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    Orkambi and fat

    I know there's been a lot of questions about Orkambi and how much fat you should eat with it. Vertex researchers have kindly shared feedback with me that "the data we have with ivacaftor and a controlled diet is with 20g of fat and greater; however, the guidance in the Phase 3 protocols was...
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    Best portable o2 concentrator?

    Hi. I'm going to be traveling a fair amount this year and need a portable oxygen concentrator that MUST go up to 3L continuous, preferable 5L if that's possible. Also looking for lightweight and durable. I'd love it if folks would chime in with advice!!! Thanks so much. ;)
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    Weird SOB, weight on chest

    OK, so I was waiting for my daughter's practice to finish when sudden I felt like I had this heavy weight on my chest and was extremely short of breath. My O2 sats, which had been happily bopping along at 93, suddenly dropped to 86 and my heart rate accelerated. Then, after about 2-3 minutes...
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    Duke CF Center

    Can folks chime in on how they like the Duke CF center, especially its infection control procedures, doctors, responsiveness to issues, etc.? I'm also interested in any experiences people have had there with lungs transplants. Thanks a bunch. :D
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    CFRD BS control

    Hey folks, I was diagnosed with CFRD about a month ago, been on Novolog 3-4 times a day. I was wondering a) How much insulin do other CFRDers take? 2) What is your target daily carb intake, and 3) How tight is your control? My wake-up BS's are usually between 110-130, 1 hour post meal...
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    mortality stats for CF genotypes?

    Anyone know where to get this info? Especially for DDf508?
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    severe asthma

    Anyone else here have severe large airway chronic asthma? Its really kicking my butt right now to the point where I can barely take any inhaled meds since I am so hyperreactive. Any suggestions? IgE is normal, neutophils quite high. FEV 58%, but O2 hanging out between 92-95, drops to 88/89...
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    methyltrexate

    Anyone taking it here for severe chronic asthma? (on top of the CF of course!) Out of curiosity, were your neutrophils high? Did the meds work? Any side effects?
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    Homozygous for D508, PI but...

    When I hit my early 20's, I stopped having so much trouble keeping weight on! Now at 43, I havent taken any enzymes in two decades and constantly have to watch my diet and exercise every day to keep my weight from going up too high. All tests show my pancreas is kaput. My doc thinks I've...
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    Happy mother's Day!!

    Happy Mothers Day!!! To everyone with CF who is a mom, and all mom's with kids who have CF. And anyone else who happens to peruse this board : ) 10 years ago, I received my first Mother's Day card. It was a bit weird since officially we had signed the papers, and my husband had met our new...
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    Happy with myself

    Did the great strides walk today, only I ran the whole darn thing. A lot of it is steep uphill and then steep downhill, which was challenging, but I made it and was the first person back (and yes, other people were running it too). Not so much that I won, but the CF clearly LOST..........and...
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    CF coughing VS asthmatic coughing

    Have a question for folks. I have noticed that when I get an exacerbation and start coughin up a lot more chunks, my asthma quiets down significantly. In fact, I can pretty acurately use a decrease in general tightness as a sign that I am going to get sick. So, that seems totally weird. The only...
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    Cool X-mas vacations this year?

    Anyone want to share fun experiences?<br><br>I got to snorkel off a continental shelf, 40-60 feet of pristine water, with an 8 foot reef shark cruising around us (I admit I was a little concerned about my 6 year old). Totally cool. I even managed to dive down about 20 feet and almost get my...
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    Ca and D supplements that actually work for CF?

    Has anyone had any luck with this? I'm not talking the "I feel better because I am taking this" kind of thing, but "I had my vitamin levels tested, they were really low, I took this particular supplement w/o changing anything else in my diet OR amount of sunlight, and when I had my blood work...
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    So proud of my daughter...

    Hey folks, I just had to share. My ten year old daughter, who we adopted internationally at 1 year old, just cleaned house at her gymnastics meet. She was the all-around champion (two golds, two silver medals), and in the event finals, got a silver on floor and a bronze on beam. She led her team...
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    OMG, I'm doing it!

    I'm so excited.   Dont know if anyone has been following my threads, but I have been running for over a year now and recently added a 1.5 miles swim 3/week plus 10-20km bike ride 3x/week to my daily regimen of running a 5-10K and weight lifting.    Got my PFT's tested yesterday and they were at...
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    Any sprint triathletes here?

    OMG I must be crazy.   I am actually thinking about training for one of these in spring 2012.   Gotta improve the swimming first though, and I have no idea if my body will hold up to the training.   I did run a good 10K on Thursday, then on Friday swam laps for 20 minutes and biked for 30 after...
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    tough topic- portrayed life expectancy

    <!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w<img src="i/expressions/face-icon-small-tongue.gif" border="0">unctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid>...
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    Sharing funny CF-related stories

    Anyone have any funny stuff out there to brighten up people's day?<br><br>As a kid, my parents used to have me drink this nasty dietary supplement crap called vivenex.    It was so repulsive that I used to puke it up half the time, and the one instance that my mom thought she'd "demonstrate" how...
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    Warding off asthma attacks with a drink?

    OK, I am NOT advocating the alcoholic type here, especially since it gives me gout! What I am talking about is drinking a super-chilled drink slowly through a straw when I feel the tightness of asthma coming on. Even something simple as ice water helps a lot. Amazingly, it seems to numb the...
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