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.

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)
@judyhodgern

That is fantastic news!!—-Did you have a cavity in your lung when diagnosed??? are you not coughing or SOB?? You probably aren’t but I was just wanting to see someone that is so fortunate of not having the organisms that you are able to be symptom-free. I would presume that is just wonderful!!. Thank you so much.
I just had surgery about four days ago and my right upper lobe Of my lung was removed so I’m hoping that it will help my symptoms and I will be a stopping coughing in the future and puttinga Me in remission for a couple of years🙏🏻🙏🏻🙏🏻🙏🏻 I am still in hospital at the Univ of Colorado. Laparoscopy but still major surgery.

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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.

REPLY
6 replies
migizii | @migizii | Dec 29, 2019
In reply to @jasmine321 "Hoping for a speedy recovery @judyhodgern. I will have surgery on March 11, 2020. Surgeon will..." + (show)
@jasmine321

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.

Jump to this post

You will be in my thoughts and prayers as you face this uncertain part of this journey. Take care and try to believe in a hopeful outcome❤️

REPLY
1 reply
vetnyregr | @vetnyregr | Dec 29, 2019
In reply to @jasmine321 "Hoping for a speedy recovery @judyhodgern. I will have surgery on March 11, 2020. Surgeon will..." + (show)
@jasmine321

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.

Jump to this post

Please keep us informed. I will have surgery in April for a right lung lobe removal. Prayers for you, Jasmine!

REPLY
1 reply
vetnyregr | @vetnyregr | 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)
@judyhodgern

That is fantastic news!!—-Did you have a cavity in your lung when diagnosed??? are you not coughing or SOB?? You probably aren’t but I was just wanting to see someone that is so fortunate of not having the organisms that you are able to be symptom-free. I would presume that is just wonderful!!. Thank you so much.
I just had surgery about four days ago and my right upper lobe Of my lung was removed so I’m hoping that it will help my symptoms and I will be a stopping coughing in the future and puttinga Me in remission for a couple of years🙏🏻🙏🏻🙏🏻🙏🏻 I am still in hospital at the Univ of Colorado. Laparoscopy but still major surgery.

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How are you doing, Judy?

REPLY
jasmine321 | @jasmine321 | Dec 29, 2019
In reply to @migizii "You will be in my thoughts and prayers as you face this uncertain part of this..." + (show)
@migizii

You will be in my thoughts and prayers as you face this uncertain part of this journey. Take care and try to believe in a hopeful outcome❤️

Jump to this post

Thank you @migizii

REPLY
jasmine321 | @jasmine321 | Dec 29, 2019
In reply to @vetnyregr "Please keep us informed. I will have surgery in April for a right lung lobe removal...." + (show)
@vetnyregr

Please keep us informed. I will have surgery in April for a right lung lobe removal. Prayers for you, Jasmine!

Jump to this post

Thank you @vetnyregr

REPLY
1 reply
irene5 Irene Estes | @irene5 | Dec 30, 2019
In reply to @jasmine321 "Hoping for a speedy recovery @judyhodgern. I will have surgery on March 11, 2020. Surgeon will..." + (show)
@jasmine321

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.

Jump to this post

When I am afraid I remember what someone told me years ago which is that God is closer to us than the paint on the wall in the room we are in - please feel that, be comforted by that, and know that you are in our thoughts and prayers. (Irene5)

REPLY
1 reply
america | @america | Dec 30, 2019
In reply to @jasmine321 "Hoping for a speedy recovery @judyhodgern. I will have surgery on March 11, 2020. Surgeon will..." + (show)
@jasmine321

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.

Jump to this post

Lots of prayers for you!! Hugs

REPLY
2 replies
jasmine321 | @jasmine321 | Dec 30, 2019
In reply to @irene5 "When I am afraid I remember what someone told me years ago which is that God..." + (show)
@irene5

When I am afraid I remember what someone told me years ago which is that God is closer to us than the paint on the wall in the room we are in - please feel that, be comforted by that, and know that you are in our thoughts and prayers. (Irene5)

Jump to this post

Thank you @irene5, I will remember that. Thank you for your prayers.

REPLY
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