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  1. Poll: Just an FYI, there is something called non-CF...

    Just an FYI, there is something called non-CF bronchiecetaisis (sp).You could have many symptoms similar to CF and not have CF. Regarding those who think their father had similar symptoms....98% of...
  2. I know 2 people who had liver transplants. One a...

    I know 2 people who had liver transplants. One a few years before she gotlungs, the other got her liver as a teen and now is undergoing a work up for lung transplant. It must be not necessary to get...
  3. Iron deficiency is not uncommon in CF. Anemia of...

    Iron deficiency is not uncommon in CF. Anemia of chronic disease (anemia of chronic inflammation) may limit how well your anemia will resolve with iron therapy(you can remain anemic due to chronic...
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    Nope, nope, Nope. this is the scoop. I have a...

    Nope, nope, Nope. this is the scoop. I have a hand out from the clinic we go to that is from the foundation called "suggested order of therapies for daily care"

    here you go:
    broncodilator...
  5. Thread: My Alex

    by Lynnfield mom
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    I am so sorry

    Heather, I cannot imagine your grief. I am so sorry for your loss.

    About Alex's meds...the only thing that needs really special attention is any controlled substance like certain pain meds or...
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    Printer - Thank you for your personal reply. I do...

    Printer - Thank you for your personal reply. I do not follow you specifically although, I notice you do reply to quite a few posts. Your willingness to help and provide insight is very nice, very...
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    I confess to being a nurse but not a CF nurse. I...

    I confess to being a nurse but not a CF nurse. I like to think of myself as well educated and willing to stay up to date.

    yes, the colon produces mucus -
    CF docs are concerned about people...
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    No problem. They have a FB group - it is a...

    No problem. They have a FB group - it is a closed group so that the "conversations" are private, the FB page is Adult Cystic Fibrosis Program at Massachusetts General Hospital. You can ask to join...
  9. it is possible to have bronchiectasis and not...

    it is possible to have bronchiectasis and not have CF https://en.wikipedia.org/wiki/Bronchiectasis

    Since your sweat tests were so low, it is unlikely (but not impossible) that you have CF. to...
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    CF affects all epithelial cells, including those...

    CF affects all epithelial cells, including those that line the genitourinary tract which is where the urethra is (not the gastrointestinal tract). Similar to what happens in the lung, the...
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    Dr. Sicilian has cut back but he no longer has to...

    Dr. Sicilian has cut back but he no longer has to take a turn doing consults and covering things like the Fellows clinic or the MICU so he actually has more time slots available. The NP retired a...
  12. Hi Jenn, There are almost 1500 mutations...

    Hi Jenn, There are almost 1500 mutations identified that cause CF. The test used for your child only tested for the most common 32. Because of your child's symptoms and findings (Pseudomonas) you...
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    Grrr to the GI doc - he needs to think outside the box...

    Hi, I would pose this to the GI doc: A concentration in the formula (like 25 - 50%) will not cause dehydration if you make sure you are providing adequate free water from flushes and orally. There...
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    A few thoughts....

    Hi, this is my third go at reply....lost my first and second - I am a newbie here. Let me add my sympathy, I "hear" your frustration. You are smart to ask for ideas/help.

    A couple of things:...
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