Expect nothing - be surprised

23rd May 2014

Following story took place three days ago. It's Friday, I just finshed a two week IV therapy. It's time for the final check and a pulmonary function test is planned. As always I don't really look forward sitting in that cabin as I know that the result will be another disappointment. Not really surprised I see that FEV1 is again roughly 26%. It's always been a tick lower right after the IV. Only after a few days or weeks it will be back to the usual 35%. I make a note to myself that I should ask the doctor about the outcome of the genetic analysis which was done two weeks ago...

My doctor already informed me when we did the test, that there's a new medicine on the market which is not aiming to cure the symptoms of CF but rather the cause - the narrowed or missing chlorid-ion-channel. He also mentioned that he had checked 20 of his patients so far, none of them had the G551D therefore I shouldn't expect anything. He assumed that I wouldn't be part of that "group of hope" either. I accepted it and forgot about the whole conversation more or less in the same minute. Who likes it to be disappointed...