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    Elevated liver enzymes/Vertex meds

    Hello Friends! I have a few questions for those of you who have taken the Vertex modulators and experienced elevated liver enzymes. How elevated did your numbers become? Did your doctor take you off the medications right away? Did you ever go back after a break? Did liver enzymes ever...
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    Anyone at the 2018 Conference?

    Hello CF friends, I was wondering if anyone is attending the CF Conference this year? Any news to share? We are especially interested in CFTR modulators, but any interesting news would be awesome. Thanks ! Michelle Mom to Victoria/17 year’s old/port/Gtube etc
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    Guardedly EXCITED??!

    https://www.cff.org/News/News-Archive/2018/FDA-Approves-New-CFTR-Modulator-Treatment-for-Cystic-Fibrosis/ Does this mean what I think it means? That some heterozygotes can try the new triple combination?????????????
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    Mycobacterium Abscessus

    Hello Friends! Well...we have gotten some bad news today. My sixteen-year-old daughter is now culturing Myco Abscessus. I am actually not that surprised about it given her recent months of relentless fatigue and night sweats. So now we go back to the infectious disease doctor to get his...
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    IUD required for new Vertex study

    This is mostly a vent... I have been trying to get my daughter into a clinical trial for one of the CFTR modulators for a while. For different reasons she hasn't been eligible--wrong mutations, too young, etc. Well, yesterday I contacted a few centers around the country about the Vertex...
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    Fog machines in October

    Hello Friends ! I have a question about the safety of fog machines. Are they a threat to our CFers? Every Fall season it seems they are in haunted houses, outdoor festivals, concerts, skating rinks, etc. I am anxious about what my daughter is breathing in when we are trying to enjoy this...
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