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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 13, 2017

@charleycroch , Hello Charley, and welcome to our connect support group. I love your positive attitude. You are absolutely right; our mental state has a lot of bearing on how well we will do in battling a chronic illness. I was depressed for awhile and felt doomed after my diagnoses with multiple lung issues, one being MAC positive, and staring at the possibility of a lung transplant. My husband gave me a mental smackdown. He told me that if I don't change my thinking, then I will go down with the ship. That was eight years ago. Aside from taking the best care of myself as I can, I do not let this disease consume my persona. Aside from taking my meds and advocating on this forum, I pretty act like I do not have anything medically wrong going on. Others that are doing mentally well with their disease have said the same thing. Although it was next to impossible to do when I was hacking from sun-up to sundown. Now that the coughing is under control, I am able to have times where I am not reminded that I have an illness. Charley, I am so glad that you got a handle on your situation, keep up the good work.

REPLY
ling123 | @ling123 | Nov 13, 2017

@windwalker and @charleycroch I so agree with you about the attitude being a critical factor in dealing with chronic illnesses. I have gone through roller coaters myself since being diagnosed with bronthiectasis and MAC 3 years ago. Every time I think about bronchiectasis being incurable and the possibility of my lungs getting weaker as I grow older, I can feel the fear rearing its head and making my mood darker. But then I think about how lucky I actually am comparing to others who have suffered a lot worse. I have no breathing problems. I play tennis 2-3 times a week. I live a normal life except hacking up thick phlegm a few times a day. What do I have to complain or feel down about? We do everything we can to make each day count and live as happily as we are able. That is all we can do. There are things that are out of our control. Worrying or feeling scared about them won't help us. I know it is easier said than done. But see it as a job that needs to be done and we take it head on and get it done. Enjoy every single thing that this life has to offer and disease be damned (excuse my French).

REPLY
3 replies
Jo Ann K | @jkiemen | Nov 13, 2017
In reply to @ling123 "@windwalker and @charleycroch I so agree with you about the attitude being a critical factor in..." + (show)
@ling123

@windwalker and @charleycroch I so agree with you about the attitude being a critical factor in dealing with chronic illnesses. I have gone through roller coaters myself since being diagnosed with bronthiectasis and MAC 3 years ago. Every time I think about bronchiectasis being incurable and the possibility of my lungs getting weaker as I grow older, I can feel the fear rearing its head and making my mood darker. But then I think about how lucky I actually am comparing to others who have suffered a lot worse. I have no breathing problems. I play tennis 2-3 times a week. I live a normal life except hacking up thick phlegm a few times a day. What do I have to complain or feel down about? We do everything we can to make each day count and live as happily as we are able. That is all we can do. There are things that are out of our control. Worrying or feeling scared about them won't help us. I know it is easier said than done. But see it as a job that needs to be done and we take it head on and get it done. Enjoy every single thing that this life has to offer and disease be damned (excuse my French).

Jump to this post

You would be an excellent candidate for the nitrous oxide study then  If you can cough up sputum that is what they need to test
 
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 13, 2017
In reply to @ling123 "@windwalker and @charleycroch I so agree with you about the attitude being a critical factor in..." + (show)
@ling123

@windwalker and @charleycroch I so agree with you about the attitude being a critical factor in dealing with chronic illnesses. I have gone through roller coaters myself since being diagnosed with bronthiectasis and MAC 3 years ago. Every time I think about bronchiectasis being incurable and the possibility of my lungs getting weaker as I grow older, I can feel the fear rearing its head and making my mood darker. But then I think about how lucky I actually am comparing to others who have suffered a lot worse. I have no breathing problems. I play tennis 2-3 times a week. I live a normal life except hacking up thick phlegm a few times a day. What do I have to complain or feel down about? We do everything we can to make each day count and live as happily as we are able. That is all we can do. There are things that are out of our control. Worrying or feeling scared about them won't help us. I know it is easier said than done. But see it as a job that needs to be done and we take it head on and get it done. Enjoy every single thing that this life has to offer and disease be damned (excuse my French).

