Tuesday, 4 September 2012


Bit fed up at the moment. Don't seem to be on such a high from special K at mo! Feel so tired, no energy, no motivation!
I went up to the brompton the other day in my head to start ivs, as feeling like this made me think I might have an infection, it's so hard to tell these days as kalydeco brings up so much and gives me a few mixed signals...all so new to me..so knowing if I had a chest infection coming on was a bit tricky.

Well got up there and everyone still said how great I'm looking (health wise) and I have to remember that they been so use to seeing me with oxygen and in a wheelchair for the past year that although I was feeling bit rubbish that I'm a million times better than what I was months ago.
This was first time in years id come up to the hospital on my own...not that my mum neglected me lol I wanted to do it on my own like old times!
That again was a bit of a shocker for everyone think they were expecting me to say "she's gone to get a coffee" or "she's parking the car" lol

So did sats and blood pressure which was all good resting sats we're 95% on air ;) weight was 38kg lol stabilising could be better I suppose...

Then dr came to do me lung function it had dropped slightly from 23% last clinic to 21%....hardly worth worrying bout seen as though I was only 19% pre K so all good. I wanted to do home ivs as orals never work for me and wanna be best I can, and needed port flush anyway, so started on cef and Tobi home intravenous antibiotics (ivs)

They didn't bother doing x ray for some reason said they never bother for home ivs...bit of a shock for me as I always have x rays, did try get her to request one as I was intrigued to see what the difference was from now to pre k but she weren't haven't it, so gave up had bloods done though!

After a few hours waiting around for drugs and having first dose and getting assessed on how to do it even though I've been doing home ivs on and off since god knows how young they have to check each time or every 6 weeks! Lol I got my nurse to check my crp (infection levels) and to my shock they were only 20!! I couldn't believe it! After having ivs in hospital before I started kalydeco my crp was 70 odd when i finished ivs and I think for a normal well person they have to be between 4-11, so I was pretty over the moon about that...which made me doubt my decision for starting home ivs now...kalydeco is clearly working and maybe I should have held off the ivs until I over came this "bad patch" but I went with my natural instinct....

Although im feeling very zoned out at the moment weird how it can affect me the older I've got it happens a lot now, they make me sleepy and dazed and there not even strong ivs just standard normal ones! Also first time in a long time I've not had anti sickness iv with it!-So far so good so fingers crossed it stays that way!

I'm hoping il start feeling a bit brighter in next few days...feel like a drugged up breathless tired George at the moment and not particularly enjoying it...want my special K high back!

Something that's really starting to piss me off at the moment and can't help but write about it is certain CF people (mainly boys/men with cf) are talking about how fitness is the key to not being I'll and never having ivs or EVER being admitted into hospital....don't want to dig or come across as jealous...well to be honest yeah I am pretty jealous who wouldn't be in my situation...living a life without hospitals, admissions, needles agg after agg, of corse I envy that...but the thing that REALLY pisses me off is when they come out with comments like, "people who don't do fitness that's why there in hospital etc etc"

For the record I was in and out of hospital with endless infections before the age of 2 years old.... Now please inform me what child of that age or shall I say "infant" does exercise?? So how could I have prevented myself from these chest infections?

It's bollocks they get all high and mightly expressing these opinions and say how we must not have looked after ourselves, purely because they haven't experienced a life of cf like myself and many others...it's insulting and makes it look like we don't try or take care of ourselves or that we choose to be "I'll"
Plus it's a known fact that once cf girls hit teenage years with our hormones etc that it affects girls a lot more and can make them a lot iller.(sorry bad English)
One thing that's very hard to understand ESP as there is so little in the public eye about cf as it is, but there are sooooo many different levels of cf, not every person is the same and not everybody's experiences are the same.

so for those of you who have made stupid ignorant remarks, if you haven't lived a certain way...then you shouldn't comment about it or have such strong opinions!

Rank over! I'm off to sleep feel better now haha

39 days off tx list
49 days on kalydeco


  1. I bhave been having similar feelings about this fitness stuff. It is amazing how excercise can hold off infection etc however as you say not everyone is the same. I was very very active and tried so hard to keep fit, but i still got hit with infection or get knocked for 6 with flu. Also, these people are often fitness instuctors who only work a few hrs a week and spend all of their time working out. Not everyone can live like that.

  2. I feel the same about my pre tx lungs with the fitness stuff because to be quit frank every1s saying fitness fitness fitness but i bloody was and it didnt stop me from decliningb and nearly dying . yes it helped me and slowed it down a tiny bit but heck i was still only 21. These ppl who have great fitnes, no ivs and are doing really well are mild CF. Fact.

    Hope u pick up soon hun, also ivs might just give u that boost and get u a bit more room with this new drug :-)


  3. Precisely Kirstie! I'm glad I'm not the only one who thinks like this...thing is these people who have the fitness opinion don't understand because they haven't experienced life like ours x

  4. When I was a kid I was relatively healthy and did some sports. But there comes a time in cf when those things become impossible. Yes it's good for you to be active, it is for anyone cf or no cf. unfortunately depending on how it progresses you can't all be rubbing marathons and doing hours in the gym we all have different limits dictated by cf. This time last year I swam 3x a week and now I get a temperature just from the effort of leaving the house!!! Things change. I think people who insist on been fit as the ultimate keeping well tool are nieve about cf and how if effects people.

  5. I agree, Fitness is really important for CF in general but IT WILL NOT STOP THE BUGS!! Thomas was only 13 yrs old and very fit, playing competitive football when he hit his all time low!! And nothing he / we did helped. Thankfully he has stabilised now but only after very aggressive hospital treatment. All CFers are very different. There was a guy telling me the other day that he doesn't take any meds and does no physio etc and feels great......Good Luck to him. I hope it lasts.

    Keep your chin up George, remember Ferya went through this stage too and has come through it. xx

    Marion F x