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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 20, 2017

Hi all,
As many of you already know, Katherine has requested a leave of absence from her mentoring duties to take care of her health. Read more here: http://mayocl.in/2gNlvFR

I'm pleased to announce that @windwalker has joined the volunteer Mentor troupe. Thank you, Terri!
Please join me in congratulating Terri in her new role.
Colleen

PS: Here is more information about Mentors, who they are and what they do https://connect.mayoclinic.org/about-our-moderators-and-mentors/

REPLY
5 replies
ling123 | @ling123 | Jul 20, 2017

Best wishes to Katherine for speedy recovery. Congratulations, Terri @windwalker , our new Mentor.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 20, 2017

Thank you , Ling!

REPLY
lindam272 | @lindam272 | Jul 20, 2017
In reply to @colleenyoung "Hi all, As many of you already know, Katherine has requested a leave of absence from..." + (show)
@colleenyoung

Hi all,
As many of you already know, Katherine has requested a leave of absence from her mentoring duties to take care of her health. Read more here: http://mayocl.in/2gNlvFR

I'm pleased to announce that @windwalker has joined the volunteer Mentor troupe. Thank you, Terri!
Please join me in congratulating Terri in her new role.
Colleen

PS: Here is more information about Mentors, who they are and what they do https://connect.mayoclinic.org/about-our-moderators-and-mentors/

Jump to this post

Thank you, Terri! Praying for Katherine and a complete recovery. You are an angel to step into this position and keep everyone informed. Linda M

REPLY
boomerexpert | @boomerexpert | Jul 20, 2017
In reply to @colleenyoung "Hi all, As many of you already know, Katherine has requested a leave of absence from..." + (show)
@colleenyoung

Hi all,
As many of you already know, Katherine has requested a leave of absence from her mentoring duties to take care of her health. Read more here: http://mayocl.in/2gNlvFR

I'm pleased to announce that @windwalker has joined the volunteer Mentor troupe. Thank you, Terri!
Please join me in congratulating Terri in her new role.
Colleen

PS: Here is more information about Mentors, who they are and what they do https://connect.mayoclinic.org/about-our-moderators-and-mentors/

Jump to this post

Yea fellow Terri @windwalker and glad you're taking a well deserved break, Katherine!

REPLY
irene5 Irene Estes | @irene5 | Jul 20, 2017
In reply to @colleenyoung "Hi all, As many of you already know, Katherine has requested a leave of absence from..." + (show)
@colleenyoung

Hi all,
As many of you already know, Katherine has requested a leave of absence from her mentoring duties to take care of her health. Read more here: http://mayocl.in/2gNlvFR

I'm pleased to announce that @windwalker has joined the volunteer Mentor troupe. Thank you, Terri!
Please join me in congratulating Terri in her new role.
Colleen

PS: Here is more information about Mentors, who they are and what they do https://connect.mayoclinic.org/about-our-moderators-and-mentors/

Jump to this post

Thank you Terri for helping as mentor. Hope Katherine and her hubby will have some peace of mind about their very significant health issues.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 20, 2017
In reply to @colleenyoung "Hi all, As many of you already know, Katherine has requested a leave of absence from..." + (show)
@colleenyoung

Hi all,
As many of you already know, Katherine has requested a leave of absence from her mentoring duties to take care of her health. Read more here: http://mayocl.in/2gNlvFR

I'm pleased to announce that @windwalker has joined the volunteer Mentor troupe. Thank you, Terri!
Please join me in congratulating Terri in her new role.
Colleen

PS: Here is more information about Mentors, who they are and what they do https://connect.mayoclinic.org/about-our-moderators-and-mentors/

Jump to this post

I hear you, Irene. Katherine has and is going through a lot. She is on my mind every day.

REPLY
tdrell | @tdrell | Jul 20, 2017

windwalker and Katherine....Kudos to Terri for taking on the important role that Katherine so expertly and cleverly has been handling. And Katherine....am sending all kinds of best wishes for you and your hubby to get back on your capable feet. love tdrell aka terri

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 20, 2017

Thank you, Terri. I have comfort knowing you are in the wings, so to speak, on this forum. You always have good input and are a part of keeping this group together. Hugs from the other Terri!

REPLY
1 reply
Jo Ann K | @jkiemen | Jul 20, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

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I live in Southeastern Wisconsin in Walworth County, rural with well water. The post office is Elkhorn Wisconsin near Lake Geneva. When I got ill, I was living

in the City of Delavan Wisconsin which is city water etc.

 

JO Ann

 

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