Activity Feed

Hello! Are you familiar with the 🥄 Spoon Theory? If you live with bronchiectasis or NTM lung disease, you may have days when even the simplest things feel tiring. That’s where Spoon Theory can help explain what “limited energy” really means. Imagine waking up with a certain number of spoons each day. 🥄 Each spoon represents a little bit of physical, mental, or emotional energy.

• Taking medications? 🥄

• Doing airway clearance? 🥄

• Going to a medical appointment? 🥄

• Working or caring for your family? 🥄

• Dealing with coughing, fatigue, or a difficult day? 🥄🥄

Some days, you have more spoons. Other days, you start the day with very few. And when your spoons are gone, they’re gone. Rest isn’t laziness. Saying “no” isn’t selfish. Canceling plans doesn’t mean you don’t care. Your body may simply be telling you it needs to conserve what energy it has at that moment.

💙 Living with bronchiectasis and NTM often means learning to spend your spoons intentionally. It is not easy to adapt to such a change, but one can adapt to such a change over time.

• Save some for what matters most; prioritize your needs.

• Permit yourself to rest.

• Ask for help when you need it.

• And remember: your worth isn't measured by how much you accomplish in a day.

To everyone navigating bronchiectasis, NTM, or another chronic illness: your limited energy is real, even when others can't see it. BNTM is usually an “invisible" disease to most people. Do you feel misunderstood on the days when your energy is not up to par? Please share an experience with the community.

Please share this information on the Spoon Theory with a friend or family member so they may have a better understanding of what you are experiencing. 🥄💙

Delia,

Thank you for your great reminder to rest/ recover between workouts. Our bodies learn to identify what types of workouts we can and cannot handle over time. 

I agree with all that Katie has shared, and I wanted to add one more consideration - allow your body enough time to rest/recover in between workouts. 

Magg,

Increasing movement is the best way to increase your VO2.

Get your heart pumping. You can improve your VO₂ max by doing any aerobic exercise that gets your heart pumping - the more vigorous, the better. If you're not currently active, walking may be vigorous enough to trigger improvements in your VO₂ max score.

High-intensity interval training (HIIT) is a fast and effective way to increase VO₂ max. Try doing an interval training workout several times per week, interspersed with slower, longer-duration activities if you are able to do so.

Switch up your workout routine. Your body is constantly adapting. If you were primarily a swimmer, consider cycling instead. If you usually train at a slow, steady pace, ramp things up. If you usually work out for 30 minutes, add 10 minutes to your routine if you are able to do so. All of these changes force your body to work harder to adapt.

Lose weight- relative VO₂ max is measured relative to your weight, simply losing weight can boost your VO₂ max.

i hope that this is helpful.

* Harvard Health 

CJack,

I am sorry that the pulmonary rehab program associated with the center was not up to par. You can share more details by emailing contactus@bronchandntm.org if you would like us to investigate further. I do hope that you find the right center.

Magg,

You are most welcome! I hope that you get this issue resolved soon. 

Thank you

Magg,

Hello! Coughing during meals may be related to reflux, postnasal drainage, increased saliva/secretions, or simply irritation of the throat.

Repeated coughing during or immediately after eating or drinking can sometimes be a sign of swallowing difficulty. Talk with your healthcare provider if you continue to notice:

• Frequent coughing or choking with meals
• A “gurgly” voice after swallowing
• Shortness of breath while eating
• Food or liquids seeming to “go down the wrong way”
• Recurrent respiratory infections

A swallowing evaluation can help determine what is occurring and what, if anything, can be done to make eating and drinking safer.

Tracking when the coughing happens and whether it is associated with solids, liquids or certain foods is good data to have available for an appointment with your healthcare provider. I hope this helps. 

You are most welcome! 

Does snyonevhavexsny suggestions yo increase vo2 level

Thanks! Sorry to say but I actually receive my pulmonary care at a BNTM Center. One of the rehab programs I attended was at that very medical center. Btw, I was completely unaware that it is a BNTM Center. Only learned recently about BNTM Centers and that I am already receiving my care from one through this website! Don’t quite know what to make of that!

Cjack

Thanks!

CJack,

Hello! Below is a blog article on Energy Management for BNTM patients. I hope that you can get a few useful tips from this article: https://social.bronchandntm.org/articles/blog/Energy-Management-The-Key-to-Living-with-NTMBronchiectasis

Thank you

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