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thank you (me too) :-)

I hope that you feel much better by the time of your appointment. 

Hi Cindy,

I remember you!! Yes, it's a small world. So glad you found us and it's great to hear from you.

Bronchiectasis and NTM have always been recognized within the COPD Foundation, but in the past couple of years the Bronchiectasis and NTM Association and the Care Center Network were recently added as a division of the COPD Foundation. As you mentioned, we are a great resource.  And the Coffee Break's are an added benefit. As far as Vanderbilt, they are part of our Care Center Network and they have a good team. 

I look forward to seeing you on more Coffee Breaks and post on our 360Social. Great to have a fellow Alpha here :)

near the end of October

Thank you for joining us today for a great presentation on the Care Center Network. Please let us know if you have any follow up questions. 😍

Hi Lucinda,
I just attended the zoom coffee break with Dr Flume and recognized you as the person who organized an Alpha 1 support group in Nashville several years ago. Small world!

I have severe bronchiectasis and have had 2 bouts of NTM for which I was treated at Vanderbilt ID and Pulmonology. BNTM has never been mentioned to me by anyone at Vanderbilt, yet I see that Vanderbilt is listed as a Center. I stumbled upon BNYM myself about a year ago. It’s a great resource—I feel very late to the party!

Best,

Cindy

You may have wondered: “Why would my pulmonologist want an Infectious Disease (ID) specialist involved in my care?”

It doesn’t necessarily mean you’re “more sick.” Sometimes it means your doctors want another layer of expertise.

An ID doctor may be brought in when:

🔹 A difficult or unusual organism is identified

🔹 NTM is suspected or confirmed
NTM treatment can involve multiple medications, potential drug interactions, side effects, and prolonged therapy.

If there is a question of infection vs. colonization A positive sputum culture doesn’t always mean that treatment is needed. Your clinical symptoms, imaging and microbiology determine the treatment plan.

🔹 The infection keeps coming back
An ID specialist may help determine why and whether additional testing or a different treatment strategy is appropriate.

🔹 Antibiotic choices become complicated- Resistance, allergies, medication interactions, or previous treatment failures may require specialized infectious-disease input.

🔹 Treatment causes significant side effects- The ID doctor can work with the pulmonologist to balance treating the infection while minimizing medication toxicity.

Sometimes the most important role of an ID specialist is simply helping the team answer: Do we treat, what do we treat with?

Has your pulmonologist ever referred you to an Infectious Disease specialist? Did having an ID doctor involved change your treatment plan, or understanding of your cultures? Please share your experience below to assist other members on their journey. 

Eddie,

You are most welcome. Let me know if you have any other questions. As mentioned above, I hope you are getting the right treatment. I assume that your healthcare provider has reviewed the right type of airway clearance for you?  A doctor/ a health care team will suggest specific airway clearance depending upon the results of your chest cat scan. Would suggest to get a referral from your pulmonologist to a respiratory therapist for advice if you haven’t already done so. Preventative measures , going forward are far better than dealing with ongoing curative measures. 

Thank you very much.

I'd replace my cell phone with a Star Trek Communicator.  Brandon, please "make it so!"  🖖

Eddie M,

Hello!  Let me start by reviewing a few terms: Bronchiolectasis → the smaller airways/bronchioles are widened or damaged; bronchiolectasis may appear as tiny widened airways on a chest cat scan. This condition is sometimes associated with mucus plugging, inflammation, or small-airway disease.

Bronchiolectasis can be relevant because it may reflect small-airway involvement and can occur alongside the classic bronchiectasis pattern.

Another common term is Bronchiolitis-  an inflammation and swelling of the very small airways deep inside the lungs, called the bronchioles.

Bronchiolectasis = the small airway is widened.
Bronchiolitis = the small airway is inflamed.

These two conditions can occur together. Inflammation and repeated infection involving the small airways can contribute to structural damage and bronchiolectasis over time.

