Discussions

You may have wondered: “Why would my pulmonologist want an Infectious Disease (ID) specialist involved in my care?”

It doesn’t necessarily mean you’re “more sick.” Sometimes it means your doctors want another layer of expertise.

An ID doctor may be brought in when:

🔹 A difficult or unusual organism is identified

🔹 NTM is suspected or confirmed
NTM treatment can involve multiple medications, potential drug interactions, side effects, and prolonged therapy.

If there is a question of infection vs. colonization A positive sputum culture doesn’t always mean that treatment is needed. Your clinical symptoms, imaging and microbiology determine the treatment plan.

🔹 The infection keeps coming back
An ID specialist may help determine why and whether additional testing or a different treatment strategy is appropriate.

🔹 Antibiotic choices become complicated- Resistance, allergies, medication interactions, or previous treatment failures may require specialized infectious-disease input.

🔹 Treatment causes significant side effects- The ID doctor can work with the pulmonologist to balance treating the infection while minimizing medication toxicity.

Sometimes the most important role of an ID specialist is simply helping the team answer: Do we treat, what do we treat with?

Has your pulmonologist ever referred you to an Infectious Disease specialist? Did having an ID doctor involved change your treatment plan, or understanding of your cultures? Please share your experience below to assist other members on their journey. 

I have been diagnosed with bronchiolectasis, not bronchiectasis. I can find almost nothing about this condition.  Are there  other members with this condition?  I'd like to start a discussion.  Thanks

Happy Labor Day! Today we recognize and celebrate the contributions of workers in every field of work. 
Lung health and labor are deeply connected. Exposure to smoke, dust, fumes, and other pollutants on the job can increase the likelihood of developing bronchiectasis, NTM lung disease, and other chronic lung conditions.  In honor of Labor Day, help us spread the word about the importance of occupational protections and safety equipment so we can build a healthier future for all workers. Enjoy your day! 

After an exacerbation, how long does it take most of you to return to your steady state? My most recent flare-up occurred on a very humid day, when the air quality was terrible (including smoke from the Canadian fires). This was back in July. After a round of antibiotics, I am patiently waiting to return to my "normal."  I have stepped up my airway clearance efforts but improvement is very slow.  At least this is my first flare-up this year (perhaps that is due to my starting Brinsupri).  Thank you all in advance for your thoughts.

How do YOU protect your lungs at the doctor’s office?

Going to the doctor is important—but for those living with Bronchiectasis and/or NTM, sitting in a crowded waiting room with people who are coughing can feel a little stressful. 

So let’s learn from each other! What infection-control precautions do YOU take when visiting a doctor’s office?

Do you… 😷 Wear an N95 or KN95?

🚗 Wait in your car until the exam room is ready?
🕐 Try to schedule the first appointment of the day?
🪑 Look for a less-crowded area of the waiting room?
🧴 Carry hand sanitizer?

Open doors with a paper towel or other protective cloth? Use a paper towel to push the elevator button? 

Do airway clearance immediately after the office visit?
📞 Ask the office about their procedures for patients with respiratory symptoms?
🤔 Or do you have another strategy that helps you feel safer?

Do you feel comfortable asking a doctor’s office to help reduce your exposure to respiratory infections—or do you worry about being perceived as “difficult”?

Please your experience below. What works for YOU might be exactly the tip another member of our community needs. Thank you in advance for sharing your experiences. 😍

Hi y'all,

I am new to this group. I was diagnosed with Bronchiectasis in 2012. I have frequent exacerbations, many due to Achromobacter which was found in 2022. In spite of multiple rounds of antibiotics which it is supposedly susceptible to, I have not been able to get rid of it.

I do not know anyone else with this disease and have a hard time knowing if how I feel physically is normal, or if it is getting worse. Although my pulmonologists specialize in Bronchiectasis, they have not been great about explaining how my symptoms compare to others and what to expect in the future.

🫁 INFECTION CONTROL 101: Protecting Your Lungs Starts with the Basics

Do you remember what we learned during the pandemic regarding infection control precautions? The everyday things we do to prevent infection really can make a difference. For people living with bronchiectasis and NTM (BNTM), infection prevention is especially important. You don't have to live in a bubble — but a few simple habits can help reduce your exposure to respiratory germs and other infections.

🧼 YOUR EVERYDAY INFECTION-CONTROL CHECKLIST:

• Keep your respiratory equipment clean- nebulizers, masks, tubing, spacers, and other respiratory equipment can harbor germs if they aren't cleaned properly. Follow your healthcare team's instructions for cleaning, disinfecting, and replacing equipment.
• Be mindful of shared spaces- crowded indoor spaces can mean more exposure to respiratory viruses. During times when respiratory illnesses are circulating heavily, consider improving ventilation, avoiding unnecessary crowds, or wearing a well-fitting mask.
• Clean your hands- wash your hands regularly with soap and water, especially after being out in public, before eating, and after coughing or blowing your nose.
• Practice good cough etiquette-cover coughs and sneezes with a tissue or your elbow and wash your hands afterward.
• Stay home when you're sick- if someone around you has a respiratory infection, give yourself some distance when possible.
• Keep vaccinations up to date-talk with your healthcare provider about recommended vaccines.
• Pay attention to water and environmental exposures- NTM bacteria are naturally found in the environment, including water and soil. Video on Environmental Precautions with Environmental Precautions expert, Jennifer Honda, PhD- https://www.youtube.com/watch?v=LEB1VRoH2Rs

💙 Infection control isn't about fear. It's about control. You can't eliminate every exposure — instead, focus on the small, consistent habits you can control. 🫁 Protect your lungs. Protect your health. Preventative strategies are far easier to deal with than curative strategies. Do you have any additional suggestions?

