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  1. R

    Inhaled Vanco vs Zyvox

    Interested if anyone does inhaled Vanco and how that goes for them? It was brought up at an appointment last visit. Zyvox is the antibiotic of choice we use for exacerbation but this was brought up as an option to try. Might be nice to avoid the systemic nature of oral zyvox. Is Vanco inhaled...
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    Cleaning neb on college dorm?

    Wondering how you all handled neb sterilization in college dorms? Currently we use a pressure cooker to boil nebs at home. When we travel we use a microwave with those steam bags. Also use disposable nebs if lazy. My daughter actallu brought it up, wondering how she would clean her nebs in...
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    Painting and CF ( artistic CF input):)

    Wondering about recommendations for paints that will not irritate CF lung? My daughter has a strong artistic streak(very therapeutic and relaxing for her ) She was asking for high quality acrylic paints to try painting on an easel. My sister went to art school many moons ago and said it could...
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    Mobilaire 50 PSI compressor

    Any recommendations for a new Mobilaire 50 PSI compressor. We have had ours for over 3 years and the pressure gauge is not acting right, nebs taking longer. This is the first time this has happened. Suggestions for replacement compressor?
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    2 hour glucose tolerance test question

    My daughter had one today(she has had it before). She is 15. My question is they gave her 100 grams of dextrose to drink. She chugged it. After I questioned the nurse , when she had it in the past they gave her 75gram. Of course her 2 hour # came back high at 194..But Looking the test up; it...
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    Another Attempt at Health care Bill does not protect CF Pateints

    https://www.cff.org/About-Us/Media-Center/Press-Releases/Sixteen-Patient-and-Provider-Groups-Oppose-Graham-Cassidy-Bill/?linkId=42392696
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    Proud moment (off topic)

    My daughter is 14 with CF. My husband and I went away for 3 nights and 4 days, just the two of us. We left our older adult child "in Charge" No other adults. My daughter with CF managed ALL of her CF care while we were gone. From enzymes to pills to miralax to VESTING. We bought a WABI...
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    Relevant for the times of health care

    http://www.npr.org/sections/health-shots/2017/06/21/532601431/survivors-of-childhood-diseases-struggle-to-find-care-as-adults
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    Recommendations for a better travel compressor

    We have a Pari Vios for travel. It is just a terrible compressor for all my daughter's treatments. On a daily basis she does 8 nebs a day and we usually use the mobilaire at home(just not practical to bring for travel). It is stressful to not have a good compressor for travel; what do you all...
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    How do you clean an Aerobika?

    Could you put it in a WABI? Can you sterilize it?
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    Pre-existing conditions( Changes to health care bill)

    http://www.npr.org/sections/health-shots/2017/03/23/521220359/gop-health-bill-changes-could-kill-protections-for-people-with-preexisting-condi
  12. R

    Privacy and genetics and discrimination

    https://www.statnews.com/2017/03/10/workplace-wellness-genetic-testing/
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    Health Care Changes(what is important to you)

    Looking for input from others with CF about what would be important issues about the changes that will take place this year in the health care market. For our family I am most concerned about making sure person with pre existing conditions do not get dropped from the health insurance or...
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    Culturelle/fish oil sale amazon

    FYI, Saw on amazon that Culturelle for kids and other supplements like fish oil were on sale today (Jan 10) We use VSL #3 for a probiotic but for those on culturelle it's a good deal. I usually try to stock up when things are on sale. It's under their daily deals.
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    High Calorie weight gain snack

    Always looking for healthy and not so healthy snacks to boost calories. Daughter is not big into sweets and lately prefers plain raw veggies for snacks(while healthy does not provide any significant calories). Found a new healthy snack; dried chick peas(come in different salty flavors) They...
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    Aerobika

    Anyone use it and notice any difference? Thought about buying one for my daughter.
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    Article about Mycobacterium and CF

    https://www.statnews.com/2016/11/10/cystic-fibrosis-dangerous-bacteria/
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    Need ENT Recommendation for Adult(Boston,MA or Portland ME)

    My husband (no CF) needs to see an ENT and I trust this community for providing feedback on docs. The recommended doc can not see my husband for 4-6 wks and we do not want to wait. Husband has been losing his hearing and is relatively young and the doc want to rule out anything structural or...
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    CF school supplies

    As my daughter gets older and is independent in her care; her backpack has a pocket full of CF health items. Albuterol inhaler, cough drops, Flutter valve.sometimes small thing of tums. Lunch box carries enzymes, sodium bicarb and salt packets, G2 and bottled water. Once cold flu season...
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    Singing and lung disease

    http://paidpost.nytimes.com/philips/living-health/a-new-breath-of-life.html?utm_source=New%20York%20Times&utm_medium=banner&utm_campaign=1_globalus_en_bc_nyt_nasm___nytres_nytpp_ba?module=PaidPostDriver&region=PaidPostMOTH&pgType=Homepage&action=click
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