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    9 years since borderline sweat & 1 gene mutation found. Retest??

    Hi! How long ago was the Johns Hopkins testing? I also have only 1 identified gene, L206W. Mine was sent to them in 2016. They didn't find my other gene. I'm wondering if it was the same trial, but hopeful it was more recent? I would love to know my other gene.
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    Cystic Fibrosis research project

    I'm the first confirmed case of CF in my family. My maternal grandfather kept a spittoon (sp?) by his chair, though, and my parents say he was always coughing up mucus. I have a rare gene and was late diagnosis at 38. Currently, 54.
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    Symdeko Headache

    Your headache sounds like the one I had when my O2 levels dropped. Do you have a pulse oximeter to check it before you get out of bed? Mine were fine when sitting, but dropped when lying down or active. I was sick at the time.
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    Pneumonia :(

    Has anyone else dealt with pneumonia? I was doing so well until it hit. I'm 52 and completely healthy other than my CF lungs. It has left me needing supplemental O2 for the first time ever. I really would like to know how long to expect to need it. All other symptoms are resolving after 3...
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    alternates to neb compressors at home?

    If you've ever used Cayston, you should have an Altera system. I use it for everything except hypertonic saline. It works well.
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    New to Kalydeco

    6 months on Kalydeco Hi, I started 6 months ago and noticed really thin sputum right away! Within a few days! I take mine at 7:45 a.m with breakfast, and 7:45 p.m. with a snack unless I had dinner late, then I don't eat anything else. I've started adding MCT coconut oil to my morning...
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    Kalydeco and unwanted weight gain???

    Hi, I'm a 52-year-old female. I was thrilled my gene was approved to start Kalydeco in July 2017, and it's working great to thin and reduce secretions. However, I have a rare gene (1 copy L206W, 1 unidentified) and I'm pancreatic sufficient. I don't struggle to maintain my weight. I'm usually...
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    What to expect with Kalydeco

    Kalydeco! I got my Rx early June and actually received meds mid-July. (the delay was due to private insurance approval and copay assistance from Vertex took a little while to set up). I can't even believe the difference it has made. My sinuses were clearer than ever with the first dose. My...
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    Medicare- Is there ANY way to get HOME IVs covered?

    Hi, I hope you get your home IV's and supplies covered. I always end up with leftover supplies, like boxes of saline and heparin flushes, iv change kits, etc. I wish there was some way to get them to folks who are paying out of pocket for these things. I can't even find anywhere to donate...
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    taking Ivacaftor?

    My gene was on the recently approved list for Kalydeco! I started a week ago. It's working so well! Within a day, I had significant reduction in sputum, and much thinner. I can't wait for a PFT. I feel like it will be greatly improved. Good Luck!
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    Recently diagnosed at 31

    Confused by your geneticist??? (NOSEPICK) I don't understand why your geneticist told you the results were not conclusive? I too, was diagnosed as an adult. I was 38. I only have 1 identified gene (which is a rare one L205W) and 1 unidentified, yet I was diagnosed CF right away. My hope...
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    My grandson is in the Hospital.. I am having one of those days :(

    Praying for your grandson and for you :)
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    People sharing germs

    I'm so sorry you are sick. I know just what you mean about church. We attend a very large church and the pastor likes to have a "turn around and meet someone you've never met before" time during the service. I've taken to telling people I'm "Immune compromised" when they try to shake my hand...
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    I have 1 L206W and 1 unidentified gene. I was undiagnosed until age 38. I'm now 49. Until diagnosis, I was told I had asthma/allergies/bronchiectasis. I have a very mild case of CF, although I stayed pretty sick until getting diagnosed and getting CF meds and treatments. Now I stay very...
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    Advice for book needed.

    38 at diagnosis I, too, was 38 at diagnosis. I'm now 48. Celebrating 10 of the healthiest years of my life since diagnosis due to receiving the wonderful inhaled meds available to CF patients. Mine is a story of miraculous healing thru prayer. I suffered from undiagnosed lung illness all...
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    Tobi pod haler

    I couldn't tolerate nebulized Tobi, b/c of extreme tightness and voice loss. The Podhaler is great for me! I've been more well than ever since starting it in July 2013. I hate to hear so many can't use it. I did have some tickly type cough the first month, but I guess I've adjusted. I...
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    Kalydeco: Just in from a trusted member!

    Great News! I'm hoping and praying it eventually will be approved for all of us. I have a very rare mutation L206W. I don't know what Class that falls into. Enjoy your newfound health!
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    Are you on oxygen, or does it help you run? I've tried to take up running even when very well, but I just get too short of breath. I walk 4 miles 3 x week at 15 min miles with no problem.
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    Whole Body Cryotherapy

    Can you educate me on exactly what this is and how it benefits CF patients? I'm in the South Central US. I've never heard of it.