Healthy with MAC: What's your follow up like?

Posted by rmason @rmason, Feb 3, 2022

I am curious if there are any members who have been diagnosed with MAC who are otherwise healthy with few if any symptoms who are not being followed regularly by a specialist? Or have been advised that they only need to be seen if there is an exacerbation of symptoms?

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@tessa2

Thank you Bee. I will ask pulmonologist about airway clearance. Wonder why he’s never brought it up. Kathy

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I think they don’t bring it up because the may not “know”. I read on a post that doctors do most of their training in hospital settings. Mac patients rarely get seen outside of clinics. Thank goodness for the websites I’ve been referred to by this blog. So far, as an rn, I feel comfortable following my ID doctors plan. This is because of what I’ve read here . And I have the framework and questions that need to be asked and addressed. It’s still a process, but thank you all.

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@crepass

I think they don’t bring it up because the may not “know”. I read on a post that doctors do most of their training in hospital settings. Mac patients rarely get seen outside of clinics. Thank goodness for the websites I’ve been referred to by this blog. So far, as an rn, I feel comfortable following my ID doctors plan. This is because of what I’ve read here . And I have the framework and questions that need to be asked and addressed. It’s still a process, but thank you all.

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Thank you Bee

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@sueinmn

Asthma, allergies, hyper-reactive airway disorder and Bronchiectasis. I also am at increased residue to workplace exposures to paper dust, printing plant chemicals, asbestos, and childhood exposure to asbestos (we used to play in contaminated slag piles)
Sue

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Sue, I’m curious. How do you happen to be exposed to “printing plant chemicals?” Don

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@thumperguy

Sue, I’m curious. How do you happen to be exposed to “printing plant chemicals?” Don

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Well, I used to say it was in my blood since conception since my Mom worked in the industry fo over 40 years. But I actually worked in a printing plant through college, and continued to moonlight there in the busy season for years - until I had kids. Sometimes I came home coated with inky dust when the trimmers and air handling systems malfunctioned. Interesting enough, most of my Mom's coworkers who smoked got emphysema, the rest chronic bronchitis, and unfortunate few like Mom and her close friend got Bronchiectasis.

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Sue,
I thought emphysema and chronic bronchitis were more serious conditions than Bronchiectasis.

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@cavlover

Sue,
I thought emphysema and chronic bronchitis were more serious conditions than Bronchiectasis.

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Here comes my dreaded answer - It depends.
Each disease has its own path, and all can be serious. And, as far as I know, none is curable except in some cases chronic bronchitis, if the trigger is found and removed before you progress to other issues.
The problem with emphysema is that it typically occurs in lungs already compromised by smoking or another irritant and because the person already has a cough, the increasing severity and shortness of breath may be ignored until the disease is well progressed, and halting progressive damage is difficult.
There are people who have chronic bronchitis (inflammation of the airways) for many years without progression to emphysema or another disease.
Then there those of us with bronchiectasis, which can be mild, moderate or severe, and stable or progressive - often depending on our ability to avoid infection. Or other diseases that share our lungs. Some, like my Mom, have it for many years and die in their 80's of other causes. Others may have such progression as to need lobes removed, or even a lung transplant.

Sue

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@pjas972j

Hi, I'm 67 and had to make that same decision. I decided on traditional Medicare with a Plan G supplement. I am so thankful I did. I am currently trying to get an appointment with NJH and would not be able to easily do so if I had an Advantage plan. The other thing I am learning is that your Plan D (for prescriptions) is also critical. Being on Medicare consumes a lot more of our budget than when my husband and I were both employed. Using an insurance broker to help you pick a plan is a good idea. Check your medical group to see if they have seminars that explain Medicare. That will help you wade through the details. 🙂

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You are so right. People need to understand what they are getting. I have original Medicare - and I have medigap policy. Not the cheapest option, but I can self-refer to any doctor that takes Medicare. I never see a bill. I have some serious issues now and I self-referred to Mayo without worrying if insurance would pay.

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@vic83

You are so right. People need to understand what they are getting. I have original Medicare - and I have medigap policy. Not the cheapest option, but I can self-refer to any doctor that takes Medicare. I never see a bill. I have some serious issues now and I self-referred to Mayo without worrying if insurance would pay.

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Exactly! Just paid $10 for the prescription after an urgent care visit with tests. The bill says $490, and it's all covered - just had to find someone in the Blue Cross network - had 11 choices in my smallish county.
Sue

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