I had stable mild bronchiectasis with no cough for years, just watched by regular pulmonologist. When I started having dry cough it my PCP pushed to evaluate (good on him!). Went thru trials of meds/ inhalers & gerd meds to no effect & ended up in bronchiectasis program at NYU Langone in NYC where I've now had chest therapy & have cultured positive for MAC. Am now having productive cough but only when I do airway clearance & occasionally at night. So I don't know if the change from dry to productive cough is from learning airway clearance or MAC progressing or both. Altho, the sputum is getting thicker with more tiny white bits vs just clear. I understand it's common to have dry cough w bronchiectasis at least at first. But my specialist team + chest therapist stressed even w mild symptoms, getting on the regular airway clearance to at least stay stable & they said sometimes there can be some reversal of the bronchiectasis (some people here have experienced that). Decisions about treating the MAC will be in coming weeks.
This is all so confusing. I had never heard of any of this until a couple months ago. I do not understand why my pulmonologist did not order any test other than a chest X-ray for three years. Is that common or malpractice?
This is all so confusing. I had never heard of any of this until a couple months ago. I do not understand why my pulmonologist did not order any test other than a chest X-ray for three years. Is that common or malpractice?
@rlynnnh So sorry you are part of this group due to having bronchiectasis. You found a good place however with loads of info and support.
Having bronchiectasis makes us susceptible to getting NTM, which has many variants including MAC (Mycobacterium avium complex). NTM stands for non-tuberculosis mycobacteria. NTM is ubiquitous in the environment including water pipes, soil which is why we need to be careful. Some people here fight it with and without certain antibiotics, commonly referred to the Big 3. If you'd like to learn more about this please visit the thread link: https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/
Some people arrived here because they developed a cough and then diagnoses of bronchiectasis and NTM followed. Others have bronchiectasis only. Bronchiectasis and NTM are uncommon diseases, although, there seems to be more of it likely due to imaging technology, improved health care etc.
FYI, my bronchiectasis does not show up on an X-ray. That might be the case with you, which is why doctor did not order a CT scan along with the fact that you are not bothered by daily phlegm. My diagnosis took serval years to pinpoint.
Most of what I have learned about these diseases and treatments are from online support communities like this one, not from my pulmonary care team. In fact, I often educate them! I understand why you are upset. It's all very shocking to learn. I think you'll find the more educated you become about your disorder the more in control you'll feel. I hope this helpful.
I think many pcps and general pulmonologists don't know much about bronchiectasis and MAC, which was the case with my general pulmonologist. And now the knowledge is advancing more rapidly. I was first diagnosed by CT scan in 2012 after an X-ray ordered by my PCP at the time was flagged for further evaluation. My PCP called it "idiopathic" since it was stable & asymptomatic. I didn't even get followed by a pulmonologist for years, & when I did, he wasn't aggressive about the developing chronic cough since it was mild. It was my now-PCP who insisted on finding a cause & because of him that I wound up with bronchiectasis/ MAC specialists.
I think many pcps and general pulmonologists don't know much about bronchiectasis and MAC, which was the case with my general pulmonologist. And now the knowledge is advancing more rapidly. I was first diagnosed by CT scan in 2012 after an X-ray ordered by my PCP at the time was flagged for further evaluation. My PCP called it "idiopathic" since it was stable & asymptomatic. I didn't even get followed by a pulmonologist for years, & when I did, he wasn't aggressive about the developing chronic cough since it was mild. It was my now-PCP who insisted on finding a cause & because of him that I wound up with bronchiectasis/ MAC specialists.
Did you ever think that since your pulmonologist who is supposed to be a specialist, did nothing more for you?
How did you find a bronchiectatis specialist?
Actually a bit complicated. It was my GI doc who referred me to the bronchiectasis team after me remarking that my PCP suspected my pulmonologist was not being aggressive enough about my cough. I also have Crohn's disease (an autoimmune GI disease) and they share some patients & consult w each other because us Crohnies are more likely to have bronchiectasis. It's not understood why.
There are now several bronchiectasis centers around the country. If you search here or post an inquiry for the best doctors -- include what area of the country you live in -- you'll get help. I'm very grateful for the generosity with good info here.
Actually a bit complicated. It was my GI doc who referred me to the bronchiectasis team after me remarking that my PCP suspected my pulmonologist was not being aggressive enough about my cough. I also have Crohn's disease (an autoimmune GI disease) and they share some patients & consult w each other because us Crohnies are more likely to have bronchiectasis. It's not understood why.
There are now several bronchiectasis centers around the country. If you search here or post an inquiry for the best doctors -- include what area of the country you live in -- you'll get help. I'm very grateful for the generosity with good info here.
