Cystic Fibrosis Support Group

Cystic fibrosis, (CF) is a common hereditary human disease which affects many different parts of the body, including the lungs, pancreas, gastrointestinal tract, reproductive organs, and sinuses. This support group is dedicated to those coping with cystic fibrosis. Find support, meet others who face the same challenges, ask questions, and share your experience.

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Nebulizer Treatments!

Megan4
Megan4
I have a huge frustrating issue! My Neb treatments take FOREVER to do! When I'm in the hospital they take 5, maybe 10 mins each! At home they can take to like 20 to 30 mins each! It's so hard to get them into my schedule as it is, let alone for them to take that long! I've had this problem many years and the docs they order me new machines and diffrent types of machines, like the E-Flow, but nothing seems to work! I have to do something because this just isn't working! I spend an easy hour to hour and a half on one treatment session alone! I'm turning 19 and with school and everything, college coming soon, I can't efford that! Any suggestions! Any one else with this similar problem? I'm open for anything, I'm despreate!
deleted_user
deleted_user
How old is your Machine ?

when they start to ware out they pump slower and the mist is weaker and nebs take for ever. You can get a new one every 3 or 4 years on medicade, or you can find good deals on line. I just got a new Pari Pro Neb Ultra II for 56.00 and it came with 2 Pari LC plus reusable Nebs.
Not a bad deal, I was paying 16.00 each for the same nebs.
i hope that helps..
Megan4
Megan4
I just got another machine, so its very new! But it's still taking forever!
deleted_user
deleted_user
I know a couple of people who have the E-Flow, its a little pricey and as I understand it only holds 3 ml. and is hard to clean. But they are said to sut treatments times way down. I have the Pari Pro Neb its ok and I have De vilbus 5052 < I think that the model, it has a flat front about 10 inch tall, works,but not very mobil. I also have a Mabis Mist II
Sonic mist neb< its small and rechargeable. works fast . I neb 2.5 ml Albut and 2.5 ml Atrovent 4 times a day.
deleted_user
deleted_user
I use to feel the exact same way. 1-2 hrs of nebs 2 or more times a day is a major pain in the butt. For me the E-Flow was a great things. Cut each of my nebs down to 5 min. If you don't clean is right away it will slow down and work crappy.
deleted_user
deleted_user
oinkoinkamanie

How did you go about getting your E flow?

I have heard they are hard to get and you must buy meds from the e flow company.
deleted_user
deleted_user
why does it take sooo long? thats really weird, haha. Yeah you prob. have a dinosaur machine or some shit! haha
deleted_user
deleted_user
My doctors told me about the E-Flow and filed the paperwork and stuff. The only med I have to get through them is Tobi because it has to be a lower dose than what you get at your normal pharmacy or you can get too much of it in your system.
deleted_user
deleted_user
There is also a small hand held nebulizer called an i-neb. It's much quicker to get the nebs done, but I found it's quite tricky getting the technique right to use it effecively. Someone came over to my house and spent most of an afternoon going through the correct procedure. It was worth it as it became a lot quicker and my health improved. There needs to be much more focus on the cleaning of the equipment than with a more traditional nebulizer. Now I find it a pain, and use my old one much more. I'm on it now. I find if I'm busy on the computer the time is no longer an issue. Is there anyway you could maybe do homework or whatever whilst doing them?
deleted_user
deleted_user
have you shared this complaint with your Dr. mike used to have the same complaint and his Dr. put him on an albuterol puffer and a Q var puffer he just puff's and holds it in for 10 sec. each and then he is done. he still has other treatments that he can not puff but it took off like 15 min to 20 min. and for mike every minute counts also I have found when he shares his complaints to his cf. Dr. about thing's like this they can somtimes be very help full and quite creative. good luck and I hope this helps. PS. thanks for the insurance info it helped alot, we are looking into medicade
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