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  1. M


    Adults with CF, how did your transition go when you "aged" out of pediatric care? Did you just move to another CF clinic, did you just switch to seeing individual doctors, Pulmo, Endo, Nutritionist, etc The nearest adult clinic is very far away and I was thinking it may be easier to transfer...
  2. M

    Trikafta Q&A, Experiences, etc.

    My son just started taking Trikafta this week, we are on day 3. So far haven't seen much of a change in his cough or purging yet but we are lucky in that he's always been pretty healthy, 80% or higher on his PFTs. I'm most interested to see how this will effect his growth and digestion and blood...
  3. M

    600 years’ supply of cystic fibrosis drug destroyed in price row

    Yeah frankly, I'm tired of footing the bill for other countries. We do the research and spend billions and billions of dollars on it, and then Canada and the UK come in with their stupid national healthcare that gives back NOTHING to the world and expects a lower price... Without the US, these...
  4. M

    Hypertonic Saline Non-Covered Medication

    well I am not sure about a long term solution but when I get desperate or I have a lapse in my insurance, I make my own for my son. I read this online a long time ago. I get a gallon of distilled water (do not use any other kind of water!) and non iodine added salt (like kosher salt), I pour...
  5. M

    Adults with CF what are your jobs?

    I have a son with cf. Thinking ahead... just wondering what skills would be useful for him to learn now that might be helpful for a career that you can work from home. I want him to be as self sufficient as possible. He's taking a 3D modeling class but I know that's not super useful outside of...