Hi. This site is helpful for finding a doctor experienced in bronchiectasis: https://www.bronchiectasisandntminitiative.org/Research/Registry/Bronchiectasis-and-NTM-Research-Registry#map
Just as there are oncologists who specialize in specific types of cancer, there are pulmonologists who specialize in specific lung conditions. Finding a pulmonologist and/or an infectious disease doctor who are experienced in bronchiectasis will make all the difference in the world for your treatment as will learning techniques for effective airway clearance techniques (ACT). Best of luck to you!
Its not uncommon if you are stable, MAC isnt treated. I was dx 5 years ago and was stable. Then i got pneumonia, was on antibiotics for 10 days and had a CXR which looked good. I kept taking my temp which was low grade 99 but a concern. My pulmonologist wanted to do another CXR but i wanted chest ct which showed another area of congestion. I was admitted for 5 days of IV Zosyn. An infectious disease reviewed my xrays and told me i need MAC tx not antibiotics!
Why didnt radiology pick that up? I toold my doctor i only want chest CT which are more sensitive. I started on MAC tx a month ago
This is all so confusing. I had never heard of any of this until a couple months ago. I do not understand why my pulmonologist did not order any test other than a chest X-ray for three years. Is that common or malpractice?
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This is all so confusing. I had never heard of any of this until a couple months ago. I do not understand why my pulmonologist did not order any test other than a chest X-ray for three years. Is that common or malpractice?
@rlynnnh So sorry you are part of this group due to having bronchiectasis. You found a good place however with loads of info and support.
Having bronchiectasis makes us susceptible to getting NTM, which has many variants including MAC (Mycobacterium avium complex). NTM stands for non-tuberculosis mycobacteria. NTM is ubiquitous in the environment including water pipes, soil which is why we need to be careful. Some people here fight it with and without certain antibiotics, commonly referred to the Big 3. If you'd like to learn more about this please visit the thread link: https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/
Some people arrived here because they developed a cough and then diagnoses of bronchiectasis and NTM followed. Others have bronchiectasis only. Bronchiectasis and NTM are uncommon diseases, although, there seems to be more of it likely due to imaging technology, improved health care etc.
FYI, my bronchiectasis does not show up on an X-ray. That might be the case with you, which is why doctor did not order a CT scan along with the fact that you are not bothered by daily phlegm. My diagnosis took serval years to pinpoint.
Most of what I have learned about these diseases and treatments are from online support communities like this one, not from my pulmonary care team. In fact, I often educate them! I understand why you are upset. It's all very shocking to learn. I think you'll find the more educated you become about your disorder the more in control you'll feel. I hope this helpful.
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2 ReactionsI think many pcps and general pulmonologists don't know much about bronchiectasis and MAC, which was the case with my general pulmonologist. And now the knowledge is advancing more rapidly. I was first diagnosed by CT scan in 2012 after an X-ray ordered by my PCP at the time was flagged for further evaluation. My PCP called it "idiopathic" since it was stable & asymptomatic. I didn't even get followed by a pulmonologist for years, & when I did, he wasn't aggressive about the developing chronic cough since it was mild. It was my now-PCP who insisted on finding a cause & because of him that I wound up with bronchiectasis/ MAC specialists.
Mycobacterium Avium complex. It is a cousin to TB.
Did you ever think that since your pulmonologist who is supposed to be a specialist, did nothing more for you?
How did you find a bronchiectatis specialist?
Actually a bit complicated. It was my GI doc who referred me to the bronchiectasis team after me remarking that my PCP suspected my pulmonologist was not being aggressive enough about my cough. I also have Crohn's disease (an autoimmune GI disease) and they share some patients & consult w each other because us Crohnies are more likely to have bronchiectasis. It's not understood why.
There are now several bronchiectasis centers around the country. If you search here or post an inquiry for the best doctors -- include what area of the country you live in -- you'll get help. I'm very grateful for the generosity with good info here.
Thank you. Yes, I am happy to have found this site.
Hi. This site is helpful for finding a doctor experienced in bronchiectasis:
https://www.bronchiectasisandntminitiative.org/Research/Registry/Bronchiectasis-and-NTM-Research-Registry#map
Just as there are oncologists who specialize in specific types of cancer, there are pulmonologists who specialize in specific lung conditions. Finding a pulmonologist and/or an infectious disease doctor who are experienced in bronchiectasis will make all the difference in the world for your treatment as will learning techniques for effective airway clearance techniques (ACT). Best of luck to you!
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2 ReactionsMargie, what is MAC tx?
Pulmonologists should order chest CT every year. I only had chest xrays which did not pick up congestion in my left lower lobe.