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BronchandNTM360social welcomes new member Alfred Moran who
joins 5,672 current members of our community.
We're glad you're here!
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Thank you so much for responding. I’ll watch the video.
Hi, we’re glad you found us. We offer a variety of resources and ongoing educational programs, with new content added each month. Here are a few that may be especially helpful:
- Our podcast, “Understanding NTM Lung Disease: Risks, Diagnosis, and Treatment Decision.”
- A recent Coffee Break discussion on watchful waiting, which should be available on our YouTube channel next week
Great question, and you are not alone in feeling frightened after a new MAC diagnosis!
For some people, treatment is not started right away, especially if they are not having symptoms and their doctor feels it is appropriate to monitor closely. A diagnosis of MAC does not automatically mean everyone will need months or years of antibiotics. Treatment decisions are usually based on the whole picture, including symptoms, imaging, sputum results, and how the disease is behaving over time.
We have a podcast you may find helpful called “Understanding NTM Lung Disease: Risks, Diagnosis, and Treatment Decision.” We also recently hosted a Coffee Break on watchful waiting, and that recording should be available on our YouTube channel next week.
Newly diagnosed with MAC, but my pulmonologist isn’t recommending any treatments at present because I have no symptoms. ‘Bud in tree’ was found on CAC scan, and I was sent to the pulmonologist who does a CT scan every year. The medical center states that the pulmonologist is “advanced in the treatment of NTM”. Also did many sputum samples to determine that it is MAC. The more I read about it - I’m terrified. I’m 62 and still working a full time job. I’m just wondering what to expect and if everyone ends up on months/years of antibiotics. The pulmonologist told me he would see me in a year, unless I became well with fever, coughing up blood, night sweats. Any insight would be greatly appreciated. Very frightened.
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.
DorisJeanne,
Hello! Welcome to our community. We are here to assist you on the NTM journey. There is a lot of information under the Learn More section of the menu. Do you have any specific questions?
Welcome to our community, DorisJeanne! We're really glad you're here!
I'm new to this community. I have MAC and have been treating with the Big 3 since November 2025. Looking forward to learning more about my disease.
🫁 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
Brandon,
Thank you for your great post, your ongoing support and kindness for each member of this community.
I know that many of us don’t like to write about bad/ challenging days…. but this allows you to see that you are not alone since other members are also experiencing challenging days.
I was dealing with many challenging days in June / July with other related comorbidities. I found a wonderful registered dietitian/ coach who has helped me out; I am starting to have more energy, feel like myself again. You must believe that somehow you will get to the other side of your challenge.
Over the Rainbow 🌈, by Judy Garland has been one of my favorite inspirational songs since I was diagnosed many years ago.
I’ve gotten through several real tough health challenges that I was uncertain that i could conquer. I believe that you can do so as well. We are here to assist you to get to the other side of the rainbow 🌈.😍😍
💙 Hey, BronchandNTM360social… How Are YOU Doing?
We're already more than halfway through August, and I thought this might be a good time for something pretty simple:
Let's check in on each other.
It's been a hot summer for many of us. Some have been dealing with heat and humidity, others with wildfire smoke and poor air quality—and then there's everything happening in our own lives that doesn't show up on a weather map.
So, how are you doing?
If things are going pretty well, give us a 👍 or share some good news. We would love to celebrate it with you.
If you're having a harder time, you can tell us that too. You don't have to have the right words or know exactly what you need. Sometimes just saying “I'm having a rough time” is enough to get a conversation started.
One of my favorite things about this community is how quickly people reach out to welcome someone new. There's almost always a hand extended saying, “Come on in. You're in the right place.”
But here's something else worth remembering:
Sometimes the person who is quickest to say hello to everyone else might be the person who needs a hello themselves. 💙
So today, let's make sure we're checking on our longtime friends, our newer friends, our caregivers, our quiet readers—and maybe even the person who is usually doing the checking in.
We've heard plenty about what's happening outside this summer.
I'd really like to know how you're doing on the inside.
👍 Doing okay
❤️ Could use a little encouragement
👋 Just checking in
💬 Or tell us what's going on.
However you answer, we're glad you're here.
So… how are you doing today?
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?
I am glad you will try the salt water. Note- always be mindful if you have high blood pressure when using any salts. One does not swallow the salt with a salt gargle.
Vests are great for many individuals. Vests can be an issue for underweight patients. I used the very in my earlier days of diagnosis. The vest does move the sputum upwards- some people feel frustrated since they don’t feel it is actually bringing the sputum out of their lungs but it is moving it upwards similar to an escalator. Any movement upwards is a success since bacteria are more likely to grow in a stagnant sputum environment. Ongoing airway clearance and meds when needed will get them eventually outwards. Have a pleasant day!
