3 months - time for a review

Today was the day. I had the first doctor's visit after three months on Kalydeco and my personal feeling was supposed to be proofed by clinical facts, something for which my insurance also asked before they would start paying for the expensive medicine. Until now it's still offered by Vertex - thank you very much again! No wonder I was quite nervous when I arrived in St.Gallen. First stop X-ray, then a visit at the "diabetes doctor" followed by the lung function test and finally the appointment with the pneumoligist - all done within 2.5 hours - this hospital really rocks! (at other places in Switzerland you would need 2 days...)

The first meeting was a bit disappointing, the average blood sugar level of 8.1 was far from good and showed me that even the "blue angel" will not fix the blood sugar houshold overnight. I need to be more disciplined and therefore the usual measure - weight (estimate) - inject procedure is daily business again. Also the lung function check was not shockingly good, instead of my goal of 35% FEV 1 I only scored 31%. It's still an increase of 18% since I take Kalydeco but according to my personal feeling I expected more. Mr. pneumologist was nontheless very happy and therefore I continue on my path. The direction seems to be right and to be honest - I can't assume that after 32 years of CF I turn in to a super hero within 90 days.

Summing the things up it looks as follows after three months:

-Weight: 66kg vs. 73kg -> +7kg (11%)

-FEV 1: 26% vs. 31% -> +18%

-Prednisone: 20mg vs. 7.5mg (-62%)

-Oxygene level relaxed: 93% vs. 95%

-Oxygene level with little exercise: 86% vs. 91%


Apart from FEV 1 everything looks amazing and also for that one the tendency is correct. I wonder how it will continue and of course I won't stop fighting, but of course not dressed as in the picture (which by the way shows the very old traditional Uznacher freedom movement uniform :-) )

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