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I have also done rehab at 2 different place one at hospital and one at a physical therapy place both were poor there was nothing about nutrition  they did physical therapy for legs bands ride a bike arm bike and walking one breathing exercise these are excercises I was doing before do I found it no improvement I wish there was good program in my town but no one knows of any 

 Sorry about that. Please see link below: https://resources.bronchandntm.org/public/document-library/65/english/20260502013902.pdf

CJack,

Hello! I have tried Accupuncture in the past- I feel that it helped my fatigue the first time I tried it on a short term basis. It did not improve my fatigue on the 2nd time around.

Accupuncture is supposed to reduce muscle tension — Gentle acupuncture may help with chest, neck, and upper-back muscle tension that can accompany chronic coughing or labored breathing.

It may support quality of life — Some research has found improvements in patient-reported symptoms and overall well-being. I found it to be relaxing being in a wellness center with soothing music and a supportive staff.
You won’t know until you try it, what works for one may not work for another. I had another comorbidity when I tried it the 2nd time. Some insurance companies pay a percentage of the cost. Thank you for sharing your photo and being a part of our community. 

CJack,

Hello! I am so sorry to read about your pulmonary rehab experience at 3 different centers. I understand how frustrating this is since I was in your shoes in the past. I listed information of top rehab programs throughout the country in another post. Hopefully, you can contact a BNTM Care Center Network in your area to see if they can give you a referral to a quality Pulmonary Program in your area: https://social.bronchandntm.org/directory/find-a-bronchiectasis-and-ntm-center

CJack,

You are most welcome! Where are you located? I found a list of 10 centers: 

1️⃣ Cleveland Clinic — Cleveland, Ohio
Pulmonary rehabilitation includes bronchiectasis, and its specialized Bronchiectasis & NTM Program.

2️⃣ Johns Hopkins Medicine — Baltimore, Maryland
Its Center for Nontuberculous Mycobacteria and Bronchiectasis includes pulmonologists, infectious-disease specialists and physical therapists with airway-clearance expertise.

3️⃣ Emory Healthcare — Atlanta, Georgia
Pulmonary rehabilitation treats bronchiectasis, while Emory also has a dedicated Bronchiectasis & NTM Program.

4️⃣ UCLA Health — Los Angeles, California
Pulmonary rehabilitation includes bronchiectasis and other chronic respiratory diseases, with multidisciplinary support.

5️⃣ UC Davis Health — Sacramento, California
AACVPR-accredited pulmonary rehabilitation with supervised exercise, education, psychosocial support and nutritional guidance.

6️⃣ Mass General Brigham — Boston, Massachusetts
A major academic pulmonary system with pulmonary rehabilitation and specialized expertise in complex lung disease.

7️⃣ Stanford Health Care — Stanford, California
Pulmonary rehabilitation is available for a range of chronic lung conditions, including bronchiectasis and interstitial lung disease.

8️⃣ Northwestern Medicine — Chicago, Illinois
Pulmonary rehabilitation is available for complex respiratory conditions, including bronchiectasis and interstitial lung disease.

9️⃣ Mayo Clinic — Rochester, Minnesota
A multidisciplinary pulmonary rehabilitation program involving pulmonary specialists, respiratory therapy, rehabilitation and nutrition.

🔟 Columbia University Medical Center / NewYork-Presbyterian — New York, New York
Academic pulmonary and rehabilitation services.

You can contact a Care Center Network in your area to see if the center has a rehab program or if they can refer you to a quality program in your area. See link below: https://social.bronchandntm.org/directory/find-a-bronchiectasis-and-ntm-center

I have participated in 3 different PR programs; all were based in large medical centers. I’m sorry to report that all 3 programs fell far short of expectations. At the first program I attended I was the only enrollee and it was staffed by a lone exercise physiologist. He did what he could to try to provide a comprehensive program but, for obvious reasons, couldn’t do so adequately. The second program was structured and comprehensive but I found that the staff (mostly nurses) didn’t offer much expertise, nor were they particularly effective as teachers or trainers. I came away feeling I hadn’t gained much from 12 weeks, traveling 20-30 mins twice a week, to and from the program. The last program I tried was staffed by a respiratory therapist, a nurse, and an exercise physiologist. The focus was almost entirely on exercise but appeared poorly organized and provided minimal structure. There was no educational component, no group support, and no respiratory training. 

