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Bronchiectasis: Is nebulizing helpful?

Posted by gej53 @gej53, Aug 8, 2021

Hi guys, hope I am posting this right. I have had bronchiectasis and have been nebulizing for two years now. A friend recently visited and said she has a history of pneumonia seven times and saw bronchiectasis on her scan. However, she does not nebulize. I was pretty surprised. Makes me wonder, is mine worse that hers on an xray? Is her doc remiss in not ordering her to nebulize? Does not everyone nebulize who has bronchiectasis? Any thoughts? Thanks so much.

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thumperguy | @thumperguy | Aug 20, 2021
In reply to @halford "I admire that you have dealt with this illness for such a long time and have..." + (show)
@halford

I admire that you have dealt with this illness for such a long time and have a sense of humor about it. I haven't been a year and the thought that this illness is a long, long haul. That this will affect the way I approach life physically and mentally. I thank all of you for informing me as to the experiencing that one goes through. My latest observation is weight loss,
loss of appetite and fatigue. My cooking seems so boring.

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Hauoli, If you haven’t done so try a small spritzer bottle of Bragg Amigos. It an easy way to jazz up the taste of otherwise bland foods. Not too much though. It’s high sodium. Don

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Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 20, 2021
In reply to @halford "I admire that you have dealt with this illness for such a long time and have..." + (show)
@halford

I admire that you have dealt with this illness for such a long time and have a sense of humor about it. I haven't been a year and the thought that this illness is a long, long haul. That this will affect the way I approach life physically and mentally. I thank all of you for informing me as to the experiencing that one goes through. My latest observation is weight loss,
loss of appetite and fatigue. My cooking seems so boring.

Jump to this post

I'm sorry to hear that you have new symptoms. If they persist it could be a sign of new ir worse infection. When I experienced that it was time to call my pulmonologist.
Have you considered doing that?
Sue

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1 reply
thumperguy | @thumperguy | Aug 20, 2021
In reply to @halford "I admire that you have dealt with this illness for such a long time and have..." + (show)
@halford

I admire that you have dealt with this illness for such a long time and have a sense of humor about it. I haven't been a year and the thought that this illness is a long, long haul. That this will affect the way I approach life physically and mentally. I thank all of you for informing me as to the experiencing that one goes through. My latest observation is weight loss,
loss of appetite and fatigue. My cooking seems so boring.

Jump to this post

Hauoli said, “this illness is a long, long haul.”
Right Hauoli, but if we weren’t tending to our lung disorders we’d just be doin’ something’ else. Sounds goofy I know, but think about it. Sure beats being in Afghanistan. Don

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hauoli | @halford | Aug 20, 2021

Thanks , more like beats getting out of Afghanistan! Our beautiful planet is under so much stress. H

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hauoli | @halford | Aug 20, 2021
In reply to @sueinmn "I'm sorry to hear that you have new symptoms. If they persist it could be a..." + (show)
@sueinmn

I'm sorry to hear that you have new symptoms. If they persist it could be a sign of new ir worse infection. When I experienced that it was time to call my pulmonologist.
Have you considered doing that?
Sue

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Thanks Sue, I see my pulmonologist next week tues and have a chat with him. H

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cmi | @cmi | Aug 21, 2021
In reply to @gej53 "Yes, I agree. The mask outside, especially on the hot days, was a drag.... As much..." + (show)
@gej53

Yes, I agree. The mask outside, especially on the hot days, was a drag....
As much as nebulizing gets tiring at times, I try to keep telling myself I am keeping my lungs as healthy as can be and am protecting myself as much as possible against MAC with the 7% saline. My physician was so sure I had MAC and was surprised when everything returned negative. I was grateful. This forum has educated me on how much people suffer with this. I am a nurse by background and had never heard of MAC or had one chart I reviewed reflect a patient had MAC. I fit the profile for "Lady Windermere Syndrome", but was glad did no have it....so far. That is a fancy sounding name for a disease one would not wish for!

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Gej53…your post made me smile this morning😎 Your background, experience, sense…all qualities we appreciate…keep sharing. I also nebulize 7% daily. I do have bronchiectasis and 2 strains of MAC avium complex. Also worked in hospitals, and respect the good work/workers.
We all need the encouragement…whatever our level of dis-ease/un-wellness…that we are participating fully in our recovery plan, and by this Forum, help others. So thank you again. BTW, I do present as the sovereign Lady Windermere. My Mother must have been psychic…she even blessed me with a royal name….Regina (translation “Queen”).
Stay well.
Regina

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kathyhg | @kathyhg | Aug 21, 2021

Thanks to everyone for their humour and support when it comes to living with bronchiectasis and Mac. I wanted to offer a word of encouragement on this thread about “Is nebulizing helpful?”.

I won’t burden you with my experience with bronchiectasis and Mac but I was diagnosed about 2 1/2 years ago. I was on the “Big 3” for 6 months and had to stop taking them because of side effects. I have been diligently nebulizing twice a day since then. I started with 3% saline and quickly changed to 7% after reading more about it on this forum.

I am sending this today because I just got the results from my last sputum test and it was negative for Mac. I wasn’t even close to a negative sample after 6 months on the medication so I attribute this to nebulizing. I have made a lot of dietary and lifestyle changes but I am convinced it is the nebulizing that has been most helpful.

Thanks again to everyone for sharing their support, experience and knowledge on this forum.

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4 replies
lora jo | @ljfoo | Aug 21, 2021

Kathy,
That is fantastic that you got rid of MAC through nebulizing. I have been nebulizing for a whole year, 3 times a day on a 10% saline soluation to avoid the three-course antibiotics. But my most recent sputum test still shows MAC. But I am happy it worked for you and glad to know it is possible to rid oneself of MAC by nebulizing. Has anyone else had this success?

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1 reply
lora jo | @ljfoo | Aug 21, 2021

I see a pulmonologist for my MAC. Should I be seeing an infectious disease doctor also? What is the difference between the two?

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 21, 2021
In reply to @ljfoo "Kathy, That is fantastic that you got rid of MAC through nebulizing. I have been nebulizing..." + (show)
@ljfoo

Kathy,
That is fantastic that you got rid of MAC through nebulizing. I have been nebulizing for a whole year, 3 times a day on a 10% saline soluation to avoid the three-course antibiotics. But my most recent sputum test still shows MAC. But I am happy it worked for you and glad to know it is possible to rid oneself of MAC by nebulizing. Has anyone else had this success?

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My test will come with my visit to the pulmonologist next week. She wouldn't even test me until AFTER one year off the meds and on saline - not it has been 20 months, so we shall see.
The big question, though with MAC is how symptomatic are you? If your cough, fatigue, etc have improved, maybe you can ask next time for a quantitative culture, to see how much MAC is there. Also, if there are previous images of your lungs, can you ask for new ones to see if things are improving, or at least staying the same?
Sue

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