Wednesday, 6 March 2013

Fab lung function & then my lungs decide to throw a strop!

The buzz I felt from Kalydeco in half term was amazing! I haven't had that much energy for years..I felt like I could pretty much do anything and everything. I went back to work last week and because I'd been off for 5 weeks so ill I was absolutely knackered the first evening!  It was wonderful being back, I'd missed it so much and being able to get back in to the routine was great.  I even went swimming on the Tuesday with the students which was incredible..previously when I had gone with them it didn't feel as easy on the lungs as it did this time which is a promising step :)
This week started off amazing. I went to hospital on Tuesday for my 1 month Kalydeco check up - wondered if my lung function had increased at all.. In two weeks it had gone from 1.88litres to 2.1litres! I was shocked, that's the best it's been for well over a year! So in the one month that I've been on Kalydeco my lung function has gone from 1.5 litres to 2.1 litres, just incredible. 
I tried reducing the steroids to 5mg every other day but my chest started to feel the strain so rather than jeopardise the Kalydeco check ups and tests over the next couple of months I've decided to stay on 5mg of prednisilone a day which I really didn't want to have to do.. I HATE steroids, they make your face and tummy bloat and make your moods so up and down which is just a horrible feeling.  But I don't want to risk ruining my lung function so once I've had the 'you can carry on taking K' appointment at the end of April I will try reducing them again.
Saw this on a friends instagram!
The 'nay' part is that yesterday I woke up with an awful really sore and swollen throat, could barely eat or drink all day.  Although my lung function was fab so I wasn't worried about it spreading to my chest.  However this morning I woke up with an awful migraine, I was in bed till midday as I just couldn't get out as my vision was blurry and I felt so sick with it.  Great, another day off work when I've only just started back..I was NOT a happy bunny! It started to ease off in the afternoon which was great but then as it got to about 6pm I realised my chest wasn't feeling so great..I couldn't run up the stairs like I've been doing since I started K and it feels so clogged :( Literally within the space of like 2 hours I went from feeling pretty much fine to quite crap! My nose is also all bunged up so I can't breathe through there. My headache started to return, I felt like I was going to be sick and started to feel quite out of it. 
Thought it best to check my temperature and OH FAB it's high. Just felt like bursting in to tears, not because I'm really sick or anything because I know I'm not, but just because I was starting to feel so good and it feels a bit of a knock back down just as I'm getting used to feeling better - it would have been nice to feel good for more than 3/4 weeks before I started to feel ill again! I know that sounds so stupid as this is probably just a cold & shouldn't spread to my chest but hopefully you will understand where I'm coming's not always down to how sick you are, it's just the fact you've worked so hard to get better & although you're miles better than you were it's a small knock back down and it's irritating more than anything - plus there's always the worry that it will spread to my chest and I'll end up back to square 1! I'm hoping it's just a few days of a shitty cold and my little lungs are throwing a strop and that by the weekend I'll be back to my bouncy self! :) 

Me & Steph in our week off!


  1. Hey girrrl, chin up, hope you feel better... fast .... hopefully just a minor setback an you will be all good again in no time... Bless

  2. I feel your pain! I was ill for months and months, went clinic last week and did the best lung function in a year and a bit and then after one day of finally getting back to work after a month BAM I'm ill. This is typical CF isn't it, always the way! I hope you feel loads better soon xxx

  3. I've nominated you for a Liebster Award! Hope you enter. Click the following link to find out how to participate.

    Hannah xx

  4. I here yaw!!! You think u are over a dose of being unwell and then with no warning at all you are just unwell. Again. With something silly , just that something silly makes you v weak :/