1. < MAC & Bronchiectasis

Practical questions about nebulizer, shower head filters & gargling

Posted by terryb1 @128128terry11t, Dec 20, 2017

This forum is so helpful and I thank all for their contributions. I have three questions:
1. Do we have to rinse the aerobika or nebulizer in distilled water after we soak in plain sudsy water or can we just rinse in regular water for our daily cleaning? I ask because lugging distilled water can be cumbersome and I would love to skip the use of distilled water if it is unnecessary.
2. For those who have put a filter(s) on their shower head so that showering can be the equivalent of bathing, please let us know specifically what filter or filters you installed and any other information that would be helpful for us to know.
3. Was anyone advised to gargle after using inhaled amikacin? If so, was any particular mouthwash recommended?
As always, thank you and wishing all a Merry Christmas and a Happy and Healthier New Year. Terry

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

Jen_b | @jenblalock | Jan 16, 2018
In reply to @ppeschke "@windwalker you have no idea how much I needed to read your post today. I am..." + (show)
@ppeschke

@windwalker you have no idea how much I needed to read your post today. I am 49 & have been diagnosed with UIL & ILD. My disease has progressed rather quickly. I have a job that I absolutely love but I am battling & sickness & weight loss. This is so darn hard. I feel worthless & weak & old & feel a burden to my sister. I am trying not to get down but my bad days seem to be outnumbering the good ones. I don't want to be a "Debbie Downer" or negative. Help! I could use any advice

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@windwalker When I applied for disability I had to wait until I was no longer working. If still working, she will be denied because she can still work. Just an FYI.

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Jo Ann K | @jkiemen | Jan 16, 2018
In reply to @loveblue "I am astounded at the confusion surrounding cleaning of the nebulizer. I think even the experts..." + (show)
@loveblue

I am astounded at the confusion surrounding cleaning of the nebulizer. I think even the experts change their minds frequently. I was told at National Jewish last fall that Dawn liquid detergent was the chosen cleaner over vinegar and if equipment is dry after cleaning, there is no chance of reinfecting with MAC. So why would it matter about rinsing with boiled water? I bought a baby sterilizer and now NJ says the preferred method is microwaving. My daily process has been to let the arobika and nebulizing equipment soak about 15 minutes in warm water with Dawn liquid detergent. Rinsing with regular water then using the bottle sterilizer for 8 minutes with distilled water. Then I put a nail fan on the parts to dry them. Yikes....Now I am concerned once again about what to do. Boiling water seems like a LOT of work.

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Another Wisconsin Resident on board. I would be interested in knowing if we are in certain regions. I see South Carolina and the east coast and Wisconsin. Do we have some West Coast? I understand that Oregon is high also

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 16, 2018
In reply to @loveblue "I am astounded at the confusion surrounding cleaning of the nebulizer. I think even the experts..." + (show)
@loveblue

I am astounded at the confusion surrounding cleaning of the nebulizer. I think even the experts change their minds frequently. I was told at National Jewish last fall that Dawn liquid detergent was the chosen cleaner over vinegar and if equipment is dry after cleaning, there is no chance of reinfecting with MAC. So why would it matter about rinsing with boiled water? I bought a baby sterilizer and now NJ says the preferred method is microwaving. My daily process has been to let the arobika and nebulizing equipment soak about 15 minutes in warm water with Dawn liquid detergent. Rinsing with regular water then using the bottle sterilizer for 8 minutes with distilled water. Then I put a nail fan on the parts to dry them. Yikes....Now I am concerned once again about what to do. Boiling water seems like a LOT of work.

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@jkiemen , The hot-spot regions for mac are: Arizona, California, Hawaii, Florida, New Hampshire, and Wisconsin. These states have the highest incidence of reported mac infections.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 16, 2018
In reply to @ppeschke "@windwalker you have no idea how much I needed to read your post today. I am..." + (show)
@ppeschke

@windwalker you have no idea how much I needed to read your post today. I am 49 & have been diagnosed with UIL & ILD. My disease has progressed rather quickly. I have a job that I absolutely love but I am battling & sickness & weight loss. This is so darn hard. I feel worthless & weak & old & feel a burden to my sister. I am trying not to get down but my bad days seem to be outnumbering the good ones. I don't want to be a "Debbie Downer" or negative. Help! I could use any advice

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@jenblalock , Good point, I forgot to include that tidbit. Thank you for catching that.

