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!|
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 from..it'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!|