Diagnosed with Protracted Bacterial Bronchitis (BPP)

Just an update and a thank you to all who gave me advice on finding a doctor. I finally got to see Dr. Pamela McShane at UT Tyler yesterday. It was a 10 hour round trip, 7 hour visit at the lung center, and a hotel stay, but SO worth it!

I was told I had Bronchiectasis in September, 2022 after pushing doctors to find a diagnosis for a cough that began in late 2021. I was given very little guidance from my Pulmonologist. He took one culture that was negative for everything. He told me to get a green Acapella and to take 500mg of Azithromycin MWF.

My journey was a lot like so many I read on this site. My PCP told me he heard a wheeze. His solution was for me to take deep breaths daily - I already ran, walked and did yoga. The pulmonologist told me it was allergies and sent me to the ENT. My journey to diagnosis ended with me insisting that my Pulmonologist do another CT scan and Bronchoscopy because my health had deteriorated so much that slow exercise walking was becoming very difficult.

I write all of this to say that we must push, research, question doctors, listen to our bodies and find groups like this one. This group led me to understand that taking long-term Azithromycin might limit my ability to treat MAC if needed. I discontinued against my doctor’s wishes after eight months. This decision was affirmed as the right one yesterday. It led me to nebulizing with saline - something my Pulmonologist wouldn’t prescribe. It led me to Mucinex and NAC (something else my pulmonologist said no to - all of my other doctors said to do it). It led me to proper sterilization of my tools. It led to combo products that reduce clearance times. It led me to get out and walk, do yoga or get on my rowing machine even when I don’t want to. It led me to realize I am not alone in this. Most importantly it led me to Dr. McShane.

It turns out I do not have overt bronchiectasis. I have one or two suspicious spots. I more likely have Protracted Bacterial Bronchitis (PBB). She is part of an international team beginning to track patients with this. It is thought this is a precursor to Bronchiectasis. It really doesn’t change much for me immediately. I still must do airway clearance, sputum samples, CTs….all the things to prevent permanent lung damage and further infection.

Without this group I could have gone my whole life with an incorrect diagnosis. I could have missed meeting the doctor who saw the real cause. Very little is known about treatment of this in adults but she is on the cutting edge of this. I’m excited to be a part of helping her learn more about it. This gives me purpose in this crazy, out of the blue chronic cough that came into my life!

I just want to encourage everyone to do what it takes to see a doctor who truly understands Bronchiectasis. Many really good pulmonologists just don’t see many cases of this and do not have the information to help their patients. Listen to your gut. Advocate for yourself. Ask questions and more questions because doctors are human. They only know what the tests say and what we tell them. As all of you know Bronchiectasis is very different from person to person.

I’m planning to stay in this group. If anyone else has been diagnosed with PBB I would love to hear from you. Thank you to those I consider friends even though we have never met! I cannot tell you how much your experience, encouragement and words of wisdom mean to me!❤️