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  1. Thanks both!

    Thanks both!
  2. Been AWOL but need some 50 PSI Compressor advise

    Been AWOL trying to launch a new career but so nice to see all the familiar names.

    Needing some help with a 50 psi compressor to replace the Invacare one that is not longer made!!!

    What other...
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    Penny that is so great! Thanks for sharing!!!

    Penny that is so great! Thanks for sharing!!!
  4. So glad our CF doctor told us NO bath toys for DS when he was first diagnosed.

    http://abcnews.go.com/Health/wireStory/yucky-ducky-study-reveals-bath-time-toys-dirty-54046504
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    Symdeko trials for 6-11

    https://clinicaltrials.gov/ct2/show/study/NCT02953314?term=vertex&cond=Cystic+Fibrosis&draw=2&rank=29&show_locs=Y

    As I noted in another thread, DS has his quarterly appointment a couple weeks back...
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    We just had DS appointment a couple weeks past...

    We just had DS appointment a couple weeks past and his CF doctor was VERY high on Symdeko where she hadn't been on Orkambi. In fact, she recommended against starting DS on Orkambi, but seems ready...
  7. February 2018 should be decision.

    February 2018 should be decision.
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    Praying for you. And bumping this up for those...

    Praying for you. And bumping this up for those who might have missed over weekend. Godspeed.
  9. You might want to call the cff.org free legal...

    You might want to call the cff.org free legal service as they'd know the ins and outs.
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    Some thoughts...mostly questions I would ask the...

    Some thoughts...mostly questions I would ask the doctor to decide best course:
    1) Is DS's situation different given he was on because of TPN and not CF per se?
    2) If he discontinues how long would...
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    b-cepacia recall for liquids

    https://www.fda.gov/Safety/Recalls/ucm571001.htm?source=govdelivery&utm_medium=email&utm_source=govdelivery

    This same manufacturer had same recall for product about a year ago which at the time we...
  12. FDA approves Kalydeco for 5 residual function mutations

    http://investors.vrtx.com/releasedetail.cfm?ReleaseID=1035299
  13. Thread: Tune up

    by Aboveallislove
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    yes... if it weren't for getting out of the...

    yes... if it weren't for getting out of the hospital early there'd be no way I'd be able to do it!! You'll do great!!
  14. Thread: Tune up

    by Aboveallislove
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    Hey Mom: I'm assuming you've done PICC lines at...

    Hey Mom: I'm assuming you've done PICC lines at home? We haven't done a PORT yet and I just did DS first PICC in April and I was a complete wreck that I'd screw it up especially with the sterility....
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    It is so nice to "have" you all! No one really...

    It is so nice to "have" you all! No one really know what we go through...except those walking the same path. Thanks Jeanne!!!
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    Smiling ear to ear! And some happy tears coming...

    Smiling ear to ear! And some happy tears coming down the middle!
  17. Romina: Your English was great! These medicines...

    Romina: Your English was great! These medicines was still in trials but as long as you have one copy of df508 they should work for you if the trials go well. I do not know if they do trials in your...
  18. The strategy is to have one triple for anyone...

    The strategy is to have one triple for anyone with df508 or where \known benefit of Or\kambi and one for those with 551 and the second a het-min. How they test that will be difficult to \know and...
  19. The study tested CFers with one copy of df508 and...

    The study tested CFers with one copy of df508 and one copy of another gene not expected to benefit from Orkambi/next generation because it has minimal function (so some class 1). We're getting...
  20. Yes happy tears here too. There are 2 more drugs...

    Yes happy tears here too. There are 2 more drugs in the ring still and they are both BETTER in vitro. And hopefully don't have the same ris\k re pregnancy.
  21. Vertex Triple works for het-mins and improves ddf508 better!

    http://investors.vrtx.com/releasedetail.cfm?ReleaseID=1033559,
    A wonderful day.
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    What I would say is that they should know that...

    What I would say is that they should know that every CF patient and parent is different and copes in a different way and that with this disease coping is key so do what they can to assist. For...
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    Our clinic has us bump treatments to 4x a day and...

    Our clinic has us bump treatments to 4x a day and if not improving in about 3 days then does an antibiotic based on prior culture.
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    Sorry. Should be flares up in GI track. I don't...

    Sorry. Should be flares up in GI track. I don't know how ecoli works but those symptoms sound like what they always say is ecoli and if it's in his cultures he must have a source for it...his GI...
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    Was your DS the one who culture e-Coli? Wonder if...

    Was your DS the one who culture e-Coli? Wonder if that could be an issue that flares up in his first track?
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