1. < MAC & Bronchiectasis

Living Dangerously - Nebulizer Cleaning

Posted by thumperguy @thumperguy, Mar 12, 2021

I marvel at the time consuming, meticulous way many, perhaps the majority, of contributors to this forum clean and sanitize nebulizers. Following the treatment session I soap and hot water “bathe” the mouthpiece then let it air dry until its next use. The tube gets no special attention except being fully disconnected from the compressor. I’ve read of some regimens aimed at sanitizing shower heads; another activity I ignore entirely. I’m closing in on 16 months free of a “flare-up” involving fever, and an antibiotic to defeat.
The lengthening periods of freedom from acute symptoms is something I attribute solely to learning about 7% saline nebulizer solution which I read about on this forum.
My comparatively minimal attention to “sanitation” may catch up with me but so far so good.

I should add that I realize many forum participants are contending with considerably more virulent pathology than I am. Don

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

Mentor
Sue, Volunteer Mentor | @sueinmn | May 21, 2021
In reply to @rits "I had a lot of pari nebulizer cups and tubing accumulated over the 10+ years I..." + (show)
@rits

I had a lot of pari nebulizer cups and tubing accumulated over the 10+ years I have been using saline but I only have one set left. For the first time I am going to have to purchase a set. Where do you get your nebulizing cup and tubing sets? Thank you.

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I buy them where convenient, but I learned one thing - all are not created equal. Now I stick to Pari or Respironics replacements (interchangeable) because the hard plastic mouth pieces on the cheaper ones are uncomfortable, and they don't always dispense evenly. I just looked at a couple of my sources and see they have both stopped putting masks into their kits automatically. Usually I use justnebulizers.com, directhomemedical.com, or whoever is cheaper on any given day. I see they have a new "enhanced" version with a valve that closes when you exhale to avoid wasting the meds - will try that next time.

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1 reply
rits | @rits | May 21, 2021
In reply to @sueinmn "I buy them where convenient, but I learned one thing - all are not created equal...." + (show)
@sueinmn

I buy them where convenient, but I learned one thing - all are not created equal. Now I stick to Pari or Respironics replacements (interchangeable) because the hard plastic mouth pieces on the cheaper ones are uncomfortable, and they don't always dispense evenly. I just looked at a couple of my sources and see they have both stopped putting masks into their kits automatically. Usually I use justnebulizers.com, directhomemedical.com, or whoever is cheaper on any given day. I see they have a new "enhanced" version with a valve that closes when you exhale to avoid wasting the meds - will try that next time.

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Thank you.

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pop55 | @pop55 | May 21, 2021
In reply to @swang18 "I saw Dr. Huitt as well, she will retire next year, do you know who you..." + (show)
@swang18

I saw Dr. Huitt as well, she will retire next year, do you know who you will see next year?

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No, I am scheduled to go back this summer to see her but not sure if I will or just wait till 2022. I am going to send a culture next month so I will decide when I see those results. Last culture showed it almost gone, only 10 colonies. I live in NC and also see Dr Mary Leigh Ann Daniels.

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1 reply
bnthorson | @bnthorson | May 22, 2021

I have been using the Innospire Go for a couple of years. I recharge it about once a month. I find it so much easier to use especially when I travel. I do t know anyone else that uses it??

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3 replies
Jennifer | @megan123 | May 22, 2021
In reply to @fdixon63 "Hi Jennifer. Not familiar with Coilstin. Is it inhaled? How long have you been using it?..." + (show)
@fdixon63

Hi Jennifer. Not familiar with Coilstin. Is it inhaled? How long have you been using it? I was told my pseudo would respond to Levoflaxin--after checking sputum. he did not say about Toby.he said this regime or PICC line again. I had that back in fall of 2019. Thanks much.

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Hi Fdixon63..Colistin is a nebulized drug,similar to Toby..in Toronto they use cipro and levaquin first before IV’s..less harsh..

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | May 22, 2021
In reply to @bnthorson "I have been using the Innospire Go for a couple of years. I recharge it about..." + (show)
@bnthorson

I have been using the Innospire Go for a couple of years. I recharge it about once a month. I find it so much easier to use especially when I travel. I do t know anyone else that uses it??

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Hello, Yes I had one of those, but I am an impatient sort, and found it slower than my "turtle" (my name for my old faithful green Pari Vios) which only takes 8-12 minutes to dispense 4ml of neb solution. So I trade a little noise for more speedy therapy.
I do take it on trips where space and weight are at a premium.
Sue

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2 replies
bnthorson | @bnthorson | May 22, 2021
In reply to @sueinmn "Hello, Yes I had one of those, but I am an impatient sort, and found it..." + (show)
@sueinmn

Hello, Yes I had one of those, but I am an impatient sort, and found it slower than my "turtle" (my name for my old faithful green Pari Vios) which only takes 8-12 minutes to dispense 4ml of neb solution. So I trade a little noise for more speedy therapy.
I do take it on trips where space and weight are at a premium.
Sue

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My Innospire only takes me 4-10 minutes and I can walk around with it which is great for me, before I have to sit still for the vest. My pari-trek takes me almost 20 minutes, so If I decide to replace it I will get the one you have. Thank you for all that you do on this site. I have always felt alone with these diseases, and now I have a community. I read daily and have learned a ton. You are a gift to all of us.
Babette

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fdixon63 | @fdixon63 | May 22, 2021
In reply to @megan123 "Hi Fdixon63..Colistin is a nebulized drug,similar to Toby..in Toronto they use cipro and levaquin first before..." + (show)
@megan123

Hi Fdixon63..Colistin is a nebulized drug,similar to Toby..in Toronto they use cipro and levaquin first before IV’s..less harsh..

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Is the Colistin as hard on your body as Toby. I've had Toby twice in the last two years. Seems a lot tougher this time. Coughing and fatigue is rough. Hoping it does the job. Did your Colistin get rid of the Pseudomonas Aroginosa? Thanks.

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1 reply
Jennifer | @megan123 | May 22, 2021

Fdixon63...It’s a great drug and for me much more tolerable every other month..it just knocks it back..not sure if I can get rid of it at this point..I live a great life with this drug

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thumperguy | @thumperguy | May 22, 2021
In reply to @fdixon63 "Thanks for being the trail blazer you are. That's what I like. Tips, tricks and all..." + (show)
@fdixon63

Thanks for being the trail blazer you are. That's what I like. Tips, tricks and all other bags of info. My MAC has been negative the last two but I can' seem to to shake the Pseudomonas for very long. I'm thinking our municipal water supply is the bad guy. I'll be "again" talking to our water works folks to see if they will do some testing. I don't think they want anyone rattling their cage. Currently I'm inhaling Tobramycin and can't seem to get through the process even after nebbing 30 min. I've tried Neb Doctors and Trek S (portable) compressors. I alternate between AeroEclipse II and regular set up with aerobika. One is not better than the other. I know I need to get the med in me but how long to keep it up. I usually stop after 30 mins. Any ideas? Thanks. Faye

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Faye, you said “can't seem to get through the process.” What interferes? Don

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