Cystic Fibrosis Forum (EXP)

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  1. L

    i'm in house and doing aggressive therapy

    Awesome! Go lungs go! See how high you can go!
  2. L

    First CF Hemoptysis

    One of the wisest doctors I ever saw (from 2005-2008) put what he referred to as a "hemoptysis plan" in place after seeing me the first day and me telling him my history of being a bleeder. While I never had had a bleed that required an emergency procedure, he wanted me, and more importantly my...
  3. L

    First CF Hemoptysis

    One of the wisest doctors I ever saw (from 2005-2008) put what he referred to as a "hemoptysis plan" in place after seeing me the first day and me telling him my history of being a bleeder. While I never had had a bleed that required an emergency procedure, he wanted me, and more importantly my...
  4. L

    genetic counseling

    Hi Nikole, Sorry for the delay. How was your daughter's mutations found? Does she have a positive sweat test? You could test for the specific mutations she has in the other two children. For the other two children to have a totally different mutation than the two that she carries they would need...
  5. L

    Randy Snider Memorial Website

    Great site & thanks for the shout out to this site. I'm sure Randy is very excited to have this place for his memory to live on.
  6. L

    Know of anyone with more than 2 kids?

    Clock. still. ticking. here. With one we feel we 'have no excuse' not to send him to the best school possible. While we live in one of the best school districts in the nation, it is still a public school doing very traditional efforts so independent school it is for us. My hope is that I love...
  7. L

    HTS ineffective

    rosesixtyfive, just to be clear Sam is not on HTS if he is inhaling anything below 3-9%. It's just regular saline. Most of us have been inhaling .9% (the salinity of our tears FYI) for our whole lives. This could be the best thing for me. As others have mentioned induced coughing may not be the...
  8. L

    HTS ineffective

    rosesixtyfive, just to be clear Sam is not on HTS if he is inhaling anything below 3-9%. It's just regular saline. Most of us have been inhaling .9% (the salinity of our tears FYI) for our whole lives. This could be the best thing for me. As others have mentioned induced coughing may not be the...
  9. L

    CT scans and our little CFers

    My son hasn't had a CT scan yet. Just curious what your daughter's xray was like. My son's shows no changes. I don't think his doctor would recommend us to CT scan unless we were having more problems. He hasn't cultured PA and is unusual because he passes the sweat test. So what do they plan to...
  10. L

    CT scans and our little CFers

    My son hasn't had a CT scan yet. Just curious what your daughter's xray was like. My son's shows no changes. I don't think his doctor would recommend us to CT scan unless we were having more problems. He hasn't cultured PA and is unusual because he passes the sweat test. So what do they plan to...
  11. L

    Rallying the troops.... we need to get together on this

    Great perspective Amy. I have no further comment just wanted to share those two perspectives. You helped to jog my memory that the Vertex person did mention the fact that they can't recommend it off label because it is illegal and at the time it was fresh in my head because you had explained...
  12. L

    Rallying the troops.... we need to get together on this

    Great perspective Amy. I have no further comment just wanted to share those two perspectives. You helped to jog my memory that the Vertex person did mention the fact that they can't recommend it off label because it is illegal and at the time it was fresh in my head because you had explained...
  13. L

    Rallying the troops.... we need to get together on this

    Has anyone considered contacting Vertex about this? They are very nice I just hesitate to do it myself because I don't want to take their time away from drug development. I'm just saying it may help to get their perspective before a lot of time is put into this. I personally always have to...
  14. L

    Rallying the troops.... we need to get together on this

    Has anyone considered contacting Vertex about this? They are very nice I just hesitate to do it myself because I don't want to take their time away from drug development. I'm just saying it may help to get their perspective before a lot of time is put into this. I personally always have to...
  15. L

    G551D patients on Kalydeco

    What does CCP stand for? Critical Control Point? What phase is CCP? I was in Ph. IIB and Ph. III and Open Label Extension
  16. L

    G551D patients on Kalydeco

    What does CCP stand for? Critical Control Point? What phase is CCP? I was in Ph. IIB and Ph. III and Open Label Extension
  17. L

    Indulge for a Cure - CFF fundraiser in Southbury, CT

    Thanks Autumn! Ticket sales are down. Please spread the word about this fun event!
  18. L

    Indulge for a Cure - CFF fundraiser in Southbury, CT

    Thanks Autumn! Ticket sales are down. Please spread the word about this fun event!
  19. L

    Indulge for a Cure - CFF fundraiser in Southbury, CT

    Buy your tickets here - <a href="http://www.southburywomensclub.org/">http://www.southburywomensclub.org/</a> <img src="http://i1070.photobucket.com/albums/u493/laurenbrenneman/IndulgeforaCure2012.jpg">
  20. L

    Indulge for a Cure - CFF fundraiser in Southbury, CT

    Buy your tickets here - <a href="http://www.southburywomensclub.org/">http://www.southburywomensclub.org/</a> <img src="http://i1070.photobucket.com/albums/u493/laurenbrenneman/IndulgeforaCure2012.jpg">
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