Recent content by Nervous1

Hi Everybody, For those of you who nebulize colistin, have you noticed any joint or tendon pain? I neb it every other month, and I've begun to notice that 2-3 weeks into the months I'm on it I start getting pain in both my hips and shoulders. I'm wondering if it's related to the colistin. Any...

Thanks everybody. Seems the consensus so far is that I should do the testing. I agree that if it is positive, it's important for my kids and future generations to know. Whether or not it will change my treatment, I'm not sure .... and would of course depend on the mutations found. Stephen -...

Hi Everybody, I've haven't posted on this site in a long time, but I read and learn from all of you regularly. I'm a 50+ woman with bronchiectasis and chronic sinusitis. I was diagnosed 13 years ago after my 6th case of pneumonia left me with a collapsed lung and in bed for a month, and a...

http://super-bronch.blogspot.co.il/2013/11/doing-bit-better-thoughts-on-why.html

Those are all really good ideas. Greatly appreciated! Some interesting observations regarding the eFlow. When I first got it a couple of months ago I cleaned in soapy water and then rinsed the heads with distilled water (lots of mineral deposits in local tap water) and soaked in alcohol...

Hi Stephen, I'm on colistin and hypertonic saline, and I am not currently living in the US. Thus, unfortunately I pay out of pocket. :( Also, I have bronchiectasis but not CF so my insurance doesn't cover many of the treatments I would be entitled to if I had CF.

Thanks for all your ideas. So far soaking in alcohol when traveling is the only solution I've come up with also. Unfortunately I'm paying full price out of pocket for the heads (and the unit itself), and they are very expensive. I would imagine that for those of you getting new heads...

Hi Everybody, For those of you who use the PARI eFlow (or other variation's of PARI's vibrating mesh) nebulizer, how do you travel with it. It's true that it's tiny, quiet and amazingly fast. However, you have to use an electric baby bottle sterilizer on the nebulizer heads after each use to...

Understand You Completely but an additional perspective Hi Enzo, I completely understand where you're coming from and your frustration. I feel this way at times also. I have similar frustrations about the amount of investment in people with "lifestyle" dependent disease. I spend so much...

Any feedback from anyone?

Hi Everybody, I'm really sick of the noise and length of time it takes to do my treatments (I'm nebbing HTS and colistin) on the standard PARI compressor. Thus, I am considering buying an eFlow. I do not live in the US, and where I live the eFlow costs about $1,300. Does anyone know where...

I actually broke a rib once from coughing. Docs didn't believe me until they saw it on the x-ray.

You're right about the travel without a doubt. My healthiest periods are when I manage to avoid business trips. Unfortunately they are a part of my job that I can't avoid completely. :(

That's what's so great about this site. I really value the support from you and everyone else here.

Thanks everyone for sharing your experiences and thoughts. I'm sorry to hear that so many of you experience similar situations, but on the other hand it's great to be able to vent and share with all of you who sympathize and understand. What floored me about my particular example is the person...