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Tell us how you "Live Life Fully" with Bronchiectasis and MAC
Trying to start a positive, upbeat discussion, please.
When first diagnosed with Bronchiectasis, many of us have never heard of it. We get little info from the doctor, and turn to the internet for information. Bronchiectasis, with or without accompanying infections, creates many challenges in managing the disease and its symptoms. Sometimes the diagnosis comes after a long journey through the health care system. And sometimes it comes on top of other chronic health issues or diseases. It can be downright scary.
Years ago my PCP, pulmonologist, and ID Doc each told me "This is a disease you will always live with, but are unlikely to die from, take reasonable precautions and go out and live your life. " Recently Dr Jennifer Honda said the roughly same thing in her Webinar:
Many new members come to Connect asking, essentially, how can I live with this disease?
You can help! I invite those who have managed to stay active with family, job, hobbies, exercise, volunteer work, travel, etc to tell us how you overcame the initial shock and are managing an active life day-to-day while handling airway clearance and health precautions. Y'all hear enough from me - I'll share my story after you share yours.
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Hi Sue,
The question you are asking of us hit the spot with me as it will allow me to come to terms with my condition and move forward and truly enjoy my retirement. The challenges I have faced have been complicated, and the BE/NTM, COPD/severe Emphysema diagnosis in 2022 followed by Stage 1A IDC Breast Cancer caused enormous stress just as I was retiring after 50 years of employment. At The Weil Cornell Pulmonary Practice I have received decent care with vert smart Pulmonologist and NP and ID Doc, who were able to come up to speed quickly with my situation. However I've had many challenges along the way such as delayed GE diagnosis that really was the root causing 80% of chronic coughing . So for someone who has been around for a few years or more with BE/NTM and all around breathing issues, I've decided to see myself as "stabilized" doing the best that I can with the treatments and information that we have available to us at this time. The key for me has been finding this group in late 2022 plus decent pulmonary care and CONSISTANT AWC. So far I have been able to remain active but have had to leave the world of competitive tennis for fun ladies doubles. Onward and Forward!
Flo
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3 ReactionsI am just reading these comments after being diagnosed with BE in 2023 and MAC on 6/8/26 after being sick with all the symptoms for 2 months. I retired ( as planned) on 6/18 and grateful this disease did not make me change that timeline. I see many people not having to do the big 3 ( which have me freaked out) but my pulmonologist didn’t suggest anything but the meds. I do trust him and he has been my doctor since 2012. Thank you
I am happy to read so many success’s stories
My mum suffers from bronchiectasis and has increased lung scarring. Her cough is out of control and she is consistently breathless. Does anyone have any suggestions?
Sto seguendo la terapia rifampicina etanbutolo azitromicina da due mesi. Qualcuno sa dirmi per esperienza se ha successo? E dopo quanto? Ho un infezione da Mycobatterio Chimarae.
Grazie
@shayshay123 How long has she had BE.?
Was she diagnosed with BE early on or did the diagnosis come late after having symptoms of it that weren't recognized ASAP?
What does she do on a daily basis for herself? What is she able to do on a daily basis for herself?
All are important to understand for you, for her or any possible suggestions.
Barbara
@galec What you have said happens to many of us who do not realize our doctor is not up to date on all that should be done to help ourselves with BE.
Please review many of the threads on this Mayo to understand all that I am sure you have on your mind about the diagnosis and MAC.
I went to National Jewish Hospital/Clinic because my pulmonologist did not appear to be knowledgeable and did not suggest nebulizing or air way clearance methods when it was confirmed I had BE.
Have you researched air way clearance methods for clearing bronchiectasis mucus, on the internet?
Hopefully others will come to your post and give you more information.
Barbara
@galec I was diagnosed with MAC on 5/22/26 and currently taking the 3 meds. I have met with my lung doctor since the diagnosis but have appointment on 6/24. Been on Brinsupri since 11/22/25 but experiencing major hair loss. Stopped this medication on 6/20/26. I'll talk with the doctor tomorrow re this decision. The Brinsupri definitely cut down on my mucous. Anyone else experience hair loss and suggestions for new growth.
@anniegirl0903 You may wish to ask your questions about Brinsupri and side effects in this discussion:
https://connect.mayoclinic.org/discussion/brinsupri-follow-up/
I’m looping back to the question on living life fully with bronchiectasis and MAC
I’ve been diagnosed with BE for 5 years now. Both MAC and a fungal infection showed up on my initial bronchoscopy. I’ve been treated for the fungal infection but not MAC, even when it showed up in three consecutive sputum samples. Nebulizing once a day and doing airway clearance to get the gunk up helped more than anything to that point.
The first 4 years living my best life happened when I respected my limits, paced myself and did a lot of airway clearance before social activities. I did some walking daily.
This last year I’ve done much better after a different antibiotic to clear a chronic H. Influenza infection. Living my best life now still requires pacing myself, but I tolerate so much more! I’m back at the gym for strengthening and working on endurance for hiking. Helps to have a goal - modest hikes of 4-6 miles in the Sierras 😊 this fall. I’m able to socialize with friends without coughing spells, and able to be a helper to friends in need.
Life is different - takes planning and maintenance and acceptance of change- but life is good!
Leslie
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5 Reactions@blm1007blm1007 hi Barbara hope you’re well
Mum was diagnosed relatively quickly. She’s now had it for 10 years. But we are told she has lung scarring even though her infections are under control. The main issue is her cough is not letting her sleep and her breathlessness is out of control. She doesn’t help herself either because she just seems like someone who has given up. She stopped work and is now mainly at home. Feels embarrassed to leave the house in case her cough episode begins. She can care for herself, but she’s clearly in discomfort because of the breathlessness and the coughing. Do you have any strategies that could help, anything that she can take? Your help is very much appreciated.