Hemoptysis

[Jenny Fenner]

Six years ago I was diagnosed with MYCOBACTERIUM AVIUM COMPLEX, a "cousis" of Tuberculosis. The only symptom I have ever had is the hemoptysis. The disease shows itself in CT scans and in sputum cultures that grow the MAC. Does anyone else have this disease and does it manifest itself in the same way. I have had probably 8 instances of coughing up blood - two in the last 48 hours. I would appreciate hearing from someone else who also has Non Tuberculosis Mycobacteria.

[Davy9]

Jenny,

Mycobactium Avium is an atypical tuberculosis strain. It is not TB but, as you note, a cousin. You should be getting treated for the infection and it is not a simple infection to treat. The hemoptysis occurs when the active site infection breaches vascular beds and/or the coughing associated with the infection rakes bronchial tissues to the point of bleeding. Bronchiectasis is a condition of airway cavitation. This is where infections or sometimes foreign objects erode pockets into an airway. These pockets vary in number and in severity. Bronchiectasis is a condition that can occur with many types of infections.

Again, if you have an active MAC "A" infection it should be getting treated with the correct antibacterial drugs. You will find that teaching hospitals will be most interested in your situation because the incidence is uncommon.

[Jenny Fenner]

Can you tell me what your background is regarding NTM. Yes, I am being treated with medications locally, and also periodically by a pulmonologist and an infectious disease physician. I also visit National Jewish Medical Center in Denver yearly. On my last visit, they encouraged me to have my right upper lobe removed. After visiting back home with my two doctors and a friend who is a thoracic surgeon, my decision was to not have this done at this time.

Thank you for your reply. I appreciate it.

Jenny Fenner

[Davy9]

Hello Jenny,

I am a retired Respiratory Care Practitioner and I have worked with a number of the atypical myobacterial infections in the course of my career. I wanted to be certain that you were under treatment since you did not mention this in your original post. I have worked quite a bit with patients suffering from bronchiectasis.

I'm curious to learn more about the recommended RU lobectomy. I assume one group of Docs said go while the others said wait? Is your infection located primarily in that lobe? When you work with organisms that cavitate they can sequester themselves from blood flow which limits the access blood bourn antibiotics have. This happens in surface wounds as well but there they can be lavaged, debrided and topical antibiotics applied. In surface wounds you can do anything necessary to treat a stubborn infection (or stubborn organism) because you can easily get to them.

In the lungs access becomes a problem. Usually antibiotics can get to lung infections because of the lungs generous blood supply. That in conjunction with normal lung defenses can control and cure most lung infections. But cavitating organisms, like yours, pocket themselves in the lungs keeping many away from the antibiotics intended to kill them. Inhaled, aerosolized antibiotics can sometimes get to where they are needed. Docs can access fairly deeply into the lungs with bronchoscopes for direct treatments. When it comes to debriding in the lungs it requires surgical approaches. No doubt you understand that the removal of the one lobe will not tremendously impact your breathing if the balance of your lungs are in reasonable health.

You sound like you have a good understanding of your situation. I can try to answer any questions you might have but you seem to have some excellent resources at hand already.