Cystic Fibrosis Forum (EXP)

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  1. P

    Doctor with CF

    The answer is yes, just chose your field carefully. Bill
  2. P

    Sore toe...just one side

    My guess is GOUT, stress fracture would not be on and off, been there done that. Bill
  3. P

    the Dr says not cf.

    Aboveallis love: True but only if it is convient for her. I had 70 hospitalizations, over 10 years, for pancreatitis, before I was dx. Let me tell you. The pain from pancreatitis, I've been told, is second only to childbirth. I take 10 Creon 24 with EVERY MEAL AND SNACK and I have CFRD. My...
  4. P

    the Dr says not cf.

    Let me see if I understand what you are saying. Your daughter has had 7 (seven) hospitalizations over the past two years for pancretitis, she has 2 known mutations and a Doctor who says that she DOES NOT HAVE CF. You want to keep seeing the same doctors because you "don't run all over the map...
  5. P

    CFRD. Just checked two hrs after lunch is 164

    No need to be scared but she is likely CFRD. CFRD is not the same as regular diabetes. Call your CF Doctor. Bill
  6. P

    the Dr says not cf.

    tazgc1961: I just sent you a personal message. Bill
  7. P

    CFRD, what are the early signs?

    There is an article this month in the BOSTON CHILDREN's HOSPITAL CF NEWSWIRE. It reads in part as follows: SYMPTOMS OF CFRD Common symptoms, such as increased thirst and increased urination, are caused by high blood sugar levels (hyperglycemia). Other symptoms of CFRD are excessive fatigue...
  8. P

    Obama & Healthcare

    Brad: While it is really HOUSECARE, I like calling it OBAMACARE because when the uninformed find out how good it is, they will give him some credit. Musclemania70: Social Security and Medicare both work. Because people are living longer and working longer. A few adjustments are all that...
  9. P

    Ever dreaded a hospital stay?

    I have never been admitted to the hospital unless I really needed to be there. If I could receive sufficent care or treatment at home, I would stay home. I go to the hospital because I require the treatment that only they can provide. Going to the hospital is not an option nor is it a...
  10. P

    DeltaF508 and M1101K

    You need to understand that if there were 10 people here with those mutations, you would be looking at 10 very different roadmaps. Double Delta F508 is the most common combination of mutations, even brothers with that combination will have different cases of CF. Sorry, it is just the way it...
  11. P

    excited

    Good for you.
  12. P

    neb machine

    scanboyd: Do you vest when you neb? Bill
  13. P

    Maybe CF, Maybe not?

    If wishes were horses, beggers would ride. We all want more tests and treatments. Unfortunally we have to take like as it comes and deal with it that way. Bill
  14. P

    Grandson diagnosed with CF through Newborn Screening

    Momto 25kids: I have CF, I'm 72 years of age, we will celebrate our 50th Wedding Anniversary in September. Tell that to your "know nothing friends". Bill
  15. P

    looking for help with questions to ask, and names for second opinion

    Barbara: Who are you currently seeing and at which hospital? Bill
  16. P

    Understanding the Genetics

    I can't explain but I can question. Did daughter have a FULL CF SEQUENCING. If she was tested differently than her siblings were, it would be possible that the scan did not include the second mutation. When I was first tested, in the mid 1990s, (for only 250 mutations) they only found the...
  17. P

    Book Recommendations for new CF Parent

    Harrabell: I don't know what the future holds for your little girl but I have CF. I'm 72 and we will celebrate our 50th Wedding Anniversary in September. Good luck, Bill
  18. P

    Maybe CF, Maybe not?

    WildCherry: I will not repete my error, I promise. Bill
  19. P

    Maybe CF, Maybe not?

    Clearly I missed the subject of your post. I"M sorry to have interjected my thoughts here. I bow to your superior education. Clearly I have been misinformed. Again I'm sorry. Bill
  20. P

    Maybe CF, Maybe not?

    You are NOT going go get any information here as good as what your doctors are telling you. If son has 2 mutations, he got one from hubby and the other from you. Both mutations CANNOT come from one parent. A full screening is more than 1800 mutations. Your carrier screening DID NOT screen...
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