Discussions

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. 🥄💙

Does snyonevhavexsny suggestions yo increase vo2 level

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

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

🍂 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! 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?

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

🫁 Have you ever asked about pulmonary rehab?

Pulmonary rehab may not be something you've heard much about with bronchiectasis or NTM. In fact, your doctor may have never even mentioned it. But if you're finding it harder to stay active, getting more short of breath doing everyday things, or feeling like you've lost some strength or stamina, it may be worth asking about.

And don't let the word “rehab” scare you off.

Pulmonary rehab isn't about becoming an athlete or seeing how long you can last on a treadmill. It's a program designed to meet you where you are and help you learn how to safely do more of what you're able to do.

Exercise is part of it, but there's much more. You may learn about breathing techniques, airway clearance, medications, oxygen, nutrition, ways to conserve your energy, and how to better manage day-to-day life with a lung condition.

Sometimes, one of the biggest benefits is simply gaining a little more confidence in what your body can do.

So if pulmonary rehab has never come up in conversation with your healthcare team, there's nothing wrong with being the one to bring it up:

“Do you think pulmonary rehab could help me?”

That one question could open the door to something you didn't know was available.

Have you been through pulmonary rehab? We'd love to hear about your experience. What helped you the most? And if you've never tried it, is it something you'd consider asking your healthcare team about?

The Bronchiectasis and NTM Association has a great resource that explains pulmonary rehab, what happens during the program, and how it may help:

https://www.bronchandntm.org/For-Patients/Learn-More/Exacerbations-and-Treatment/Pulmonary-Rehab

Does anyone have a recommendation for a virtual pulmonary rehab program?

Cjack

A NEW TOOL FOR THE BNTM COMMUNITY! 💙📱

Living with Bronchiectasis and NTM can sometimes feel like a full-time job—keeping track of symptoms, medications, appointments, sputum cultures, questions for your health care team, and so much more. That is why we are so excited to share a new app designed to help BNTM patients stay more informed and connected to their own care.

✨ One more tool in your toolbox.

✨ One place to help keep important information at your fingertips.

✨ One more way to become an active partner in your healthcare journey.

Technology cannot replace your healthcare team—but the right tools can help you feel more prepared for conversations with them. The Care Central: Bronchiectasis & NTM is a free mobile application developed to support individuals living with bronchiectasis and NTM lung disease, as well as the healthcare professionals who care for them. The app was created to improve disease management, communication, education, support, and overall quality of care for the bronchiectasis and NTM community.

For patients and caregivers, Care Central provides access to this site: BronchandNTM360social. The platform allows users to ask questions, participate in discussions, read blogs, share experiences, and engage with patients, caregivers, advocates, physicians, and healthcare professionals in a supportive environment.

The app also includes a wide range of educational resources developed and approved by experts in the field. Users can download practical educational materials such as the Bronchiectasis Action Plan, NTM Management Tool, Symptom Tracker, Wallet Card, and educational booklets designed to help patients better understand and manage their condition. These resources are designed to encourage informed conversations between patients and providers while promoting proactive disease management.

This app features access to podcasts focused on bronchiectasis and NTM lung disease. These episodes include discussions with healthcare experts, patient advocates, caregivers, and individuals living with these conditions, providing listeners with current information, treatment insights, and guidance.

Another feature is helping users find nearby centers within the Bronchiectasis and NTM Care Center Network. These specialized centers provide high-quality, expert-driven care focused on properly diagnosing and managing bronchiectasis and NTM lung disease. Users can search by ZIP code, state, or address to identify expert centers closest to their home.

Healthcare professionals using the app have access to clinical tools and evidence-based resources that support patient care and treatment decision-making. Providers can also use the app to locate expert centers within the BNTM Care Center Network.

Care Central connects users directly to other Bronchiectasis and NTM Association resources, including information about actively recruiting clinical trials and relevant clinical publications. The combination of patient support, provider tools, educational content, and access to expert care resources in one centralized platform- the app serves as a comprehensive digital resource for the bronchiectasis and NTM community.

