1. < MAC & Bronchiectasis

MAI bronchiactasis

Posted by janeb @janeb, Sep 23, 2017

Just diagnosed, with no treatment recommended at this time. I am an 85 year old woman in otherwise good health. Any suggestion on how I should move forward with my life? What things to avoid? How to maintain my good health? What are my reasonable expectation of recovery?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 27, 2017

@janeb, There is another woman on our forum named Robyn, she is 89 yrs old and lives in the Bay area. She may be of help to you also, she is at @robynmar

REPLY
Jo Ann K | @jkiemen | Sep 28, 2017
In reply to @janeb "Dear Windwalker, thank you for your caring thoughts. Yes, I am working with a respected pulmanologist,..." + (show)
@janeb

Dear Windwalker, thank you for your caring thoughts. Yes, I am working with a respected pulmanologist, but he is not doing anything about my MAI. His plan is to watch and wait. But what am I waiting for-the MAI to do more damage? I never had symptoms that would indicate the presence of the MAI in the first place, just lung damage revealed by a cat scan. So am I waiting for more damage that is only revealed by a cat scan. Can MAI be eradicated? If that is possible, why not just bite the bullet and get rid of it once and for all and resume my life with somewhat impaired lungs. I need to know a lot more about this thing that has entered my body and I'm not getting answers. Can I ever be cured? Another question. Does what is left of your lung capacity respond to conditioning excercise. Can you "get Into shape" so to,speak?

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I agree. But how can we get treatments that are tolerable and used when it is better to treat? We need to find ways to get better treatments.

Jo Ann K

 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 28, 2017
In reply to @janeb "Dear Windwalker, thank you for your caring thoughts. Yes, I am working with a respected pulmanologist,..." + (show)
@janeb

Dear Windwalker, thank you for your caring thoughts. Yes, I am working with a respected pulmanologist, but he is not doing anything about my MAI. His plan is to watch and wait. But what am I waiting for-the MAI to do more damage? I never had symptoms that would indicate the presence of the MAI in the first place, just lung damage revealed by a cat scan. So am I waiting for more damage that is only revealed by a cat scan. Can MAI be eradicated? If that is possible, why not just bite the bullet and get rid of it once and for all and resume my life with somewhat impaired lungs. I need to know a lot more about this thing that has entered my body and I'm not getting answers. Can I ever be cured? Another question. Does what is left of your lung capacity respond to conditioning excercise. Can you "get Into shape" so to,speak?

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@jkiemen, Jo Ann, you can go to http://www.ntminfo.org to advocate for what you just said.

REPLY
janeb | @janeb | Oct 4, 2017
In reply to @kanaazpereira "Hello @janeb, We're glad you've joined us here on Connect. I'd sincerely encourage you to go..." + (show)
@kanaazpereira

Hello @janeb,

We're glad you've joined us here on Connect. I'd sincerely encourage you to go through some of the messages in the following discussion; you will find that it is an incredibly informative group:
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/
In the meantime, I'd like to introduce you to our Mentor, @windwalker and fellow members @boomerexpert @unicorn @jkiemen @heathert @irene5 @becky33 @ling123 @tdrell; would you join me in welcoming @janeb, and share your experiences and insights?

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Thanks

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