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Portable Nebs
- Thread starter anonymous
- Start date
I use the PARI Pro Neb Ultra and the PARI nebulizer kit. The nebulizer kit comes w/ the tubing, cup, etc necessary to do the treatment with. Mine, however is not portable, I just plug it in for "at home" use. I sometimes wish I would have gotten a portable one for the few times I travel.One thing I will tell you about albuterol is that it is a wonderful tool for opening up things so I can breath better, but it tends to make me feel "shaky" inside & usually I eat a snack afterwards & that helps w/ the shaky feeling. Of couse, that feeling does eventually go away w/o a snack, but I just wanted to warn you of this so you'll know what it is if it happens. It may not effect all people this way, maybe some others would like to add input??Good luck!
Thanks for the info! I do have a home unit, and do albuteral, pulmazyme and TOBI. Just hard to get the third treatment of albuteral in when I'm at work, and weren't sure what all the kits are for. Actually we saw it advertised on tv for some medicare commercial, and decided that was perfect for my afternoon treatment. Thanks again.
I just got a pamphlet from the doc for a portable neb that uses batteries so you don't need to plug it in. It is soooo small. It looks like the size of two decks of cards side by side. Anyway It says here that its called Peri treck Compressor System...Good luck, I hope to get one myself too!Em 19w/CF
We have the Omron comp air elite. I like it ok but would rather have an ultrasonic like the last poster is responding to. We also have a lot of problems with it's rechargeable battery. Our children are on pulmicort though and it can't be used in an ultrasonic. I have a friend who has a lumiscope and likes it. Pari Duraneb 3000 is good, too, if you want a portable one that also works as your regular neb but it's the same size as the one you have at home, just has a battery pack. If you "Just" want portability and will only be using it occasionally though, get an ultrasonic, they're lightweight and the treatments are fast!
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i>Albuterol has caffiene in it, and it goes straight through your lung membrane into your blood. I get shakey when I use it too, but it's normal.Debbie22 yr old w/ Cf<hr></blockquote>Hi Debbie!This is Jessica.I am very surprised to hear albuterol has caffiene. That makes sense in the hyperness in children. I don't get shakey but I can say it does kind of wake me up. WOWPlease tell us how you find this out.Take careJessica
Hi, my daughter has a Duraneb 3000 by Pari. This is our second Duraneb machine. She had the 2000 before this. It is a great machine. It can be plugged in if you need/want to run it that way but it also has an re-chargeable internal gel battery. It is good for traveling since you can use it in the car, for camping etc. It comes with a cigarette lighter plug and is dual voltage. We had the first Duraneb for about five years, before it started losing it's charge quicker. We were supposed to get the Duraneb when we put in the request for her second machine but they delivered the Omron instead (don't know where that confusion came from). She tried it but didn't like it. She said that she felt like the nebulizer part was going to fall apart. I thought she'd like it because it was way smaller. But she didn't. She also didn't like that she had to hold the whole thing instead of just holding the nebulizer part. The Omron is one whole unit, no tubing. Pari has recently come out with a new smaller portable as well. I've been looking at it and waiting to see what people have to say about it, wanting to purchase it for my other daughter. I noticed someone mentioned ultrasonic nebulizers. They are not supposed to be used when doing Pulmozyme. They are unsure as to weather the heat (I think it's heat) created by the ultrasonic frequency will mess up the Pulmozyme making it not work correctly or at all. That's what I was told by our clinic way back when we started looking at a portable machine for our daughter. You can take a look at all that Pari has to offer by going to their website. They'll answer questions and you can sign up to win an assortment of prizes. You can't order directly from them but it has a way to search for the nearest dealer. We ended up purchasing from American Allergy Supply, good prices and fast service. Hope you find what you are looking for. As you can see we are definate Pari fans. Liza
My college freshman daughter uses the pari trek and loves it...it is so tiny, it hardly takes up any space at all (important in a dorm) and seems to work great. I have heard that pari is working on a super- fast nebulizer to use with tobi--does anyone know anything about it?
I am not sure which neb you are talking about from Pari that is supposed to make Tobi go very quickly, BUT my doc said that they are trying to make Tobi in an inhaler...like Advair. He said it will take several years because they are in the very begining stages, but if it is successful it will only take 3 seconds to take (just like Advair, Serevent, or Albuteral.) I know its still several years away, but I just thought that it was kinda exciting news...in 5 or 6 years we may not have to sit and inhale tobi for 15 minutes, but rather 15 seconds!
