Cystic Fibrosis Forum (EXP)

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  1. K

    DF508ers who participated in VX-770 trials

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i> <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kristen</b></i> but he was concerned about it not being approved for my mutation (yet) </end quote> Concerned for safety? Or efficacy? If it's...
  2. K

    DF508ers who participated in VX-770 trials

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i> <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kristen</b></i> but he was concerned about it not being approved for my mutation (yet) </end quote> Concerned for safety? Or efficacy? If it's...
  3. K

    Back into the hospital tonight

    I am so sorry your family is going through this. Sending lot of thoughts and prayers your way.
  4. K

    Back into the hospital tonight

    I am so sorry your family is going through this. Sending lot of thoughts and prayers your way.
  5. K

    DF508ers who participated in VX-770 trials

    Amy, I'm impressed that your doc is willing to prescribe it for you. My insurance says they will cover it off-label, but my doc was still hesitant to prescribe it for me, even though I have R117H. (He said he didn't want to be the roadblock to me getting it, but he was concerned about it not...
  6. K

    DF508ers who participated in VX-770 trials

    Amy, I'm impressed that your doc is willing to prescribe it for you. My insurance says they will cover it off-label, but my doc was still hesitant to prescribe it for me, even though I have R117H. (He said he didn't want to be the roadblock to me getting it, but he was concerned about it not...
  7. K

    azithromycin

    I have done azithromycin twice - the first time it made me feel a lot better but tore apart my stomach. My stomach hurt so much that I was more miserable overall, so I stopped taking it. That was over 5 years ago. Three months ago my doctor asked me if I wanted to give it another try, so I did...
  8. K

    azithromycin

    I have done azithromycin twice - the first time it made me feel a lot better but tore apart my stomach. My stomach hurt so much that I was more miserable overall, so I stopped taking it. That was over 5 years ago. Three months ago my doctor asked me if I wanted to give it another try, so I did...
  9. K

    What are our real PFT numbers

    Hmmm, that is weird. I'm pretty sure the numbers are based on Sex, Age, Weight, and Height, but I don't think they change that dramatically even if you do have a birthday or gain/lose weight. Could the new clinic have entered something wrong into the computer? I can't answer the question about...
  10. K

    What are our real PFT numbers

    Hmmm, that is weird. I'm pretty sure the numbers are based on Sex, Age, Weight, and Height, but I don't think they change that dramatically even if you do have a birthday or gain/lose weight. Could the new clinic have entered something wrong into the computer? I can't answer the question about...
  11. K

    CF/bronchiectasis moms

    It is a tough decision! I agree that coming up with a plan in advance is a great idea. You are lucky you have family close that can help. My CF doctor said having a good support system is the most important thing. For me, pregnancy was easy and did not affect my health at all (but I do have...
  12. K

    CF/bronchiectasis moms

    It is a tough decision! I agree that coming up with a plan in advance is a great idea. You are lucky you have family close that can help. My CF doctor said having a good support system is the most important thing. For me, pregnancy was easy and did not affect my health at all (but I do have...
  13. K

    How many of you underwent an abortion

    <div class="FTQUOTE">Originally posted by: Angel2393 Y&eah but I was not sure if i COULD take it , if it will mix or give me bad reaction/ Why don't you call your doctor and ask?
  14. K

    Doing cayston on the go

    I started Cayston last May and I think all of my heads still work - I get a new one with each treatment cycle and I haven't been good about keeping track of which one is which, if that makes sense. How do you know if one still works? My RT said that I should toss them if they treatments start...
  15. K

    Doing cayston on the go

    I started Cayston last May and I think all of my heads still work - I get a new one with each treatment cycle and I haven't been good about keeping track of which one is which, if that makes sense. How do you know if one still works? My RT said that I should toss them if they treatments start...
  16. K

    FDA drugs

    Also, the Abstracts from the CF conference are here: http://onlinelibrary.wiley.com/doi/10.1002/ppul.v45.33s/issuetoc
  17. K

    FDA drugs

    Also, the Abstracts from the CF conference are here: http://onlinelibrary.wiley.com/doi/10.1002/ppul.v45.33s/issuetoc
  18. K

    FDA drugs

    Ditto Anomie - if you have a gating mutation or R117H, it is worth talking to your doctor (and/or you could look into the clinical trials they are starting this year). The prescribing info for Kalydeco specifically says that it does not work for doubleDF508.
  19. K

    FDA drugs

    Ditto Anomie - if you have a gating mutation or R117H, it is worth talking to your doctor (and/or you could look into the clinical trials they are starting this year). The prescribing info for Kalydeco specifically says that it does not work for doubleDF508.
  20. 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...
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