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    Been AWOL but need some 50 PSI Compressor advise

    Thanks both!
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    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 brands out there? Pros/cons? Recommendations??? Thanks!!!
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    Switch From Kalydeco to Symdeko

    Penny that is so great! Thanks for sharing!!!
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    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 and his doctor was very hot on Symdeko, after recommending against Orkambi for him. Just saw they...
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    Switch From Kalydeco to Symdeko

    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 to have him on Symdeko when he is old enough. As she said: It is more effective and has better...
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    Vertex Announces Acceptance of Applications for review of Tezacaftor/Ivacaftor

    February 2018 should be decision.
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    Transplant time

    Praying for you. And bumping this up for those who might have missed over weekend. Godspeed.
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    Medicare- Is there ANY way to get HOME IVs covered?

    You might want to call the cff.org free legal service as they'd know the ins and outs.
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    Discontinuing Ursodiol (Actigall)

    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 it take to know if liver enzymes are elevated? Can you do a serious of tests like once a week or...
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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 were using a product. I never started up again, thank God, as it sounds from another FDA release...
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    FDA approves Kalydeco for 5 residual function mutations

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

    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!!
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    Tune up

    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. DS started by saying what a horrible nurse I was but by the end I got an A-. Sooooo...while...
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    Proud moment (off topic)

    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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    Proud moment (off topic)

    Smiling ear to ear! And some happy tears coming down the middle!
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    Vertex Triple works for het-mins and improves ddf508 better!

    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 country but can you check with you doctors to find out? The trials will likely begin mid 2018.
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    Vertex Triple works for het-mins and improves ddf508 better!

    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 will depend on the FDA. My "gut" will be they run a trial for the triple that involves one arm...
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    Vertex Triple works for het-mins and improves ddf508 better!

    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 closer. So the tripple wor\ks for anyone with at least one df508 and with close to |Kalydeco FEV...
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    Vertex Triple works for het-mins and improves ddf508 better!

    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.
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