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    Oldest Person With CF

    I had CF clinic yesterday and my doctor has a patient who is 85 with a positive sweat test of 65. He has had lung and sinus involvement his entire life and recently became PI.
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    Anyone started IV antibiotics instead of orals for their first ever infection?

    I am glad you are home and she is doing better. Was her culture tested for sensitivities? Sometimes IVs are the only option if a culture is resistent to the antibiotics available in oral form. Sometimes sensitivity lab testing shows orals should work and they don't and then IVs are needed...
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    So confused....no diagnosis...stop looking?

    I have CF with two mutataions. My daughter CF carrier has worse lungs then me. My daughter has been in limbo for a diagnosis for all 16 of her years. How are your child's lung function test (PFTs)? If the FEv1 is decreasing Inwould continue looking for a name and treatment plan? Definitely...
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    CRMS and Culture results

    I am am so glad you switched clinics. As far as the culture and the symptoms coming up later that is exactly why the cultures are needed. My lungs are colonized with PA bacteria, but it does not always cause symptoms. What happens is if I catch a cold virus, then my body cannot fight both the...
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    Negative sweat test but lots of mucus

    PCD testing I have two mutations and an Intermediate sweat test and I am diagnosed and treated for CF. Has your child been tested for PCD, Primary Ciliary Dyskinesia?
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    Advice please-girlfriend with CF

    I have CF and I have been married to my husband for nearly 17 years. We have a 15 year old and a 13 year old daughters. They are CF carriers, but one has all the CF symptoms and my severe mutation while my other daughter has my less severe mutataion and no symptoms. Get to know this girl. Be...
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    crazy sugars and a little frightened

    are you seen at a Cff accredited CF center? In the US OGTT two hour is supposed to be done yearly. I have a normal A1C and test positive for CFRD on the 2 hour OGTT this year. 2 years ago I was borderline on OGTT which gave me an insulin resistence diagnosis and a home glucose monitor. With...
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    new jersey cf care

    I live in New Jersey near exit 5 of the turnpike and my daughter goes to CHOP and I go to Unniversity of Pennsylvania. Smoke CHOP doctors are good and some are aweful. I love the whole Penn team for me.
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    CRMS baby and sweat test results

    Was the sweat test done at an accredited cf center on www.cff.org. If not it is likely the sweat test is not accurate. 2 CF causing mutations means CF.
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    How do you like your Vest?

    My 15 year old loves her vest but goes through sizes every couple months as her chest is growing. I began to take the vest to Pulmonary appointments to help get the straps adjusted, but she is now a D cup and needs adjusting again. My daughter finds no bra more comfortable. We also had a...
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    Fecal elastase test vs pancreatic stimulation ???

    My daughter has has both fecal elastase and pancreatic stimulation. My understanding is that if done correctly pancreatic stim is more accurate, but it is rarely done and so often not done correctly. Did your child improve with enzymes?
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    Aquagenetic wrinkling that doesn't go away?

    This happens to my daughter and I.
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    Anyone approved for Kalydeco for a 5T variant

    I have a stop codon on one gene and a 5T variant on the other gene. The second gene has polymorphisms but no known disease causing mutation. My doctor is working on the insurance approval now. I have had a 6 month lung function decline, diagnosed with CFRD last week, and culture PA. Any tips...
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    Trio verses erapid are they interchangeable

    I have a trio for Tobi but I am told it is rented and can only be used for Tobi. Anyone have a Trio and Erapid know if the medication cups can both be used with the Trio base and Trio connector chord. I would like to buy a couple erapid medication cups and not buy the ebase if they are the...
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    Trio verses erapid are they interchangeable

    I have a trio for Tobi but I am told it is rented and can only be used for Tobi. Anyone have a Trio and Erapid know if the medication cups can both be used with the Trio base and Trio connector chord. I would like to buy a couple erapid medication cups and not buy the ebase if they are the...
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    eRapid?

    I have a trio which is a eflow just for a certain formulation of Tobi, so maybe ask for a prescription. I get the trio free with the script for tobi. I saw an add today tha pulmozyme is now FDA approved for use in the erapid.
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    The Other Half of the Battle

    I find all of this concerning. I only have health insurance because I get it through my husband's job. I have been discriminated against because of my CF. I currently work for a very small company on a per visit basis and they have a fired at will clause which means they do not have to give a...
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    What do you Centers do for transition of care?

    10 is too young as neither the insurance company nor the pharmacy will talk to a 10 year Old. I understand your concern and see my other response with more details. At my adult CF clinic there are adults whose parents have never missed a clinic appointment and answer every question, handle...
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    What do you Centers do for transition of care?

    When my daughter turned 14 we were given a checklist of things to transition to her over the next 4 years, so by age 18. The first big item was she goes into the PFTs herself. By 14 she was doing everything on the list except ordering her refills for prescriptions and ensuring the filter in her...
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    DNA results

    My 15 year old has been in limbo for a diagnosis her entire life. She has Alpha 1 antitripsin deficiency but I am told it does not affect the lungs until adulthood. She is genetically a CF carrier. She is negative for Primary Ciliary Dyskinesia. A CF doctor works with kids who are dying and...
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