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  • Imogene's Avatar
    Yesterday, 04:42 PM
    Survey #3https://www.surveymonkey.com/r/NR9PRDY has 99 participants! 25.00 gift cards to participant 100 and 125! lots happening behind the...
    33 replies | 16580 view(s)
  • Palmer's Avatar
    Yesterday, 08:35 AM
    Palmer replied to a thread American Healthcare Act in Adults
    it's all very sad
    39 replies | 8293 view(s)
  • kenna2's Avatar
    06-15-2018, 05:39 PM
    kenna2 replied to a thread Symdeko Headache in Adults
    I had headaches when I first started Symdeko as well. They went away after about 3 weeks for me. Still on Symdeko and doing well. Hopefully this is...
    1 replies | 388 view(s)
  • ethan508's Avatar
    06-15-2018, 12:16 PM
    ethan508 started a thread Symdeko Headache in Adults
    I am switching from Orkambi to Symdeko because the Orkambi had consistently increased the tight feeling in my breathing despite me picking up...
    1 replies | 388 view(s)
  • ethan508's Avatar
    06-15-2018, 12:02 PM
    ethan508 replied to a thread Question about order in Adults
    Thanks for posting that study Stephan, very interesting.
    11 replies | 1628 view(s)
  • LittleLab4CF's Avatar
    06-15-2018, 02:04 AM
    LittleLab4CF replied to a thread Question about order in Adults
    I'm not going to be able to answer your question about Xopenex. I did a "Search" of Xopenex and there are in excess of 500 references in over 500...
    11 replies | 1628 view(s)
  • Starfall99's Avatar
    06-14-2018, 11:38 AM
    Starfall99 replied to a thread Question about order in Adults
    Was just logging in to post this exact question, so thanks outofthisworld! I've been doing Pulmozyme after airway clearance, because my previous CF...
    11 replies | 1628 view(s)
  • Imogene's Avatar
    06-13-2018, 11:05 AM
    Hi All! Our Survey#3mHealth Attitudes is up to 85 participants! Participant #75 received a gift card. A patient from Minnesota. The 100th and...
    33 replies | 16580 view(s)
  • Jshet22's Avatar
    06-12-2018, 01:37 PM
    Jshet22 replied to a thread Pseudomonas fluorescens in Families
    Thank you so much for replying. The doc called this morning and said he's gonna put him on tobi for 28 days to see if that rids it. He will make a...
    2 replies | 211 view(s)
  • gnc21's Avatar
    06-12-2018, 02:45 AM
    Hello there :) My name is Georgia Chambers and I am a psychology student at the University of Bath. Myself and Dr. Anna Elderton, a clinical...
    0 replies | 238 view(s)
  • Ratatosk's Avatar
    06-11-2018, 04:36 PM
    Ratatosk replied to a thread Pseudomonas fluorescens in Families
    DS cultured it about 9 years ago and the doctor really wasn't concerned as it was shown as rare, I don't recall what it was sensitive to, but doctor...
    2 replies | 211 view(s)
  • Jshet22's Avatar
    06-11-2018, 04:24 PM
    Hi guys. Been awhile since I posted but was Just wondering if there is any need for concern when child cultures pseudomonas fluorescens? It's the...
    2 replies | 211 view(s)
  • MissAlexsBP's Avatar
    06-10-2018, 09:45 PM
    MissAlexsBP replied to a thread Weight Gain in Nutrition
    Hi! Are you on any appetite stimulants and/or receptive to taking them. It's a bummer to take another medication, but appetite stimulants have...
    85 replies | 19918 view(s)
  • stephen's Avatar
    06-10-2018, 05:32 PM
    stephen replied to a thread Question about order in Adults
    ethhan508, I agree that not all drugs react with each other in a neutralizing way. However the reason to wait before nebulizing antibiotics...
    11 replies | 1628 view(s)
  • fallenevilangel0's Avatar
    06-10-2018, 12:30 AM
    My nephew will indicate that something is wrong with his tummy and get really cranky when his enzymes need to be increased. He also eats less because...
    7 replies | 909 view(s)
  • Ratatosk's Avatar
    06-09-2018, 11:37 PM
    Congrats! glad to hear you're doing so well.
    1 replies | 145 view(s)
  • scanboyd's Avatar
    06-09-2018, 04:39 PM
    I recently had a double lung transplant. My fev1 prior to surg. was 19, 3 wks post surg. it is 72. Doing great otherwise. Just a little sore. I was...
    1 replies | 145 view(s)
  • ethan508's Avatar
    06-09-2018, 08:14 AM
    ethan508 replied to a thread Question about order in Adults
    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...
    11 replies | 1628 view(s)
  • fel's Avatar
    06-08-2018, 11:20 PM
    fel replied to a thread Weight Gain in Nutrition
    Are any of you on this thread pancreatic sufficient? My son is PS, but he is still struggling with low weight. Unfortunately (or fortunately?) he...
    85 replies | 19918 view(s)
  • kenna2's Avatar
    06-08-2018, 10:22 AM
    kenna2 replied to a thread Anti-IgE Test in Adults
    I've had this tested a couple of times. From my understanding, basically this is a test to see how well your body's immune system works and is able...
    1 replies | 396 view(s)
  • Ratatosk's Avatar
    06-08-2018, 08:25 AM
    Ratatosk started a thread Anti-IgE Test in Adults
    DS' doctor retired and we're now attending a new CF Clinic and a few new labs were ordered. Got most of them figured out --- an additional liver...
    1 replies | 396 view(s)
  • stephen's Avatar
    06-07-2018, 04:55 PM
    stephen replied to a thread Question about order in Adults
    A number of years ago I read that it took Pulmozyme about 30 minutes to break down the mucus. Therefore, nothing should be nebulized for 30 minutes...
    11 replies | 1628 view(s)
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