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  • SeeEff's Avatar
    Yesterday, 08:20 PM
    SeeEff replied to a thread opening up in Families
    I agree with you, kenna2. Very well done.
    4 replies | 545 view(s)
  • Gammaw's Avatar
    Yesterday, 12:13 AM
    Gammaw replied to a thread Class trip in Families
    We all constantly try to balance safety with fun - whether you have CF or not. Some things are just outside our risk tolerance - CF or not. Itís...
    3 replies | 125 view(s)
  • Ratatosk's Avatar
    10-16-2018, 08:10 AM
    Ratatosk replied to a thread Class trip in Families
    I don't have CF, but I've been to a couple different caves before DS wcf was born --- Colossal Cave in Arizona was a dry cave. I remember thinking...
    3 replies | 125 view(s)
  • ymikhale's Avatar
    10-16-2018, 02:32 AM
    ymikhale replied to a thread Class trip in Families
    HI, I always avoid this kind of stuff, even though my DD is disapointed, she eventually gets over it. There are plenty of other fun things to do and...
    3 replies | 125 view(s)
  • Rebjane's Avatar
    10-15-2018, 04:52 PM
    Thank you all for your wonderful input! I think as long as there is good air circulation(outside) it's worth a try. She is so creative and I want...
    5 replies | 674 view(s)
  • threebabies's Avatar
    10-15-2018, 03:29 PM
    threebabies started a thread Class trip in Families
    Hi my twin boys (both cfers) are supposed to be going on a class trip to Howe Cavern in Upstate New York. The caves are about 100 feet underground. I...
    3 replies | 125 view(s)
  • hammerpocket's Avatar
    10-15-2018, 12:51 PM
    I went to art school "many moons ago" as well (and have CF). I'm surprised your sister would suggest that acrylic paint might be harmful. Of course,...
    5 replies | 674 view(s)
  • imported_MaggieB's Avatar
    10-15-2018, 11:35 AM
    Hi! Iím 44 w/CF, and acrylics have never bothered me! Oils smell strong, but acrylics are their CF-friendly counterparts! Let there be art!! :)
    5 replies | 674 view(s)
  • Ratatosk's Avatar
    10-15-2018, 08:07 AM
    I think, too that certain paints -- oils and oils used to clean brushes would be more of an irritant. Acrylics usually don't have much of an odor. ...
    5 replies | 674 view(s)
  • ratin97's Avatar
    10-15-2018, 05:26 AM
    that was helpful, and i will use it in my site.
    22 replies | 5329 view(s)
  • kenna2's Avatar
    10-14-2018, 08:11 PM
    I don't paint, however I think you should get her the paints. If it's therapeutic to her then I think it's worth it. With CF there are some things...
    5 replies | 674 view(s)
  • Rebjane's Avatar
    10-14-2018, 06:52 AM
    https://www.cff.org/What-is-CF/Diagnosed-With-Cystic-Fibrosis/ Found this on the CF website lots of good info.
    4 replies | 535 view(s)
  • Rebjane's Avatar
    10-14-2018, 06:48 AM
    Hope it's not CF but definately needs to be addressed and ruled in or out. When is her appointment with the CF doctor? A sweat test is a test they...
    4 replies | 535 view(s)
  • Rebjane's Avatar
    10-14-2018, 06:36 AM
    Wondering about recommendations for paints that will not irritate CF lung? My daughter has a strong artistic streak(very therapeutic and relaxing...
    5 replies | 674 view(s)
  • Nickel's Avatar
    10-11-2018, 07:14 PM
    I agree. I just spoke with her Dr. and shes sending the referral to a CF specialist in Lexington KY.
    4 replies | 535 view(s)
  • Michaelp397's Avatar
    10-11-2018, 12:19 PM
    Michaelp397 replied to a thread Dry Cough/Symdeko in Adults
    I tried 7% and it was way to strong all I did was cough the entire time so now they have me on 3% it's much more tolerable. Good luck!
    6 replies | 1703 view(s)
  • Ratatosk's Avatar
    10-11-2018, 09:03 AM
    Ratatosk replied to a thread Dry Cough/Symdeko in Adults
    Whoops, yes, sorry about that. Generic 7% hypertonic saline. :)
    6 replies | 1703 view(s)
  • Michaelp397's Avatar
    10-11-2018, 08:42 AM
    Michaelp397 replied to a thread Dry Cough/Symdeko in Adults
    When you say Hypersal do you mean Hypertonic Saline?
    6 replies | 1703 view(s)
  • Ratatosk's Avatar
    10-10-2018, 02:15 PM
    Ratatosk replied to a thread Dry Cough/Symdeko in Adults
    He had a clinic appointment last week and his pfts were fine and he isn't culturing anything other than normal flora. I did mention the cough, they...
    6 replies | 1703 view(s)
  • Michaelp397's Avatar
    10-10-2018, 01:55 PM
    Michaelp397 replied to a thread Dry Cough/Symdeko in Adults
    Yes my cough is different since starting symdeko. Its like there's always mucus that feels like it needs to come up But when I cough nothing hardly...
    6 replies | 1703 view(s)
  • Printer's Avatar
    10-10-2018, 01:50 PM
    It certainly seems like something that needs to be checked out. Her Doctor suspects CF but what is he/her doing to find a proper Dx. Your daughter...
    4 replies | 535 view(s)
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