Discussions

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

Hello! This week is National Assisted Living Week.  I want to begin by writing a little about the history of Assisted Living Facilities. When we hear assisted living, we may picture a nursing home. But that isn't necessarily what assisted living is. The concept was developed to provide support in a home-like setting while helping people maintain independence, dignity, choice, and quality of life.

Assisted living, as we know it today, developed largely in response to the limitations of the traditional nursing-home model. Beginning in the 1980s, a new philosophy of care began to emerge. Advocates promoted more individualized services and greater independence as alternatives to traditional nursing facilities.

During the 1980s and 1990s, assisted living expanded rapidly, and a variety of models began to emerge. By 1998, there were an estimated 11,459 assisted-living facilities in the United States. Today, there are approximately 39,000 assisted-living and residential-care facilities, serving approximately 1.2 million residents.

Do you or a loved one live in an assisted living facility? Are you a caregiver for someone who does? If so, please consider sharing the resources below with your assisted living healthcare team. These resources can help staff better understand bronchiectasis and NTM lung disease and the unique needs of individuals living with these conditions. 💙 Knowledge leads to better understanding, better communication, and better care. Please share these resources with the healthcare professionals who support you or your loved one.

All About Bronchiectasis Booklet https://social.bronchandntm.org/resources/detail/25

Do You Know About NTM Lung Disease (Part1)https://social.bronchandntm.org/resources/detail/8

Please let us know if you have any questions.

Hello

I'm new here.  :)    I wanted to connect with others to see if anyone else is experiencing what I am with Brinsupri.

I have been taking Brinsupri 10 mg for almost a year now.  At the beginning of the fourth month I felt a noticeable improvement and had less and less phlegm and cough, as well as less breathing issues and fatigue, as the months progressed.  It was such a relief!  After 30 years!  But recently I have noticed that I feel like I am going backwards, as though my body has gotten used to the medication and it isn't working as well as it was.

Has anyone else on Brinsupri had this experience?

💙 Celebrating Grandparents in Our BNTM Community 💙

Wishing all grandparents, soon-to-be grandparents, and those acting in the role of a grandparent a wonderful day! :)

Grandparents have a special way of making life feel a little warmer, a little wiser, and a whole lot more meaningful. For those living with BNTM, being a grandparent may sometimes feel different. You may need to pace yourself, plan around your respiratory treatments, conserve your energy, or find creative ways to stay connected with the people you desire to be with.

And for grandparents supporting a loved one with BNTM, your encouragement, patience, and understanding can mean more than you will ever know. Whether you're sharing a hug, watching from the sidelines, making a phone call, sending a text, or simply being there—your ongoing presence truly matters. Ongoing support means so much at every stage in our lives.

Today, we celebrate the grandparents in our BNTM community and all the love they give and receive. Happy Grandparents Day! 💙 Please share any special plans you have for this special day- we would love to hear from you! 

September 11 — We Remember. We Grieve. There are some days when words simply aren’t enough. September 11 is one of those days.

We remember the lives taken, the families forever changed, the first responders who ran toward danger, and everyone who has carried the weight of that day for 25 years.  Reaching out to those who have been dealing with respiratory issues since 911: it has been a long and challenging journey, but you are not alone.

Grief doesn’t always belong to one particular day. For those of us living with bronchiectasis, NTM, or other respiratory illnesses, we understand that grief can take many forms. We can grieve the person we were before our diagnosis. We can grieve quietly—even while smiling, laughing, and telling everyone we’re “doing okay.” And sometimes, the greatest act of courage isn’t fighting harder; it is the strength to get support and to keep moving forward.  

And for everyone in our BNTM family who is carrying grief today—whether from 9/11, from chronic illness, or from a loss that only you understand—please be gentle with yourself.

You don’t have to hide your grief.
You don’t have to apologize for it.
And you don’t have to walk through it alone.

🕊️ We remember those we’ve lost. We honor those who continue to fight. Please check in with us regularly to let us know how we can assist you.

❤️ Today and always, we remember.

When you walk into a healthcare facility, who is making sure the environment is safe from the spread of infection? Why can this be especially important for the BNTM community? For people with bronchiectasis and NTM, infection prevention is especially important because healthcare facilities bring together many people with respiratory illnesses.

An infection control nurse plays a major role in protecting patients, healthcare workers, visitors, and the community from infections acquired or spread in a healthcare setting.  What does an infection control nurse do? Their job is essentially to prevent infections before they happen and stop them from spreading when they do occur.

Key responsibilities include:

• Monitor infections: Track infections occurring in the hospital, clinic, or other facility and look for patterns or increases.
• Investigate outbreaks: If several patients develop the same infection, the infection-control team investigates where it may have originated and how it is spreading.
• Develop infection-prevention policies: They help establish procedures for hand hygiene, cleaning, sterilization, isolation, PPE, respiratory precautions, and other safety measures. They address questions such as: Should this patient be separated from other patients? How can we protect vulnerable patients in the waiting room?
• Educate healthcare workers: They train staff on infection-prevention practices.
• Monitor compliance: They may observe handwashing, PPE use, cleaning procedures, and other activities to make sure policies are being followed.
• Manage isolation precautions: They help determine what precautions are appropriate for patients with potentially transmissible infections.
• Surveillance: They follow organisms such as C. difficile, influenza, tuberculosis, and other healthcare-associated infections.
• Work with public health departments: Certain infections or outbreaks may need to be reported to the CDC, state, and Local health departments

 Do you have any infection control experiences or suggestions that you would like to share with the community?

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?