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?

@janeb

Dear Windwalker,
Thank you so much for your thoughtful suggestions. My name is Jane.

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@janeb Hi Jane, have you had a chance to read over @katemn‘s posts? There are many helpful things in her posts. It would take me all day to type out what I know about NTM/MAC. I am afraid you will need to do a lot of research on this disease. I will look and see if I can find the links again to some helpful sites. Try typing in NTM conference and see what you find.

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@janeb

Dear Windwalker,
Thank you so much for your thoughtful suggestions. My name is Jane.

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@janeb, Jane, I am sorry, I should have asked how savvy you are on the computer to do research, and also, if you have the energy to do it. I keep forgetting that some people may be pretty sick and are just not up to the challenge. Your first concern needs to be, are you going to the right doctor to handle this disease? I went for 15 years with not so great private practice doctors; and did not get proper care and treatment. As a result, I have lost 60% of my lung tissue.

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@tdrell

Janeb….welcome to the group…..Ling123 gave an excellent response….she and l have if l recall the same risk factor….living in Wisconsin where …along with other parts of USA…higher exposure to NTM ,,,which is the major category MAC falls under. Where do you live?? tell us about the Doctor you go to?
the tests done to conclude your diagnosis….your symptoms that led up to the testing?
In the meantime, if you go online…go to NTMinfo.org and start the education about this condition..by looking at the videos…
at Youtube.com and type in ntm.conference at national Jewish 2015 and the ones from 2016…..these are 45 minute sessions geared for lay folks on varying topics taped at the workshops given at the specialty respiratory clinic National Jewish health in 2015 and 2016 .
some of this group went to a workshop in May in Washington DC….and somewhere in these emails there are the links to that!!
and to further overwhelm you with resourses….In Denver on saturday OCtober 21st there will be another all day workshop at NJH for people with NTM….no doubt for the majority not able to attend…the videos of the conference will be presented on line a few months later.
tdrell

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@jkiemen Hi Jo Ann, I think patients not being able to tolerate the triple antibiotics is only one of the reasons that these drugs are not automatically prescribed. For one thing, there is no guarantee these drugs will work 100% of the time for everybody. In the meantime, they could have negative effects on other organs such as liver and kidney, and possible eyes, when used long-term. For many people with MAC/MAI, the cons outweigh the pros. I was give the option to go on the drug treatment or not. I chose not to and my doctor did agree with me because I’m generally healthy and can live a normal life without decreased lung function. At this point, there is no reason for me to go on the drug treatment and risk damage to my other organs. But things could change and the decision could be reversed if my condition worsens to the point where without the drug treatment my quality of life would be negatively affected, or if my life is on the line.

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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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@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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@janeb Dear Jane, I wish I had a definitive answer for you, but I don’t. In fact, no doctors will either. This type of infection is the most bewildering of all of the diseases I know of. There are doctors at National Jewish Health that claim that they can cure a small percentage of patients. The cure is known as a ‘conversion’. I have watched my lung function decline a little bit each year for the last 15 years. That has been disheartening. I doubt it was from mac eating away my lung tissue. I have a condition called ‘Bronchiecstasis’ which is a progressive lung disease where one slowly loses lung tissue. People with MAC tend to also have bronchiectstais, and vise-a versa. I saw where you stated that you are 85 yrs old. MAC is a slow growing organism so there is a chance it will not colonize in your lifetime. If I were you, I’d ask about getting a prescription for the nebulized saline and use it twice daily. Rest, good nutrician, and exercise are key. You can call NTM Info & Research at 305-667-6461 and request that they mail you info about MAC (NTM). You can also visit their website and read info at http://www.ntminfo.org

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@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

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@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

 

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@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.

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@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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