Wednesday, May 6, 2009

SO UPSET!!! :(

well i went to the docs on monday and my pft's went down. i guess that's cause i finished the study med about 6 weeks ago and the effects of it have left my body completely. i wanted to cry when i saw my numbers. my fev1 was at 28%. oddly enough my docs werent worried a bit. they said it has happened to all the patients who had been on the study med. it was a blind study but i guess i was getting the good stuff. i'm still working out and eating great. i'm up to 106lbs last year i was 92lbs. i'm only 4'11". i asked the docs what's next? can i still go to hawaii, do i need ivs? they said no that my numbers will stablize and i'll be back to 39% soon. can you believe he told me dont look at the numbers? i was like what! i live by those things. he said what mattered was how i looked and felt. plus my sat's were at 97% on room air. i was on inhaled levaquin for the study and i want that med asap!! lol. i'm actually going into another study for cipro. it's supposed to be REALLLLYYYY GOOOD. I'm sure your numbers will get up in no time. i did feel like i was coming down with a cold this weekend so that might be why they went so low as well. i talked to another cf friend who was on the same study and her pft's went low as well, so low they wanted to admit her. she asked them for a week to get better and her numbers went back up. long story short, if they arent worried i wont be either. i'll check up on that med you wrote me about as well. sorry so long. lol. love ya, wendy v.

P.S. this was a message i wrote to a cf friend. i just copied and pasted. i didnt want to write the story over again.

1 comment:

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