Care Central App reflects the Bronchiectasis and NTM Association’s commitment to improving education, collaboration, and quality of care for individuals affected by these chronic lung diseases.

Have you tried the new app to help manage your BNTM journey? The Care Central: Bronchiectasis & NTM App is available in the App Store and Google Play. The links are listed below.

Apple App Store: CareCentral:Bronchiectasis&NTM

https://play.google.com/store/apps/details?id=com.copdfoundation.carecentralbronchandntm 

Google Play: CareCentral:Bronchiectasis&NTM

Hi Everyone,

I just got my sputum sample results from lab and it shows I have heavy amounts of  pseudomonas and steno in my lungs. 

I’m now on max dose oral Cipro.

Is this pneumonia? And will I likely have to go on another antibiotic to get rid of Steno? I get mixed diagnosis from my pulmonologist who I’m ready to drop any minute. Appreciate anyone’s comments.

I'm new to the community and have had BE for 15 years which has gotten worse over time.  I recently started on the new medication, Binsupri, and am having lots of side effects, i.e., headaches, nausea, lethargy.  Has anyone  else experienced these side effects?

Thanks 

Hello all. Four months ago, a chest CT scan showed that I have BE with a suspected NTM infection and a lung cavity. This was a huge shock because I am very active, fit and otherwise healthy. I was regularly swimming 1.5 miles/wk and walking 25 miles/wk with no breathing issues. I only had a very mild occassional cough.  Over the past 4 months, I have had many additional tests and a second CT scan confirming pulmonary M. Abscessus infection (cavitary form). My doctor recommends starting treatment with oral Clofazimine, inhaled Amikacin and oral Omadacycline. Needless to say, I am overwhelmed and scared about this disease, the notoriously stubborn infection, and the side effects from the intense treament. Is there anyone out there who has had experience with this bacterial strain and this antibiotic regimen?  

After being on the three antibiotic regimen for MAC the last month, a low grade queasiness is my constant companion . Yes, I take the meds with a bit of food which helps the stomach pain, but nothing has helped the nausea feeling which is present even on the days I don’t take the meds. Anyone else deal with this? How have you coped? It’s quite discouraging and definitely doesn’t help the already reduced appetite. Thanks ! 

Hello! This week is Telehealth Awareness Week, and its goal is to highlight the transformative impact of telehealth on patient care. This national campaign, organized by the American Telemedicine Association, promotes awareness and understanding of telehealth services across healthcare settings and specialties. Are you currently using telehealth? Some healthcare providers utilize this service beyond the initial visit; others do not utilize this service at all.  Please share your experiences, both good and bad, with our community. 

Hello! Were you able to attend the online webinar on The Highlights from the European Respiratory Society Conference? It is great to hear of the increasing interest in the Bronchiectasis/ NTM field. Maggie had inquired about the BEST BE Study. Was there a specific part of the conference that piqued your interest? We would love to hear your feedback. 

Hi everyone, I watched Dr. Chalmers highlights from the European Respiratory Society Congress today. He mentioned the BEST study, a research study following people on Brensocatib. Does anyone have any information on this? I’d like to be involved. Thanks! 
Maggie 

Our lungs are a key part of our health and a primary concern for most people in this community, but healthy aging means caring for your whole body. Below is part 2 of Systems Review for Healthy Aging; I posted part 1 yesterday. This is your friendly reminder to check in with each of these areas:

❤️ HEART & CIRCULATION

• Do I know my blood pressure and cholesterol numbers?

• Am I staying physically active within my abilities?

• Have I discussed any new chest discomfort or swelling with my healthcare provider?

BONES & MUSCLES

• Am I maintaining strength and balance? Am I doing appropriate weight-bearing or resistance activities?

• Am I getting enough protein and nutrients?

• Have I had appropriate bone-health screening?

🧠 BRAIN & COGNITIVE HEALTH

• Am I staying mentally and socially engaged? Am I keeping my brain active through reading, hobbies, learning, or social activities?

