Discussions

Hello!  Are you up to watching a short video on immunizations? Immunizations are usually administered in early autumn;  it is a good time to review the basics of vaccinations. Dr.David Mannino, pulmonologist and co- founder of the COPD Foundation reviews the different vaccinations for the BNTM community: https://social.bronchandntm.org/resources/detail/4   Please let us know if you have any questions. 

Saw this has some very positive results. Not sure if covered by Medicare or VA but interested if anyone has used and feedback. 

Hello. I'm new to the group and have bronchiectasis which was found in an x-ray and I have the Alpha-1 deficiency. I've been using a nebulizer with medication once a day and the Aerobika once a day. I also walk and cycle a few days a week. I have a hard time getting up any mucus and I don't produce much at all because I have a drier form of a cough. I also have esophageal reflux and take a med for that. I worry whether my condition is worse even though I feel fine. I do feel more tired, and I wonder if that's my condition or because I exercise a lot as my pulmonologist has told me it's very important. I see a pulmonologist every six months for breathing tests and sometimes a CT scan. Just wondering if anyone else has a similar situation like mine when it pertains to lack of mucus clearing. Is there anything else I should be doing?

SHINGLES VACCINE: ANOTHER LAYER OF PROTECTION FOR THE BNTM COMMUNITY 💙

If you’re living with Bronchiectasis and/or NTM lung disease, protecting your overall health is an important part of managing your respiratory health.

One vaccine worth talking to your healthcare provider about is the shingles (zoster) vaccine.

🦠 Why does shingles matter?
Shingles is caused by reactivation of the chickenpox virus that remains dormant in the body. It can cause a painful rash, nerve pain, and sometimes serious complications.
Why should the BNTM community care?People living with chronic lung disease may already have a lot on their plate. Preventing an additional illness—and the complications that can come with it—is one way to help protect your health and avoid unnecessary setbacks.

💉 Shingrix is the recommended shingles vaccine for adults 50 and older, and it may also be recommended for certain adults 19 and older who are immunocompromised. It is given as a 2-dose series.
Please speak with your doctor to find out if the shingles vaccine is appropriate for you, especially if you take medications that affect your immune system or have other health conditions.
Remember: Vaccines are not about treating BNTM—they’re about preventing additional illnesses that can make living with a chronic lung condition more challenging.

💙 Protect your lungs. Protect your health. Stay up to date on recommended vaccines. Please let us know if you have any specific questions. 

🫁💙 August is National Immunization Month — a great reminder for people living with Bronchiectasis and NTM lung disease to talk with their healthcare team about staying up to date on recommended vaccines.

Why does this matter?

People with chronic lung conditions may be more vulnerable to respiratory infections, and infections can sometimes lead to increased coughing, mucus production, breathing difficulties, or a worsening of underlying lung disease. Protecting your lungs starts with prevention.

Vaccines may help protect against certain infections, including:

💉 Influenza (flu) — seasonal vaccination can help reduce the risk of flu and its complications.

💉 COVID-19 — COVID-19 vaccination can help reduce the risk of severe illness.

💉 Pneumococcal disease — vaccination can help protect against infections caused by Streptococcus pneumoniae, including pneumonia.

💉 RSV — certain adults, including some older adults and people with specific risk factors, may be eligible for RSV vaccination.

Vaccine recommendations can vary based on your age, health conditions, previous vaccinations, and other individual factors. Your healthcare provider can help determine which vaccines are appropriate for you.

Vaccinations are only one part of protecting your lungs. Airway clearance, good infection-prevention practices, regular medical care, and following your individualized Bronchiectasis/NTM treatment plan all play important roles too.

🫁 Knowledge + prevention + proactive care = stronger lung health.💙

World NTM Day, celebrated last Tuesday, 8/4/2026 certainly assisted to increase awareness of NTM worldwide. We can continue to take our part of increasing awareness of NTM by sharing educational resources with others. Below is a link on What is NTM, Symptoms, Diagnosis, Management of NTM and Preventative Measures. https://www.bronchandntm.org/For-Patients/Learn-More/NTM-Infections-and-Co-existing-Conditions/NTM-Lung-Infections
Please let us know if you have any questions. Thank you in advance for assisting us in increasing awareness; the greater the awareness, the greater chances of more research and new drug development. 😍

💧 Dew Point Matters More Than You Think!  If you live with Bronchiectasis or NTM, you may have noticed that some humid days feel much harder than others. The reason may be the dew point.

