Cystic Fibrosis Forum (EXP)

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  1. P

    Schools with bad air quality

    I just watched the Republican debate. All of the canidates want to deregulate everything, including clean air. Contact a Democrat, running for Congress in your district and tell him/her your story. Let them make this school a campain issue without naming you. Bill
  2. P

    Mutation L997F

    L997F is a major contributor to CF related pancreatitis. Having been there and having lost the production of my pancreatic enzymes, I would strongly suggest that not take this lightly. He had better "look into the reality of CF" and keep looking into it. Bill
  3. P

    Mutation L997F

    L997F is a major contributor to CF related pancreatitis. Having been there and having lost the production of my pancreatic enzymes, I would strongly suggest that not take this lightly. He had better "look into the reality of CF" and keep looking into it. Bill
  4. P

    The Vest

    Good for him.
  5. P

    The Vest

    Good for him.
  6. P

    Whose with somebody and the parents throw insulting comments at you?

    Maybe you can both move in with your DAD.
  7. P

    Whose with somebody and the parents throw insulting comments at you?

    Maybe you can both move in with your DAD.
  8. P

    Help I am new to this all!!

    I don't know if he has CF but I do know that you need to get him to a CF Center so he can be tested and evaluatated. Bill
  9. P

    Help I am new to this all!!

    I don't know if he has CF but I do know that you need to get him to a CF Center so he can be tested and evaluatated. Bill
  10. P

    Whose with somebody and the parents throw insulting comments at you?

    CF and CFRD is not a license to sleep in. It soulds like she thinks that you could be helping her around the house. Bill
  11. P

    Whose with somebody and the parents throw insulting comments at you?

    CF and CFRD is not a license to sleep in. It soulds like she thinks that you could be helping her around the house. Bill
  12. P

    Help I am new to this all!!

    CrisDopher: "THE GENE" was identified in 1989, two years after I was dx. Being and old man, I have senior moments so perhaps my first screening was done slightly after 1993 (and who said that my screen was not done as a test). I had a FULL SEQUENCING done in 2011 and at that time I was advised...
  13. P

    Help I am new to this all!!

    CrisDopher: "THE GENE" was identified in 1989, two years after I was dx. Being and old man, I have senior moments so perhaps my first screening was done slightly after 1993 (and who said that my screen was not done as a test). I had a FULL SEQUENCING done in 2011 and at that time I was advised...
  14. P

    Enzyme Change...not really working

    Bloated, gassy and smelly are symptoms of "bacterial overgrowth". Run it past your CF Doctor. Bill
  15. P

    Enzyme Change...not really working

    Bloated, gassy and smelly are symptoms of "bacterial overgrowth". Run it past your CF Doctor. Bill
  16. P

    Whose with somebody and the parents throw insulting comments at you?

    Are you living in her house? Are you paying rent to be there or are you a long term guest?
  17. P

    Whose with somebody and the parents throw insulting comments at you?

    Are you living in her house? Are you paying rent to be there or are you a long term guest?
  18. P

    Help I am new to this all!!

    Clearly your Doctor is not a CF Specialist and the info that he/she is giving you is VERY out of date. There are almost 1900 known mutations and they can all be tested. In 1963 I was tested and the range was only 250 mutations. I was recently retested and the range is now close to 1900. You...
  19. P

    Help I am new to this all!!

    Clearly your Doctor is not a CF Specialist and the info that he/she is giving you is VERY out of date. There are almost 1900 known mutations and they can all be tested. In 1963 I was tested and the range was only 250 mutations. I was recently retested and the range is now close to 1900. You...
  20. P

    PICC line complaints

    YES!!! Call the CF CLINIC and talk to the Doctor on call.
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