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    I have checked my O2 twice when waking up early...

    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...
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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%...
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    Thanks for posting that study Stephan, very...

    Thanks for posting that study Stephan, very interesting.
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    I want a doctor/pharmacist (or at least a direct...

    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...
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    I'm not without a job yet, but I have practiced...

    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...
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    I second kenna's response with one exception. I...

    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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    I've never wanted a transplant, I would get 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...
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    I'm looking to switch from Orkambi to Symdeko at...

    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...
  9. No test is perfect, but it is hard for me to...

    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. ...
  10. Thread: Px Routine

    by ethan508
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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...
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    What was your measured improvement in breathing?...

    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...
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    I think putting oils in the air (diffuser) with...

    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...
  13. To win this, somehow it has got to be her...

    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,...
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    Don't be impatient, you are still young. CF just...

    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...
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    I too am curious what you mean by "solved" and...

    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...
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    I had a nurse once mention off-hand that weight...

    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...
  17. I really like having a Desktop computer to sit at...

    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...
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    There is a bit of a yin and yang about this...

    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...
  19. Thread: Tobi

    by ethan508
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    It takes 15+ minutes. There is a powder version...

    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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    The 37 expected life span would be a lot higher...

    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'...
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    Sunny, welcome to the forum, I'm sorry we aren't...

    Sunny, welcome to the forum, I'm sorry we aren't meeting under more pleasant circumstances for you.

    Your son's diagnosis would have been similar to my older brother had I not come along. He was...
  22. Thread: Tobi

    by ethan508
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    Like kenna2 said, 28 days on, 28 days off Tobi...

    Like kenna2 said, 28 days on, 28 days off Tobi cycles are common for those of us that culture pseudomonas. I don't tolerate inhaled Tobi super well (hearing diminishes, I fight thrush, I feel like...
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    Way cool idea. Thanks for sharing.

    Way cool idea. Thanks for sharing.
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    I've often wondered if it a simple matter of...

    I've often wondered if it a simple matter of size. Males are generally just bigger than women. With that size comes slightly larger lungs, slightly larger airways, slightly more body mass to consume...
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    The paradox of Orkambi

    It has been a while since posting and I want to share my experience on Orkambi for the last 15 month (TL;DR version: Orkambi is helping my system when I don't have Orkambi in my system).

    First...
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