I use a afflovest it has percu ssion for ten minutes vibration for ten minutes and drainge for ten minutes it helps with getting the mucus i have same problem with mucus stuck in back of throat I am now also going to try the salt water. Good luck and stick with it
Lady Graham,
I assume that you are practicing reflux precautions, especially in the evening?Have you tried gargling with warm salt water and or mucinex as needed? We must keep on trying different things until we feel like it is effective. All the very best!
Stephania, I too suffer from excessive throat mucus. I’ve seen two ENT doctors, tried nasal sprays, PPI etc. Now I know this is from my BE&NTM. Drinking fluids and warm fluids thin them out, making it easier to cough out.
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.
Das23,
Another talented ambidextrous young man! I am sure you hit the ball out of the park! You are hitting airway clearance out of the park, with less flare ups! SUCESS !!🤗
Brandon, Great comment! There are many advantages to being ambidextrous. Ambidextrous people are great at music, sports and creative tasks.
Life is full of ongoing changes- we must work on being as adaptable as possible and to keep on marching forward. We must envision better health, a “ why” we do treatments such as airway clearance. We are here to support and to encourage one another. 🤗
I'm a righty but I can bat lefty ⚾️👍
Funny enough, I'm a little bit of both! I vividly remember being corrected in pre-kindergarten for coloring and drawing with my left hand and being told my right was the hand I was "supposed" to use. That mostly stuck, but apparently my left hand never got the memo.
Over the years, other people have noticed things I do left-handed that I don't even think about. It's funny how we naturally find our own way of doing things, and maybe that's the bigger point—adaptability is one of our greatest skills.
There isn't always one "right" way. We adapt, figure out what works for us, and keep going. And when it comes to treatment, if you're using it properly and getting the result you need, that's what matters most.
Brandon,
Thank you for the morning chuckle- never heard of left hander’s day. 😊
I agree that one person has their airway clearance routine down to a science, while another has found a completely different rhythm that works for them. There is no “ cookie cutter “ model for Airway Clearance. We figure out what works best for us over time. Energy management and pacing oneself is a key 🔑 to a better quality of life for BNTM patients.
Below are a few tips on Energy Management:
- Activity Pacing — one should plan activities to avoid overexertion, allowing for breaks to prevent fatigue.
- Task Prioritization — Focusing on essential tasks first helps manage energy levels effectively.
- Rest Intervals — Incorporating regular rest periods during activities can help maintain stamina.
- Simplifying Routines — Reducing unnecessary tasks can conserve energy for more important activities. All of the tips above do take time to implement but it is certainly worth it to improve your quality of life. 😍
✋ Happy Left-Handers Day! 🤚
Calling all lefties! Today, the rest of us would like to formally apologize for scissors, can openers, spiral notebooks, measuring cups, and approximately 97% of everything else apparently designed without consulting you. 😂
And then there are those ambidextrous show-offs thinking, “What’s the problem? Just switch hands!” 🤣
But there might actually be a pretty good lesson hiding in all this…
What fits one person perfectly can feel completely backwards to someone else.
Living with bronchiectasis, NTM, or COPD can be a lot like that.
One person loves doing treatments first thing in the morning. Someone else needs coffee before they even want to discuss the possibility. ☕😂 One person has their airway clearance routine down to a science, while another has found a completely different rhythm that works for them. Exercise, pacing, treatments, getting things done around the house—we all find our own groove.
That’s one of the things I love about this community. 💙 We can share what works for us, learn from each other, pick up a new trick or two, and then figure out what fits our own lives.
Sometimes the best workaround comes from someone saying, “Hey, have you tried doing it this way?”
So today, let's hear from everybody!
✋ Lefties—what everyday object has been your lifelong nemesis?
💡 Everyone—what little workaround, trick, or life hack have you discovered that makes treatments or everyday life a little easier?
And to all our left-handed friends… enjoy your day. Tomorrow, the scissors go back to being against you. 😂✂️
Hello! Were you able to attend the monthly BNTM Coffee Break today on Watchful Waiting, presented by Dr. Shannon Kasperbauer? Do you have any questions about this proactive monitoring strategy for NTM lung issues? It is difficult to answer all questions during the Coffee Break- we are here for any questions that were not addressed. :)
P Jeanne,
Hello! Below is information on how Brinsupri works, the link includes a short video: https://www.brinsupri.com/about-brinsupri/#moa-video
Jeanne,
Hello! Brinsupri does not impact the bone marrow in a negative way.
Brinsupri (brensocatib) does act on a process that occurs in the bone marrow. It inhibits an enzyme called DPP1, which normally activates several neutrophil enzymes—including neutrophil elastase and other enzymes during neutrophil maturation in the bone marrow. This is why you have heard bone marrow mentioned.
A neutrophil is a type of white blood cell—one of your body’s first responders. Think of neutrophils as the “firefighters” of your immune system. They rush to areas where your body detects bacteria or infection.
Hello, I am new to group, starting 5th month of Brinsupri
Where does the information come from that says the drug affects bone marrow? The company's info says it affects overactive immune cells in lungs.
