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    disibility

    Hi khm, I am just like you, have ok lung function at %77 but bounces a lot. I started getting disability at around 80% lung function, was even little high, %85! I was running around, trying to juggle everything, and was just too hard and had to stop, I did alot of odd dead end jobs in my early...
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    need a cayston cord

    The Cayston system eflow device is made and assembled in Mexico while the drug is manufactured in Austria.. This machine is really worth $25.00 rather $860!! I try to keep mine nice as possible and in the case it came with, but even the case on the zipper became faulty!! For that price at $860...
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    Cayston Intolerance??

    Hi! Cayston is a great drug once you are on it,and this is a shame you are having these stupid reactions. If I were you, maybe you could dilute the drug alot more with sodium chloride with .09% ? It can be extremely 'cloudy' and almost like i'm inhaling fog smoke! I cough bad if I inhaled it too...
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    need a cayston cord

    You try searching ebay? $55.00 + $7.00 is alot in this economy. This is beyond cheap, but is there anyway you can try glue it or snap it back it to place the gray part? In my opinion the entire cayston system for what the charge the base $800.00! is really badly made cheap plastic system...
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    Chronic staph problems

    I thought I was the only one too til I saw 4hats and now others... can you guys tell me what your PFTS are and how much it drops it when you flare up? Mine dropped 68% in the hospital, but bounced back up to my base line. I posted a gross ( sorry:eek::eek:) educational picture.... of what s** t...
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    Zantac side effects and other H2 blockers?

    Acid reflux is really annoying I was totally throwing up in the hospital from hard coughing.,. I have not tried zantac, but I take Protonix daily. I do notice I get more burpy on the first starting does, but nothing comes up and its seems to go away once I start the meds. The burpy comes back...
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    Persistent Wheeze

    Hi Kyeev, you know I think you are right. I recently started retaking my anti acid reflux meds, only cause i stopped because i thought i no longer needed them and i also read its not good to take Proton Pump Inhibitors for an extended period, but seems like I have no choice. Long story short I...
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    Any other CF Pagans??

    Well this is interesting, I consider myself Christian, but my old ancient beliefs would be Celtic Pagan before Christianity came in 5th century ! We Irish Scots worshiped the trees and elements. I like New Age things and Wicca. And yes, I know the bible says " stay away from the sounds of peeps...
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    Persistent Wheeze

    yes i am, i take Asmenex, dont really ever notice a difference though, x2 puffs a day
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    Chronic staph problems

    Hi! I am getting the same da**m problem this year, all started in March 2014. On-off oral antibiotics for few months, I had MAC, like you went away after year of treatment, and was doing great for long while. Then started, I was getting low grade fevers and streaking and horrible GREEN GREEN, it...
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    coughing help

    Not gross at all! Do you have reflux? I have that and if I cough very hard I end up throwing up at random times. Also, if reflux is the issue that can cause coughing fits itself. I take meds for it and it stops it ( throwing up)
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    Persistent Wheeze

    Thanks for the tip cam, yes very annoying,
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    Amikacin reactions. Please share your experience

    Hi! Well since you are doing Amikacin via nebulizer you have a better chance of less side effects since its not systematic like the IV form or Injection. I am sensitive to Gentamycin too, I got a really bad rash and balance and hearing was screwed up for months. I also got some kind of...
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    Persistent Wheeze

    Any tips to clear up a pesky persistent wheeze on the right side? I just got out 2 days ago from the hospital for 2 weeks after a bad infection, I am still IVs, and don't want to come of IV til its gone, now on 3rd week. Any tips? I have tried everything, CPT, G5, huffing puffing, its really...
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    Jobs for people with CF?

    Hi there, I am in the same boat, not ever really worked and still live with my folks. I am sending you a PM. I am going to school when I can, it's online courses, which is AWESOME !
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