Hi, Someone mentioned a college freshman daughter that is using the Pari Trek. How is that going? I have been looking at it for a couple of months now but haven't heard of anyone that is actually using it. I asked American Allergy Supply if they were going to be carrying it but they said probably not and didn't really recommend it as it was still new and being so small that it might not deliver the meds as well as the Duraneb 3000 that we already have. I have been dying to hear from someone who's used/using it. Has your daughter been using it long? Does she feel like she's getting a good treatment with it? I have two girls with CF, one 17 (on Monday) she's a junior in HS and uses the Duraneb 3000, my other daughter is 13 in the 8th grade and uses the Pari turbo. I have wanted to buy the Pari Trek since I first saw it. My younger daughter will be going to cheer camp this summer and I thought it would be great for her to have a smaller more compact machine. You know, the less stuff to carry the better. I'd get it for my older daughter too but we just bought her Duraneb 3000 two years ago. May I ask also, how is your daughter doing at her first year in college? Does she live in the dorm? My oldest, like most teens I guess, wants to go away to school. Not just another state but preferably in England. I'm already feeling the worry at just the thought of her being in another state, much less another country. I suppose we have to let go and let them be at some point but how do you do it? I know this is off the topic, sorry. And to the other person that posted saying their doc gave them a pamplet on the pari trek, did it say it delivered the meds equally as well as a regular sized machine? I didn't see anything about that on the Pari website. Thanks for the info you can give.Liza
Hi Liza~I was the one with a pamphlet on the pari treck. I am sophomore in college and wanted it because when I go home for vacations (I am inthe dorms) I thought it would make packing lighter. The pamphlet gave very little information because it showed several different types of peri products and that was just one of them. I am trying to do research on it too, but am having trouble finding any info. Sorry I couldn't be of more help. I can, however, tell you about being a college student and dorm living. My parents were sooo worried about letting me move from home because of my health. Their concern made me want to try that much harder to prove to them I would be fine on my own. It was weird telling a complete stranger (my roomate) all about my CF and showing her my nebs and pills and everything. Before I moved in I had a tune up so that I could start the year off with good health and I am glad I did this because I think it helped me stay healthy longer. If your daughter is hospitalized a lot she may want to go to the disabilities office and register there. They have been sooo helpful! They told me that if I needed any accomadations they would help me out. They even asked me if I needed assistance getting to class when I was sick...as in having someone drive a golf buggy to the dorm, pick me up and drop me off in front of my building. Although I do not need this as my health is not too bad, it was nice to know that they would be willing ot do so much if I needed help. They also said that they woud protect you if you were hospitalized and a professor wants to fail you for missing an exam or any situation like that. If your school offers a dorm room with a private bathroom I would highly recommend it. I did not have one last year, but signed up for one this year and it is soooo much nicer. I can clean my nebs any time I want and if I go to bed later than my roomate and need to neb or do a treatment I go in the bathroom so that I won't wake up my roomate. Also, since there are sooo many people living in close proximity to eachother make sure your daughter gets the flue shot and you may even want to buy a fan to make sure the air is circulating. I go to school in California so the weather is usually nice and m roomate and I always leave the window open to get fresh air. Sorry this is sooo long. I just know how nervous my parents were about letting me go to school and I wanted to ease your fears a little. If you have ANY questions let me know!Emily (aka Emm) 19...20 in 2 days ...w/CF
I am the person with a daughter in college who uses the Pari Trek. She has been using it since December--she had a PFT done after about 2 months and it was excellent. Knock wood, her health has been great, despite getting less sleep. She gets a ton of exercise, which helps a lot.The new Pari for the Tobi is called the E Flow--it is supposed to be ready in a few months and is fast, fast, fast. I hope it is everything we hope--quick, convenient, easily cleaned.
Albuterol has no caffiene in it. Albuterol has a beta 1 and beta 2 stimulatory affect (agonist). All cells of the body have the receptors for beta 1 and beta 2 agonist. Caffiene is neither a beta 2 or a beta 1 agonist. Caffiene works by inhibiting adenosine and phosphodiesterase production. Adenosine and phosphodiesterase occur naturally in the body and act as part of your parasympathetic nervous system therby inhibiting the action of the body's natural beta agonist noradreline. Caffiene, by inhibiting the body's ability to control noradreline levels, gives a stimulatory affect. Albuterol, by acting as noradreline, gives a stimulatory affect.Do you guys want a stimulatory affect? Probably not. However, beta 1 agonist (most popular for raising heart beat) comes along with beta 2 in albuterol. Xopenex 0.63mg is becoming more popular now because of a lessened beta 1 affect but it still has a beta 1 affect.For those of you concerned about your heart rate I say cardio selective beta blockers have been used at the same time as respiratory drugs like xopenex and albuterol. Doctors probably won't use them unless an emergy occurs but it just makes sense if you want a beta 2 affect to help you breath and your heart beat is going nuts (beta 1) enough to keep you from sleeping that it might be helpful to have a selective beta 1 blocker in small dose. Just my two cents.