I had bronchiolitis years ago and was totally exhausted. I was treated with antibiotics and steroids at that time; it took several months to start to feel like myself again.

I hope that you are getting the treatment you need and that you will feel better soon. 

I have been diagnosed with bronchiolectasis, not bronchiectasis. I can find almost nothing about this condition.  Are there  other members with this condition?  I'd like to start a discussion.  Thanks

Ron,

I am glad you are making some improvement. When is your next scheduled appointment? 

Join Professor James Chalmers as he shares key highlights from the European Respiratory Society Congress, including the latest research in bronchiectasis and NTM. Held in Barcelona, Spain, from September 5–9, 2026, the ERS Congress is the world’s largest respiratory meeting and a leading global forum for advances in lung health, science, and clinical care. This year’s program highlights breakthrough research, global collaboration, and a strong focus on patient partnership, with an emphasis on shared decision-making and co-creating better care.

The core theme, "United for better breathing – partnership between patients, clinicians and researchers,"

Living with bronchiectasis or NTM lung disease can bring a lot of questions. You do not have to navigate them alone.

Join National Jewish Health experts on Saturday, September 19, for a one-day conference created for patients, family members and caregivers.

Attend in Denver or from home by Zoom and learn more about treatment, airway clearance, medication side effects, nutrition, test results and everyday care.

Need to take a break or miss a session? Recordings are included with registration, so you can watch the presentations later at your own pace.

Learn more and register.

I called my doc and they gave me antibiotics. I have not gone in for a visit, as there is some improvement, albeit the improvement is very small/slow.

Ron,

Bad air quality and humidity can take a toll on our lungs.  Do you have a doctor's appointment scheduled so they can listen to your lungs and examine you? Your lungs take time to heal, but you should feel better soon.  Recovery time varies from individual to individual, but you should feel better after a month if the antibiotic worked. Do you have other comorbidities that may be impacting you?  I think a doctor's visit or phone call to discuss this is worth checking out.

Tim,

Lol! Were you really going to procrastinate on reading our posts?  Have a good day!

Happy Labor Day! Today we recognize and celebrate the contributions of workers in every field of work. 
Lung health and labor are deeply connected. Exposure to smoke, dust, fumes, and other pollutants on the job can increase the likelihood of developing bronchiectasis, NTM lung disease, and other chronic lung conditions.  In honor of Labor Day, help us spread the word about the importance of occupational protections and safety equipment so we can build a healthier future for all workers. Enjoy your day! 

Brandon and Katie, I'll read these later...

Kidding! You both make great points about the importance of taking the time to take care of yourself and telling yourself that it is ok to rest.

I also agree that if you love ice cream, it's important to never procrastinate getting yourself some! 🍨 😂

After an exacerbation, how long does it take most of you to return to your steady state? My most recent flare-up occurred on a very humid day, when the air quality was terrible (including smoke from the Canadian fires). This was back in July. After a round of antibiotics, I am patiently waiting to return to my "normal."  I have stepped up my airway clearance efforts but improvement is very slow.  At least this is my first flare-up this year (perhaps that is due to my starting Brinsupri).  Thank you all in advance for your thoughts.

Brandon,

Great post- thank you!!!! The line in your post -“ Sit your butt down and rest for a while” is something I procrastinate.  Many of us have difficulty giving ourselves permission to rest even though our bodies may be screaming out for rest at times. After many years since diagnosis, I still feel bad/ guilty about not being very productive at times; I need to be reminded by others that it is okay to rest as needed. “Resting as needed “ is as important as medications, exercise, good nutrition and more. :)))

Tori,

Glad that all is working out for you. When is the trip? :) 

I did find that I can bring distilled water in the ship. I purchased a collapsible basin and travel dish soap. I also bought extra nebulizer cups so I will only have to clean and reuse once.

How do YOU protect your lungs at the doctor’s office?

