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  • outofthisworld156's Avatar
    06-01-2018, 06:19 AM
    Hi there, I don't post a lot, but read here daily. I have a question about the order of nebulized medications, I did a quick search but couldn't find...
    11 replies | 1750 view(s)
  • Camsmommy's Avatar
    05-27-2018, 09:45 AM
    My 4 year old son with delta F508 genes, has had bad stomach pain for the past few months. Most of the time its right after he eats and often times,...
    7 replies | 957 view(s)
  • Imogene's Avatar
    05-24-2018, 12:26 PM
    We continue with a new Questionnaire. This one is to dig deeper into finding out what our community thinks is valuable in a new app! So far, 118...
    3 replies | 829 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...
    3 replies | 658 view(s)
  • kenna2's Avatar
    05-26-2018, 10:26 AM
    kenna2 started a thread What do you say you do? in Adults
    When meeting new people, I always fear the question of "what do you do for a living"? Since i'm not stable enough to work and don't want to get into...
    2 replies | 641 view(s)
  • Kuzimm's Avatar
    05-28-2018, 10:13 PM
    Hi all, Just had another Pari quit on me after several months, wondering if folks around here have recommendations about really good brands that...
    2 replies | 576 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...
    2 replies | 534 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...
    2 replies | 247 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 | 303 view(s)
  • masterykonedy's Avatar
    05-31-2018, 04:43 AM
    I am wondering if there is anyone out there with CFRD who has given birth. I'm 18 & in college, but what I want most in of my life is a family. I've...
    0 replies | 559 view(s)
  • adomaille's Avatar
    05-28-2018, 04:17 PM
    adomaille started a thread Looking for doc in OK in Adults
    Hey everyone, It's been a long long time since I've posted in here and I was hoping to get some direction. I have a deltaF508 and R117H with a...
    1 replies | 267 view(s)
  • BSpiegel's Avatar
    05-22-2018, 11:17 PM
    God bless everyone. Praying for anyone who needs prayers tonight.
    0 replies | 451 view(s)
  • iceskater7's Avatar
    Yesterday, 12:22 PM
    Hello friends! I recently had a genetic test done, and no mutations appeared. However, I'm 24 and my primary issues are GI and sinus, with mild...
    1 replies | 171 view(s)
  • Praetorian's Avatar
    05-31-2018, 06:47 PM
    I'm a new member here who found the forums not long ago. I'm now 27, living in the central US. I haven't been to a CF physician for some time now, so...
    0 replies | 338 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 | 275 view(s)
  • rtorres25's Avatar
    06-05-2018, 10:20 PM
    rtorres25 started a thread Pneumonia :( in Adults
    Has anyone else dealt with pneumonia? I was doing so well until it hit. I'm 52 and completely healthy other than my CF lungs. It has left me...
    0 replies | 259 view(s)
  • Imogene's Avatar
    06-19-2018, 08:01 AM
    https://pharmaphorum.com/news/patients-call-for-end-to-two-year-row-over-cf-drug-funding/?utm_source=pharmaphorum+Daily+Newsletter+%28updated+at+17082...
    0 replies | 199 view(s)
  • Babs03's Avatar
    06-05-2018, 12:19 PM
    I live in Stuart FL and go to a CF Clinic in West Palm Beach. Were looking to move further north because the waterways here in south FL are awful. ...
    0 replies | 199 view(s)
  • gnc21's Avatar
    Yesterday, 04:38 AM
    gnc21 started a thread Research help in Adults
    Hi 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 | 61 view(s)
  • gnc21's Avatar
    Yesterday, 04:40 AM
    Hi 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 | 53 view(s)
  • ethan508's Avatar
    Today, 03:14 PM
    ethan508 replied to a thread Symdeko Headache in Adults
    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...
    3 replies | 658 view(s)
  • Ratatosk's Avatar
    Yesterday, 01:23 PM
    Although it's always been advised to go to a CFF accredited facility to get a sweat test for consistency and accuracy, any medical clinic can do...
    1 replies | 171 view(s)
  • Ratatosk's Avatar
    Yesterday, 10:11 AM
    Ratatosk replied to a thread Anti-IgE Test in Adults
    Turns out they were supposed to run a regular IGE test or panel and not the Anti-IGE test. So next time he has bloodwork, it's on order.
    2 replies | 534 view(s)
  • Praetorian's Avatar
    06-20-2018, 01:47 PM
    Praetorian replied to a thread Weight Gain in Nutrition
    Alex, I don't know your daily habits or energy levels, but what has worked for me so far is to focus on proteins and use fat as a secondary energy...
    86 replies | 20163 view(s)
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