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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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maritomi | @maritomi | Aug 11, 2023

No my doctor hasn't really told me anything but I feel like I kind of do the airway clearance. I cough as hard as I can to bring up any mucus. It is usually clear. But I will look up airway clearance techniques and see what I can find. Thank you so much.

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Rick | @rstel7272 | Aug 12, 2023
In reply to @busybeans "While it might be hard, please try not to let this number live in your head...." + (show)
@busybeans

While it might be hard, please try not to let this number live in your head. At 13 years since diagnosis (and I probably had it for a year and half before that), I know this number to be only a statistic derived from some study that evidently doesn't apply to me. Maybe it doesn't apply to you either...

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5+ years for me and I have 8:30 tee time Monday

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1 reply
becleartoday | @becleartoday | Aug 13, 2023

Hi Maycarol,

Trying to maintain a BMI within normal range will go along way. It’s important that your body has the nutrients and calories it needs to fight infection.

Additionally, learning all you can about airway clearance is critical. The more tools we have in our airway clearance toolbox, the better.

If your health insurance allows it, you might also want to think about going to a bronchiectasis center like National Jewish Health or the Mayo Clinic. It’s always a good idea to go to a doctor who has decades of experience with bronchiectasis, especially when dealing with cavitary disease.

Although the bronchiectasis community is here to support you, you might also consider professional emotional support. Many of us also experience anxiety and at times depression. These comorbidities are common with this disease.

All the best,
Linda Esposito

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suzyqueue | @suzyqueue | Aug 13, 2023

At my diagnosis 6 years ago, I had a cavity. While waiting for bronchoscopy results which took 5 weeks, it grew to 10 cm without treatment. Side effects of meds was least of my worries. I started on big 3 and nebulizing Levalbuterol and saline solution and inhaled Arikayce. Took 4 years since it grew so much but finally shrunk to 4 cm with meds.

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maritomi | @maritomi | Aug 14, 2023
In reply to @kwi "Kudos to your primary care physician for finding your MAC. I was diagnosed almost 2 years..." + (show)
@kwi

Kudos to your primary care physician for finding your MAC.
I was diagnosed almost 2 years ago and and the pulmonologist referred me to an ID doctor. I was told by both to start treatment but declined since I didn’t feel sick. The good thing is the pulmonologist had me start nebulizing with 7% saline. I have since gone to NJH and have found a local pulmonologist specializing in bronchiectasis and MAC. People on this forum helped convince me how important airway clearance is and I nebulize 7% saline twice a day. When I went to NJH almost 9 months ago, my sputum did not show MAC. I know it can come back and I am careful to take precautions I have learned here. I have not taken antibiotics.
I do not have reflux but others here that do may have suggestions for you such as raising your bed higher.

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Thank you for your commment. I was told the hospital will give me a call to schedule and appointment with the ID doctor. It sounds like I should also try to speak with a pulmonologist. I'm really afraid to start antibiotics reading all the side effects it can cause. It's hard for me right now to consider any of that since the only symptom I have is a chronic cough and I don't feel sick. I will ask about the nebulizer and airway clearance.

Thank you again.

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2 replies
Rick | @rstel7272 | Aug 14, 2023
In reply to @maritomi "Thank you for your commment. I was told the hospital will give me a call to..." + (show)
@maritomi

Thank you for your commment. I was told the hospital will give me a call to schedule and appointment with the ID doctor. It sounds like I should also try to speak with a pulmonologist. I'm really afraid to start antibiotics reading all the side effects it can cause. It's hard for me right now to consider any of that since the only symptom I have is a chronic cough and I don't feel sick. I will ask about the nebulizer and airway clearance.

Thank you again.

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I started out with a chronic cough about 10 years ago. I waited 5 years too late for treatment.

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1 reply
cmb1 | @cmb1 | Aug 14, 2023

My cavity shrunk after 6 months approximately of meds. Could not believe that was possible! Had to stop then due to overall side effects. Several months later feeling good, greatfull, and sputum samples are negative for MAC for a while now! I wish you the best!

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Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 14, 2023
In reply to @maritomi "Thank you for your commment. I was told the hospital will give me a call to..." + (show)
@maritomi

Thank you for your commment. I was told the hospital will give me a call to schedule and appointment with the ID doctor. It sounds like I should also try to speak with a pulmonologist. I'm really afraid to start antibiotics reading all the side effects it can cause. It's hard for me right now to consider any of that since the only symptom I have is a chronic cough and I don't feel sick. I will ask about the nebulizer and airway clearance.

Thank you again.

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Hello, I think your idea of finding a pulmonologist is a very good one. I noticed in a previous post you said "I cough as hard as I can to bring up any mucus" That is not a very good way to do airway clearance because it can lead to sore ribs, sore throat and other issues, so it sounds like you could really use some coaching and a plan.

Here is a very helpful, but somewhat long video explaining the "whys" and "hows" of airway clearance from the World Bronchiectasis Conference a few years ago.


Now let's talk about antibiotics...NOBODY wants to be on them, but some of us need them. It might be interesting to read what some of our members have recently had to say:
https://connect.mayoclinic.org/discussion/macntm-is-different-for-everyone-treatment-might-be-different-too/
Also, since you posted under the topic of "Cavitary MAC" have you been told that there are cavities of infection in your lungs? The presence of cavities is one of the key reasons for deciding to treat with antibiotics, because it means the infection has been there for a long time, and may be hard to clear.
Sue

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1 reply
maritomi | @maritomi | Aug 15, 2023
In reply to @sueinmn "Hello, I think your idea of finding a pulmonologist is a very good one. I noticed..." + (show)
@sueinmn

Hello, I think your idea of finding a pulmonologist is a very good one. I noticed in a previous post you said "I cough as hard as I can to bring up any mucus" That is not a very good way to do airway clearance because it can lead to sore ribs, sore throat and other issues, so it sounds like you could really use some coaching and a plan.

Here is a very helpful, but somewhat long video explaining the "whys" and "hows" of airway clearance from the World Bronchiectasis Conference a few years ago.


Now let's talk about antibiotics...NOBODY wants to be on them, but some of us need them. It might be interesting to read what some of our members have recently had to say:
https://connect.mayoclinic.org/discussion/macntm-is-different-for-everyone-treatment-might-be-different-too/
Also, since you posted under the topic of "Cavitary MAC" have you been told that there are cavities of infection in your lungs? The presence of cavities is one of the key reasons for deciding to treat with antibiotics, because it means the infection has been there for a long time, and may be hard to clear.
Sue

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No I have not been told that I have cavities of infection in my lungs. I haven't been told much about any of this just that I have MAC. I will hopefully find out when I see the ID doctor. I found this site when I typed in MAC. I didn't know there were other types of MAC. But I'm finding that reading these post helps me understand a little about MAC.

Maritomi

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christielynn | @christielynn | Aug 16, 2023
In reply to @rstel7272 "I started out with a chronic cough about 10 years ago. I waited 5 years too..." + (show)
@rstel7272

I started out with a chronic cough about 10 years ago. I waited 5 years too late for treatment.

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I was diagnosed with allergies for 5 years of my chronic cough. Hindsight.

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