Friday, 16 November 2012

4 months today since started Kalydeco!

Bonjourno all!!

so today it has been 4 months since i started the wonder drug that is Kalydeco!

Ive not been feeling my best at the moment, but in the world of CF the whole lot of us always need a bit of TLC before Xmas, with all these bugs around and obviously none of us want to be in hospital for Xmas, we avoid it like the plague!! nothing more depressing than that!! Ive done it a few times or managed to escape Xmas eve!!
Anyway even with special k threes not escaping this!!

so realistically Ive been feeling unwell for about 3 weeks but with the wedding and everything Ive been putting it off, only this last week Ive resigned to the fact its time to get an mot! lol

i informed my team before coming up that i was unwell and needed to be admitted, and just on the off chance they might have a spare bed for me today i went to clinic prepared with an over night bag with the essentials!

got to clinic and signed in with my new name of Mrs Compton (still odd) haha everyone congratulated me, as they saw my name had changed :) and i was put into a room.
Had my weight done which is by my surprise has stabilised for months now without making any effort of 38.6kg, considering my appetite has been rubbish and sometimes eating one meal a day its pretty clear that Kalydeco is working its magic!

then the physio came in, new lady id not met before, sats were 88-91% so not great but could have been worse i wasn't on oxygen or anything and had been walking around.
next lung function and last time i was in clinic was 2 weeks post starting Kalydeco and i was on a massive high then feeling the best id ever felt and my lung function was 23%
did my blows today and almost felt like dying throughout it, but too my surprise it come out at 23% :S
couldn't believe it, mum and i had guessed before it would be about 15-18% because i was so breathless walking around and just felt awful!!
i was shocked... messes with ya head to think i felt that unwell yet my lung function was coming up at its best since K...

so off she went, then the dietian, was the usually bla bla bla you gotta eat more do ya ng feeds bla bla bla i know all this but im rebelling on doing feeds at home because i don't want to cough and chuck up everywhere on my lovely carpet in bedroom in case i don't make it to the toilet...so i just said il promise to do feeds in hospital, don't care if i chuck up there haha nurses can clean it up for me! plus even more reason to get them to try get me in asap!

then dr came in...was just telling how i feel, tired, out of breath, needing oxygen more, hadn't left the house all week, having a bath tires me out, just the usually chest infections symptoms...so I'm on the list to get a bed...but realistically it will be at least a week but no longer than 2 weeks before i get in!! which is crap, i have my harefield appointment in two weeks and wanted to be at my best for that so i can talk to the team and not make any rash decisions etc... i explained this and she understood.
i also spoke to her about the transplant and my feelings about it.

my minds in a bit of a fuzzle, this time last year my lung function was 16% id had a rough year after my lung collapsing and all i wanted was to get on that transplant list and get me some new lungs, i kinda went in knowing nothing about it as well, naive really....a year on having dipped so low and gone so high after  being given this new drug and not needing to be in hospital since its all a bit crazy. without kalydeco whos saying i would even be here now without a transplant. but i know and have heard so many stories about transplants now the good, the very lucky and the bad and im terrified now, i just literally dont know what i want! and the fact my lung function is so good (for me) even though i feel so unwell just makes me think well what will i be like after 2 weeks of ivs in hospital with all the best help around me, get my feeds inside me to improve my weight just max me out on the best quality of care...could i reach my target of 30%??
if i was 30% why would i put my life at risk of the chance of a transplant going wrong when my quality of life is stable and good?? you got to remember ive been bad, really bad so although you might read this and think ok what about having lung function of 100% surely thats better.... yes its the obviously choice but like all these things it comes with other problems etc, i dont think im ready to take that risk again yet.
plus once i have a transplant i cant take kalydeoc anymore because of the anti rejection drugs, so although lungs would be good, cf could start affecting the rest of me, ive been lucky so far in that sence!!

also people who have had transplant have never experianced kalydeco, when i sit back and think about it, its not just helped my lungs. this is naughty of me but i want to be honest...im rubbish at remembering to take my vitamins and some tablets some times and before special k if i forgot to take them i would get sores on side of my mouth.....i havent had that since starting k!!
dont have any tummy problems...

my doctor also told me about a cf confrence they attended in america in october and the main subject was obviously Kalydeco (ivacaftor) and she said they showed a slide show of cf lung damage before starting k and then after being on k and the damage started to go...and once k was stopped the damage started again.

so once ive been admitted as an inpatient were going to do some research into me!! lol xrays, sweat tests and trying to get them to do a ct scan just to see what the old lungs are really like....might have to fake a chest pain for that one ;) hahaha

yeah so just waiting for a bed now and no doubt once i get in il have plenty to moan about ha bordem and the smallest things annoy you in that place :)

laterrrrzzz lol


1 comment:

  1. Perhaps you have been rushing around and pushing yourself way to hard way too soon? Is your cough still super productive and think and sticky? Did your last sputum grown much? If so maybe some IV's would not go a miss! also if you did manage to get your weight up a bit that may also help on the tiredness/ energy front. I bet with the neg feeding in hospital you could put on a wee bit :) Glad your LF has gone back up! Even if you dont feel tip top.