MAC mycobacterium avium patient, worrisome blood up episode

Posted by rand11 @rand11, 2 days ago

Hello everybody, I'm new to this forum.

Last night I had a few "blood up" episodes that volume-wise are pretty worrisome. I'm wondering what can be done about this. Maybe a months long course of antibiotics?

Some history....
+ I'm 80 yrs old male, good health (other than MAC), lean, workout daily - weights and CV.
+ I was diagnosed with MAC 12 yrs ago (mid 2013) after I reported minor blood in mucous during a yearly physical. I went through abundant testing and a bronchoscopy.
+ I'm heterosexual, immune system is good, the specialist MD I saw had a research interest in antitrypsin, I was tested for that and turned out to be low in it due to being a genetic phenotype SZ. That's my "terrain" vulnerability for getting MAC. Antitrypsin is a little researched biochemical, the deficiency of which can lead to lung and/or liver diseases. As far as I know, I don't have any liver problems.
+ I was put on a 13 month course of three antibiotics: ETHAMBUTOL,CLARITHROMYCIN, RIFAMPIN ending mid 2014. I tolerated these pretty well (some patients don't).
+ For over 10 years, up until recent months, my MAC problem seemed largely dormant, with only a few episodes of minor blood in mucous, usually after doing situp exercises. Three times a week I use an exercycle for 30 minute CV ranging in 75 to 80 percent of my maximum heart rate (168 bpm), with no problems.
+ A few months ago, I started getting more frequent blood in mucous, my specialist MD put me on a one week course of azithromycin (started 10mar2025, which temporarily ended the blood in mucous), and he ordered a CAT scan.

The CAT scan results: Impression:
Multiple foci of bronchiectasis with tree-in-bud nodules. A new
cavitary mass in the superior segment of the right lower lobe is associated raising the question of infection, including
reactivation tuberculosis. Recommend clinical correlation and
consider bronchoscopy tissue sampling for histology.
Primary Diagnostic Code: SIGNIFICANT ABNORMALITY, ATTN NEEDED

+ The night of 2jun2025, I went to bed, was reading for a few minutes and had a bunch of blood mucous come up. I spit this up into a sink bowl, there was much more blood than I have ever experienced, this was followed by 3 or 4 more blood up episodes, all of them with an alarming amount of blood.
+ I stayed standing for a while since laying down seemed to invoke blood up, after things died down, I laid down and slept.

What great fun! Any thoughts on what's going or what can or should be done?

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@rand11 With your history and the strong possibility that you may have MAC again, the first thing I would suggest is to call your pulmonologist. Have you considered that?

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@sueinmn

@rand11 With your history and the strong possibility that you may have MAC again, the first thing I would suggest is to call your pulmonologist. Have you considered that?

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Yes. I've left two phone messages with no reply so far.
I want to gather information, alternatives, and maybe change specialists.

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My doctors have always emphasized the importance of the quantity of blood. According to them, if it’s more than 1/4 cup I should go to the ER.

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@rand11

Yes. I've left two phone messages with no reply so far.
I want to gather information, alternatives, and maybe change specialists.

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How about calling again and asking to speak with the nurse because you're ill? I cannot stress enough the importance of getting past the screener.

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My doctor advised the same - more than two tablespoons, go to the ER.

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