• Am I getting adequate sleep?

👀👂 VISION & HEARING-  When was my last vision and hearing check?

🦷 ORAL HEALTH- Am I keeping up with regular dental care? Do I have any dental pain, dry mouth, difficulty chewing, or swallowing?

🧴 SKIN- Am I noticing new or changing spots, wounds, rashes, or areas that don't heal?

🩺 REPRODUCTIVE & URINARY HEALTH- Am I keeping up with age-appropriate screenings?

Have I discussed new urinary or reproductive symptoms with my healthcare provider?

💚 HEALTHY AGING IS MORE THAN A NUMBER- Aging well with BNTM isn't about doing everything perfectly. It's about protecting your health, maintaining independence, noticing changes early, and continuing to live a meaningful life. It is about not avoiding an issue- preventative measures are far easier to deal with than curative measures.

Your lungs are important; so are your heart, bones, brain, vision, skin, bladder health, relationships—and everything in between.

What body system will you check in on today? Please let us know if you have any suggestions for the community.

I'm wondering if anyone signed up for the conference this Saturday discussing Bronch. & NTM?  I see there is a $25. charge for online.  Is there anyway to see it without having to pay?  It sounds interesting.

Hi all,

Has Trikafta been approved for people who are heterozygous for the delta508f gene for CF?  If so, is anyone here taking it?

Tim

HEALTHY AGING WITH BNTM: A WHOLE-BODY SYSTEMS REVIEW 🫁❤️

Hello! When you live with bronchiectasis and NTM, lung health can easily become the main focus. But healthy aging means caring for your whole body—not just your lungs.  

Think of this as a friendly reminder to check in with the different body systems that help you stay strong, independent, and active. I will start with the immune system, digestive system and the metabolic system.

🛡️ IMMUNE & INFECTION PREVENTION

• Am I up to date on recommended vaccinations?

• Am I practicing good infection-prevention habits?

• Am I consuming the right foods to boost my immune system?

🍎 DIGESTIVE & NUTRITIONAL HEALTH

• Have changes in appetite, swallowing, digestion, or bowel habits been evaluated?

* Am I maintaining a healthy weight and getting adequate protein and nutrients?

🩸 METABOLIC HEALTH

• Are my blood sugar and cholesterol being monitored when appropriate?

• Am I maintaining a healthy level of physical activity?

• Are medications and supplements still appropriate for me?

🤝 SOCIAL HEALTH- Am I staying connected with family, friends, or my community?

• Do I have support when I need it?
• Am I maintaining activities that give my life meaning?

Healthy aging isn't about having a perfect body or never having health challenges. Healthy aging is about checking in, noticing changes, staying engaged, and getting appropriate care when something doesn't feel right. For those living with BNTM, your lungs are one important piece of the puzzle—but YOU are the whole picture.

I will focus on other body systems tomorrow.  Do you have any questions on Immune, Digestive, Metabolic, or Social Health?

what exercises do you do and what is the best exercise you have fund

Hello,

I will be starting Rifampin and Azithro, but chose not to add the Amikacin at this point. (they only offered the IV and am concerned about the side effects and it makes it very difficult to work full time and get to the hospital for the IV infusion 3x week). 

Should I be taking a probiotics as well to help maintain healthy gut bacteria?

Is there a suggested schedule of when/how to take the meds + probiotic? 

Any other foods I should increase or remove from my diet to help? (I do not drink alcholol and do not take other meds other than daily vitamins).

I appreciate any help or feedback as this is a bit scary to do.

Thank you,

Patricia

I was wondering if anyone has the same issue.  I live in the northeast where soon it will be winter and we are inside.  I find I am more isolated because when you go out to a restaurant or senior center church etc.  you are with people and a lot of germs and I get sick.  I am not wearing a mask I cant breath well with a mask on.  Does anyone else have the same issue.  I know some of you have small groups you belong to but my friends really dont understand my condition and think I am to concerned so I find my hobbies reading and texting but I miss human contact.  I live alone and my children are away