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    FDA Approves Triple Combo - Trikafta

    Yes I have the same question! Is this Elexacaftor or something else ? This is very exciting either way! ??
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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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    Vertex Initiates First Phase 3 Study of VX-659, Tezacaftor and Ivacaftor

    Thanks for posting this! I hope I can find a trial for my daughter. :) Even if I can’t ...this info does give me some hope! I appreciate your expertise and knowledge. Thanks again, Michelle
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    Guardedly EXCITED??! Does this mean what I think it means? That some heterozygotes can try the new triple combination?????????????
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    Billy, Thank you so much for your encouraging reply. It feels like every day since her diagnosis I've lived in fear of losing her, and now...some days...I can have some hope for more time. Best wishes, Michelle
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    Thank you ...I’m so glad you responded! It gives me some hope that you are doing well. I really need to believe there is hope for my daughter and her future. Thanks again! Michelle
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    I was desperate to get my daughter onto one of those clinical trials. I was not successful. I’d love to know how you are doing. Are you a heterozygous DF508? You can private message me if you prefer. I’m just very hopeful that the tezacaftor can help my daughter. Thanks Michelle
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    Feeding tube advice

    My daughter was 18 months old when her CF doctor suggested a feeding tube. I was reluctant at first, and cried a lot about it to be honest. Eventually he talked me into it. She was tiny...he said she would not even come close to her potential adult size if we kept going the way we were. She also...
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    Newly Cultured NTM/MAC

    Hi friend, NTM Is Non-Tuberculosis Mycobacterium. My daughter has this in her cultures too, and it's hard to treat. There are wonderful threads on this forum about it....including one I recently started. Here is one I find very informative...
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    How's the healthcare and coverage in Colorado?

    I am curious about answers to this as well. We would love to have our daughter closer to National Jewish so she can get seen there full time. Right now that may mean trying to get her into a college out there. I am also working with our current CF clinic to fly her out there (we live in NV) to...
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    Vertex Announces Acceptance of Applications for review of Tezacaftor/Ivacaftor

    Thank you for posting this great news!! Is this for the remaining residual function mutations? I am hopeful that these modulators move forward for everyone they can help... Does this mean they would decide by February 2018 or look at the application at that time? Michelle
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    Hello Jshet, How awful for you and your son! I'm sorry to hear he is in such an awful situation. My son (also Autistic) would be very upset if he were in pain like this. I briefly looked up the medication and saw this : Some people using medicines similar to pamidronate have developed bone...
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    how to get a new Altera handset

    Hi there! May I ask--why did you start using the altera system for Colistin? Do you find that it is more effective this way? Does it clog up your device? Colistin is so sticky! We use Colistin also...but use the regular Pari to administer it. I would be interested in trying the Altera if you...
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    We remember Frank Deford

    May Frank Rest In Peace and be reunited with his beautiful little girl. I saw this movie YEARS before I had my children...and then read the book after having Victoria. He was a wonderful writer and speaker.
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    Mycobacterium Abscessus

    Wow! I'm inspired by the personal stories on this thread...especially those who managed to keep their jobs (or school or families) going through the treatment. Thanks for continuing to read our thread and for all the replies. My only update is that we did get an appointment scheduled for May...
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    Increased cough

    How is your son feeling? Any improvements? How is he adjusting to the Tobi? Michelle
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    How long to baseline?

    I am sorry to hear your son is not well. Is this his first PICC? Remind me how old he is...also, do you know how they will place it...conscious or unconscious sedation? I just want to send healing thoughts your way. It's hard to have the kids sick over the holidays. I can't believe Easter is...
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    Oh this sounds great! I have never had a Facebook account but maybe I will use my husband's or...

    Oh this sounds great! I have never had a Facebook account but maybe I will use my husband's or just create one for CF research. Ill let you know, and THANK YOU
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    Mycobacterium Abscessus

    I want to thank everyone who has responded to me. I really needed to hear some personal stories from other CF patients. Thank you for taking the time to write. So far I've called the infectious disease office multiple times with no success on reaching them to book her an appointment. It took...