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Thread: R334w

  1. #31
    Senior Member
    Join Date
    Jun 2011
    Posts
    493
    Quote Originally Posted by amalone View Post
    I wonder if you all would be willing to resurrect this conversation with an update. I am one of the few people with DF508 and R334W. I would love to hear if anyone with that mutation has gotten a chance to try Kalydeco since you all last posted.

    I am fairly mild in my Cf presentation. My FEV1 hovers around 75% of predicted. I am pancreatic sufficient and have manageable sinus issues. A couple docs have danced around sinus surgery but decided against it. Presently my primary method of controlling my pulmonary function is Hypertonic Saline and regular running.
    I guess I am very lucky and I pray I stay that way. My FEV is 111-114. I have colitis which I am managing with diet and L-Glutamine. Never took Kalydeco b/c I am not sick. Why are people taking it?
    ~ Simba15
    56 year old, diagnosed at age 50. Blessed to still be here!

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  4. #34
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  8. #38
    Junior Member
    Join Date
    Dec 2020
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  9. #39
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  10. #40
    Junior Member
    Join Date
    Jan 2021
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    1
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