Thursday, 21 March 2013

"You know things are bad when.." Plus Kalydeco!

You know things are bad when the children you work with at school ask if you're okay because you keep coughing and tell you that you should probably go to hospital to get it checked out! Hahaha, bless them. At least they care!

Mine are usually between the 35%-63%. So when us
CFers say we find it hard to breathe, we really DO
find it hard to breathe!
Yesterday it was time for my 6 week sweat test to see if Kalydeco has reduced my salt levels - mine were pretty high before at 160! So I popped to hospital for the test which all went fine, I don't know the results yet but Judith said even if for some reason my salt levels weren't down it's fine as long as my lung function has improved which it had done..all the way to 2.1 litres which is 66% as my letter that I received today said.  
The only thing is that the past two weeks I have had this horrendous chesty cough! It wont go away - I had a high temperature for a week which then just disappeared and apart from feeling tired, I feel okay in myself..just a nasty chesty cough. So it's good that I'm feeling not too bad but need to shift this.  When I was at hospital yesterday they gave me some co-amoxyclav oral antibiotics for two weeks, so we'll see if they do anything although they're making me feel really sick (yay for antisickness tablets) and last time did nothing - but at least it's not IVs so I'm very happy to try them again! :)

I thought I'd see what my lung function was on my machine at home last weekend and it was down to 1.6.....shit. I'm guessing it's probably a temporary blip as this chesty cough is making me very tight chested and it's so rattly that I almost feel like I'm drowning in pleghm sometimes - lovely mental image for you there ;) But for some reason I've had a couple of panic attacks again..where the hell are they coming from?! The worst when it felt like someone was genuinely pushing down really hard on my chest, it wasn't just tight I actually felt the pressure for about 15 minutes and it was HORRIBLE and then caused me to hyperventilate and panic etc. Just need a bit of a slap don't I!

Me and Meg sharing a cocktail!
Last Monday I saw Alex for a while for a girly catch up with wine and malteasers! And then I saw Marianne & Meg for a loooovely Mexican meal out last week too which was delicious and lovely to catch up. And tonight Steph is coming over for dinner which'll be lovely so I better get cooking! 
And over the next few weeks I'll have my lovely uni friends coming back for Easter holidays! So I cannot WAIT to see them :) much needed long overdue catch up! Plus it means that I get Tom home for three whole weeks which is going to be amazing!

On 30th April I have my lung function tested for the Kalydeco tests so fingers crossed it's all back up by then! 

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!