So what gives? I live in a large metropolitan area with abundant medical resources. It felt to me that these PR programs were a sidebar for these hospitals and that no one was taking seriously the vital service that they should provide. This has led me to explore the possibility of virtual programs. Have others had such disappointing experiences with pulmonary rehab? 

Cjack

I’m exploring acupuncture as a possible adjunct treatment for the energy deficit that we with bronchiectasis experience. Has anyone tried this? If so, was it helpful?

Cjack

Tried this link but it isn’t working.

Thank you so much for this list of virtual PR programs. You mentioned that there are 25 academic hospital-based programs around the country. Do you know how I can obtain a list of those?

Good point Alyssa. An older gentleman in my mothers neighborhood smoked while using oxygen and unfortunately burned their house down, killing both him and his wife. He likely lite the cigarette with the oxygen on. It's serious. 

As a respiratory therapist, I cared for several patients who smoked while using oxygen. Unfortunately, they sustained second-degree burns to their faces. It can be scary, and many people believe it will not happen to them because they are being “careful.”

Oxygen itself is not flammable, but it greatly accelerates combustion. Never smoke or use candles, matches, gas stoves, fireplaces, or other open flames near oxygen equipment including the nasal cannula. Keep oxygen away from heat sources, and follow all oxygen-safety instructions carefully.

We have a podcast that features Stephany sharing a pivotal moment in her journey. She recalls seeing someone her own age wearing oxygen with confidence. Because Stephany also used oxygen, she had often felt that people viewed her differently. Seeing someone embrace oxygen changed the way she viewed her disease and the need for equipment that could help keep her safe and healthy.

It’s a powerful and inspiring listen.

https://www.podbean.com/ew/pb-4runy-1add989

Hi Magg,

Wheezing can have several causes, including allergies and asthma. If you’ve noticed increased wheezing recently, changes in the weather may be irritating your bronchial tubes (the airways that carry air in and out of your lungs). Other potential irritants include dust, mold, harsh chemicals, and strong scents.

When the bronchial tubes become irritated, they may produce more mucus and increase inflammation. With bronchiectasis, the airways are widened and misshapen, which can make it more difficult to clear mucus. Some may hear or feel more wheezing because of the increased mucus but the sound will move or clear with some coughs.

As Katie mentioned, a bronchodilator, such as albuterol or levalbuterol, may help relieve airway irritation and wheezing. If you have been prescribed one, please use it as directed and monitor your symptoms, including any changes in your sputum. I also recommend performing your airway-clearance routine daily, as directed by your healthcare team.

You can review the exacerbation page for a list of symptoms to watch for including changes in:

• Cough
• Changes in the amount of mucus coughed up and/or texture
• Coughed up mucus is yellow/green
• Feelings of shortness of breath and/or ability to handle exercise
• Feeling tired
• Coughing up blood

If your wheezing worsens, you experience significant shortness of breath, or your prescribed medication does not provide relief, please contact your health care provider.

Hello! Today is World Oxygen Day. The COPD Foundation leads the effort to coordinate this day.

If you are a family member, friend, or caregiver for someone on oxygen, please focus on the person, not the equipment. The tubes and devices are part of their life, but they don’t define who they are. Engage in conversation, share laughs, and treat them as you always have.  Being around someone on oxygen can feel unfamiliar at first, but once you understand the purpose and normalize it in your mind, the anxiety fades. They’re still the same person — just breathing a little easier. Your openness and empathy can help both of you feel more comfortable.

Below is a video on Oxygen Basics:Oxygen360: Oxygen Basics

Magg,

Below is a blog article on Wheezing: https://social.bronchandntm.org/articles/blog/Wheezing-and-the-BronchiectasisNTM-Patient

Overview of Fall 2026 common allergens: Not everyone is sensitive to these common allergens. Understanding the key allergens is crucial for management.

• Ragweed Pollen — This allergen is prevalent across nearly all states and affects about 50 million Americans, often causing severe symptoms.
• Mold Spores — Mold levels rise in the fall due to decaying leaves and damp conditions, contributing to respiratory issues.  I assume your wheezing and medications are handled by your pulmonologist. I have taken Flonase for my allergies in the past, ( not endorsing a particular product). Please let us know if you have any questions. 

I have allergies snd asthma 

Magg,

Hello! Have you had pulmonary function tests recently? Do you respond to the bronchodilator when you have a pulmonary function test? Do you think it maybe weather related or allergies/ seasonal changes by you? I use Levebuteril HFA inhaler as needed. 

🍂 WELCOME, OCTOBER! 🎃 Hello to all community members! 

