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    Symdeko Headache

    I have checked my O2 twice when waking up early AM. Without headache I was 50 bpm and 98% O2, with headache I was 68 bpm and 97% O2. The increase heart rate is interesting, but isn't out of the family of normal healthy. My last clinic measured at 96% and 60 bpm.
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    Symdeko Headache

    I am switching from Orkambi to Symdeko because the Orkambi had consistently increased the tight feeling in my breathing despite me picking up increases in my FEV1 and FVC, (FEF25-75 will be 25% lower when I do PFT after taking Orkambi compared with a PFT done prior to my morning Orkambi dose)...
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    Question about order

    Thanks for posting that study Stephan, very interesting.
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    Question about order

    I want a doctor/pharmacist (or at least a direct quote from one) to support a claims like "Nothing should be nebulized" on top of Pulmozyme. Not all drugs interact with each other in a neutralizing way. Even if it takes 30 minutes for pulmozyme to fully work, why does that mean I don't way an...
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    What do you say you do?

    I'm not without a job yet, but I have practiced the art of deflection when I don't want to talk about things (my cough, bad guts, did we use fertility treatments to get our twins, etc). Like Littlelab said, people ask questions like this to break ice and find out more about you. So learn to...
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    Question about order

    I second kenna's response with one exception. I do airway clearance (vest) concurrent with my nebulized medicines, stopping to huff cough as needed.
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    Did you always know you wanted one?

    I've never wanted a transplant, I would get one for only 1 reason and that is if my kids were still minors. I say that now, but I know the immediacy of the decision could change my mind. We just have so much survival drive, it makes sense for people to want more time living. Hoping I can stay...
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    Switch From Kalydeco to Symdeko

    I'm looking to switch from Orkambi to Symdeko at my next clinic appointment in May. Hoping for results like Stephen and Penny had. I've been on Orkambi for 2.5 years, and it has improved my lung function and significantly decreased the time it takes me to recover from colds/coughs and...
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    Is it possible to be mistakenly diagnosed with CF?

    No test is perfect, but it is hard for me to believe that they could mistake the most common mutations unless there was a complete mix up. I have DDF508 and have similarly mild lung involvement. I've never been hospitalized, have always had high FEV1 (Your 120% is awesome, but without CF...
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    Px Routine

    From "You're Only Old Once" by Dr. Seuss This small white pill is what I munch at breakfast and right after lunch, I take the pill that's Kelly green before each meal and in between. These loganberry-colored pills I take for early morning chills. I take the pill with zebra stripes to cure my...
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    A miraculous home remedy!!!

    What was your measured improvement in breathing? Did your FEV1, FVC, or FEV1 25/75 increase (or stop decreasing)? Less wheezing? Less coughing? Ability to take deeper breaths? What were your GI improvement like? Have you gained weight? Or decreased trips to the restroom? Or had less days with...
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    diffusing essential oils

    I think putting oils in the air (diffuser) with CF in the home is ill-considered. Most of an essential oil is made out of a carrier base oil (like olive oil) with a small percentage of the essential oil ingredients. So if the oil is particlized and inhaled, the body has to find a way to dispose...
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    Mom is allowing teenage daughter to 'vape' (not nicotine or Marijuana)

    To win this, somehow it has got to be her decision. If you have a history of lovingly persuading her to a decision, then try that. If you have a history of cold belligerent stand-off with her, you'll need a new approach. Sometimes backing off and making the decision a non-battle ground reduces...
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    Need some advice and support

    Don't be impatient, you are still young. CF just make pregnancy tougher (both getting pregnant and being pregnant). It would be good to get your weight up before pregnancy. Good doctors and good self care don't keep all the problems away, they just give you the best chance to handle them when...
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    A miraculous home remedy!!!

    I too am curious what you mean by "solved" and "all my problems." Those are mighty big claims. The mix you describe would be about 0.45% concentration of NA+ (sodium). Right? In an 8 oz cup this is about a 3/4 teaspoon of table salt. This is about triple the NA+ of Gatorade, but 8X less that...
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    Times are a changing...and I DONT like it!

    I had a nurse once mention off-hand that weight loss is a common symptom of CF-related diabetes. The more common infections and weakness you mention aren't atypical of advancing CF but could also be exacerbated by blood sugar control issues. Have you had an oral glucose tolerance test lately...
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    Help please:best gaming system for treatments

    I really like having a Desktop computer to sit at while doing treatments. Buy a PC game controller and a few games for PC (love the Lego Marvel or Lego Star Wars for kids, Minecraft is excellent for burning time). Also sometimes gaming get old so then a kid can jump to other pursuits like...
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    12 year old just diagnosed

    There is a bit of a yin and yang about this disease. The seriousness of the disease VS the hope for a great future. When it comes to medical care, medical research, and fund raising the focus should be on seriousness of it. When it comes to enjoying activities, spending time with loved ones...
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    It takes 15+ minutes. There is a powder version (Tobi Pod haler) that is considerably quicker (2-3 minutes). Some people don't tolerate the powder because it is dry.
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    12 year old just diagnosed

    The 37 expected life span would be a lot higher if they excluded patients with 'sever' disease manifestations. CF still takes some in infancy and early childhood, which keeps the 'life expectancy' numbers low. I had a friend who recently passed at 40 years old, when she was diagnosed the stated...