Cystic Fibrosis Forum (EXP)

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  1. P

    Adults please

    NOBODY WANTS TO DO TREATMENTS. We do them so that we can maintain some level of health. God knows that there are lods of things that I would rather be doing than sucking on 7% Sailine. Bill
  2. P

    Adults please

    NOBODY WANTS TO DO TREATMENTS. We do them so that we can maintain some level of health. God knows that there are lods of things that I would rather be doing than sucking on 7% Sailine. Bill
  3. P

    How do they know?

    According to Mayo Clinic, there are more than 1800 known mutations. There may be more mutations that are still unknown. All that can be done is to run a FULL CF SEQUENCING. Katie how many mutations did they scan for? Bill
  4. P

    How do they know?

    According to Mayo Clinic, there are more than 1800 known mutations. There may be more mutations that are still unknown. All that can be done is to run a FULL CF SEQUENCING. Katie how many mutations did they scan for? Bill
  5. P

    getting irritated by people who say this to me

    Queen: Simply reply "I know more about the condition of my health that you do...I know that you mean well but I can take it from here" Bill
  6. P

    getting irritated by people who say this to me

    Queen: Simply reply "I know more about the condition of my health that you do...I know that you mean well but I can take it from here" Bill
  7. P

    In CF denial?

    You are not a mass murderer, you have inherited a genetic disease. It is OK to tell people. Bill
  8. P

    Please read and help if you can

    As a function of cost, your Doctor (insurance company) screened only for the MOST COMMON mutations. Delta F508 is the MOST COMMON of all the mutations. There are somewhere between 1500 and 1900 CF mutations. Your Doctor will now do a FULL CF SEQUENCING, a screening of ALL KNOWN mutations. At...
  9. P

    Please read and help if you can

    As a function of cost, your Doctor (insurance company) screened only for the MOST COMMON mutations. Delta F508 is the MOST COMMON of all the mutations. There are somewhere between 1500 and 1900 CF mutations. Your Doctor will now do a FULL CF SEQUENCING, a screening of ALL KNOWN mutations. At...
  10. P

    DF508 question

    I am 100% PI Bill
  11. P

    DF508 question

    I am 100% PI Bill
  12. P

    Right test for me

    YES!!! Bill
  13. P

    Right test for me

    YES!!! Bill
  14. P

    Socially Acceptable Ways to Pass Gas!

    This situation is "funny" but it is no joke. He could be suffering from "bacterial overgrowth" or could have a stool build up in his colon. He is likely experiencing abdomonial pain as well. He really needs to see a CF Gastro Specialist. I know, been there done that. Bill
  15. P

    Socially Acceptable Ways to Pass Gas!

    This situation is "funny" but it is no joke. He could be suffering from "bacterial overgrowth" or could have a stool build up in his colon. He is likely experiencing abdomonial pain as well. He really needs to see a CF Gastro Specialist. I know, been there done that. Bill
  16. P

    To move or not to move.

    I recently changed CF Centers but both Centers are in my city. I understand your frustration. My guess is that, no matter how good or bad your local CF Doctor is, you will never be happy there. Go ahead and make the change and have both CF Doctors "under one roof". Bill
  17. P

    To move or not to move.

    I recently changed CF Centers but both Centers are in my city. I understand your frustration. My guess is that, no matter how good or bad your local CF Doctor is, you will never be happy there. Go ahead and make the change and have both CF Doctors "under one roof". Bill
  18. P

    UPDATE from APPT: 8 yo with pancreatic insufficiency, fighting for genetic sequencing

    8 yo with pancreatic insufficiency, fighting for genetic sequencing A Full CF Sequencing is a FULL CF SEQUENCING no matter where it is done. Mine was done at a CF Research Lab In Cambridge MA. Quest will be fine. You are doing everything perfectly and I applaud you. Be patient and wait for...
  19. P

    What's your lung function and what can you do with it?

    Havoc: 75% is right the marathon is a joke. Bill
  20. P

    What's your lung function and what can you do with it?

    Havoc: 75% is right the marathon is a joke. Bill
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