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I've tried Cayston with the Altera neb and it gives me a really bad reaction. I'm sticking with Colistin because I just can't breathe when I take Cayston. Haven't refilled my Cayston Rx in a long time and the CF Pharmacy has still not asked for the neb back. Maybe they never will. I'm sure...

I just got listed on Monday and suddenly thought I should meet the surgeons. Everytime I've I've had a planned surgery I have met with the doctors. For my thoracotomy, my shoulder, my knees, etc. My tx coordinator gave me the names numbers for the two surgeons so that I can make a "cold call"...

My new Avent was just delivered today. I'm wondering what is the shelf life and how should I store opened bottles of distilled water? Or is shelf life indefinite because the water reaches a boil in the sterilizer? Thanks, Barbara

I'm investigating the transtracheal catheter for 24/7 O2. Does anyone have an opinion or experience with it? I think it looks better than a nasal canula and that might get me out and about more if I feel better about the way I look. I know there is daily maintenance which you don't have with...

Edit: sorry this is my 2nd nearly identical posting. I got an error mssg and thought it went into outer space.

Hi everybody, I am about to begin all the testing to be listed. My FEV1 is about 30 to 33% and I'm generally feeling very anxious, depressed and alone. My husband is great but it is ultimately happening to me. I have a very active internal self, always living in my head which is not good. I...

I am a 5'3" 108 pound F with LF of 33% and I need to gain about 5-10 pounds. My doctor prescribed Megace as an appetite enhancer saying the other choice is anabolic steriods (Yikes!). So I picked up the script and am reading the drug description leaflet that Walgreens hands out about the drug...

Anyone have some rules to live by for a hemoptysis situation? I coughed up about 3 or 4 tablespoons of blood today and immediately took 2 vitamin K. In the past I was told by my center to stop pulmozyme and hypertonic saline, but for how long I don't remember. Should I also stop Colistin/Tobi...

This question is for any Californians who have or had GHPP and Medicare. I have Medicare Part A & Part B and am still in the process of choosing a medi-gap provider to cover the other 20% that B doesn't cover. But that still doesn't give me drug coverage. I see on GHPP's website that they...

An RT told me about the Frequencer because I don't tolerate the Vest or manual CPT very well. I have a shoulder injury, herniated disc and judging by my wavy spine, scoliosis too. I've got to say the Frequencer looks like a bunch of hooey. Anyone have any first or secondhand experience?

I am just starting on O2 and would like a system that still allows me to travel and exercise. I am looking at portable concentrators although I don't think insurance will pay, the Helios liquid oxygen systems, and regular tanks of compressed O2. The Helios system appears to look pretty good...