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Replies to "Has anyone had any cavities develop in their lungs? I have copd and Mac and after..."
Hi.
Well, I have cavities in my lungs. I have stage 4 pulmonary sarcoidosis (which means that my lungs will not recover. I had MAC abscessus years ago. My lungs were in pretty bad shape by the time I noticed a problem with my breathing. Doctors were amazing.
A recent sputum sample revealed a different MAC strain. I did a repeat sputum test and results are not in yet to confirm. I'm doing well. My sarcoidosis is in remission.
If you have cavities in your lungs I recommend that you take it seriously and follow your physicians recommendation for treatment. Medicines, nebulizers, whatever.
How is your breathing? Your energy level?
I was diagnosed with cavitary MAC last year and was set to have surgery at the Mayo Clinic in Rochester. During a pre-op it was discovered that the cavity had collapsed and surgery was no longer necessary. Everyone on this thread has great information. Consider a infectious disease doctor and follow through. Good luck and recovery to you.
Is it good for the cavity to collapse? I do not have a cavity but just trying to get as much info as I can. I have had bronchiectasis for 15 years and my breathing is getting worse. On oxygen 24/7.
When I was first diagnosed, I had a 1.1 CM cavity. My first two doctors recommended not to treat. Then I went to National Jewish Health for a third opinion, and they recommended treatment. By that point, my cavity had grown to 2.2 CM. Per NJH recommendation, I started airway clearance, but had to postpone Big 3 treatment because of the pandemic. Fortunately, my cavity remained stable (somewhat shrinking). I believe this was a function of my saline/nebbing routine. Also, my bacterial colony count dropped dramatically.
Since going on the Big 3 and Arikayce, my cavity has collapsed and turned opaque. It is now a calcified clump of scar tissue, which is a good thing as there is no chance of it turning back into a cavity . The clump is down to 1.1 CM and shrinking and I have tested negative for several months in a row (since adding Arikayce to the Big 3). The treatment has also been virtually side effect free for me, other than intermittent hoarseness.
@ina - If I remember correctly from earlier posts, you have trouble with the Big 3 antibiotics. That makes treatment of MAC more difficult for the doctors. Cavitary MAC is an indication of deeply seated infection, the hardest kind to treat.
If the pulmonologist has not already done so, they should be consulting with an Infectious Disease doctor to determine the next steps for you.
You might need to become an assertive patient, and get involved in your treatment decisions. Have you considered consulting at one of the centers that specialize in MAC like Mayo Rochester or National Jewish Health?
Sue