Cystic Fibrosis Forum (EXP)

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Recent content by kyrock85

  1. K

    BCMH...anyone?

    Oh, and I'm 26. For CF there is an adult program (at least in Ohio anyways)
  2. K

    BCMH...anyone?

    I've been on BCMH for the majority of time I've been in Ohio. It does help greatly. While BCMH no longer covers any hospital stays, doctor visits, or testing; it helps get home IV's and medication. It is most definetly worth filling out the paperwork. IDK if you're working, but if you are having...
  3. K

    DF508ers who participated in VX-770 trials

    a) i'm female... b) i dont know why my nurse described it that way.. she just did... and c) yes I am homozygous delta f508. I have been geneticaly tested and i'm positive that my doctors would not lie to me about what mutations i havce. plus if i was homozygous... and provided proof... i...
  4. K

    DF508ers who participated in VX-770 trials

    a) i'm female... b) i dont know why my nurse described it that way.. she just did... and c) yes I am homozygous delta f508. I have been geneticaly tested and i'm positive that my doctors would not lie to me about what mutations i havce. plus if i was homozygous... and provided proof... i...
  5. K

    DF508ers who participated in VX-770 trials

    the way that my CF research nurse explained my gene mutation to me was that it could be a variety of different things. It could be that the gate jsut doesn't open, it could be that the gate is bent, or a combination. We're assuming i have a combination since the drug did semi work for me. When I...
  6. K

    DF508ers who participated in VX-770 trials

    the way that my CF research nurse explained my gene mutation to me was that it could be a variety of different things. It could be that the gate jsut doesn't open, it could be that the gate is bent, or a combination. We're assuming i have a combination since the drug did semi work for me. When I...
  7. K

    DF508ers who participated in VX-770 trials

    I participated in the study (i'm homozygous df508). In the begining I wasn't suppose to be able to see what my PFTs were (they were pretty good about keepin that info hidden). I was on the drug from January 2010 until june 2011 when they pulled it for not showing enough significant data. I can...
  8. K

    DF508ers who participated in VX-770 trials

    I participated in the study (i'm homozygous df508). In the begining I wasn't suppose to be able to see what my PFTs were (they were pretty good about keepin that info hidden). I was on the drug from January 2010 until june 2011 when they pulled it for not showing enough significant data. I can...
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