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  1. Replies
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    I have 2. I wanted 4. My dr convinced me to stop...

    I have 2. I wanted 4. My dr convinced me to stop at 2 on the basis that for every additional child, I would be exposed to exponentially that many more germs and illnesses. While I have "milder" CF...
  2. My 1st hospitalization was at age 31 -- due to an...

    My 1st hospitalization was at age 31 -- due to an episode of Hemoptysis (coughing up blood.) Back then adults were still treated at Boston Children's Hospital. My roommate was a 4 year old with...
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    Thanks for the info. I found a pharmacy near me...

    Thanks for the info. I found a pharmacy near me and got the Quad shot. Had never heard of it before your post.
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    Also...have two sons and began getting worried...

    Also...have two sons and began getting worried they have CF. Took them for a sweat test and my younger son didn't sweat enough. We waited 6 months and did it again. Neither son has CF, but both are...
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    I don't have any digestive issues and am almost...

    I don't have any digestive issues and am almost constantly working to lose weight, and I do have CF. Thus, not having digestive issues or being a higher weight percentile shouldn't be the deciding...
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    I get seen at Children's Hospital in Boston,...

    I get seen at Children's Hospital in Boston, Massachusetts. I was diagnosed through a genetic test with only a cheek swab...later followed-up by further testing with a blood sample.

    I definitely...
  7. I'm an adult patient at Boston Children's. I get...

    I'm an adult patient at Boston Children's. I get a copy every time. I love being able to compare my numbers -- the printout includes historical numbers going back several years and a graph showing...
  8. Replies
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    You definitely can be diagnosed at an older age....

    You definitely can be diagnosed at an older age. I was officially diagnosed at 31...and a person diagnosed at my CF clinic recently was 73!
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    I'm 44 and have a sister with CF who is just shy...

    I'm 44 and have a sister with CF who is just shy of 40. While neither of us has full-blown CF (we're both pancreatic sufficient) her symptoms have always been worse than mine and her pft's usually...
  10. I thought I was having pancreatic issues (and so...

    I thought I was having pancreatic issues (and so did the drs) with everything coming out liquid. Turns out it was a hernia and (surprisingly) dehydration. Hope it's as simple for your son.
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    My sister just experienced a big drop in her pft...

    My sister just experienced a big drop in her pft #'s. 2 weeks of IV antibiotics did nothing to move her numbers. The dr then started her on an asthma treatment plan and her numbers a month later are...
  12. I take it every day and have for approx. 9 years...

    I take it every day and have for approx. 9 years now. I remember better doing it every day.
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    If you have a smartphone, download the app "CF...

    If you have a smartphone, download the app "CF GeneE" which was created by Vertex Pharmaceuticals.

    It does not have all existing mutations listed (only the N1303K of yours is included in the...
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    I'm on home IVs now and my dr. said that but for...

    I'm on home IVs now and my dr. said that but for it being flu season, he'd admit me to the hospital. He and I agree that while I don't get a ton of rest in the hospital, I do not do as much and do...
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    Sorry to hear your troubles. I've been on...

    Sorry to hear your troubles. I've been on Zithromax every day (250) and have not had any hemoptysis. You should talk with your doctor.
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    I do not know about TOBI pod, but my OB did...

    I do not know about TOBI pod, but my OB did research when it was recommended I take TOBI and said it could cause the possible baby hearing loss. That was back in 1998 and when TOBI was still new, so...
  17. How did you get involved with the study? I had...

    How did you get involved with the study? I had contacted them a couple of times, but never heard back.
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    It probably would be ok (ie not react with the...

    It probably would be ok (ie not react with the antibiotics). With that said though, you should check with your dr because generally you should not get a vaccination if you're under the weather. Given...
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    Poll: DEFINITELY go to a CF Center! I was...

    DEFINITELY go to a CF Center!
    I was 'borderline' CF every time and was tested 5 times. It was only after my participation in a voluntary study that I received in the mail from the CF Foundation...
  20. Thread: lung function

    by AttyMom
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    12,842

    98% as of last week. I'm 42.

    98% as of last week.
    I'm 42.
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    Western Massachusetts

    I'm in Eastern MA, but lived in Western MA for 7 years between college and law school.
  22. Replies
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    Western Massachusetts

    I'm in Eastern MA, but lived in Western MA for 7 years between college and law school.
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    National Exposure -- Advances in CF!

    <P>Great national news exposure -- a story which appeared on the CBS Evening News recently *(and my doctor, Craig Gerard,appears in the piece!):</P>
    <P><A...
  24. Replies
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    National Exposure -- Advances in CF!

    <P>Great national news exposure -- a story which appeared on the CBS Evening News recently *(and my doctor, Craig Gerard,appears in the piece!):</P>
    <P><A...
  25. Replies
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    National Exposure -- Advances in CF!

    <P>Great national news exposure -- a story which appeared on the CBS Evening News recently *(and my doctor, Craig Gerard,appears in the piece!):</P>
    <P><A...
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