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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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 6, 2018
In reply to @heathert "Hi all I have just started inhaling saline 7%. I have been told to use 4ml,..." + (show)
@heathert

Hi all I have just started inhaling saline 7%. I have been told to use 4ml, nearly a teaspoon, saline which only takes a few minutes to inhale. Is it the same for all of you on saline?

Jump to this post

@heathert Hello...saw your post on nebulizing saline. I am using the 4 ml that is premeasured but here is the difference ....it takes me more like 12-14 minutes to inhale it and then another 3 or 4 to huff and then to cough up the phlegm. Are you sure you are using 4ml as your nebulizing time seems very brief? From what I read you should breathe in and out slowly and deeply. Kate

REPLY
1 reply
Flib | @flib | Sep 6, 2018

@alleycatkate I could use some help with nebulizing. Are you suppose to breath in and hold it before breathing out? And if yes,, then a lot of the mist escapes into the air.Flib.

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1 reply
alleycatkate | @alleycatkate | Sep 6, 2018
In reply to @flib "@alleycatkate I could use some help with nebulizing. Are you suppose to breath in and hold..." + (show)
@flib

@alleycatkate I could use some help with nebulizing. Are you suppose to breath in and hold it before breathing out? And if yes,, then a lot of the mist escapes into the air.Flib.

Jump to this post

@flib Hi Flib...I am pretty new to this but go by this from a bronchiectasis.site...pretty simple. They even have a video but here is the site and the nebulizing info: : http://bronchiectasis.com.au/physiotherapy/techniques/inhalation-therapy-via-a-nebuliser

Sit in a well-supported chair with a neutral lumbar spine – this enhances the function of the diaphragm and the pelvic floor and minimises musculoskeletal stress (Fig. 1)

Use a mouthpiece *, if possible, and place it well into the mouth on top of the tongue

Instruct the patient to breathe in slowly, with varied inspiratory volumes

Hold the breath briefly before exhaling

Continue until the nebuliser bowl is empty

REPLY
2 replies
alleycatkate | @alleycatkate | Sep 6, 2018
In reply to @alleycatkate "@flib Hi Flib...I am pretty new to this but go by this from a bronchiectasis.site...pretty simple...." + (show)
@alleycatkate

@flib Hi Flib...I am pretty new to this but go by this from a bronchiectasis.site...pretty simple. They even have a video but here is the site and the nebulizing info: : http://bronchiectasis.com.au/physiotherapy/techniques/inhalation-therapy-via-a-nebuliser

Sit in a well-supported chair with a neutral lumbar spine – this enhances the function of the diaphragm and the pelvic floor and minimises musculoskeletal stress (Fig. 1)

Use a mouthpiece *, if possible, and place it well into the mouth on top of the tongue

Instruct the patient to breathe in slowly, with varied inspiratory volumes

Hold the breath briefly before exhaling

Continue until the nebuliser bowl is empty

Jump to this post

@flib ...also when you hold your breath for a few moments, the nebulized saline should stop misting. (at least that is what happens on mine) ??

REPLY
heathert | @heathert | Sep 6, 2018
In reply to @alleycatkate "@heathert Hello...saw your post on nebulizing saline. I am using the 4 ml that is premeasured..." + (show)
@alleycatkate

@heathert Hello...saw your post on nebulizing saline. I am using the 4 ml that is premeasured but here is the difference ....it takes me more like 12-14 minutes to inhale it and then another 3 or 4 to huff and then to cough up the phlegm. Are you sure you are using 4ml as your nebulizing time seems very brief? From what I read you should breathe in and out slowly and deeply. Kate

Jump to this post

Thanks Kate, I will time it today. I have a Pari eflo which I think is fast but that is very fast.

REPLY
Jennifer | @megan123 | Sep 6, 2018
In reply to @boomerexpert "@windwalker sounds like you need to sit down with him and talk...once you feel calmer...he doesn't..." + (show)
@boomerexpert

@windwalker sounds like you need to sit down with him and talk...once you feel calmer...he doesn't seem to understand how fragile your health can be...easy to do if you generally look and act healthy. I'd say particularly for a man, but both men and women tend to be unable to fully grasp the seriousness of an illness/condition that's not always visible - we're not in a wheelchair or on oxygen, we do our best to live a life a normally as possible; folks forget or just don't get how susceptible we are. If helpful, bring him to a doc appt so the doc can verify your limitations and explain the reason for them in a way your husband will get...

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@windwalker....I totally agree with boomer expert...our partners need to be apart if this journey, so bringing him to all appts from here on....men r wired differently to women, and when they here it first hand from a specialist, they’ll understand it better...

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2 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 7, 2018
In reply to @heathert "Hi all I have just started inhaling saline 7%. I have been told to use 4ml,..." + (show)
@heathert

Hi all I have just started inhaling saline 7%. I have been told to use 4ml, nearly a teaspoon, saline which only takes a few minutes to inhale. Is it the same for all of you on saline?

Jump to this post

@heathert my saline treatment takes about 30 mins to get through.

REPLY
1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 7, 2018
In reply to @flib "I would be ticked off if my husband had volunteered my services to anyone. You don't..." + (show)
@flib

I would be ticked off if my husband had volunteered my services to anyone. You don't give up your individuality when you become a couple. Larger problem is the very common lack of understanding of the difficulties of this lousy disease. You're up your down. No predicting how you will feel throughout a day. And the necessity of avoiding any thing that might infect your lungs. Getting a cold can be very serious. I know, I landed in the hospital with what started out as a cold. Maybe send you husband over with a note saying you have a chronic illness and must avoid colds of any kind. I dislike having to educate the people around me about my illness...I mean who wants to talk or hear about it. But it's necessary; it's part of taking care of oneself. So hit you husband over the head with a frying pan, forgive him and carry on and stay away from those kids for now.

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@flib 'Frying pan' ha ha ha!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 7, 2018
In reply to @tdrell "@windwalker Terri....feel pissed at the situation with the imported cooties.......BUT know hubby was acting out of..." + (show)
@tdrell

@windwalker Terri....feel pissed at the situation with the imported cooties.......BUT know hubby was acting out of being helpful.....and assuming he is relatively heathy has no frame of reference. I honestly sometimes wonder if males reasoning and brains are designed differently than females.
Meanwhile, how to stimulate your immune system....play favorite...music.....read or watch items that release endorphins.....call a chum that you love to yak with. Etc
Meanwhile I will send the “white light “ that those cooties will pass thru your system and do no damage. Tdrell terri

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@tdrell Thank you Terri. What you are sending must be working. The symptoms are waning!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 7, 2018
In reply to @america "Hi Terri! I am so sorry you’re sick. I’m sending hugs from Mayo Clinic!! I hope..." + (show)
@america

Hi Terri! I am so sorry you’re sick. I’m sending hugs from Mayo Clinic!! I hope you’re going to be well soon. I got sick last week and ended up in the emergency room twice. Feel better!! Rita.

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@america Thank you Rita, I am actually pulling out of it (I think). How are things going at Mayo?

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