Cystic Fibrosis Forum (EXP)

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  1. K

    Doing cayston on the go

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i> Two things: The original manufacturer of the Eflow said not to use antibacterial because of residue issue I believe. I do not steam sterilize the head in the steamer? Do you all? Why do that...isnt' that the point of...
  2. K

    Doing cayston on the go

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mamaScarlett</b></i> Thank you all. I am going to wash it best I can, bring a tiny plastic container into the park and wash the metal head part at least then sterilize everything when we get to the hotel at night. Now-Do I really have...
  3. K

    Doing cayston on the go

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mamaScarlett</b></i> Thank you all. I am going to wash it best I can, bring a tiny plastic container into the park and wash the metal head part at least then sterilize everything when we get to the hotel at night. Now-Do I really have...
  4. K

    770 approved!!!!!!!!!

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SarahProcter</b></i>If I am reading it correctly, they tested it with a subset of gating defect mutations, and it helped for almost all of them, but not for one of the ones tested. </end quote> What is said was that the potency...
  5. K

    770 approved!!!!!!!!!

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SarahProcter</b></i>If I am reading it correctly, they tested it with a subset of gating defect mutations, and it helped for almost all of them, but not for one of the ones tested. </end quote> What is said was that the potency...
  6. K

    770 approved!!!!!!!!!

    dramamama, I tried to quote you but I couldn't get it to work properly. Anyway, I know that about gating mutations, but I thought they were doing additional trials so that it could be approved by the FDA for other mutations. From CFF.org: "Vertex is planning clinical trials of Kalydeco in...
  7. K

    770 approved!!!!!!!!!

    dramamama, I tried to quote you but I couldn't get it to work properly. Anyway, I know that about gating mutations, but I thought they were doing additional trials so that it could be approved by the FDA for other mutations. From CFF.org: "Vertex is planning clinical trials of Kalydeco in...
  8. K

    Question for NAC users

    Thank you for that explanation!
  9. K

    anti-biotic usage...

    Yes, I was on Cipro for 90 days and got C. diff. My main symptoms where diarrhea, especially after eating, stomachaches, and weight loss.
  10. K

    anti-biotic usage...

    Yes, I was on Cipro for 90 days and got C. diff. My main symptoms where diarrhea, especially after eating, stomachaches, and weight loss.
  11. K

    Question for NAC users

    Can you tell that it helps you? If so, how? Do you cough less? Get sick less often? Have more energy? I have been taking PharmaNAC for about 6 months, and I can't really say that I am noticing a difference in my health. Other things, like hypertonic saline and pulmozyme, I can definitely tell...
  12. K

    770 approved!!!!!!!!!

    This is so wonderful!!!! I thought they just approved it for G551D? I thought they were doing additional trials for the other gating mutations. I'm curious to hear from those with G551D how the insurance approval process works - will insurance start covering it right away?
  13. K

    770 approved!!!!!!!!!

    This is so wonderful!!!! I thought they just approved it for G551D? I thought they were doing additional trials for the other gating mutations. I'm curious to hear from those with G551D how the insurance approval process works - will insurance start covering it right away?
  14. K

    Doing cayston on the go

    My understanding is that we do not have to sterilize right away. I use three handsets a day and clean each one with tap water and dish soap right away, but then I put them on a paper towel until the end of the day, when I sterilize all three handsets at the same time. However, I will also...
  15. K

    Doing cayston on the go

    My understanding is that we do not have to sterilize right away. I use three handsets a day and clean each one with tap water and dish soap right away, but then I put them on a paper towel until the end of the day, when I sterilize all three handsets at the same time. However, I will also...
  16. K

    Implications of bodybuilding and Pseudomonas!

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anien2</b></i> About that connection between weight and health for CFers... I am not an expert, but I think it is in the oppositte direction, it is not that CFers who weight more have a better health, but CFers with a better health...
  17. K

    Implications of bodybuilding and Pseudomonas!

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anien2</b></i> About that connection between weight and health for CFers... I am not an expert, but I think it is in the oppositte direction, it is not that CFers who weight more have a better health, but CFers with a better health...
  18. K

    Just for fun but CF related - Real things doctors have said to me in the hospital

    Oh, I thought of another one: I can't even count the number of times I've gotten phone calls for my parents to remind them about their daughter Kristen's appointment at CF clinic! LOL
  19. K

    Just for fun but CF related - Real things doctors have said to me in the hospital

    Oh, I thought of another one: I can't even count the number of times I've gotten phone calls for my parents to remind them about their daughter Kristen's appointment at CF clinic! LOL
  20. K

    Allergic against cats

    I have a cat allergy and own one cat (it was two cats until last year). I take zyrtec for allergies and am getting allergy shots (I just started the shots a few months ago, so it's too soon for me to tell if they help). I also removed the carpet from the bedroom and don't let the cat in there.
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