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  1. L

    How many CFers are 55 and older??What is your age if you do not mind telling us? :))

    I'll be 66 in December - diagnosed at 47.
  2. L

    Supreme Court Ruling Obamacare Upheld

    MAC is mycobacterium avium complex. It's in the same family as tuberculosis, only it's not contagious.
  3. L

    How awesome is your doctor?

    Without a doubt, a 5. My doctor is not only my doctor, but he's my friend - and treats me like one. He doesn't rely on others, so if I need to contact the clinic, I contact him and he takes care of any issues/problems. He respects my knowledge of CF and my own body and never dictates what I...
  4. L

    How awesome is your doctor?

    Without a doubt, a 5. My doctor is not only my doctor, but he's my friend - and treats me like one. He doesn't rely on others, so if I need to contact the clinic, I contact him and he takes care of any issues/problems. He respects my knowledge of CF and my own body and never dictates what I...
  5. L

    Good bye, my love

    I am so, so sorry for your loss. May you find peace and comfort in your memories - and in your daughter. My deepest sympathy, Laura
  6. L

    Good bye, my love

    I am so, so sorry for your loss. May you find peace and comfort in your memories - and in your daughter. My deepest sympathy, Laura
  7. L

    appeal

    Beth Sufian has CF and is a lawyer who specializes in disability law. She more-than-likely will be able to offer you assistance. You can contact her at: 800.622.0385 or: bsufian@usacfa.org Hope she can help you. Laura
  8. L

    who's over 50?

    I'm 64, will be eligible for Medicare in Dec. when I turn 65. I was diagnosed at 47. Are all of you aware of <em>CF Roundtable</em>? It's a quarterly newsletter written by adults for adults (although parents of CF children find it informative as well)that covers a focus topic each issue but...
  9. L

    who's over 50?

    I'm 64, will be eligible for Medicare in Dec. when I turn 65. I was diagnosed at 47. Are all of you aware of <em>CF Roundtable</em>? It's a quarterly newsletter written by adults for adults (although parents of CF children find it informative as well)that covers a focus topic each issue but...
  10. L

    AquaDEK

    It helps to "sandwich" them. That is, eat half your meal, take the AquAdek, then eat the rest of your meal. I had all kinds of problems until I tried this technique. Good luck!
  11. L

    AquaDEK

    It helps to "sandwich" them. That is, eat half your meal, take the AquAdek, then eat the rest of your meal. I had all kinds of problems until I tried this technique. Good luck!
  12. L

    Interviews for book about chronic disease

    Just for your information: There are those of us in our 60s, 70s and even an 80 year old gentleman out here!
  13. L

    Interviews for book about chronic disease

    Just for your information: There are those of us in our 60s, 70s and even an 80 year old gentleman out here!
  14. L

    8 yr old son with missing vas deferens

    CBAVD is caused by the 5T variant on the CFTR. I was the first person diagnosed with CF to have a homozygous 5T variant. That was back in 1995. Since that time, most (but not necessarily all) males with CBAVD have been diagnosed with mild cases of CF, even if CBAVD is the only symptom. Also...
  15. L

    8 yr old son with missing vas deferens

    CBAVD is caused by the 5T variant on the CFTR. I was the first person diagnosed with CF to have a homozygous 5T variant. That was back in 1995. Since that time, most (but not necessarily all) males with CBAVD have been diagnosed with mild cases of CF, even if CBAVD is the only symptom. Also...
  16. L

    IV Port on Arm vs. Chest?

    I had mine placed in my upper left arm, just above the elbow and on the inside - barely noticeable, especially since it was a child-size one. Being on the inside of my arm, there was less chance that it would be bumped. When accessed, I just wore long sleeves and nobody was aware. I chose to...
  17. L

    IV Port on Arm vs. Chest?

    I had mine placed in my upper left arm, just above the elbow and on the inside - barely noticeable, especially since it was a child-size one. Being on the inside of my arm, there was less chance that it would be bumped. When accessed, I just wore long sleeves and nobody was aware. I chose to...
  18. L

    IV Port on Arm vs. Chest?

    I had mine placed in my upper left arm, just above the elbow and on the inside - barely noticeable, especially since it was a child-size one. Being on the inside of my arm, there was less chance that it would be bumped. When accessed, I just wore long sleeves and nobody was aware. I chose to...
  19. L

    CFers over 40

    Hi.  I'm 63 (64 in Dec.), diagnosed at age 47.  I'm the first person diagnosed with CF with the 5T variant.  A paper was published in a medical journal about me and my case was presented at the NACFC way back when.  I retired 11 years ago due to needing IV antibiotics about every 12 weeks...
  20. L

    CFers over 40

    Hi. I'm 63 (64 in Dec.), diagnosed at age 47. I'm the first person diagnosed with CF with the 5T variant. A paper was published in a medical journal about me and my case was presented at the NACFC way back when. I retired 11 years ago due to needing IV antibiotics about every 12 weeks. Since...
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