The dew point is a measure of how much moisture is in the air. The higher the number, the more humid the air feels.

🌿 When the dew point reaches 70°F or higher, many people with chronic lung disease may experience:
💙 More shortness of breath
💙 Increased coughing
💙 Thicker mucus or more difficulty clearing airways
💙 Fatigue during everyday activities

While not everyone is affected the same way, many people in the Bronchiectasis and NTM community find that high humidity, “ heavy air”  can make symptoms feel worse.

🌤️ On high dew point days:
✔️ Plan outdoor activities for the early morning or evening.
✔️ Stay hydrated.
✔️ Take breaks and don’t push yourself.
✔️ If possible, enjoy the comfort of air-conditioned spaces.
✔️ Follow your airway clearance routine as recommended by your healthcare team.

 Let’s learn from each other! At what dew point do you begin to notice a difference in your breathing? Is it 60°, 65°, 70°, or even lower? I certainly feel the difference when the dew point is 70 or higher. The dew point is 74 in my area today. Please share your experience in the comments—it may help someone else better understand their own symptoms.

Remember: Weather affects everyone differently. Knowing your personal triggers is one more way to take charge of your lung health. 💙

If you remember Steve Wilson's presentation on Coffee Break, back a while ago, it was a great one. The subject was humor, and the presentation stuck in my mind that day, that week, and even now I remember how delightful it was. It brightened my day and was truly uplifting, and made me remember something I read in my mom's Reader's Digest (she always had a subscription).....Laughter is the best medicine.

It would be great to have another talk by him.

The NTM Management Tool—is a practical resource designed to help patients stay organized, informed, and actively involved in their care.

Whether you’re tracking symptoms, medications, airway clearance, sputum cultures, appointments, or questions for your healthcare team, this tool can help make managing your journey a little easier.

 Every symptom tracked tells a story. Every question asked empowers better care. Take control of your health—one day, and one step at a time.

💙 Have you tried using a management tool to stay organized? We’d love to hear what has helped you most in your NTM journey.

https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/NTM_Management_Tool.pdf

Hemoptysis: What You Should Know

Seeing blood when you cough (called hemoptysis) can be frightening, but it’s something many people living with respiratory issues may experience.

Hemoptysis can range from:
🩸 A few streaks of blood mixed with mucus
🩸 Small amounts of bright red blood
🩸 Larger amounts that require immediate medical attention

Common causes include:
• Inflamed or damaged airways
• Respiratory infections
• Persistent, forceful coughing
• Less commonly, other underlying lung conditions

💙 What should you do?
✔ Stay as calm as possible.
✔ Note the color and approximate amount of blood.
✔ Contact your healthcare provider promptly—even if it’s only a small amount, especially if it’s your first episode or different from previous ones.

🚨 Seek emergency medical care immediately if you are coughing up a large amount of blood, the bleeding continues, you have severe shortness of breath, chest pain, dizziness, or feel faint.  

✨ Knowledge is empowering. Understanding hemoptysis helps you respond with confidence—not panic.

Have you discussed an action plan with your healthcare provider in case hemoptysis occurs? It can provide peace of mind before an emergency ever happens.

Please see our Events Calendar page below to register for the upcoming presentation on Hemoptysis on August 4th, World NTM Day. https://social.bronchandntm.org/events/community

We will be kicking off August with the World NTM Day on Tuesday, August 4th.  
Throughout the month, we will focus on some of the available NTM management tools. We will also be celebrating National Immunization Month and National Advocacy Day. Please join in on the conversations. Let us know if you have any specific questions

Happy International Self-Care Day! Self-care is an essential part of lung health. Practicing self-care means prioritizing one’s physical, mental, and emotional health and wellness. Many people put the needs of others first. We must work on being similar to the flight attendants who instruct us to put on our oxygen masks first, then assist others. We cannot fully be there for others if we are not practicing our own self care. Can you share a self care practice that works for you? 

Why are we seeing so many tornado warnings? There are several factors, and “more warnings” does not necessarily mean there are more tornadoes.

• More severe weather patterns are occurring in some regions. Warm, humid air combined with changing wind patterns can create the instability and wind shear needed for severe thunderstorms and tornadoes. Recent research also suggests tornado activity has shown a longer-term shift toward parts of the eastern U.S., although the science is complex and varies by season and region.