Going to the doctor is important—but for those living with Bronchiectasis and/or NTM, sitting in a crowded waiting room with people who are coughing can feel a little stressful. 

So let’s learn from each other! What infection-control precautions do YOU take when visiting a doctor’s office?

Do you… 😷 Wear an N95 or KN95?

🚗 Wait in your car until the exam room is ready?
🕐 Try to schedule the first appointment of the day?
🪑 Look for a less-crowded area of the waiting room?
🧴 Carry hand sanitizer?

Open doors with a paper towel or other protective cloth? Use a paper towel to push the elevator button? 

Do airway clearance immediately after the office visit?
📞 Ask the office about their procedures for patients with respiratory symptoms?
🤔 Or do you have another strategy that helps you feel safer?

Do you feel comfortable asking a doctor’s office to help reduce your exposure to respiratory infections—or do you worry about being perceived as “difficult”?

Please your experience below. What works for YOU might be exactly the tip another member of our community needs. Thank you in advance for sharing your experiences. 😍

Tim,

Hello! I am glad that you found a portable nebulizer that works for you- easy to clean is certainly a bonus, and the price point is good. Thank you for sharing this information with the community. 

I purchased the portable made by Geerok and find it to be more effective for me than the plug in model provided by my healthcare provider.  Cost was about $60.  It’s rechargeable and easy to clean , etc.  The key is to follow the manufacturer guidelines and instructions carefully.  Bottom line, I’m happy with it and it’s great for traveling.

Welcome, Tom! Please keep us updated, and let us know how we can support you as you navigate this journey. Be sure to stay consistent with your airway clearance routine, as it can play an important role in helping with mucus removal. I’m a respiratory therapist, so please don’t hesitate to reach out if you’d like any tips or suggestions.

Hello! I hope that you will take a few minutes to complete the form above. Assisting our team to identify any gaps in knowledge will help you and other members of our community. Your creative ideas / suggestions will be truly appreciated by Alyssa. This is your time to speak up, get your voice heard! 

I am so looking forward to this upcoming Coffee Break, listening to Dr.Flume speak about the BNTM Care Center Network! This is a dream of mine cometh true- that patients now have access to 54 BNTM specialty centers throughout the USA. Most patients no longer have to travel a great distance via airplane to get the treatment they deserve. The number of centers continues to expand- hopefully, there will be a center right near you if one doesn’t already exist. 
The BNTM community has witnessed great growth over the past decade and so much more will unfold over the next decade. 

I think this is a great opportunity to reintroduce myself. My name is Alyssa, and I am the Assistant Director of Education and Community. I lead many of our behind-the-scenes educational initiatives, and we have some exciting things launching by the end of the year that I’m looking forward to sharing when the time is right.

One of my favorite parts of this work is getting to know each of you and hearing your stories. Your experiences help me identify gaps in education and inspire creative ideas for projects that better address your needs and priorities.

If you are looking for ways to get involved, please fill out this form, and I’d be happy to help you find the right fit. If you’d like to connect directly, please email me at alyssa@bronchandntm.org.

https://copdfoundation.jotform.com/252755152952057

We’re looking forward to our upcoming Coffee Break with Dr. Flume.

If you’re interested in finding a CCN site in your area, visit our directory here: https://social.bronchandntm.org/directory/find-a-bronchiectasis-and-ntm-center

Tom,

Thank you for sharing tips on what worked for you while you were taking Ethambutol. We all have different bodies, metabolisms- we must take the time to figure out the best schedule of medications when we begin our treatment. 

Welcome to all members, new and old. As Brandon suggests, pull up a chair and participate in whatever way works best for you. If you like to review content and make comments fine, if you hear to learn and not comment on posts- that is fine as well. We just want to remind you that you are not alone on the BNTM journey. 

