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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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    What baby bottle sterilizer do you use or nebs?

    What baby bottle sterilizer do you use for neb cups? Anyone use the Wabi baby or Baby Brezza sterilize and dry in one? How big is the Wabi baby? Does the Baby Brezza get hot enough?
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    Portable BiPaP machine

    I was told by a pulminologist I needed CPAP based on a sleep study before my CF diagnosis. Now I am seeing a sleep medicine pulminologist in Sep that is associated with my CF center. How common is it to need cpap or bipap with decent lung function? Do you snore when you breathe out? What is...
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    car travel US to canada with prescription meds

    Has anyone traveled to Canada driving from the US? Do they check prescription medicine to see if it is in prescription bottles or is a weekly pill case OK.
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    Does CF affect tears?

    So does CF affect your tears. If I cry in a sad movie, then the next day my eye lids are swollen and I have hard crust on my eye lashes. Sometimes my eyes burn a little if I cry. Anyone else have this and is there anything to do about it? It is embarrassing.
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    Cardio-pulmonary testing -bike or treadmill?

    My 14 year old had cardio-pulmonary testing and I have questions from anyone who experienced this. Did your testing occur on a bike or treadmill? Do you know why one is chosen ever the other? Did your PFTs change between before and after? My daughter coughed lots of mucus into the breathing...
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    Azythromycin 1/2 dose 7 days or full dose Mon,Wed,Fri

    Has anyone tried Azythromycin 7 days a week at half dose verses full dose Mon, Wed, Fri. My doctor OKed either way, but I was wondering if anyone had tried both. I am most tired on Sunday and I'm hoping 7 days may help. I have fealt better on the Mon, Wed, Fri then without Azythromycin.
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    Blood streaked mucus and chest pain

    My daughter 14, treated for not officially diagnosed with CF, coughed up blood streaked mucus before she vested with her hypersal. It looks like 4 distinct mucus balls that are orange in color. She cultured staph not mrsa most recently. It started with chest pain and a brief coughing fit...
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    Night oxygen or CPAP

    Does anyone have sleep apnea? Before I was diagnosed with CF I was told by a pulmonologist based on a sleep study that I had sleep apnea. I was given CPAP machine because I had many low desats. i could not sleep with the CPAP machine at all. Would night oxygen help? My CF doctor said I...
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    Rights at work regarding cigarette smoke exposure

    With my job I go to people's houses to work with small children. I recently started in a home where they definitely smoke inside. I also smelled pot on one visit from another apartment, not the home I was in. I am going to ask my boss to be reassigned to a different home. Does anyone...
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    Exercise while vesting and or nebulizer treatments

    I want to be more active. Does anyone exercise while vesting and/or nebulizer treatments? If so, what exercise? What are the logistics? What about an exercise ball?
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    maybe hyperventalating while running

    My daughter is treated for CF, although not diagnosed. I'm diagnosed with CF. Her lung function prior to CF treatment was FEV1 50% a year later she hit 100% and since she ranges in the 90s. She was running in marching hand this week and had an odd issue with breathing. She did her nebulizer...
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    105 additional genetic markers that cause CF pinpointed

    http://medicalxpress.com/news/2013-08-additional-genetic-errors-cystic-fibrosis.html Can someone help explain what this article means? Does this mean that of the 1900 mutations known in the CFTR gene before only 22 were thought to be disease causing and now 127 are thought to be disease...
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    PEP devices - Acapella Duet - sterilizing them

    Has anyone tried the Acapella Duet? I am looking for a PEP device for when I travel. I have used the Acapella choice, but thought the Acapella Duet seemed like a better option. The Duet has a port for the nebulizer cup to be attached. Any other recommendations for a PEP device for travel...
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    Sterilizing pari mask

    My doctor recommended that i try to use a mask with my hypersal to see if my sinuses improve. How do you sterilize the neb mask? I wash my nebs in hot soapy water and rinse them, then I sterilize in a baby bottle sterilizer and dry them. Do you have a separate mask for each neb cup? How do...
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    Pain in throat\neck with deep breath right side only?

    I have pain in my throat and neck pain, but only on the right side. It hurts very little when I swallow, but hurts a lot when I cough. It hurts a lot with a deep breathe. Hypertonic saline does not hurt at all. This is affecting my mucus clearance. It feels different then strep throat...
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    Allergies with low IGE

    My scratch are positive for a large number of allergies, but my bloodwork shows my IGE level is very low. My daughter has the same allergy and blood test results. My sinus CT scan shows lots of mucus from allergies too. So does anyone else have this? I have been reading about non-iGE...
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    Travel and sinus rinses

    I travel frequently and have a good system for my vest, neb meds etc. What I struggle with is how to travel and do sinus rinses. I use the neilmed sinus rinse bottle hypertonic saline and I put an antibiotic in the sinus rinse, so I really shouldn't miss a day. I know you are supposed to...
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