• A warmer atmosphere can hold more moisture, which can contribute to heavier rainfall and more intense thunderstorms

• Detection and warning technology have improved. Doppler radar, dual-polarization radar, better computer models, and newer forecasting methods can identify rotation and dangerous storms that might previously have gone unwarned.

Why tornadoes and severe storms matter to people with Bronchiectasis and NTM

The tornado itself is not known to cause NTM disease, but the conditions surrounding severe storms can be challenging for vulnerable lungs.

🌪️ 1. Dust and debris-tornadoes can put enormous amounts of dust, soil, construction material, insulation, and other particles into the air. These can irritate already-sensitive airways and may worsen one’s condition.

🌧️ 2. Flooding → moisture and mold-this may be one of the biggest concerns after severe storms. Flooded buildings and water-damaged materials can develop mold, sometimes very quickly.

🦠 3. Increased exposure to environmental organisms. Storms can disturb soil, standing water, decaying vegetation, and contaminated materials. These exposures can increase the amount of environmental material people breathe in.

Practical protection during and after a tornado or severe storm for bronchiectasis or NTM lung disease, I would think about it in three phases:  Before and during the storm. Keep necessary respiratory medications and airway-clearance equipment available if possible. Have extra medications and supplies in an emergency kit.

After the storm: Avoid cleanup involving dust or potential mold. If entering a dusty or potentially moldy environment is unavoidable, wear a NIOSH-approved N95 respirator for mold cleanup.

Watch for a change from your baseline. After major storm exposure, seek medical advice if there is a significant or persistent change in respiratory symptoms.

Tornado warnings themselves are not a specific threat to NTM disease. The concern is the aftermath: dust, mold, floodwater, debris, smoke, and disrupted access to medications or medical care. Have you dealt with a tornado recently? Do you have any advice to share with the community?

Hi,

I am curious if anyone struggles releasing mucus from their throats. 
lately while doing autogenic drainage and huff coughing with the final process of expelling mucus it is clinging to my throat. 
Unfortunately its causing me to be too harsh trying to clear it and leaving me with a sore throat. 
i know it should be a gentle process- but- its being very clingy! 

The recent weather conditions of extreme heat, poor air quality, rain can zap the energy out if some people who have BNTM lung issues. The blog article below reviews some tips on Energy Management. Please let me know if you have any additional tips to share with the community. https://social.bronchandntm.org/articles/blog/Energy-Management-The-Key-to-Living-with-NTMBronchiectasis

I was diagnosed with BNTM in April. I've been doing airway clearance everyday sometimes twice a day using a nebulizer and an acapella. My pulmonologist has suggested a new machine called a Volera. Has anyone else had any experience with this machine?

Have you been exposed to the wildfire smoke over the past week? Below is an article on 10 tips to assist you with detoxifying your lungs. I would exclude the tip on using a humidifier, not advised for BNTM patients. Do you have any other suggestions? https://www.respiratorytherapyzone.com/detox-lungs-wildfire-smoke/

Clinical Research Studies are closely monitored by physicians, regulators, and data safety monitoring boards. It is important to review the details of the Informed Consent Form given to you by the research staff members and ask questions before signing it. You are not required to continue with the study if you decide to withdraw after starting it. Your involvement can help develop new drugs and treatments for the community.

Current research studies are posted on the BNTM Association 360, https://www.bronchandntm.org/For-Patients/Participate-in-Research/Research/Participate-in-a-Study. The current listing includes:  The AIRTIVITY® Study is looking to see if an investigational medicine – designed to target the harmful inflammation that contributes to bronchiectasis – can help improve the lives of people living with the condition. To find out how to take part in this clinical trial, please visit https://airtivity.researchstudytrial.com/?r=9

How do I find other clinical trials?  www.clinicaltrials.gov

If you have any questions, please call the Bronchiectasis and NTM Information Line: 1-833-411-LUNG (5864) or email contactus@bronchiectasisandntm360.org

Clinical trials are done to test treatments or therapies for specific diseases such as NTM and bronchiectasis. These trials help us to understand what works and what does not. Clinical trials challenge current treatments or standards of care for the advancement of care. Suggested questions to ask before beginning a research trial:

Participation

• What is the purpose of the trial?

• How will this treatment be different from what is currently being used?

• How long will I be in the trial?

