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    Has anyone heard from Jfarel ?

    I havent seen him around for a while.... Has anyone heard from him? Jfarel are you out there? Is everything ok?
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    For those on Oxygen

    I am curious about a few things concerning using O2. I have been off and on it for almost a year now. This year i have been on it way more after having 3 embolizations in such a short amount of time. I always wear it to sleep, and some days i use it during the day. There are times when i use it...
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    Interesting tidbits that are going on with me

    Heres some interesting tidbits about what has been going on with me lately. I decided to go back on iv's 2 weeks ago ( peripherally) i wasnt feeling particularly sick or anytjhing but i was running some low grade fevers 99.3 - 100.) every day twice a day and thought iv's might help with it. On...
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    Other uses for the vest

    Has anyone ever used their vest for anything other than what it is prescribed for? I have and it works great for muscle pains in the legs. I have done this many times in the past and last night i was wondering if anyopne else has used the vest for anything other than for clearance? I would wrap...
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    Tussin / Guaifenesin

    I have been unable to do Pulmozyme HTS Tobi or anything inhaled since January. I am doing Advair and Albuterol though as these are the least likely to cause any irritation that can lead to hemop. The reason i am not doing these is becaues i had 3 embolizations , 1 in January, 2 in Februray after...
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    Links, Links, I need Links

    Since my last 3 hospitalizations and with my fungus ball having grown, i will not be able to take GSH anymore for a while. I am thinking of starting NAC under the assumption it wont contain yeast and mess with my fungus ball like GSH does. Can everyone thats on it give me a link to which one you...
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    cautiously optimistic

    At my Dr.s appt 2 weeks aho my Dr. informed me that cepacia has not shown up in my sputum cultures since around Dec. There is something new showing up but i can not remember what it was, let alone even pronounce it, but he said it is in the cepacia family, but isnt as bad like cepacia. Well...
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    Not exactly back , but sort of

    FIrst i want to thank everyone for your prayers and well wishes. This has been very hard on me and i am ever so slowly recovering. I am still on oxygen ( was hoping to be off by now) and i am finally getting a little more comfortable going out in public with it. I just keep reminding myself once...
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    Here we go again

    Well i went to my Dr.'s yesterday ( was supposed to go today, be he didnt want to wait) I called my Nurse on Monday and told her what was going on with my having hemoptysis since i started using the AZLI. 3 Days after i strated using it, i had hemoptysis and streaks for the rest of the day...
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    Question for those on the AZLI study

    After the inhaled Aztreonam didnt come out on the market as planned my Dr. encouraged me to get back on the AZLI study. I quit the study months before due to the mist being <b>so</b> dense thru the eflow that i had a hard time inhaling it at all. I got back on it the 26th of Dec. and on the 29th...
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    Questin for those who use Albuterol in an inhaler

    I am just curious about something. The protocol is you do 2 puffs every 6- 8 hours or however often. Many times i have done one puff and got so busy online and totally forgot if i did the second puff or not. Has anyone ever done three ? I cant imagine it would do any harm, and if i am correct i...
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    Good news about Glutathione

    <b>Improvement in clinical markers in CF patients using a reduced glutathione regimen: An uncontrolled, observational study ----------------------------------------------------------- CFTR mutation, which causes cystic fibrosis (CF), has also recently been identified as causing glutathione...
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    Went to the Dr. today and this is what he said

    I went to my cf clinic today for my follow up visit. My fev1 was up 1 number i was sort of disappointed, but i figure one number up is better than one down. My fvc was up 2 points. My weight is up a pound and a half. This is all good. About the sed rate level, my Dr. mentioned several...
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    Has anyone done Tobi only once a day ?

    I am very curious to see if anyone has ever done tobi once a day instead of twice? I notice if i only do it once per day rather than the recommended twice a day dosage, i get way less shortness of breath associated with Tobi. My last Dr. didnt have a problem with it and said doing it once a day...
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    Space heaters

    Does anyone here use space heaters along with their regular heating? My mom recently purchased one of those "surge heaters" that are being advertised everywhere. The one where it looks like and simulates a fireplace. They say the heater itself is free and you basically pay for the mantle that...
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    Bummed vs. Happy, havent decided yet

    I decided to go back on iv's today. I had been running low grade fevers for a few weeks which isnt too uncommon for me with cepacia. Thank God they arent high. But i went to work today and realized quickly i was way too short of breath to do what i normally do so i made the decision right then...
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    Anyone heard from Kybert?

    I havent seen a post from her lately, anyone know how she is doing? Kybert you out there?
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    ? Info on Zinc ?

    I just purchased some Zinc yesterday. I know a lot of people with cf take it, but what i dont know is....... Do you take it daily, if so how much ? Do you up the dosage when you get sick ? Do you take it with your morning meds ? I am just curious what dosage everyone else uses . Also i am...
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    Why Aztreonam was turned down by the FDA

    Heard it through the grapevine that the reason it was turned down was because the FDA had an <b>opthamologist</b> review Gilead's material and clinical research. Because he was not well versed in cf and the nature of clinical improvements as far as cf goes, he did not see that even a few...
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    New pet food recall warning

    I just got this in an email today . With cf we can never be too careful.... <b>Warning: New Pet Foods Recalled The ASPCA is advising pet parents to discontinue the use of certain dog and cat foods manufactured by Mars Petcare US. On September 12, the company issued a nationwide recall of...