(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.

heathert | @heathert | Dec 17, 2019

@@sueinmn I hope this lasts longer for us all, Its a really great machine so far. Good luck Heather

heathert | @heathert | Dec 17, 2019

In reply to @judyhodgern "That is fantastic news!!—-Did you have a cavity in your lung when diagnosed??? are you not..." + (show)

@judyhodgern Hi I do not have shortness of breath, fantastic, and I do cough occasionally, maby from the Bronch or my allergies but not like when I had MAI raging through my lungs. I had a few cavities and they have now closed but left scaring unfortunatly. So yes pretty much symptom free, phew. I hope you will be soon too. Are you also on the big 3 antibiotics.Take care and look after yourself after the surgery. Heather

vetnyregr | @vetnyregr | Dec 19, 2019

In reply to @judyhodgern "That is fantastic news!!—-Did you have a cavity in your lung when diagnosed??? are you not..." + (show)

Do you have Dr. Mitchell for your surgeon? I will have my right lobe removed by him in April. Pray you are doing fine. Is it a long and painful recuperation? Please add any guidance you have for me. Best wishes for speedy health!!!!!!!

heathert | @heathert | Dec 20, 2019

In reply to @ginak "Thankfully, I don’t have very bad coughing unless it’s allergy season, (May and September for me),..." + (show)

@ginak Oh my goodness how awful, so glad you are now cancer free!

anniepie | @anniepie | Dec 21, 2019

In reply to @anniepie "Thanks very much Heather @heathert -- you take care too" + (show)

Have a good and safe Christmas and New Year everyone, and wishing you all of the healing you need
Annie

chinasmom | @chinasmom | Dec 21, 2019

In reply to @anniepie "Have a good and safe Christmas and New Year everyone, and wishing you all of the..." + (show)

@anniepie, thank you so much. I am hoping there is healing for all too!
You are loved for all you do.
Becky

alleycatkate | @alleycatkate | Dec 21, 2019

@anniepie Best wishes to you also!! Hope everyone has a happy holiday and good health in the new year!! Kate

heathert | @heathert | Dec 21, 2019

Merry Xmas and a Happy New Year to all, and heres to better cures in the very near future! Take Care Heather

america | @america | Dec 21, 2019

In reply to @heathert "Merry Xmas and a Happy New Year to all, and heres to better cures in the..." + (show)

Merry Christmas to all! Health and healing! Hope and joy!!

jasmine321 | @jasmine321 | Dec 29, 2019

In reply to @judyhodgern "That is fantastic news!!—-Did you have a cavity in your lung when diagnosed??? are you not..." + (show)

Hoping for a speedy recovery @judyhodgern. I will have surgery on March 11, 2020. Surgeon will remove my right middle and lower lobes. Had MAC in 2012 and 2018. When I was diagnosed with Bronchiectasis in 2012, my right middle lobe was affected. In 2018, infection went down further to my lower lobe. I am really scared. I don’t want to be on antibiotics the rest of my life and I don’t want the infection to eventually destroy my entire right lung that’s why I decided to go for the surgery. Surgeon will plan for VATS (laparoscopic) but there’s a 50% chance that he will do open surgery. Please keep me in your prayers.