I had CF clinic today, well actually it was scheduled PFT's && since I was there I begged that the dr came up and saw me. For starters my PFT's bombed. They were 39%. Thats down from 47% 1/2 way through my hospital stay. I was super disappointed. The upside is that its likely related to a sinus infection. I've been having HORRIBLE facial sinus pain. I thought they were migraines but imetrex,excedrine migraine, nor caffine, were helping so it has to be sinuses. Hopefully I'll get in to see the ENT dr soon and we can get some sinus surgery done.
Now for the update everyone probably wants. Kalydeco.
My dr said that EVERYONE was caught off guard by the medication getting approved 3 MONTHS ahead of schedule. They were contacted by a Vertex drug rep yesterday afternoon and they have a meeting set up for the 8th of Feb to talk about getting the medication to patients. My doctor said I should have a script and/or the medication within 2 weeks. The only pharmacy set to carry the drug as of now is the CF services pharmacy. NOW for the really upsetting news - the drug is a $30,000 a month drug. Getting insurance approval might be hard. Vertex however is setting up a program to help the roughly 1500 patients get the medication.
Well thats all I know. She said she would call me first thing wednesday morning to let me know what was going on, so as soon as I know, ya'll will know.
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