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  • jricci's Avatar
    Today, 09:38 AM
    2.5 years after this study was started, they FINALLY opened it up to those with rare mutations other than nonsense mutations. ...
    1 replies | 869 view(s)
  • stock12's Avatar
    Today, 04:10 AM
    Thanks spoke with cf staff here and am eligible! Just need it to be approved here in Australia
    2 replies | 122 view(s)
  • kenna2's Avatar
    Yesterday, 10:43 PM
    With one copy of the DF508 you should be eligible. Here's a link to the med site for more information. https://www.trikafta.com/
    2 replies | 122 view(s)
  • stock12's Avatar
    Yesterday, 09:42 PM
    hi all How does one find out based on my mutations if I am eligible for Trikafta? I have one copy of delta f508 and another which I am unsure if ai...
    2 replies | 122 view(s)
  • kenna2's Avatar
    Yesterday, 02:44 PM
    Chaos...I'm so glad to hear that you're pfts are amazing and that you're willing to give Trikafta a shot. Can I ask what symptoms you were...
    12 replies | 3195 view(s)
  • kenna2's Avatar
    Yesterday, 12:12 PM
    So CF has to start somewhere. I am the first and only one in my family who has it. My parents are the only carriers in their family (including...
    1 replies | 257 view(s)
  • Sorara22's Avatar
    11-20-2019, 02:32 PM
    Hello all, This is a new forum to me. I am looking for answers. My son was born in April, he had high bilirubin for the first 5 weeks of his life,...
    1 replies | 257 view(s)
  • ChaosEst1979's Avatar
    11-20-2019, 01:36 PM
    Thank you all for your questions and responses. I took the first two modulators briefly and had horrific side effects to both causing me to stop...
    12 replies | 3195 view(s)
  • kenna2's Avatar
    11-20-2019, 10:10 AM
    Before starting Orkambi I was at 46% and before Symdeko I was at 58%. I am now at 65% and still waiting for insurance to approval. I completely...
    12 replies | 3195 view(s)
  • Jeana Lynn's Avatar
    11-20-2019, 02:10 AM
    kenna2 with all the different junk you were coughing up, what was your starting fev1? In a way, I am a little terrified of all the coughing from the...
    12 replies | 3195 view(s)
  • kenna2's Avatar
    11-18-2019, 09:22 PM
    For me it took me a couple of days for me to start feeling the changes, but it took me a couple months to look back and realize "wow I feel better"....
    12 replies | 3195 view(s)
  • Hail2Pitt's Avatar
    11-18-2019, 03:47 PM
    Thanks for your reply! It's helpful to hear what you and others experienced with the junk you were bringing up. This is actually my first modulator,...
    12 replies | 3195 view(s)
  • kenna2's Avatar
    11-17-2019, 10:52 AM
    kenna2 replied to a thread Creon causing reflux? in Adults
    I've never had an issue with enzymes and reflux, however, acid reflux can become a much bigger issue when it comes to lung health. If gets out of...
    1 replies | 264 view(s)
  • MotherofCFBoy11yrs's Avatar
    11-17-2019, 07:00 AM
    My son, now 18, has had reflux for the last year or so. Before this he never had this problem. It occurred to me that the reflux started around...
    1 replies | 264 view(s)
  • kenna2's Avatar
    11-14-2019, 04:52 PM
    So the amount you are getting up is probably from both the infection and from the Trikafta. I've been seeing lately that people who are taking it are...
    12 replies | 3195 view(s)
  • Jeana Lynn's Avatar
    11-14-2019, 04:29 PM
    Jeana Lynn started a thread Speed Bump in Adults
    So you know the saying, "I live life in the fast lane, but my wife is a speed bump?" That is my husband and I. Today my husband said that he still...
    0 replies | 104 view(s)
  • Hail2Pitt's Avatar
    11-14-2019, 03:55 PM
    Hi kenna2 - I wanted to ask you some follow-up questions about your experience on Orkambi and Symdeko. I got my Trikafta, and started taking it a...
    12 replies | 3195 view(s)
  • Sonja35's Avatar
    11-14-2019, 10:22 AM
    I'm actually on my 2nd week of Trikafta and I will tell you this... it IS the real deal! Within the 1st couple of days, I immediately felt a...
    5 replies | 1175 view(s)
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