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  1. L

    Eyes Burning on Trikafta

    Also listing me as a new member! LIke Windex, I have been here on and off for years. I LOVE THIS FORUM, btw.
  2. L

    Liver Enzymes and CFTR Modulators?

    My 30y/o son is in another city now. He was started on Trikafta already having been dx with liver disease, but he had been stable for quite a long time. The doc first started him on one pill (day time pill) only 2x week. Then when his liver values looked normal (for him) they bumped him up to...
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    Ideas for recurring hemoptysis

    Thanks Kenna2. I think this might really work for him. About a year back I had heard about this med and told my son. He brought it up to his doctor and the doctor said it was "too dangerous", or that he was afraid that it would cause a clot. But, the whole reason he bleeds is because he...
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    Ideas for recurring hemoptysis

    Hello All - I'm a mom to a 29y/o w/DD508. He is living his life with more than a few challenges, but living nonetheless. He has pancreatic insufficiency (of course), CFLD and CDRD. All of these would be more or less manageable but he just can't seem to get the hemoptysis under control. He's...
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    Anybody a patient at USC CF Center in Los Angeles?

    Hi Lilly! I remember you. Boy, it was a long long time ago! Glad to hear he is ok and that you like Dr. Rao. That will be my son's dr. too. Quick Question: Do you know or can you ask your son if there are any programs in California that help with co-pays? I wish we could get him Medi-Cal...
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    nearest cf facility to Santa Fe?

    New Mexico CF centers Hey UK Traveler! I live in El Paso, Texas which is about a 4 hour drive from Albuquerque. One time we had occasion to need CF care there. We found the care excellent. My son was a child at that time (about 10 years ago) but since that time I have followed the...
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    Anybody a patient at USC CF Center in Los Angeles?

    Hello folks, My dear 27 year old son w/ CF, CFRD CFRLD has recently planned to move to LA. It is probably for the better because we don't have a CF center here where we live and he was still seeing his pediatric specialists. I would love to hear what anybody has to say, however, about the CF...