Recent content by ccsalema

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    Orkambi and M Abscessus

    Was anybody out there on the trial who had m. abscessus? Did it help move it out? Ideas?
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    124del23bp aka c.-9_14del23 anybody out there?

    Does anybody have this rare mutation?
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    Ideas for new cf product development?

    Quiet vest exists and it's crazy after the noise you are accustomed to... visit www.afflovest.com
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    Still looking for others with 124del23bp

    Anybody else out there? Seems to be an Azorian mutation from my husband's side...also goes by the nomenclature c.-9_14del23
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    Persistent MRSA

    Any other people had success squashing MRSA back into complacency? Do tell...thank you!
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    Persistent MRSA

    Allrighty CF experts, a question for you: DS has CF. He cultured MRSA when he was 6. He is now 15. It was not bothersome for the first 6 years. It seems to have upped its game over the past 3 years or so. He was inpatiented last year to knock it back (iv vanco & meropenum). He was inpatiented...
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    just over a year wait but on July 23 it finally happed I got lungs

    That is awesome, congratulations!
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    Kalydeco + D579G

    Terrible that you are having to educate your medical team, isn't it? Advocate, advocate, advocate! Well done!
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    New eRapid - LOVE IT

    White Paper Link attempt #2...
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    New eRapid - LOVE IT

    This is the white paper that talks about the specific differences between devices and the reason why Pari went ahead and created the eRapid. http://eRapid-White-Paper-JAN2013.pdf
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    DNA Guilds Introduction

    Hi! You forgot my son's really rare one: 124del23bp or, with non-legacy name, c.-9_14del23 Thanks, Christie
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    Ibuprofen tto treat inflamation

    Our doc put our then 10 year old on high-dose ibu for a year or so for polyps. Sadly, 10 year olds don't give good feedback about how they feel...we stopped it after a while b/c he is highly active in sports and worried that he could get hurt by big impacts. I believe it is used by some Pulms...
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    DeltaF508 and R117H

    There are many knowledgeable people on this forum...hope they get back to you. So, to clarify, you have CF? They are studying a great new drug on your R117H mutation--but it sounds like you wouldn't qualify b/c you are so unaffected by disease...good lucky finding your answers.
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    Kalydeco and Class IV Mutations

    Any Maine R117Hers out there...Mass General is looking for participants for their Kalydeco trial for this mutation. Here is the link for trial information. Please get in touch with Mass General CF staff (617-726-8707) if you meet the criteria. Here is the link...
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    Back to school meetings

    Oh, wow, I love our annual school meeting. We do a lot of fundraising for the CFF and oftentimes make movies to chronicle our sons summer or sinus surgery or what have you. They're graphic usually and explain what he does on a daily basis and show things that people never see--pre-PICC...
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