Jump to this post

@ling123, Beautifully said, Ling, even in french ; )

REPLY
ling123 | @ling123 | Nov 13, 2017
In reply to @ling123 "@windwalker and @charleycroch I so agree with you about the attitude being a critical factor in..." + (show)
@ling123

@windwalker and @charleycroch I so agree with you about the attitude being a critical factor in dealing with chronic illnesses. I have gone through roller coaters myself since being diagnosed with bronthiectasis and MAC 3 years ago. Every time I think about bronchiectasis being incurable and the possibility of my lungs getting weaker as I grow older, I can feel the fear rearing its head and making my mood darker. But then I think about how lucky I actually am comparing to others who have suffered a lot worse. I have no breathing problems. I play tennis 2-3 times a week. I live a normal life except hacking up thick phlegm a few times a day. What do I have to complain or feel down about? We do everything we can to make each day count and live as happily as we are able. That is all we can do. There are things that are out of our control. Worrying or feeling scared about them won't help us. I know it is easier said than done. But see it as a job that needs to be done and we take it head on and get it done. Enjoy every single thing that this life has to offer and disease be damned (excuse my French).

Jump to this post

@jkiemen Thanks, Jo Ann. I would have loved to be able to participate in the study. Unfortunately I'm still working full time and won't have enough time off to travel and stay for extended period of time to do this. However, I would be very interested in learning how everybody who will be participating thinks. Can't wait to read about it when someone from this group starts posting.

REPLY
boomerexpert | @boomerexpert | Nov 13, 2017
In reply to @boomerexpert "@windwalker oh for sure...HH is not known for its medical care for sure...such vaca spots are..." + (show)
@boomerexpert

@windwalker oh for sure...HH is not known for its medical care for sure...such vaca spots are not designed for year 'rounders...hope you can move in the near/mid future...

Jump to this post

@windwalker since it's a "we" makes it easier for sure! I'm a "me" so that drive not an option given my RA...glad you have access to great care in a way that's doable for you. Now to find a place within, say 45 mins, with decent docs for your other care!

REPLY
heathert | @heathert | Nov 13, 2017

@jkkiemen please let us know how it all goes, It sounds very promising, hope its successful!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 13, 2017
In reply to @charleycroch "Note from the Community Director This post was removed because it did not comply with Mayo..." + (show)
@charleycroch

Note from the Community Director
This post was removed because it did not comply with Mayo Clinic Connect's Terms of Use: https://connect.mayoclinic.org/terms-of-use/

We moderate this community to keep it free from posts that are medically inaccurate and contain any information, software, or other material of a commercial nature; contain solicitations or advertisements of any kind; or constitute or contain false or misleading indication of origin or statement of fact.

Learn more about why and how we moderate Connect: https://connect.mayoclinic.org/about-our-moderators-and-mentors/

Jump to this post

@windwalker, @ling123 and everyone on the MAC group. The above post was removed because it was spam. It violated Mayo Clinic Connect’s Terms of Use: https://connect.mayoclinic.org/terms-of-use/

We moderate this community to keep it free from posts that are medically inaccurate and contain any information, software, or other material of a commercial nature; contain solicitations or advertisements of any kind; or constitute or contain false or misleading indication of origin or statement of fact.

Learn more about why and how we moderate Connect and the vital role members play in keeping the community welcoming and safe: https://connect.mayoclinic.org/about-our-moderators-and-mentors/

However, I am thrilled that the discussion about attitude and health has ensued.

REPLY
ling123 | @ling123 | Nov 13, 2017
In reply to @charleycroch "Note from the Community Director This post was removed because it did not comply with Mayo..." + (show)
@charleycroch

Note from the Community Director
This post was removed because it did not comply with Mayo Clinic Connect's Terms of Use: https://connect.mayoclinic.org/terms-of-use/

We moderate this community to keep it free from posts that are medically inaccurate and contain any information, software, or other material of a commercial nature; contain solicitations or advertisements of any kind; or constitute or contain false or misleading indication of origin or statement of fact.

Learn more about why and how we moderate Connect: https://connect.mayoclinic.org/about-our-moderators-and-mentors/

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@colleenyoung Thanks for the warning, Colleen. It did cross my mind that it seemed odd that someone would post abou being HIV positive in our group.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 14, 2017
In reply to @charleycroch "Note from the Community Director This post was removed because it did not comply with Mayo..." + (show)
@charleycroch

Note from the Community Director
This post was removed because it did not comply with Mayo Clinic Connect's Terms of Use: https://connect.mayoclinic.org/terms-of-use/

We moderate this community to keep it free from posts that are medically inaccurate and contain any information, software, or other material of a commercial nature; contain solicitations or advertisements of any kind; or constitute or contain false or misleading indication of origin or statement of fact.

Learn more about why and how we moderate Connect: https://connect.mayoclinic.org/about-our-moderators-and-mentors/

Jump to this post

@colleenyoung , Thank you Colleen. I felt his post was odd also, I answered only because I did not want to discriminate as HIV patients tend to get the same MAC infections that we do. I chose only to focus on good the benefits of having a good attitutude.

REPLY
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