(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.

Lisa Y | @tutti | Nov 17, 2017

In reply to @sophie1019 "Does anyone use a PIC line to get their meds???" + (show)

I had a pic line for 9 weeks. I did 2 antibiotics twice daily through the pic line. If you have questions feel free to contact me by private message.

Sophie | @sophie1019 | Nov 18, 2017

In reply to @sophie1019 "Does anyone use a PIC line to get their meds???" + (show)

I have a pic line also. Was taking amikican, but made my kidney function bad, very bad. Had to come off. Now my creatine levels are coming down....so happy...

heathert | @heathert | Nov 24, 2017

wow everything has gone so quiet, how is everybody doing?

Colleen Young, Connect Director | @colleenyoung | Nov 24, 2017

In reply to @heathert "wow everything has gone so quiet, how is everybody doing?" + (show)

Hi @heathert
I noticed that you are not following the MAC & Bronchiectasis group. That's probably why it seems that things have gone quiet. There has been activity in other threads in the MAC group just not on this one. If you follow the group, then you won't miss anything. Here's how:

1. Go to the MAC & Bronchiectasis group https://connect.mayoclinic.org/group/mac-bronchiectasis/
2. Cick +Follow (below the description of the group)
3. Select whether to receive an email each time a new post appears or to be notified about posts in an email digest only.
4. Click Update.

To learn more about following groups and optimizing how to use Connect, please see this step-by-step guide https://connect.mayoclinic.org/get-started-on-connect/

I hope you had a lovely Thanksgiving!

heathert | @heathert | Nov 24, 2017

In reply to @heathert "wow everything has gone so quiet, how is everybody doing?" + (show)

Hi Colleen, not sure how that happened, Am I a member now?
Thanks
Heather

Colleen Young, Connect Director | @colleenyoung | Nov 24, 2017

In reply to @heathert "wow everything has gone so quiet, how is everybody doing?" + (show)

Indeed. You are a member of the MAC group now, Heather. You can see which groups you follow on your profile page https://connect.mayoclinic.org/member/93086aa0097c55da17daa9122e2b08158c62b1427/

nick52 | @nick52 | Nov 24, 2017

In reply to @heathert "wow everything has gone so quiet, how is everybody doing?" + (show)

I am doing really good! I’m still waiting for my results of the MRI done this wednesday!

As far as my dysphagia goes. I am using SYMPLY THICK it is a gel instead of the powder. I am doing really good with thick (nectar) liquid. I haven’t had sputum since. It might worth a try for those of you who has pneumonia often. I am glad that I finally

found the cause of my bronchiestasis!

My last bronchoscopy lab test confirm no MAC or any other bacteria. All were negative on the lab report. I’m still waiting to see my doctor because my appointments were postpone.

We are leaving Dec 3 for Florida. It would be a pleasure to meet those of you who live in Florida.

Nicole

Terri Martin, Volunteer Mentor | @windwalker | Nov 25, 2017

In reply to @heathert "wow everything has gone so quiet, how is everybody doing?" + (show)

@nick52 Nicole that is wonderful news! Seems like all of your diligence in taking care of yourself is paying off. How long will you be in Florida?

heathert | @heathert | Nov 25, 2017

In reply to @heathert "wow everything has gone so quiet, how is everybody doing?" + (show)

thanks colleen I have no idea how I became a non member.

lindam272 | @lindam272 | Nov 29, 2017

This just came across my email from the COPDFoundation.org for anyone who is interested:

Dear BronchandNTM360social Member,

We are excited for the upcoming Town Hall teleconference on December 7, 2017 from 1-2pm EST, with expert speaker Dr. Kevin Winthrop from Oregon Health and Science University. If you have not yet registered, please click here to do so. This is a unique opportunity for community members to learn the basics about NTM and Bronchiectasis, as well as to ask an expert questions surrounding these chronic lung conditions. Please find the Agenda here to see all topics that will be discussed. The 2nd Town Hall will take place in early 2018. We will update you on the specifics when they become available.

Our focus this Autumn has been around transitioning from Summer to Fall and tips to help respiratory patients. There have been numerous blog posts and important questions added that we hope will be useful to you. We encourage you to log on and see what has been posted. If you have comments or information to share with your fellow patients, or if you are a healthcare provider or caretaker, please share your knowledge or experience.

Through the Winter months, we will discuss sleep and self-care, preparing for the holidays and how to tackle family gatherings while not pushing yourself too far. Do you have any tips to share with the community? Start the conversation!

If you have any questions about the upcoming events or anything else on BronchandNTM360social, please email us at Info@bronchiectasisandntminitiative.org.

Thank you all-we look forward to seeing around BronchandNTM360social!