COPD/MAC/Bronchiectasis

Posted by lisajanemac @lisajanemac, Jul 16 1:42pm

I was diagnosed with COPD in 2006. I’ve had pneumonia several times, three of which I was hospitalized. Three years ago, I was once again diagnosed with pneumonia, but after treatment with antibiotics and steroids, I never stopped coughing up gunk from my lungs. Finally my GP referred me to a Pulmonologists. I was again treated with antibiotics and steroids, plus 2 inhalers, and had a CT scan, walk test and sleep test. Did a follow-up, three months later, and my pulmonologist said, “see you in a year”. I go back a year later and he runs more tests because I was still coughing up junk. Another CT scan and a sputum test and then a diagnosis of Bronchiectasis. He then prescribed oxygen at night and referred me to an Infectious Disease Specialist, Dr. Cobb. She ordered another CT scan, EKG, 4 sputum samples, a baseline vision test and two prescriptions for use in a nebulizer. Eight weeks later, after she received all the test results, I was (yesterday 7/15) diagnosed with Pulmonary MAC because the sputum test showed Avium Complex. So now I have COPD, Bronchiectasis and Pulmonary MAC. She prescribed long term antibiotics, Ethambutol, Rifampin and Azithromycin, and blood tests after three weeks. I follow-up with her in October and I see my Pulmonologist in two weeks. I’M OVERWHELMED !!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

No wonder you are overwhelmed! You have been through the wringer with what sounds like a delayed diagnosis for bronchiectasis and NTM disease. Not uncommon, by the way, as general pulmonologists did not see bronchiectasis and NTM disease as often as they see COPD, asthma etc.

Fortunately, you have found your way to a supportive knowledgeable community and you will get guidance and support here. There's a lot to say but I feel the most important thing right now is seeing a pulmonologist and ID doctor who specialize in bronchiectasis and MAC (a form of NTM) disease. Not sure where you are located. Sometimes travel is necessary. You can search for a bronchiectasis center near you by searching this link:
https://social.bronchandntm.org/directory/find-a-bronchiectasis-and-ntm-center .

Maybe you are at one of the centers but I wanted to double check.

With bronchiectasis, it's important to begin airway clearance if you have not already. Perhaps you can say more about how you are managing the bronchiectasis (BE) day to day. Regarding your CT scan, is there cavitation or nodules only? Sometimes this can be the difference between starting treatment and watchful waiting. This is why it's essential to be treated by someone who sees BE and NTM day in and day out.

I'm sure you'll hear from others here to offer suggestions and support. Maybe even someone from your geography.

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