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


Cystic Fibrosis said...

This is really fantastic James!! Made my day!!

Anonymous said...

Really pleased for you
Mother of a 21 year old with CF

Katie G said...

This is awesome! I'm sure you will continue to improve. So so happy for you Woody.

sophie jayne said...

Incredible.. I have linked your blog to my recent post. Just seems relevant to what i was talking about :)

So pleased for you Woody!! :D x

Woody said...

Thanks guys!

Anonymous said...

Thats amazing, hope you keep improving :)

Me said...

wow how did I miss this! So amazing! Maybe you will get even higher next time!