Discussions

Hi everyone,  so happy to have found this group. Thank you so much for the warm welcome.  I have recently completed my 18 month  antibiotics  treatment course. I'm looking to boost my immune system with a daily multivitamin. I was wondering if I should avoid a brand with iron as I remember hearing the ntm bacteria use it to replicate?  Thanks again and I wish everyone the best. 

I am using SafeWater Products filters.   The company gives a greatdiscount for Bronc. patients. However. I can't trust two months or three months recommendation for when to replace them..  too many variables.  

 Does anyone know of a meter that can be attached to the sink and or the shower to count the gallons of water going through it?

We're building a new Medicare information website and want it to answer the questions that matter most to our community. What Medicare-related questions have you had about coverage, costs, enrollment, prescriptions, providers, benefits, or anything else?

Post your question below. Your questions may help shape our new FAQ section!

Hello! National Patient Advocacy Day was on August 19th. Patient advocacy is a key function in the healthcare system that focuses on advocating for patients, and caregivers.  In the United States, patient advocacy became prominent in the 1950s, with cancer research and treatment.

As the Patient Rights movement grew in the United States, the 1970s were a pivotal period for patient activism. An example of this activism is the American Hospital Association’s Patient Bill of Rights.  Individual patient advocacy gained traction in the United States in the early 2000s. 
The COPDF and the BNTM Association organizes an event, known as Impact that is held every March in Washington, DC. Meeting with your legislators on Capitol Hill is truly a great experience. Below is a link for more information on Impact Day, including the priority requests  that have been made since 2019. https://www.copdfoundation.org/Take-Action/Get-Involved/IMPACT-Lung-Health.aspx

Please let us know if you have any questions. This event offers the opportunity of taking action to assist in moving research and the development of new drugs and treatments forward. Contact information is included in the link above if you are interested in getting involved. :) 

Hello!  Are you preparing to get the flu vaccine?
The composition of flu vaccines changes every year, it gets updated based on needs scientists observe from the previous year. Flu vaccines for the 2026–2027 season are trivalent and protect against three influenza viruses: H1N1, H3N2 and a B/Victoria virus. 

A new option this season is mFLUSIVA, the first FDA-approved mRNA flu vaccine injection. It is approved for adults 50 to 64 and received accelerated approval for adults 65 and older.

People 65 years and older may also receive Fluzone High-Dose, Fluad or Flublok.  http//www.Drugs.com 

It is best to get your flu vaccine for early fall, or by mid October since the flu vaccine takes a few weeks to be fully effective. Let’s be proactive and protect ourselves. Let us know if you have any questions. 

🫁 RSV VACCINE: AN IMPORTANT LAYER OF PROTECTION FOR THE BNTM COMMUNITY

For individuals living with bronchiectasis and/or NTM lung disease, protecting your lungs from respiratory infections is of utmost importance.

The CDC recommends RSV vaccination for:
• Everyone age 75 and older
• Adults ages 50–74 who are at increased risk for severe RSV, including people with chronic lung disease.

🗓️ How often do you need it? RSV vaccination is NOT currently an annual vaccine.

The best time for eligible adults to get vaccinated is generally early fall, before RSV begins circulating widely.

❤️ Why does this matter for the BNTM community?

When you already have compromised or damaged airways, another respiratory infection can potentially put additional stress on your lungs. RSV vaccination can help reduce the risk of serious RSV disease.

Talk with your healthcare provider about whether the RSV vaccine is right for you.

Protect your lungs. Prevent what you can. 💙 https://www.cdc.gov/rsv/hcp/vaccine-clinical-guidance/adults.html

Hello! Are you up to date with your Tdap vaccine? The multiple letters on some vaccines can be very confusing. Regarding the tetanus, diphtheria and pertussis vaccines-adults generally receive Tdap, not the childhood DTaP vaccine.

💉 Tdap protects against three bacterial infections:

• Tetanus — can enter through cuts or wounds and cause severe muscle spasms.
• Diphtheria — can cause serious throat and breathing problems.
• Pertussis (whooping cough) — particularly important for people with underlying lung disease because a prolonged cough or respiratory infection can be especially difficult to manage.

How often do adults need it? According to CDC recommendations:

• One Tdap dose is recommended for adults who have never received Tdap.
• After that, adults should receive Td or Tdap every 10 years.
• Tdap can be used instead of Td for the 10-year booster. 

Preventing pertussis (whooping cough) is particularly relevant to people who already have compromised or damaged airways. A pertussis infection can cause weeks of severe coughing, which may be particularly disruptive for someone with bronchiectasis.

 Vaccination history and the recommended schedule are normally used to determine whether or not an adult needs Tdap. Please discuss your vaccination record with your healthcare provider rather than assuming you’re protected. Please let us know if you have any questions.

August is National Immunization Month. I thought I would review IMMUNOLOGY 101.

Ever wonder what actually happens inside your body after you get a vaccine? 💉

Think of your immune system as your body’s security team. Its job is to recognize things that don’t belong—such as bacteria and viruses—and respond to them. 
What does a vaccine do?

A vaccine gives your immune system a safe preview of a specific germ or part of it.

It essentially says: “Here’s what the enemy looks like. Learn it now, so you’re ready if you encounter it later.”

Your immune system responds by making antibodies and immune memory cells. If the real germ appears later, your immune system can recognize it and respond much faster.

When you already have chronic lung disease, avoiding additional respiratory infections can be particularly important.

Vaccines don’t prevent every respiratory infection but they can help protect against other vaccine-preventable infections that may cause serious respiratory illness or complications.

Your age, health conditions, previous vaccinations and medications can all affect which vaccines you need and when. 

Vaccination isn’t about making your immune system “stronger.” It’s about training your immune system to recognize a specific threat before you encounter the real thing.

And immunity isn’t always perfect. You can sometimes still become infected after vaccination—but vaccination can reduce the risk of serious illness.

Please ask your healthcare team to review your vaccination history and discuss which vaccines are appropriate for you.

Knowledge is part of your BNTM lung-health toolkit. 🫁💙 Do you have plans for your next vaccination? 

Have you received the pneumococcal vaccine? Why is this vaccine important?

People living with bronchiectasis have structural changes in their airways and are at increased risk for respiratory infections, including serious pneumococcal disease.

Pneumococcal vaccination helps protect against Streptococcus pneumoniae, a bacterium that can cause pneumonia, bloodstream infections and meningitis.

💉 Which pneumococcal vaccine?

There are currently three pneumococcal conjugate vaccines:

• PCV15
• PCV20
• PCV21

There is also PPSV23.

The number refers to the number of pneumococcal serotypes covered by the vaccine. 

For an adult with chronic lung disease who has never received a pneumococcal vaccine, current CDC guidance generally provides these choices:

Option 1:
PCV20 — one dose

OR

PCV21 — one dose

OR

Option 2:
PCV15 → PPSV23
The PPSV23 is generally given at least 1 year later. In certain immunocompromising situations, the interval can be shortened to 8 weeks. 
I realize that all if these different numbers can be confusing… please let us know if you have any questions. 

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?