• How many visits will I need to make to the hospital or clinic?

• What kinds of tests and treatments are involved?

• How will the doctor know if the treatment is working?

• Who will oversee my care?

• Who can answer questions I have during and after the trial?

Risk and benefits

• What are the possible side effects or risks of the new treatment?

• What are the possible benefits?

• How do the possible risks and benefits of this trial compare to those of the current treatment?

Rights and costs

• How will my health information be kept private?

• If I decide to leave the trial, what other options will I have?

• Who can help answer questions from my insurance company?

• Are there any out-of-pocket costs if I take part in the trial?

• Are there payments for participating or to cover travel?

Please let us know if you have any questions.  I will continue to post more information on clinical trials throughout the week. Please stay tuned. :)

Hi! I'm 82. Have had bronchiectasis for probably 40 years. Hemoptysis 4 times: 2009, 2017, 2026 (2 x's). Am considering – seriously – BAE (Broncial Artery Embolization) and would LOVE to hear from anyone with experience with this procedure. I had a consult today with a UNC Interventional Radiologist who would perform the BAE. 

Participating in a clinical trial helps researchers address important questions and learn more about NTM lung disease and bronchiectasis. It also contributes to better, safer, and more effective treatments. There are four phases carefully designed to study participants in a clinical trial to evaluate the safety and effectiveness of new drugs, medical devices, and treatments. Below is a summary of what occurs at each phase of a clinical trial.

• Phase I – Explores whether a treatment is safe in a small group.

• Phase II – Evaluates whether a treatment is useful in a larger target population. Researchers continue to monitor safety and assess how well the treatment works at different doses.

• Phase III (registration) – Explores how the new treatment compares to existing treatments and side effects in a much larger group. This phase also evaluates the new treatment’s effectiveness, safety and correct dose. Information from Phase I-III is used for U.S. Food and Drug Administration (FDA) approval and regulatory agencies in other countries.

• Phase IV – Monitors long-term safety, interactions with other medications, and efficacy in real-world use.

Clinical trials take time to complete, and the enrollment process can be slow due to limited eligibility. Trials begin with pre-screening, followed by obtaining informed consent from participants. Informed consent confirms your knowledge of the procedure or treatment, possible risks, and benefits. Individuals may undergo screening for eligibility for a specific research study. If approved, the participant can enroll in the study. Monitoring for safety occurs throughout and after the study concludes.

Have you participated in a clinical trial? Would you like to share your experience with the community?

My bronchiectasis results in constant coughing and spitting up of phlegm 24/7.   I feel like I have a continuous head cold.   Do I still need to do airway clearance since the problem seems to be in my sinuses?   I spit up a lot of mucus/phlegm all day long so I don’t want to produce even more by doing airway clearance.   Please  enlighten me….

My mom is care giver for her sister who has bronchiactesis, long standing, with bleeding from lungs. Now my mom has some symptoms of bleeding from lungs, etc, and doctor has diagnosed her with the disease. Is it possible that bronchiactesis is communicable, and can be passed to another individual?

💙 Hope Starts with Knowledge.

For individuals and caregivers living with BNTM, learning about clinical trials can lead to better outcomes by giving eligible participants access to promising investigational therapies under careful medical supervision.

Participation is always voluntary, and every study has specific eligibility criteria. The best first step is to talk with your healthcare team to see whether a clinical trial may be right for you.

Every breakthrough in medicine begins with people who choose to advance research. Patient involvement helps researchers better understand the disease, identify unmet needs, and develop treatments that reflect what matters most to those living with BNTM. Whether you participate or simply help spread awareness, you are contributing to a future filled with more hope and more treatment options.

Progress happens because of a community that shows up, supports one another, and believes that better treatments—and brighter tomorrows—are possible. Together, we're moving science forward—one step, one study, one patient at a time. I will be posting information on clinical trials and current trials throughout the week.  Please stay tuned and let us know if you have any specific questions on clinical trials.💙

Hello! I hope that you have been able to enjoy some beautiful summer days. Below is a link to a blog article on Summer Precautions for Bronchiectasis and NTM individuals. The article reviews water precautions- the latest update is to boil water for at least 3 minutes after it begins to boil. Please let us know if you have any questions.https://social.bronchandntm.org/articles/blog/Summer-Precautions-for-People-with-Bronchiectasis-and-NTM-Lung-Disease