you get :D best of luck x
ReplyDelete