October brings a new opportunity to focus on what helps you feel your best. 💙 For those living with BNTM, October can be a wonderful time to check in with yourself and your care routine:

🍁 Keep up with your airway clearance routine. It is okay to take an occasional break but realize the importance of the function of airway clearance.  This is a preventive measure, so mucus does not remain stagnant in your lungs.

🍁 Move: Gentle movement can help support strength and energy. It's a nice time of the year to get out for a walk- cooler temperatures, less humidity. October 9th is National Movement Day- I hope that you will join this activity.

🍁 Rest: Give your body permission to rest when you need it without feeling guilty.

🍁 Connect: Reach out to someone who understands your journey.

🍁 Prepare: Cooler weather is a good reminder to review medications, appointments, and your infection-control habits. Also, schedule your annual immunizations if you haven't already. Review the basic infection-control measures you learned throughout the pandemic, and choose which ones still work for you.

🍁 Notice the small victories you have made over the past month. Having a chronic condition requires work on our part. We all have setbacks but applaud yourself for the small victories you worked hard to achieve.

We will kick off the month with World Oxygen Day on the 2nd. This day raises awareness and acceptance of the need for oxygen and its benefits for some individuals. Medicare Open Enrollment begins on the 15th. Our Monthly Coffee Break will have a presentation on this often-confusing topic

Other educational topics that we will focus on throughout the month:  Energy Management Practices and how to be most efficient with your body/ love your lungs. We will also discuss how fall foliage and other seasonal items, such as firepits, may impact our lungs.

Lastly, we will review the basics of Health Literacy. Palliative Care. Please let us know if you have any specific questions on these topics throughout the month.  There will be a quiz at the end of the month…only kidding.  We are here to support you and to provide you with pertinent knowledge from credible sources.

Hello everyone!  

Our next BronchandNTM360social Coffee Break is Thursday, October 15th, 2026 @ 2:30pm EST. Joining us this month is Emily Wicheloe, Director of Education at the Medicare Rights Center, who will present information about the 2027 Medicare Open Enrollment, including Medicare coverage information for people with chronic lung conditions and tips for accessing coverage. 

We will open the call fifteen minutes early, so please join us if you wish to speak casually with us or other community members. Any health-related discussion will be held until the start of the meeting. 

The meeting registration link is here: BronchandNTM360social Coffee Break Registration

Looking forward to seeing you soon!

Hello! To prepare for World Oxygen Day on 10/2, I wanted to share a few tips on Oxygen Safety.  Some people do not understand the role of oxygen for a person with a chronic lung disease. Oxygen therapy isn’t a sign of weakness — it’s a sign of strength. It means the person is actively managing their health and choosing to live fully. Think of it like glasses for vision or a hearing aid for sound — it is another form of support. It delivers extra oxygen to help the body function better.

Modern oxygen therapy equipment is designed to be safe when used correctly. Below is an image with a few tips for anyone on oxygen therapy or a caregiver for someone on oxygen therapy. Please discuss more safety tips with your healthcare providers. Do you have any questions about oxygen therapy?

I signed on to join the Day of Movement on October 9th. I hope that you will join us. Any type of movement is better than inactivity. Movement is good for both our bodies and our emotional wellbeing. 😍

LaRosa,

Hello! I am so glad to read that you are experiencing improvement with Brinsupri. We are grateful for you sharing your results with the community. Have a pleasant evening. 😍

Thank you so much for your reply.

Thank you so much for your reply.

Thank you so much for sharing this information.  I have seen much improvement, so if this is as good as it gets, I'm still very grateful.

I am grateful for the Brinsupri, too.  I wish you all the best.

Thanks for your reply.  I will wait until the new year to ask my pulmonologist about going up to 25 mg.  My insurance is complicated and I would have to get the new dose approved.  I have to change insurance companies anyway in January.  We shall see.  I wish you all the best.

Please do not be shy in writing a comment- no one is looking to judge , by any means what someone writes. We are “ all in this together “ to assist one another on our health journeys . We truly want you to benefit from this community. 

Brandon,

Thank you so much for being a good neighbor to all of us in this site. Your heartfelt words mean a lot to us.

I love your analogy to a mechanic. We are here to assist you in getting your body back up to the best possible level of functionality. We may have a diagnosis but preventative maintenance will assist in  going forward. 😊

You never know the value of someone posting an experience and how it may help someone else. Many new comers read, yet never react or comment. But they are seeking knowledge from others.  Being a good neighbor is sharing personal experiences and knowledge so that others may benefit.

