Quick update; just heard back from the doctor at hotel de la Wythenshawe and my sweat chloride has gone from 120 to 62! Lf is up by 15% as well. More importantly; I feel loads better! I'm running out of superlatives really, my lungs just feel so much better than they ever have, or at least were when I was much younger ;-).
Scores on the doors for my lung Function were 2.775 / 3.8; no significant change on what it was, but I'm fine really, I've gone from choking in mucus first thing in the morning to having hardly anything there first thing in the morning. Oh and I can run for 20 minutes down the gym without bringing *anything* up, craziness! that would never have happened before K, except maybe back when I was 15...
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10 comments:
gosh that's amazing! Its seriously like a miracle drug!
Wow, that's fantastic and gives me loads of hope for the future!
from a fellow Wythenshaweian!
Woody,
Thanks for the update - it's all hugely encouraging to read. Maddie started on K in late Feb and is off for her first follow-up clinic next Monday, so our fingers are crossed for a big drop in sweat chloride (we are not expecting much change on spirometry).
ps: keep up the good work on the CF forum about untrialled stuff.
Thanks guys hoping the upcoming trials for yous do the business
- Maddies family: Hope Maddie gets good results from K next Monday, it really has transformed my life.
Hi Woody,
Clinic yesterday. Weight has increased by 2kg (but hard to say if this is a direct effect of K as (1) it had plateau'd and then dropped off over previous 6 months (2) we have been more careful to spread creon out over the course of each meal as she has been eating very slowly (3) higher fat diet with K will undoubtedly have some effect). FEV1 was nominally up by 6% but her technique is completely unreliable (she blew between 90 and 105% yesterday) so I am not placing much weight on that either.
Sweat test results have just been phoned through by the wonderful CF Nurse Specialist at the Brompton. They run 2 tests on each occasion. Baseline results in January were 97 & 107. Yesterday they were ... 22 & 23. I completely lost the power of speech when on the phone to Jackie.
Wow! great results!
The cause of much blubbing!
Woody
I'm speaking at the CF Trust's Scientific Conference next week and hope it's OK to quote from your blog.
Best wishes,
MF
Hi Maddie's family, yes of course, it would be an honour, if that doesn't sound too pretensious :-)
Thanks, Woody.
:-)
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