I know I have quite a bit of info under this category, so I wanted to sum it up for everyone here in case you don't have time at the moment to read my blabbing.
- The eFlow/ Trio was approved for use in the United States in 2004. The FDA says that the eFlow is approved "with patients for whom doctors have prescribed medication for nebulization. The Trio™ is intended for adult and pediatric patients."
2. Thousands of Cystic Fibrosis physicians from around the world have prescribed the eFLow to their patients. In Europe, the eFLow is given to Pulmozyme patients for free to use with this medication.
3. In the United States, the eFlow is distributed through SourceCF, a division of PARI. There are 3 pharmacies in the US who distribute under SourceCF, and the pharmacy you should use will depend on where you live. You can call Source CF and they'll tell you which pharmacy to contact. 1-888-335-6946 http://www.sourcecf.com/eflow.htm#get . Through this network, as long as you order your neb antibiotics through them, you get the eFlow FOR FREE. So if you order tobramycin, colistin, etc through them, the eFlow is free. Jackpot. And they will send you replacement "heads/membranes" for free every 3 months.
4. As you'll see from pictures below, the eFlow has plastic parts just like your traditional nebulizers. They can be washed & sterilized in the same way. The only difference with the eFlow is the metal "head" or "membrane."
5. After each medication treatment, rinse the "head" or "membrane" with distilled water (better than tap water because it doesn't have the minerals, etc. to clog the tiny, laser drilled holes). Soak the head in between treatments in alcohol to keep the laser drilled holes open (and to sanitize the head). Boil the head once a week for 10 minutes.
6. That's the only difference in care for the eFLow vs. the traditional compressors/nebulizers. People complain of the eFlow being a pain to clean - I have no idea why. Rinsing in distilled water for 1-2 minutes is pretty simple in my mind.
7. If your eFlow treatments start to slow down, invest in a ultrasonic jewelry cleaner (Foundation Care gave me one for free). http://www.walmart.com/catalog/product.do?product_id=2416364
Leave the head/membrane in the cleaner overnight with distilled water and you should notice improved performance.
8. The eFlow is great because you can use it internationally. I've brought mine to Europe and Asia and because it's battery operated, it always works. For those of you who have been to Europe and Asia with your PARI ProNeb Ultra or other compressor, you konw, you need to get a compressor for that specific continent in order to get the full benefit of your treaetments. What a pain!
9. I think I have posted studies below (look for them), but there have been several studies demonstrating why pulmozyme, tobi and albuterol work in the eFLow.
Thank you for that! Just what I needed,,,
ReplyDeleteRonnie
Hi NoExcuses,
ReplyDeleteI just saw all of your posts on the CF Forum.
Would you be able to help me spread the word about my son's website: healthcareforgunner.com?
I would love to hear what you think about it and find out if you have any information you think I should add.
For Life,
Kristan Hawkins
gunnerjhawkins@gmail.com
Someone recommended your site to me on cff.org when I posted a question about travel. Thank you so much for this, your site has been 1,000 times more helpful on my neb problems than my doctors. I used my compressor with neb in Japan--it took FOREVER. Now I am leaving for Paris in two days and all I have is my useless Pari Trek. I guess I shouldn't even bother bringing Pulmozyme along? I even asked about this problem... why is no one armed with the kind of information I just read here?!?! Seriously I wish I would read this two weeks ago when I still had time to get the right equipment for travel.
ReplyDeleteSo, would you still recommend the eflow? I'm in the market for a new compressor. Should I just get the eflow or that and a traditional compressor? Is there one that you recommend?
Your blog has opened my eyes to the fact that I cannot be passive and leave the decisions up to the doctors. THANKS please feel free to email justgotspaid@yahoo.com