Be a Good Neighbor!!

Christina,

You are most welcome! A number of patients may need oxygen at some point, but not all patients will need oxygen.

The words “You may need oxygen” can be frightening. These words were certainly frightening for me in my early days of diagnosis. 

Oxygen is a treatment that helps your body get the oxygen it needs when your lungs aren’t able to provide enough on their own.

It is considered when testing shows that oxygen levels are persistently too low—especially at rest, during activity, or sometimes while sleeping. Your healthcare team may use pulse oximetry, walking tests, overnight monitoring, pulmonary function testing, and other evaluations to determine what is happening.

We can take steps to protect our lungs:

✔️ Follow your prescribed airway-clearance routine
✔️ Treat respiratory infections promptly
✔️ Take prescribed medications consistently
✔️ Keep vaccinations up to date
✔️ Avoid lung irritants
✔️ Stay physically active within your individual limits
✔️ Maintain good nutrition and hydration
✔️ Monitor changes in breathlessness, coughing, sputum, fatigue or exercise tolerance
✔️ Ask about pulmonary rehabilitation when appropriate
✔️ Keep track of regular lung-function and oxygen assessments

One low oxygen reading does not automatically mean you need oxygen. Your healthcare team looks at the whole picture. Most importantly, don’t wait until you’re struggling to breathe before talking about changes in your breathing.

Fear shouldn’t keep us from asking questions. Let’s replace “I never want to need oxygen” with: “What preventative measures can I do today to give my lungs the best chance tomorrow?” 🫁💙

Thank you for highlighting this day of awareness, Katie. The Foundation leads the effort to coordinate this day, and as you know, there is a portion of those with BE and NTM who require supplemental oxygen. 

Hello! World Oxygen Day on Friday, October "0-2"

World Oxygen Day is a global, collaborative campaign led by the COPD Foundation to raise awareness and educate communities about the benefits of oxygen therapy, as well as advocacy and support for patients, caregivers, and health care providers with chronic lung disease.

If you are interested in getting involved in this movement, below is the World Oxygen Day toolkit: https://myemail.constantcontact.com/World-Oxygen-Day-Toolkit.html?soid=1103590430047&aid=vANx73YqggQ

Hi Mike.

I am sorry to hear that you have Pseudomonas and Steno. Technically, it is not classified as pneumonia unless they are seeing structural changes on your X-ray/CT scan that indicate that the air sacs (alveoli) have collapsed, or they often see a "complete whiteout" (heavy consolidation) of one or more lobes of your lung. 

Most pulmonologists/ID docs will attempt what they call eradication therapy by using 1-2 rounds of oral antibiotics followed by an inhaled antibiotic to get rid of Pseudomonas. As you have read from the comments, getting completely rid of both "bugs" is pretty hard to do, especially when you have a lung condition like BE. 

The folks here are correct in thinking that oftentimes if you don't have symptoms of a lung infection or "being sick," your doctor may choose to keep an eye on things and wait to treat the infections. My suggestion is to evaluate how you are feeling since testing positive for both bacteria. I would also suggest seeing someone at one of our CCN Centers (if you aren't already and one is fairly close by). 

Tons of valuable information in this post, Brandon. Thank you for sharing. :)

Hello! One of my favorite things about this app is that it provides easy access to find clinical trials that are currently looking for participants. The link below makes it much easier than searching online for clinical trials information.https://www.bronchandntm.org/For-Patients/Participate-in-Research/Research/Participate-in-a-Study

Brandon,

Thank you for posting the disaster plan; it is important to review our disaster plans periodically. I had purchased additional batteries for my flashlights, radio, portable nebulizer. It is always good to have backup batteries in case your current ones die out or are defective.

A few tips on staying calm throughout the storm:  Take things one hour at a time. Turn off the constant weather updates if they are increasing your stress levels. Put on some music, make a warm drink, read a book, call someone you enjoy speaking with-do something that reminds your nervous system that you are will be safe and are prepared.

