Recent content by Aboveallislove

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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.
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    Symdeko trials for 6-11 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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    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 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 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
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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!!!