I took 3 ethambutol 7 days a week for 12 months when I had MAC.  I found that if I took them too close together it upset my lower tract. Waiting a minimum of 1 hour between doses helped and but some days that was not enough. I ended up spacing them at least 2 hours apart., problem solved. 

Thank you, Lucinda. The ID doctor recommended by the pulmonologist is young and very smart plus she does not mind going toe to toe with the insurance company. Yes, they are a great team. 

Evan,

Hello!  You are most welcome! I am so glad you are being treated at the top research centers, UNC and NIH.

Achromobacter respiratory infection can cause:

• Increased or persistent cough
• More sputum/phlegm, sometimes thicker or discolored
• Shortness of breath
• Fatigue or unusual exhaustion
• Fever or chills
• Chest discomfort
• Wheezing
• Weight loss, particularly with a prolonged infection
• Occasionally coughing up blood (hemoptysis)    What type of symptoms are you having on an ongoing basis?  I had Achromobacter in the past that was colonized in my lungs, but it was not an infection. 

Finding Achromobacter in sputum does not automatically mean it is causing an active infection. It can sometimes represent colonization, particularly in people with damaged airways. Colonization means that there are bugs/ microorganisms present, but they do not cause major symptoms or lung damage. Whether it is actually causing disease generally involves looking at symptoms, changes in sputum, lung function, CT findings, and whether the organism is repeatedly isolated. With an infection, microorganisms/ bugs invade tissues and cause an inflammatory response- this is when a person shows signs of illness as listed above.

Tom,

We're glad you found us, too.  Please keep us posted on how you are doing with Arikayce, Nuzyra, and clofazimine. I am glad that your symptoms are mild. What type of airway clearance are you doing?

Welcome to 360social, EvanR.

Welcome, Tom K. It sounds like you have a good team working for you!! 

Thank you, Vinny.

Thank you for the reply. I am being treated at the UNC Bronchiectasis center and at NIH, so I am receiving excellent medical care.

i am mostly looking for how others feel on a regular basis and for support; to be part of a support group. And to see how others have dealt with Achromobacter.

EvanR,

Hello! Welcome to the community! I am sorry it has taken years to clear your infection. Are you nearby any NTM Research Center, BNTM Care Center? These centers specialize in BNTM and keep on trying different drugs in hopes that they can get something to work for you. The link to the BNTM Care Center Network is below. https://social.bronchandntm.org/directory/find-a-bronchiectasis-and-ntm-center

Symptoms vary from individual to individual. Many factors come into play-age, nutritional status/ weight, other comorbidities, stress and more.

Weather changes such as high humidity, barometric pressure changes affect some individuals but not everyone. Fatigue has been my major symptom over the years. Below is a blog article on Energy Management, if fatigue is getting in the way of your everyday life. https://social.bronchandntm.org/articles/blog/Energy-Management-The-Key-to-Living-with-NTMBronchiectasis
Other symptoms can include increased sputum production, wheezing, shortness of breath,( some only on exertion) , low grade temperature , mild night sweats, lower appetite and weight loss. Many of these symptoms can be well managed.

There is a Bronchiectasis severity scale that some pulmonologist use, others do not. Predicting how many exacerbations an individual will have and the disease progression can change over the years. 
Preventative measures such as airway clearance and infection control measures can lessen symptoms and the reoccurrence of infections. We are here for you- I hope others chime in to answer your question about symptoms. Have a pleasant evening. :) 

Hi y'all,

I am new to this group. I was diagnosed with Bronchiectasis in 2012. I have frequent exacerbations, many due to Achromobacter which was found in 2022. In spite of multiple rounds of antibiotics which it is supposedly susceptible to, I have not been able to get rid of it.

I do not know anyone else with this disease and have a hard time knowing if how I feel physically is normal, or if it is getting worse. Although my pulmonologists specialize in Bronchiectasis, they have not been great about explaining how my symptoms compare to others and what to expect in the future.

Sorry, I can't type... the cruises have provided me with distilled water....