🌧️ We can’t control the weather.
💨 We can control how we prepare for it.
❤️ We can support one another through it. Stay safe, stay warm and remember — this too shall pass. 🌈

Cac,

1. Hello! I am sorry that you had a bad experience with rehab but glad that you knew enough to get out of there. Unfortunately, there are crooked people out there advertising services that don’t exist or unsuitable for the client.
2. I went to a pulmonary rehab program years ago with full staff -no one had any knowledge on BNTM.  A few staff members were not taking the initiative to do research on the topic. I was desperate to get stronger since I couldn’t walk more than one city block. I provided the organization with the educational resources I had at the time and we collaborated at a team.. It worked out over time and I was able to regain stamina. We have come along way over the past decade but still have a ways to go in terms of educating staff members on the needs of BNTM patients.
3. I hope that this study will provide you with the assistance you need. Please keep us posted on your progress. 

Morgan,

Hello! I hope that the discontinuation of the drug symptoms pass quickly. I have not heard of this scenario before. Were you able to contact the InLighten Program, sponsored by Insmed?  I want you to feel better as soon as possible. 

Fedrocker,

Thank you for your comments abd support for our community. I agree that the NTM is more likely causing the symptoms than the Steno. I had Steno years ago and was not treated for it. They took the watchful waiting approach and I did not need treatment for the Steno.

Levo does have a warning about joint issues.This is of special concern for anyone with joint issues; I did experience tendonitis in my right leg and it was not a good experience by any means. 

Mike, I have tested positive in the past for Steno, taken drugs including Levofloxacin, but later found out that MAC was the source of my symptoms. Whenever I have a sputum sample, there are a number of things (other than MAC)  that show up, but but are not big concerns by my doctor since they are environmental and not causing my symptoms. For me, exercise is a huge part of my life and the main source of my airway clearance. So for that reason, Levof. is not worth it as it is associated with tendon ruptures. I’m just not gonna risk it. I don’t like the thought of things, any sort of thing, living in my lungs for however long- however, I’m concentrated on what’s causing the symptoms. 

Morgan, I discontinued for 3 months, but had no issues going off. The Brensupri pharmacist at the Enlighten Program did say it stays in your system for a while. I do hope you feel better and have a wonderful trip. 
Maggie

I signed up for pulmonary rehab not knowing there was not a trained pulmonary therapist working there for a few weeks, just a nurse and office worker.  After I found out I quit since I was paying for this partly from my medical.  What a waste for me and what really got to me was when I was on a treadmill I put it faster and the woman came up to me and lowered it saying she didn't want me to have heart trouble!  I'm in good health except for my lungs!  What a waste!  

I will be on a study soon which consists of walking exercise and hope I get on the part that makes you work out harder.  This will all be done thru the phone.

I greatly appreciate the feedback on my experience with Brinsupri.  I have only been on this medication for 5 weeks at 10mg.  The daily side effects haven't been worth it since it has been effecting my daily life in negative ways, i.e. nausea, headache, low energy, etc. So I stopped it three days ago.  The withdrawal (I think) is horrendous with the worse nausea, headache, muscle aches, etc.  I'm hoping I can tolerate the withdrawal consequences for a better experience in the long term.  Has anyone else gotten off this drug with similar results? 

Since it is hard to communicate with my lung Dr,  so this forum is a so very helpful.  Thank you, Morgan

Cjac,

Thank you for sharing feedback from your Pulmonologist- we are all in this together to assist one another on our journeys. 

Cjac,

Hello!  Virtual programs worth looking at

1. BreatheSuite Virtual Pulmonary Rehab, https://www.breathesuite.com/vprinfo

• 12-week program
• Designed specifically for bronchiectasis, COPD, ILD, asthma and post-COVID
• One-on-one care from a physical therapist and respiratory therapist
• Individualized exercise prescription
• Remote monitoring of vital signs

2. Breathe Better Rehab, as Alyssa had recommended, particularly interesting for BNTM because bronchiectasis is explicitly included in its eligibility information. https://breathebetter.rehab/contact-us/new-patient-contact/

3. Hospital/academic-center virtual PR
There are also hospital-based virtual programs. A 2025 ATS survey identified 25 U.S. sites currently offering virtual PR, including hospital and VA programs as well as several commercial programs. 

For bronchiectasis, I’d look for these specific components

A good virtual program should include:

• Aerobic conditioning — walking, cycling, etc.
• Strength/resistance training
• Breathing techniques
• Airway-clearance education, which is particularly important in bronchiectasis
• Monitoring of oxygen saturation and heart rate
• A therapist who actually progresses the exercise prescription
• Education about managing breathlessness, fatigue and exacerbations
• Ideally, some individual rather than entirely prerecorded instruction.

There is evidence specifically in bronchiectasis that supervised telerehabilitation can produce improvements comparable to center-based rehabilitation. I wish you the very best in your search for the most suitable program.