1. < MAC & Bronchiectasis

Remission: When do you consider yourself in remission from MAC?

Posted by thumperguy @thumperguy, May 23, 2022

Okay, so let’s say you’ve been appointed to proclaim from on high how many days, weeks, months or years of being symptom free must come and go before you may, without fear of making a fool of yourself, declare yourself to be “cured”

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Mentor
Sue, Volunteer Mentor | @sueinmn | Feb 8, 2023
In reply to @kathyhg "I have been waiting for these to be restocked too. What are other good options? I’m..." + (show)
@kathyhg

I have been waiting for these to be restocked too. What are other good options? I’m going on my first trip in nearly 5 years and I’d hoped to get the InnoSpire Go but I’ll need to find another good portable nebulizer before I go.
Thanks,

Jump to this post

Do you need a mesh nebulizer, or would you be okay with a small, portable compressor type? I have used the DeVilbiss Traveler and the PariTrek S Compact very happily. This is my go to company for deciding - always willing to answer questions
https://justnebulizers.com/collections/portable-nebulizers
I personally will be calling them soon because my Innospire Go is in its last days (after 2+ years.)
I have heard very little positive about the cheap portables available on line for long term use, and many are not made to have the cup detached for disinfecting (probably their way of avoiding complaints about leaks.)
Will you let us know what you find?
Sue

REPLY
2 replies
kathyhg | @kathyhg | Feb 8, 2023
In reply to @sueinmn "Do you need a mesh nebulizer, or would you be okay with a small, portable compressor..." + (show)
@sueinmn

Do you need a mesh nebulizer, or would you be okay with a small, portable compressor type? I have used the DeVilbiss Traveler and the PariTrek S Compact very happily. This is my go to company for deciding - always willing to answer questions
https://justnebulizers.com/collections/portable-nebulizers
I personally will be calling them soon because my Innospire Go is in its last days (after 2+ years.)
I have heard very little positive about the cheap portables available on line for long term use, and many are not made to have the cup detached for disinfecting (probably their way of avoiding complaints about leaks.)
Will you let us know what you find?
Sue

Jump to this post

Thanks; I will check those out and let people know what I decide. I have one of the cheaper mesh ones but it is so unreliable (I’ve replaced it a couple of times while on warranty) that I don’t trust it to take anywhere.

Speaking of reliable, I have 2 of the Pari Vios green compressors (I bought an extra one when everything was on lockdown in the early days of covid so I had a backup in case it stopped working). I’ve already replaced both of those Pari Vios green compressors twice. When I last took the green one in for replacement, they replaced it with a Pari PRONEB Max instead of the green one. I hope it lasts longer than the green ones have.

I am grateful that the green compressors have a 5 year warranty as I’ve needed it. I’m not sure if it is because I use them twice a day but I’ve been pretty disappointed in it.

Anyway, this is probably why I want to make sure that I take a reliable compressor along with me on vacation!

REPLY
wonkybronky | @wonkybronky | Feb 9, 2023

Did anyone have heart beat irregularities after beginning to nebulizer with the 7% saline .

REPLY
1 reply
irenea8 | @irenea8 | Feb 9, 2023
In reply to @kathyhg "I have been waiting for these to be restocked too. What are other good options? I’m..." + (show)
@kathyhg

I have been waiting for these to be restocked too. What are other good options? I’m going on my first trip in nearly 5 years and I’d hoped to get the InnoSpire Go but I’ll need to find another good portable nebulizer before I go.
Thanks,

Jump to this post

The Pari Trek has a battery back up option you can buy plus it has a plug that works in a car.

REPLY
crepass | @crepass | Feb 13, 2023
In reply to @sueinmn "Do you need a mesh nebulizer, or would you be okay with a small, portable compressor..." + (show)
@sueinmn

Do you need a mesh nebulizer, or would you be okay with a small, portable compressor type? I have used the DeVilbiss Traveler and the PariTrek S Compact very happily. This is my go to company for deciding - always willing to answer questions
https://justnebulizers.com/collections/portable-nebulizers
I personally will be calling them soon because my Innospire Go is in its last days (after 2+ years.)
I have heard very little positive about the cheap portables available on line for long term use, and many are not made to have the cup detached for disinfecting (probably their way of avoiding complaints about leaks.)
Will you let us know what you find?
Sue

Jump to this post

I am curious Sue. My question is when did you decide to resume the 7% saline nebs? In July, I saw that you had stopped them, but can't see when you decided to restart? I am asking because I just concluded 14 months of ethambutol and azithromycin. My CT scan stays the same, but have no positive mac sputums the last 12 months. I still feel better after nebulizing 7% saline once a day with airway clearance. My infectious disease doctor said bronchiectasis will always be with me so this is important. (on another tack..still haven't found a good pulmonologist.)
Thanks, Cindy

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Feb 13, 2023
In reply to @crepass "I am curious Sue. My question is when did you decide to resume the 7% saline..." + (show)
@crepass

I am curious Sue. My question is when did you decide to resume the 7% saline nebs? In July, I saw that you had stopped them, but can't see when you decided to restart? I am asking because I just concluded 14 months of ethambutol and azithromycin. My CT scan stays the same, but have no positive mac sputums the last 12 months. I still feel better after nebulizing 7% saline once a day with airway clearance. My infectious disease doctor said bronchiectasis will always be with me so this is important. (on another tack..still haven't found a good pulmonologist.)
Thanks, Cindy

Jump to this post

In December when I got hit with a respiratory virus and began to build up mucus I resumed. I now neb with saline about 5 times a week, but not always 7%. I really do find I breather easier.
Sue

REPLY
Mentor
Sue, Volunteer Mentor | @sueinmn | Feb 13, 2023
In reply to @wonkybronky "Did anyone have heart beat irregularities after beginning to nebulizer with the 7% saline ." + (show)
@wonkybronky

Did anyone have heart beat irregularities after beginning to nebulizer with the 7% saline .

Jump to this post

No, but I do get them when I nebulize albuterol.
Do you neb both? I think the albuterol is more likely to cause this issue.
Sue

REPLY
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