1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

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January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!

If you have the "MS Word" program on your computer:
- Document Title Example:  Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal "file cabinet" on MAC/MAI!  Go to it!

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

alleycatkate | @alleycatkate | Sep 7, 2018

@oldkarl .. Thanks so much! I very much appreciate your information. Kate

REPLY
Jennifer | @megan123 | Sep 7, 2018
In reply to @windwalker "@megan123 Hi Jennifer. He has gone to every appt with me. He knows. He just wasn't..." + (show)
@windwalker

@megan123 Hi Jennifer. He has gone to every appt with me. He knows. He just wasn't thinking at the time. I reminded him again. I may talk to the mom of the kids and explain it to her. That way, she will think before asking us the next time. They are are building a house and she has constant errands..... I don't mind watching her kids, but we are coming into cold and flu season.

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Just be careful and look after yourself

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ling123 | @ling123 | Sep 7, 2018
In reply to @windwalker "@oldkarl Hi Karl. Are you possibly confusing chronic bronchiectasis with chronic bronchitis? I have never heard..." + (show)
@windwalker

@oldkarl Hi Karl. Are you possibly confusing chronic bronchiectasis with chronic bronchitis? I have never heard of chronic bronchiectasis.

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@oldkarl I'm with @windwalker Terri. I have never heard of chronic being used with bronchiectasis. I thought bronchiectasis IS chronic. Once you are diagnosed with it's for life. There is no cure. When you put chronic and bronchiectasis together, it is as if bronchiectasis can be transient and curable. That makes no sense to me.

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2 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 7, 2018
In reply to @alleycatkate "@flib. @windwalker Hi...Now I am confused about blowing back into the nebulizer. The video I posted..." + (show)
@alleycatkate

@flib. @windwalker Hi...Now I am confused about blowing back into the nebulizer. The video I posted shows to just keep the nebulizer in the mouth and blow back into it. ?? Hope that is not wrong. That is how I have been doing it.

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@flib I wasn't taking into account that some mouthpieces have that little outlet valve or flap to allow exhaled breath to escape through. The main thing is to get the mist into the lungs.

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 7, 2018
In reply to @ling123 "@oldkarl I'm with @windwalker Terri. I have never heard of chronic being used with bronchiectasis. I..." + (show)
@ling123

@oldkarl I'm with @windwalker Terri. I have never heard of chronic being used with bronchiectasis. I thought bronchiectasis IS chronic. Once you are diagnosed with it's for life. There is no cure. When you put chronic and bronchiectasis together, it is as if bronchiectasis can be transient and curable. That makes no sense to me.

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@ling123 That was exactly my thought process when I read Karl's post.

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 7, 2018
In reply to @heathert "@windwalker timed mine yesterday and it took about 15mins." + (show)
@heathert

@windwalker timed mine yesterday and it took about 15mins.

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@heathert I think I need a Pari nebulizer!

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1 reply
heathert | @heathert | Sep 8, 2018
In reply to @windwalker "@heathert I think I need a Pari nebulizer!" + (show)
@windwalker

@heathert I think I need a Pari nebulizer!

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@windwalker I had one when in the Amakacin trial so when I finished I bought my own, fantastic nebuliser and no tubes so easy to clean!

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1 reply
Flib | @flib | Sep 8, 2018
In reply to @alleycatkate "@flib. @windwalker Hi...Now I am confused about blowing back into the nebulizer. The video I posted..." + (show)
@alleycatkate

@flib. @windwalker Hi...Now I am confused about blowing back into the nebulizer. The video I posted shows to just keep the nebulizer in the mouth and blow back into it. ?? Hope that is not wrong. That is how I have been doing it.

Jump to this post

I know. I saw that video too some time ago and also another one. In both the mouth is not removed from the nebulizer...i.e. the person is exhaling back into the nebulizer which seems all wrong. However, if you take you mouth piece out to exhale you are losing some of the mist. Flib

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1 reply
Flib | @flib | Sep 8, 2018
In reply to @ling123 "@oldkarl I'm with @windwalker Terri. I have never heard of chronic being used with bronchiectasis. I..." + (show)
@ling123

@oldkarl I'm with @windwalker Terri. I have never heard of chronic being used with bronchiectasis. I thought bronchiectasis IS chronic. Once you are diagnosed with it's for life. There is no cure. When you put chronic and bronchiectasis together, it is as if bronchiectasis can be transient and curable. That makes no sense to me.

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Exactly what I was thinking.Thanks, Flib

REPLY
Flib | @flib | Sep 8, 2018
In reply to @windwalker "@flib I wasn't taking into account that some mouthpieces have that little outlet valve or flap..." + (show)
@windwalker

@flib I wasn't taking into account that some mouthpieces have that little outlet valve or flap to allow exhaled breath to escape through. The main thing is to get the mist into the lungs.

Jump to this post

Thanks, Terri. My conclusion also. My nebulizer doesn't have any holes but I manage to exhale to the side and get the mist in. All this fun, I can hardly stand it.

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