Cystic Fibrosis Forum (EXP)

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Recent content by SJO

  1. S

    Out of state transplants because of b. cepacia?

    Can anyone help me understand where B. Cepacia lives and if there are anyways to avoid it? My son is 9 with CF.
  2. S

    Mycobacterium avium-intracellulare complex (MAC) Need info please

    What is MAC? Thank you.
  3. S

    just over a year wait but on July 23 it finally happed I got lungs

    Thank you for sharing….I am so happy for you :)
  4. S

    20 Weeks Pregnant and found out baby has DDF508 CF - What to expect, and what to do?

    Hi Doug. My husband has CF and he did not find out until my son was born. My son was in/out of the hospital the first year of his life....he struggled greatly until we found out he has CF. Our son is now 8 and is doing fantastic and thriving! My friend has a 17 year old daughter with DDF508...
  5. S

    Need someone to talk to for my senior project parents of patients and patients.

    I sent you a message but I don't see it in my outbox. My son just turned 8, has CF. happy to talk dana@ignyte.biz
  6. S

    Are the PFT clinic machines spreading bacteria?

    Bill...I did ask the clinic we do PFT's at, I also asked the infectious disease department at Stanford Hospitol and I called the Cystic Fibeosis Foundation. Pretty much accross the board I have been told that PFT machines are very expensive...that in order for CF patients clinical data to be...
  7. S

    Are the PFT clinic machines spreading bacteria?

    I have always wondered if PFT clinic machines spread bacteria among CF patients? I understand that there is a 'disposable point of contact mouth piece' used for each patient. I wonder about the filtration mechanism itself and how it filters bacteria past the disposable piece itself, through the...
  8. S

    How...?

    I appreciate the feedback very much. It has helped me to look at this situation from varying viewpoints....something that is always good to explore. I will say however....feedback delivered with a kind tone is much more effective than that in a harsh tone. All good feedback to have on this CF...
  9. S

    a book about cf

    LOVE the idea...willing to talk/share if that could help... 7 year old son with CF
  10. S

    How...?

    My son is 7, he attends private school. His CF is progressing and I need to shield him from the winter cold/flu/virus pool as much as possible. How can I approach letting his peers/classmate parents know he has CF and could they think twice about sending their kids to school with a non allergy...
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