Cystic Fibrosis Forum (EXP)

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Recent content by GrandmomBEV

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    keeping on top of meds

    This is a hrad one for me to get into , but I do know how many feel. My granddaugther has Cf asmost of you know & she is near me & works with me. i have the CF Pharmacy in Florida. We started it because of her 27 years ago . I have gone thru so many stages trying to get plans, routine...
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    g551d mutations on Kalydeco

    Great news. I am pleased he is doing so well I miss seeing you on the oled list . my ERIN (GRD) is having her TX eval this month at Mayo in Jax.FL. best wishes for shorty with this wonder drug... LOVE & HUGs, GrandmomBEV
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    Welcome Ambry Genetics

    Genetics testing No matter what gene .She is a doll& precious love, grdmbev
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    Airline travel

    We have traveled a great deal. Erin goes back & forth to NC all the time , even for weekends, wedddings, etc. As well as travels with me to CF Conferences & Educ dates. She has a letter from doctor, we call ahead if its a different airline & check what they are requiring. I think the little bag...
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    G551D Australian coming to the US for Ivacaftor (Kalydeco)

    <strong>There are so very many there. However I cant be sure one will do this , It sure cant hurt to check, You can also got to the website for the CFF.org they have a link with all the doctors, their clinic , address & phone numbers, That would be the quickest & best way to do that.</strong>...
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    G551D Australian coming to the US for Ivacaftor (Kalydeco)

    <strong>There are so very many there. However I cant be sure one will do this , It sure cant hurt to check, You can also got to the website for the CFF.org they have a link with all the doctors, their clinic , address & phone numbers, That would be the quickest & best way to do that.</strong>...
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    Massages in the hospital

    <strong>Massages in hospital. I dont know of any contracts for them , but we have had one come in -our cost, & it was really great..</strong><strong>I do think it would be a plus for patients.</strong><strong>maybe some can get it started in their centers.. best wishes.</strong>...
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    Massages in the hospital

    <strong>Massages in hospital. I dont know of any contracts for them , but we have had one come in -our cost, & it was really great..</strong><strong>I do think it would be a plus for patients.</strong><strong>maybe some can get it started in their centers.. best wishes.</strong>...
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    Hospital Tips

    <em>I have a printed list if you would like to give me your address I would be happy to send to you. I sendit to all the centers in my information packets. You may also call me for it 407-376-6242 There are hints from many folks from the CF emails lists I am onso are tried & true<img...
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    Hospital Tips

    <em>I have a printed list if you would like to give me your address I would be happy to send to you. I sendit to all the centers in my information packets. You may also call me for it 407-376-6242 There are hints from many folks from the CF emails lists I am onso are tried & true<img...
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    Hyper-Sal 7% (Hypertonic saline)

    Yes, you can purchase any % you want & it is much, much cheaper if you order from the original CF Pharmacy.. that is the only CF Pharmacy (named) 1-888-307-4427. they can compound it or sell you the commerical brand (it is limited in 5 available) the other pharmacy is CF services. call for...
  12. G

    Hyper-Sal 7% (Hypertonic saline)

    Yes, you can purchase any % you want & it is much, much cheaper if you order from the original CF Pharmacy.. that is the only CF Pharmacy (named) 1-888-307-4427. they can compound it or sell you the commerical brand (it is limited in 5 available) the other pharmacy is CF services. call for...
  13. G

    Hyper-Sal 7% (Hypertonic saline)

    Yes, you can purchase any % you want & it is much, much cheaper if you order from the original CF Pharmacy.. that is the only CF Pharmacy (named) 1-888-307-4427. they can compound it or sell you the commerical brand (it is limited in 5 available) the other pharmacy is CF services. call for...
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