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  1. wow..........I'd had collapsed lungs and several...

    wow..........I'd had collapsed lungs and several cases of pneumonia and bronchitis before I even turned 1.

    Pebbles8- Orkambi is not for everyone. A significant portion of the ddf508 population...
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    Gammaw, the ones I use DO melt if you boil them,...

    Gammaw, the ones I use DO melt if you boil them, but not if you run them through the dishwasher or run them through a baby bottle sterilizer. I havent gotten "CF" sick I think mainly 1) luck, 2) I...
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    Actually Gammaw, I havent gotten a CF infection...

    Actually Gammaw, I havent gotten a CF infection for over 10 years, and I dont culture much of anything, so I must be doing something right with regard to germ management. By "infection" in my...
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    The only meds I mix are hypertonic and albuterol...

    The only meds I mix are hypertonic and albuterol or mucomyst and albuterol. The nebbie cup get run through the dishwasher after every use. I usually have 4-5 going at one time, and I throw them out...
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    Hi there. We adopted two daughters, the first...

    Hi there. We adopted two daughters, the first via international adoption where she was almost a year when she came home and was sleeping through the night, the second via domestic adoption where she...
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    This is a little bit different than what you were...

    This is a little bit different than what you were asking, but still relevant I think.

    I cultured PA when I was a child many, many times. Had countless rounds of oral and IV antibiotics. Did not...
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    trghpu1994. My eldest daughter was adopted from...

    trghpu1994. My eldest daughter was adopted from an orphanage as well, but at a much younger age. Where was your daughter born, if you dont mind me asking?
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    ethan- yeah, same here. It used to be that...

    ethan- yeah, same here. It used to be that running helped clear my lungs, but when I got to a certain stage in my disease, it actually INCREASED the inflammation and made my lungs a bit worse. ...
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    Andy- I wish I were in the high...

    Andy- I wish I were in the high 50's.......batting 35-37% now. Loosing roughing a percentage point every month. NOT good. But I keep trying.


    The kids help keep me going. And the husband. :o
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    I sort of understand where your doc is coming...

    I sort of understand where your doc is coming from. When I was at 59% (and unfit) I started working out A LOT. I built up to running a 5-10K every day PLUS swimming a mile 5X a week and biking...
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    Yes, I had insomnia while taking Orkambi.

    Yes, I had insomnia while taking Orkambi.
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    Drinking something supercold or eating generally...

    Drinking something supercold or eating generally helps me too. Sometimes albuterol just makes it worse, in my case. Frustrating! Makes you not want to get up and use the bathroom.....totally...
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    Hey Saint, you doing OK? Ya havent posted yet...

    Hey Saint, you doing OK? Ya havent posted yet today and your post from yesterday was a bit concerning.....
  14. I was on Orkambi for 5 weeks. My FEV1 at time of...

    I was on Orkambi for 5 weeks.
    My FEV1 at time of starting was 39%.
    I have had trouble tolerating some inhaled meds at times due to bronchospasms.
    I am also taken chemo meds at times to damp down a...
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    CF in texas- I took Orkambi for 5 week, then...

    CF in texas- I took Orkambi for 5 week, then stopped. 1 week later I tried a single dose. It knocked me on my ass for almost a week. The reaction was even worse than the initial starting, like...
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    jswans, couldnt agree with you more. I took...

    jswans, couldnt agree with you more. I took it for 5 weeks, been off for 3 weeks and I am still trying to get my feet back under me. Have you read the FDA report on the drug? I dont understand...
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    To literally answer your question: My lung...

    To literally answer your question: My lung function. From doctoral student and professional athlete to someone who gets tired from a food shopping.

    As for the rest, really the only new med that...
  18. I have 2 kids, so I spend a LOT of my time...

    I have 2 kids, so I spend a LOT of my time driving, doing small volunteer projects for their school, tons of laundry and cooking. Dont do so much cleaning because its getting a bit hard and I stay...
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    There is a subset of people with ddf508 who have...

    There is a subset of people with ddf508 who have a protein that blocks the effectiveness of Lumacaftor. (published in Science Signaling, Doutor Ricardo Jorge)
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    Dj this is not body hydration, its lung mucus...

    Dj this is not body hydration, its lung mucus hydration. If I drink about 12 ounces of super-cool or very very hot liquid in small sips through a straw and get it to the back of my throat and do...
  21. randdomgirl and welshwitch- I have the same...

    randdomgirl and welshwitch- I have the same problem with my sinuses. History of 9 sinus surguries that never worked for more than a few weeks. And NO sense of smell left. Havent found any med...
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    aboveallislove, according to my doc, its my...

    aboveallislove, according to my doc, its my immune system causing most of the issues. Usually I take a chemo drug to suppress my immune system, since it has fun attacking my lungs and causing...
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    After stopped the orkambi yesterday AM, the...

    After stopped the orkambi yesterday AM, the reversal has been startling over the past 24 hours. Wheezing and SOB gone, rhinitis gone, slept through night, no nausea, stomach pain GONE. Still have a...
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    Just wanted to let folks know that I have...

    Just wanted to let folks know that I have discontinued the Orkambi. I made it 5 weeks. It is not worth it for me personally. These have been the most miserable 5 weeks of my life. The FDA...
  25. From the POV of someone who has experienced...

    From the POV of someone who has experienced nothing but problems from Orkambi, that was some pretty interesting reading.
    Especially around page 125 and on, where they are talking about a subset of...
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