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Not Enough Hours in the Day Without Trio

That Is EverythingI’ve mused in past articles, particularly those about my compliance and having the Trio for my nebulizer being the integral part of that compliance. Last night, as we were laying in front of the boob tube (no, not watching boobs, being boobs), I had to get up and start my nebs because Beautiful has insisted that I stop going to bed at 1 or 2am watching my site stats from my midnight posts.

She caught herself protesting my abandoning her to go to the couch, but realized before she was done that I was making a sacrifice, too, because I was comfortable and enjoying spending time with her – it was not my preference to get up.

As I made it into the kitchen, she said something to the effect of, “Aerosols, aerosols, aerosols! If you didn’t have the eFlow, you’d be doing them all day long, seriously! You’d start in the morning, and by the time you were done, it’d be time to do your afternoon one, and then we’d eat and you’d just start over again… for another 3 hours.” I’d literally be doing 6-8 hours of aerosols per day. I’m sorry, but that’s not a compatible way to live a life and “live a life.” You can’t hold down a job doing that, and even running  your own business from the couch would be hard, too.

This is why it was so important to get the new Trio unit, because my old eFlow had (over the course of a year or so) taken to enjoy making sweet love to whatever med was in its reservoir and taking 30-45 minutes to dispense. A new head would help for about a week (if that) and then it was back its old self with that head, too. I kept it by the computer and played World of Warcraft while I did one, maybe two aerosols per day and my health surly suffered from not doing my aerosols as planned. It was just impossible to be compliant with that thing… but I realize that some people are still on compressor nebs to this day because of the meds they are on or their insurance.

With my 5 in the morning, 5 at night, and one in the afternoon, I spend about an hour and a quarter per day with the world’s fastest nebulizer! I can’t imagine taking any longer than I already do because I literally feel like I don’t get my business tasks done as it is. After breakfast at 7am, as I field my inbox fires, get through mixing my colistin and sucking back on the nebs and doing my Vest when I’m not so full I’ll puke, it’s nearly 10:30am and it’s time to get some stuff done before it’s time to eat. I try to get another Vest treatment in before Beautiful leaves work at 4pm so she can call me if she needs/wants to. See more at A Medical Look at a Regular Day.

How long do you spend nebulizing each day? Do you have a compressor setup or Trio/Altera or a mix of both because of your meds?

Comments

  1. The nebulizers I have to do are hypertonic saline, Pulmozyme, TOBI, and Colistin. Pulmozyme and TOBI get done in a regular compressor and Colistin gets done in the eFlow. I was doing the hypertonic in the eFlow but my doctor told me to stop because they're finding that it can corrode the head, so now I'm using a regular compressor for that too. She seems to only want Colistin done in the eFlow, not any other meds. I'm not on Cayston at this point, so I don't have an Altera. She's pulling me off of Colistin to see how I do because she said most of her patients don't need continuous antibiotics, but if I don't do well off of it, she may put me on Cayston.

  2. So how long do you spend doing these?
    Sounds to me like you're getting some REALLY misinformed information on doing your nebs from your staff. You should still do 7% in the Trio: My Nebulizer’s “Dirty Head” for Colistin and Hyper-Sal 7% Saline. This area is easy because my coordinator sent us a PDF of tips and such regarding eFlows. The only thing they would like to amend from the document is that it refers to using tap water to rinse, but they would recommend using sterile water to avoid any bugs that might be present in tap water. Here is the PDF file.

  3. pleasepassthesalt says:

    I have a 50 psi compressor. It takes less than 30 minutes with a pari jet or sidestream nebulizer to get through 3.5 mL saline/albuterol, 2.5 mL pulmozyme and 4 mL hypertonic saline. The trick is to clean the compressor filter regularly (important because pulmozyme collects on it and clogs the airflow). My Pari Trek is actually even faster, but I only use it if travelling.

    I can't justify the need for an eFlow/Trio since my nebulizers are finished before my vest stops, plus I'm sure insurance wouldn't pay for one since I'm not on Cayston. I also appreciate the ability to bleach the crap out of my nebulizers before every use. The prep time is nil compared to what I've read is required for sterilizing and cleaning the eFlow/Trio. Maybe good for some for compliance, but I can argue that a 50 psi compressor is just as capable.

  4. It appears that compressors have certainly improves since I had my last one. I was usually running 15-25 minutes per vial of whatever with the Pari neb I had back in the day. Back in the day, I was only on 2 meds per sitting session, though, and we did PD instead of the Vest. Totally different life back then. I <3 the improvements being made.

  5. pleasepassthesalt says:

    50 psi is hospital grade, so it's not your plain regular compressor. Also, most regular compressors don't have removeable/cleanable filters. I can almost guarantee this is the source slow-pokey issue most people eventually experience with a regular compressor. When I moved to a humid climate, coupled with starting pulmozyme (major clogging offender), I was only getting like 6-8 months of use from a compressor before it totally died. I even had Pari ship one back telling me I voided the warranty because I spilled Sprite in it (not Sprite; pulmozyme + TOBI residue). My doc wrote a prescription saying I needed to be able to run my compressor for hours at a time (I didn't really) and therefore I needed a beefcake 50 psi. It worked and my insurance approved it. I've been using it for a few years now.

  6. Now I'm wondering what PSI I had growing up and what the one was that we got when I was in high school. I was just asked by my coordinator if we still have a compressor, but I can't remember if I finally decided we would never have any need for it again with 2 eFlows.

  7. Dgj23112 says:

    Hey… Matthew (12) does all inhaled meds through the nebulizer (without eflow or any other devices). He does 3 treatments a day. First one albutoral and hyper sal 7%, second treatment albutoral and Pulmozyme and the last one he gets is albuterol and hyper sal. Each session takes about an hour.

  8. 3 hours a day? Man, it's that kind of stuff that will just wear you out when you've got a 40-60 hour per week job and why bad things happen with compliance, IMHO.

  9. Colleen says:

    Just wanted to give to throw out a “hell yeah” for meeting that BMI Goal!!!!

  10. Thanks for noticing! I was going to do a post about it, but I want to hold
    steady for a couple of days before I declare it “done.”

  11. Seanset says:

    Robyn does 3 treatments a day using the I-neb, 1 x Pulmozyme + 1x Promixin in the morning and 1x Promixin when she gets in from school, each treatment takes about 4 minutes on average to do and all the data from the I-neb can be downloaded by the hospital to check how long each dose is taking also how many doses and what dates it was used, no chance of getting away with not doing any treatments it's all in black & white for the Doctors to see.

    Lauren uses the e-Flow for her Pulmozyme and has now started to use the TIP(Tobramycin Inhalation Powder) the TIP takes about 3-5 minutes to use but because there isn't a neb with this there's no cleaning of pots to do. And at the moment it is used a month on, month off with nothing being taken in the month off period. 🙂

  12. Those sound like even better dose times than I have. That's amazing to thing a month off with no nebs.