Thursday, February 14, 2013

Kalydeco has given me normal lung function!

Went to outpatients yesterday. Well, it's not as high as I hoped, and more importantly, it's not as high as I feel, but the scores at the outpatients were:

FEV1 2.85
FVC 3.70

Which works out for my age and height as:

FEV1 81.9%
FVC 85.3%

It's official, my lung function has crawled slightly above normal range, (normal range being 80% to >100%)  This is my highest blow since early 2009. 2009 was probably my last really healthy year (in retrospect.) 3 weeks in and Kalydeco has been awesome for me, even the physio was amazed at the turnaround. I didn't even do a best of three on the spiro machine ;-)

To put this into some kind of perspective; my last blow pre-IVs in December was 65%. My blow post-IVs in December was 65%. I had been on 2 weeks of Ceftazedime and Tobramycin and had been going to the gym 3 times a week to try and get rid of as much mucus as I could. After all that time, drug money and effort my FEV1 was the same as it had been before I had started IVs and I was pretty deflated. I was also baffled as these IVs had usually worked for me in the past. I felt slightly better but the cough and mucus were still there. The implications were that my CF was getting worse. All I can say is thanks to the scientists (and the IPIG :-))!

A loves her onesie

Monday, February 4, 2013

And on the tenth day...

Tenth day update! The mucus has thinned so much it is almost gone. I can talk properly for the first time in 2 years. I was borderline with blood glucose levels and kept getting hypos if I didn't snack every hour or two, that problem appears to have gone. I am already thinking of my life in terms of before K and after K, it's staggering...

10 days into K and I did my first outdoor 5k run of the year and I was a full 3 minutes faster than any of my 5k runs last year. It's official, my exercise tolerance is loads better with Kalydeco ;-) I feel like I have another gear while running, I haven't really felt like I had another gear since my twenties, maybe my teens...

I also used to get headaches after the runs as well. No headache today! Was a bit rattly a few hours after the run though so I think it did loosen some teeny plugs though.
O likes his batman onesie