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! 

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