Cystic Fibrosis Forum (EXP)

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  1. C

    Frightened and sad...

    I could write a book on this, like many people involved with cf could! I can give you this little bit of insight though - trust me, after awhile, this will come to you like brushing your teeth everyday does. You just learn to do it and it becomes a normal part of your life. Yes, its very scary...
  2. C

    How do YOU clean your nebulizer?

    Dishwasher - all parts, even the masks and those aerochambers used for inhalers - I use the china/crystal setting and the air dry setting. Then I put a clean dish towel in a big bowl and place all the parts in there to dry. Then when dry, I put all the parts together and have them categorized by...
  3. C

    Top Ten unusual things to bring to Hospital for an admission...

    OK, you are all making me feel absolutely ridiculous now! LOL...we just got out of a 10 day stay and I knew we were gonna be confined to the room cuz of the MRSA in the lungs.....so I did pack like I was staying for a bit....laptop, word searches, "med list" (they always ask and all the...
  4. C

    Meconium and newborns

    I don't think all cf babies are....its like 15% of cf babies are born with the meconium ileus. My guy's obstruction caused quite a stir as he got into great trouble just a day after I had had an ultrasound. He had stopped moving - just like that. Went in to OB and he said we are having a baby...
  5. C

    Can anyone help?

    I heard most recently that they are no longer giving benefits to people with CF automatically due to the nature of the disease being terminal/life threatening. I heard they are coming up with new criteria such as you must have been in the hospital 3x that year and had PFT's that were very low at...
  6. C

    ADHD and Nutrition issues

    Hello! My 11yr old son w/cf suffers with adhd and bipolar. So for the longest time, all the stimulant drugs made him aggressive because he wasn't being medicated properly given the diagnoses of the bipolar. When I did find the right psychiatrist, it made all the difference! But back to your...
  7. C

    What song do you relate your CF fight to

    Since the cf'er is my son... "He's My Son" by Mark Schultz and "I Don't Want To Miss A Thing" by Aerosmith are my choices :)
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