Please let us know if you have any infection control questions.

🍂💙 HELLO! September has arrived… and with it comes a new season, cooler mornings, changing weather, beautiful fall days for us to enjoy. We may have days when our lungs make plans for us. We may have treatments, airway clearance, appointments, medications, and maybe “new symptoms” to think about. But we also have sunny days to enjoy, people to love, places to go, laughter to share, and moments to treasure.

So, as we enter September: 🍁 💧 Keep your airway-clearance routine going. Even when life gets busy, consistency matters. 🫁 Listen to your lungs. You know your “normal” better than anyone. If something changes, don’t ignore it. And perhaps the most important reminder of all: Don’t let Bronchiectasis or NTM take September away from you.

Take the precautions you need. Make the adjustments you need. Rest when you need to.  Ask for help when you need it. 💙Here’s to crisp mornings, beautiful September sunsets, and finding those little moments that make us smile.

Throughout the month, our educational focus will be on Infection Control Basics, Healthy Aging, Fall allergies, Telehealth, Oxygen Awareness Day, and our new Bronchiectasis and NTM App. Please let us know if you have any specific questions. 

Weather forecast/ predictions can be confusing for some individuals. Meteorologists on the news focus more on reporting humidity than discussing the details of the current dew point. Below are a few weather tips. 

Don’t let the humidity percentage tell the whole story! Many of us see 80% humidity and immediately think, “That’s terrible for my lungs!” but please do remember to check the DEW POINT.

Relative humidity tells you how full the air is with moisture at that particular temperature. The dew point tells you how much moisture is actually in the air.

An example : 80% humidity + cooler temperature = dew point around 64°.  That may feel very different from: 80% humidity + hot temperature = a much higher dew point

Humidity = how full the moisture “cup” is.
Dew point = how much moisture is actually in the cup.

The dew point can be a more useful number to watch when deciding how comfortable outdoor air may feel.

☀️ So before skipping your walk, outdoor lunch, or time with family:

✔️ Check the dew point
✔️ Check the temperature
✔️ Check the AQI/air quality
✔️ Consider pollen, smoke and other irritants
✔️ Pay attention to how YOUR lungs feel.
There is no single dew-point number that is “dangerous” for everyone with bronchiectasis or NTM. Some people tolerate humid air well, while others notice more coughing, chest tightness, breathlessness or fatigue.

A high humidity percentage does not automatically mean you need to stay indoors. 💚 Know your numbers. Listen to your body. Then make your outdoor plans accordingly.

Because respiratory illness shouldn’t mean missing out on the great outdoors — sometimes it’s about choosing the more comfortable hours, not avoiding the outdoors altogether. Please let us know if you have any questions.

Hello,

I am new to the group and was diagnosed with mild Bronchiecstasis last year.

I have a question about cleaning my nebulizing equipment while traveling… specifically on a cruise.

I usually sanitize by boiling my equipment in distilled water after cleaning with hot soapy water but obviously won’t be able to do that on a ship.

Any advice or suggestions would be greatly appreciated!!

Thanks!!

Hello!  Did you know there are different types of flu vaccines?  WHAT ARE THE OPTIONS?

🔹 Standard-dose flu vaccine
Traditional injectable flu vaccine. Available for many age groups beginning at 6 months, depending on the specific product and current approvals.

🔹 Cell-based flu vaccine
Made using animal cell culture rather than eggs. Availability and approved age groups may vary by season and product.

🔹 Recombinant flu vaccine — Flublok
Made using recombinant technology rather than growing influenza virus in eggs. Its approved age range and availability should be confirmed for the 2026–27 season.

🔹 High-dose flu vaccine — Fluzone High-Dose
Designed for adults 65 and older. It contains more antigen than standard-dose vaccine to produce a stronger immune response. Product availability and recommendations may change, so confirm current guidance. 

🔹 Adjuvanted flu vaccine — Fluad
Also designed for adults 65+. It contains an adjuvant, an ingredient intended to strengthen the body’s immune response to vaccination. Confirm current approval, availability, and recommendations for 2026–27. 

IF YOU ARE 65+

CDC recommendations for adults 65+ may prefer enhanced flu vaccines, such as high-dose, adjuvanted, or recombinant vaccines.https://www.cdc.gov/vaccines/index.html
Have you discussed what type of flu shot you will be getting this year with your health care provider? 

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.💙