Yesterday evening was such a blur.. mum & I doing a small bit of christmas shopping in Basingstoke, I was trying a jumper on and mum was on her phone. So I come out of the changing room and she called me over and said 'double check I've read this right..'
As I look down to her phone I can see in writing that they have agreed to fund Kalydeco!!!!!!!! I was in shock and had to read it about 5 times before I could even begin to believe it.. we did not think they'd agree it at least until the new year and even then we expected we'd have to fight!
At the moment they've agreed to fund it in England, so we still need to fight for the rest of the UK to get Kalydeco but whey what a start..I'm sure now it's been approved in England it'll follow suit to be approved everywhere else!
I still can't quite believe it, even as I'm typing this I just want to ring hospital and be like 'are you sure?!'
So last night we thought we'd celebrate with a gorgeous bottle of pink champagne!
However, Kalydeco is not a cure.. we STILL have CF, we'll still get chest infections, we will still need IVs and stays in hospital but Kalydeco means that these will be so less frequent than they are now as our health will be much better! It increases life expectancy. It's a massive leap forward and the first of its kind but before I get people going 'so why are you still taking tablets and going to hospital' it isn't getting 'rid' of my CF! My lungs will hopefully just become a lot happier now than they have been :)
Hospital on Tues I was fine, tuesday eve I began to feel a bit poo and now I've had yesterday and today off work because I can't manage it :( which I hate, I want to be at work..plus its the last week and today I'm meant to be having christmas dinner with the students and I'm missing out on that. And I'm missing out on a night out tonight too..that is one thing that really gets to me, when I have to cancel plans because I'm too unwell but now with Kalydeco hopefully I'll rarely have to do that.
So I'm relaxing today, popped a dvd on and I'm laying on the sofa with a blanket in my pjs. I spoke to hospital but I'm undecided on whether to go and see Dr Ho or not..Judith said I could go down at 11.30 but I don't want to seem like I'm making a fuss if this is just a nasty cold and doesn't go into a chest infection..however I am coughing more today and it feels like I've inhaled glue! And the last thing I want is to be ill over Christmas so I might see how I go over the next hour and then decide whether to tough it out or pop down!
Anyway, like I've said.. I am still in shock. I popped a status up on facebook last night & the amount of support I've seen has been wonderful, even people I haven't spoken to for years which I think is lovely & will hopefully raise more awareness to help us get Kalydeco for the rest of the UK.
Kalydeco is being funded from 1st Jan, and Dr Ho said it takes around a month for it to get to us as they need funding from other places or something so I probably wont get my first tablet till the end of Jan but I WILL be updating my blog about that! Very excited for that little blue tablet :):):)
If I don't post again...