Re side effects, I have had an acceleration of actinic keratosis and drier skin during the first month, and around the 4th month the thick skin on my feet started peeling.
I haven't noticed much improvement if any to Bronchiectasis. I also have untreated NTM.
Pam,
Great question! I get my flu vaccination in late October. Peak flu season is usually late November to March. We are advised to get the flu vaccination a few weeks before the flu season begins since full immunity takes 10-14 days to kick in.
You can read more about the flu vaccination in the link below:
https://biologyinsights.com/how-long-does-it-take-for-a-flu-shot-to-work/
Dr. Mannino's presentation was very informative. My question concerns the flu vaccine, if you, Katie, or anyone can clarify. I have been told to get the vaccine toward the latter part of the fall, in October or even November. Is this correct? Is getting the flu vaccine in September not advisable; is September too early for the vaccine?
I had the privilege of seeing this device in person at a conference, and it is pretty neat. Are you currently using any airway clearance device? If so, do you feel you are getting adequate airway clearance with it?
I ask because when a new machine comes out, it is natural to think the newest one must be the best or will automatically give better results. But everyone’s airway clearance routine is different, and people respond differently to each method or device.
Your routine is likely working well if, over time, you notice:
• Less chest congestion
• Mucus is easier to bring up
• Better energy and sleep
• Less shortness of breath and chest discomfort
• Fewer flare-ups
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.
Bronchiectasis and NTM Association announces collaboration with Insmed on first-in-disease observational study evaluating real-world effectiveness of brensocatib in non-CF bronchiectasis
Welcome Maggie
Welcome to BronchandNTM360social!
Hello! I have just joined and am looking forward to joining community discussions. I'm interested in this presentation on watch and wait, and am wondering if it will be available for replay after the event? I'm in Australia and won't be able to join - due to time differences. Thanks for any info you can share.
Maggie
I also use mucinex and I use flutter devices
Hi Diane78. I nebulize 7% saline. it helps get the mucus out. Sometimes it's a bit difficult and sometimes it's fairly easy. Good luck. Keep us posted
Tim,
Thank you for your update. I am so glad to read that you have not had a flare up since February. I know that average of a few months to work but it involves an individual’s bone marrow- there could be some outliers that require more time for the medication to be truly effective? Insmed , the manufacturer of Brinsupri will continue to post updates on the drug over time.I am glad you are not experiencing any real side effects. Again, thank you for sharing your experience with the community.
Diane,
Hello! You are most welcome! Guaffenisin , over the counter liquid is another medication option that helps loosen mucus. Check drug interactions with your current medications-Guaffenesin may bother acid reflux in some individuals. I took Mucinex for quite sometime in the past. Below is information on airway clearance: https://social.bronchandntm.org/resources/detail/11
Below is information on medications that can assist to loosen mucus: https://www.bronchandntm.org/For-Patients/Learn-More/Managing-Symptoms-and-Daily-Living/Airway-Mucus-and-Symptom-Support/Medicines-for-Airway-Clearance
Katie
Paul A,
Hello! I have read some very positive results on this device as well. This company was founded during the pandemic to assist people who could not get to the hospital/ pulmonary rehab for airway clearance. The very positive results led the founders to expand their local company. Below is the link on the company: https://libairty.health
i have sent an inquiry to find out more on insurance coverage and I will post as soon as I hear back from them. It is so uplifting to see how so many companies are now interested in creating devices for people with Bronchiectasis/ NTM. :)
Saw this has some very positive results. Not sure if covered by Medicare or VA but interested if anyone has used and feedback.
Thank you for the welcome and advice. I am using a nebulizer and two medications. I just don't create much mucus, but will work on doing mucus clearance. I'll ask my doctor about Mucinex.
Met with my pulmonologist in late July and told her I have not noticed any real discernible change in my mucus production. My chronic cough now is a little bit less but that could also be environmental. No side effects as yet. She explained that BRINSUPRI is designed to work on my bone marrow which in time will alter the over production of mucus. She advised me to continue on the medication since I have had no flare ups since February. So, that’s what I’m doing.
Diane,
Hello! Welcome to the community. I am so glad you found us. Many of us deal with similar symptoms. Fatigue is a common symptom- regular airway clearance helps a lot to get mucus up and out. Have you tried normal saline nebulizers or a mucolytic medication such as Mucinex to assist to bring up the sputum? We are @ here” for you.
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?
Vinny M,
Thank you for your response regarding editing. I now understand that automatic editing is not available due to security and safety concerns.
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.
It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. We make every effort to support our members, our medical professionals cannot and will not provide a diagnosis or suggest a specific medication; those decisions should be left to your personal medical team. While we encourage individuals to share their personal experiences with Bronchiectasis and NTM, please consult a physician before making changes to your own Bronchiectasis and NTM management plan.
Community posts are monitored by the 360social Community Manager, as well as staff respiratory therapists, educators, and other medical professionals.