REPLY
Jo Ann K | @jkiemen | Jan 16, 2018
In reply to @loveblue "I am astounded at the confusion surrounding cleaning of the nebulizer. I think even the experts..." + (show)
@loveblue

I am astounded at the confusion surrounding cleaning of the nebulizer. I think even the experts change their minds frequently. I was told at National Jewish last fall that Dawn liquid detergent was the chosen cleaner over vinegar and if equipment is dry after cleaning, there is no chance of reinfecting with MAC. So why would it matter about rinsing with boiled water? I bought a baby sterilizer and now NJ says the preferred method is microwaving. My daily process has been to let the arobika and nebulizing equipment soak about 15 minutes in warm water with Dawn liquid detergent. Rinsing with regular water then using the bottle sterilizer for 8 minutes with distilled water. Then I put a nail fan on the parts to dry them. Yikes....Now I am concerned once again about what to do. Boiling water seems like a LOT of work.

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and in Wisconsin, we have allot of people that spend half the year in Arizona and Florida
Also I am wondering about the larger area in Wisconsin were this is being detected. South East Wisconsin seems to be a big area but there are also many larger medical centers in that area. So is the diagnosis the key and other area underdiagnosed or is it just the area.

REPLY
ling123 | @ling123 | Jan 16, 2018
In reply to @loveblue "I am astounded at the confusion surrounding cleaning of the nebulizer. I think even the experts..." + (show)
@loveblue

I am astounded at the confusion surrounding cleaning of the nebulizer. I think even the experts change their minds frequently. I was told at National Jewish last fall that Dawn liquid detergent was the chosen cleaner over vinegar and if equipment is dry after cleaning, there is no chance of reinfecting with MAC. So why would it matter about rinsing with boiled water? I bought a baby sterilizer and now NJ says the preferred method is microwaving. My daily process has been to let the arobika and nebulizing equipment soak about 15 minutes in warm water with Dawn liquid detergent. Rinsing with regular water then using the bottle sterilizer for 8 minutes with distilled water. Then I put a nail fan on the parts to dry them. Yikes....Now I am concerned once again about what to do. Boiling water seems like a LOT of work.

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Good question. People living in rural areas or small towns could easily be under or misdiagnosed. Or simply never even seek medical treatment due to lack of insurance coverage or access to major medical centers.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 17, 2018
In reply to @loveblue "I am astounded at the confusion surrounding cleaning of the nebulizer. I think even the experts..." + (show)
@loveblue

I am astounded at the confusion surrounding cleaning of the nebulizer. I think even the experts change their minds frequently. I was told at National Jewish last fall that Dawn liquid detergent was the chosen cleaner over vinegar and if equipment is dry after cleaning, there is no chance of reinfecting with MAC. So why would it matter about rinsing with boiled water? I bought a baby sterilizer and now NJ says the preferred method is microwaving. My daily process has been to let the arobika and nebulizing equipment soak about 15 minutes in warm water with Dawn liquid detergent. Rinsing with regular water then using the bottle sterilizer for 8 minutes with distilled water. Then I put a nail fan on the parts to dry them. Yikes....Now I am concerned once again about what to do. Boiling water seems like a LOT of work.

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@jkiemen, South East Wisconsin seems to be a hotbed for mac. I know that some of the counties there are supplied by water that is open reservoirs; which means that lots of natural organisms live there in it.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 17, 2018
In reply to @128128terry11t "@loveblue Yee gads! If we are not crazy yet, this will end that journey! The only..." + (show)
@128128terry11t

@loveblue Yee gads! If we are not crazy yet, this will end that journey! The only thing that is for certain is ... that nothing is for certain. I have been microwaving the aerobika and baby bottle sterilizing the nebulizers once a week in addition to daily cleaning. Sounds like you sterilize daily -- is that correct? I can't imagine that doing it either way for all the equipment is inadequate. As far as the vinegar is concerned, NJ therapist said that once/month in vinegar is helpful to remove any buildup. I do the 2 cups vinegar to 2 cups distilled water so that I can soak all equipment at same time. If anyone else has a thought on this, it would be greatly appreciated. Terry

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@loveblue, It sounds like you are doing a good job of cleaning.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 17, 2018

I thought that this article would be helpful for learning that the greatest potential for contracting mac is most likely from our water. https://pubs.acs.org/doi/abs/10.1021/acs.est.5b00496

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1 reply
gardenernj | @gardenernj | Jul 20, 2018
In reply to @windwalker "I thought that this article would be helpful for learning that the greatest potential for contracting..." + (show)
@windwalker

I thought that this article would be helpful for learning that the greatest potential for contracting mac is most likely from our water. https://pubs.acs.org/doi/abs/10.1021/acs.est.5b00496

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@windwalker, Thank you for posting the article. I am new to this forum and am finding it incredibly helpful. I was just recently diagnosed with Bronchietasis and MAC and have so many questions. When brushing my teeth, should I be using sterilized water?

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