Completed 16 months of the big 3. CT unchanged

@joyeous
Thank you for your expertise, very helpful! I am waiting to hear the answers to my questions from my pulmonologist. Would like to get those first; before switching over. That is my plan!

@pacathy,
It has always been my understanding that the ground glass appearance and mucus plugs were due to bronchiectasis. All of that mucus being in bronchioles provides a good moist environment for MAC to proliferate. The mucus plugs in your bronchioles cause bronchioles to stretch and they can lose the ability to get rid of mucus. MAC and pneumonia and emphysema, for those who have it, makes all of this worse. I never expected to have good clear lungs again. Just trying to keep down the infectious bacteria and viral things that make it worse. I welcome any input someone can give on this. Like all of you, I too am just looking for answers. The MAC is something we get because our immune systems are already compromised. Everyone is exposed to MAC from our environment, but their bodies don't get sick from it.

@joyeous Yes, the mucus plugs are often indicative of bronchiectasis. But the ground glass opacities are more general - they often appear as part of any sort of lung infection, and often clear up shortly after it is gone. Not all people with bronchiectasis/MAC have either opacities or mucus plugs.

Why do people with bronchiectasis (or Cystic Fibrosis or COPD) get MAC/NTM when the general population aren't affected? Because our lungs don't work properly to expel mucus. And mucus is the ideal warm, dark, moist breeding environment for the infection to grow. Some of us with bronchiectasis may be immuno-compromised as well, but that doesn't apply to everyone.

The best tool I have found for avoiding reinfection with MAC or Pseudomonas is to keep my lungs clear with daily airway clearance.

Do you practice airway clearance, use the new drug Brinsupri to reduce inflammation in your lungs, or take other steps to avoid infection?

FWIW, my CT reports from the start have all said the ground glass, trees in bud, and mucus impactions are suggestive of MAC. However, to the surprise of all, the sputum from bronch at Mayo was negative for it. I’ve had 2-3 more CT’s since then and the radiologists at Penn have also said the waxing/waning changes (trees in bud, ground glass, etc) are consistent with MAC and I even told the last tech to mention to radiologist that I don’t have MAC, just bronchiectasis.
I asked my pulmonologist about it and he said radiologists like to feel helpful by offering possibilities. I suggested they find a less dire diagnosis to offer.
It’s been over a year and I’ll get another in early November.

@yaduhyaduhsquawk
You will need your pulmonologist even if you do have an infectious disease doctor. So you will never actually switch over. It was my pulmonologist who diagnosed the conditions and he referred me to an infectious disease doctor who had expertise in treating MAC.

I think this question of what to look for in the CT scans is a vexing question for a lot of us. The way I understand it is that bronchiectasis involves permanent changes -- thickening, scarring, etc -- in the airways. My respiratory therapist told me the goal is to prevent further damage. So we hope that those signs show "no changes." But the CT may show "plugs" in the airways and/or inflammation which may come and go. These kinds of signs on a CT may (or may not) be treatable and temporary.

@joyeous Yes, the mucus plugs are often indicative of bronchiectasis. But the ground glass opacities are more general - they often appear as part of any sort of lung infection, and often clear up shortly after it is gone. Not all people with bronchiectasis/MAC have either opacities or mucus plugs.

Why do people with bronchiectasis (or Cystic Fibrosis or COPD) get MAC/NTM when the general population aren't affected? Because our lungs don't work properly to expel mucus. And mucus is the ideal warm, dark, moist breeding environment for the infection to grow. Some of us with bronchiectasis may be immuno-compromised as well, but that doesn't apply to everyone.

The best tool I have found for avoiding reinfection with MAC or Pseudomonas is to keep my lungs clear with daily airway clearance.

Do you practice airway clearance, use the new drug Brinsupri to reduce inflammation in your lungs, or take other steps to avoid infection?