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Life Expectancy with cavitary MAC

Posted by mch (Marycarol) @mch, Dec 16, 2022

Just diagnosed with cavitary MAC (2 cavities at 1.6cm). Frantically educating myself. My pulmonologist agreed to let me “wait and see” for 6 months in response to my concerns about drug side effects, especially vision and hearing. But from what I’ve read so far, I’m now close to panic that delaying is a bad idea….that the meds are inevitable….and the potential for disease progression due to cavities is significant. I’m coming to terms with accepting the life impacts of the treatment and the realization this may be a life long battle due to high rates or recurrence. But I desperately want to know if my reality is I should take steps and plan for a much shorter life. I’m 66 now. Is this disease fatal? Does it reduce life expectancy? The only data point I have found so far says 5-year mortality is 25%! Never thought I’d wish for cancer as a better option. I’m afraid to know the answer, but l’m overwhelmed by fear at this point.

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mch (Marycarol) | @mch | Dec 17, 2022
In reply to @suethenanny "I'm on the "Big 3", I have tinnitus and some mild hearing loss, my other side..." + (show)
@suethenanny

I'm on the "Big 3", I have tinnitus and some mild hearing loss, my other side effects are manageable as I take mine at night before bed. Don't be scared by the treatment, we're all here for you. I hope you are doing Aiway Clearance as that is No.1 in the battle IMHO.

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I hardly cough and when I do, nothing comes up. Had to have a bronchoscopy to get my initial diagnosis (which probed positive). as I could not produce a sputum sample at all. Right now I have no other symptoms, either. My doctor has not said anything about any airway management techniques. I assume that’s because he doesn’t see need at this point. However I see many, many comments here about its importance and it seems to be a universally applied. Should I question my doc?

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2 replies
suethenanny | @suethenanny | Dec 17, 2022
In reply to @mch "I hardly cough and when I do, nothing comes up. Had to have a bronchoscopy to..." + (show)
@mch

I hardly cough and when I do, nothing comes up. Had to have a bronchoscopy to get my initial diagnosis (which probed positive). as I could not produce a sputum sample at all. Right now I have no other symptoms, either. My doctor has not said anything about any airway management techniques. I assume that’s because he doesn’t see need at this point. However I see many, many comments here about its importance and it seems to be a universally applied. Should I question my doc?

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It may be worth a discussion regarding saline nebulisation but you can Google airway clearance and get information from the likes of National Jewish, NTMir, COPD Foundation and their YouTube clips and webinars. There are different techniques and we each find the one that works for us.
I don't have much of a cough or sputum but airway clearance is lung hygiene. Like cleaning your teeth.

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1 reply
BlueSplashGirl/ Carolyn | @bluesplashgirl | Dec 17, 2022
In reply to @mch "Carolyn - thank you so much for sharing all the details of your efforts. Being proactive..." + (show)
@mch

Carolyn – thank you so much for sharing all the details of your efforts. Being proactive and doing everything I can is critical for me to feel like I have some degree of control over how my life will go. I'm not someone who can just let the doctor do all the heavy lifting and cross my fingers it will all work out.
I've had periodic acid reflux for years and am concerned that may be a key to why I got this as I don't fit any of the other characteristics that seem to be relevant to cavitary MAC – Not male, never a smoker, no other lung conditions, no immune deficiency issues that I'm aware of…I watched a YouTube video put out by National Jewish Health on Acid Reflux. First I ever heard that PPI drugs like Nexium address acid production but NOT reflux per se, but it makes sense. Something as simple as elevating my bed seems like a no brainer!
Can I ask…how often do you replace the filter in your LifeStraw bottle?

Thanks, MC

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Hi MC, I replace it every 3 months. I had my water tested for Mycobacterium through TapSimple (or is it SimpleTap?) and it came back after several months negative. I still clean my shower heads and stay away from garden dirt without a mask. I mow with a mask, too. Elevating your bed 4” may be the ticket. Good luck and keep us posted.

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miloandlisa | @miloandlisa | Dec 19, 2022
In reply to @suethenanny "It may be worth a discussion regarding saline nebulisation but you can Google airway clearance and..." + (show)
@suethenanny

It may be worth a discussion regarding saline nebulisation but you can Google airway clearance and get information from the likes of National Jewish, NTMir, COPD Foundation and their YouTube clips and webinars. There are different techniques and we each find the one that works for us.
I don't have much of a cough or sputum but airway clearance is lung hygiene. Like cleaning your teeth.

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I was just at National this past spring. They emphasized how important airway clearance/nebulizing is and should be done every day.

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northland | @northland | Dec 19, 2022

Hay MaryCarol, I was diagnosed over 5 years ago. I'm still here! Doing all that I can on my end with air way clearance, exercise, raised head of bed, take baths, boil water drinking water or use Lifestraw, mask when needed, etc. I did have surgery last year. I'll be getting off of meds next month,,,be persistant come what may, you'll get through it!

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becleartoday | @becleartoday | Dec 20, 2022
In reply to @mch "I hardly cough and when I do, nothing comes up. Had to have a bronchoscopy to..." + (show)
@mch

I hardly cough and when I do, nothing comes up. Had to have a bronchoscopy to get my initial diagnosis (which probed positive). as I could not produce a sputum sample at all. Right now I have no other symptoms, either. My doctor has not said anything about any airway management techniques. I assume that’s because he doesn’t see need at this point. However I see many, many comments here about its importance and it seems to be a universally applied. Should I question my doc?

Jump to this post

Airway clearance is like flossing our teeth. Even if we don’t see anything stuck between our teeth we still floss. It breaks up the biofilm and prevents gum disease.

Likewise, it’s important to break up the biofilm in our lungs. When I bring out my daily “weapons” – my vest, saline, and Aerobika, I’m letting those bacteria, fungi and viruses know who’s boss!

Best,
Linda Esposito

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