BronchandNTM360social welcomes new member Norma in San José who joins 5,115 current members of our community. We’re glad you're here!

360Coach Brandon

360Coach Brandon Hello everyone! 

Our next BronchandNTM360social Coffee Break is Wednesday, March 11, 2026 @ 2:30pm EST.

This month we’ll be joined by Divya Reddy MBBS, MPH to discuss exacerbations and the role DPP1 inhibitors (such as Brinsupri) have in minimizing exacerbations. Dr. Reddy is the Associate Professor of Medicine / Fellowship Director, Pulmonary and Critical Care Medicine Director, Bronchiectasis and Nontuberculous Mycobacterial (NTM) Disease Program at Montefiore Einstein.

Resources:
https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Exacerbations

We will open the call fifteen minutes early, so please join us if you wish to speak casually with us or other community members. Any health-related discussion will be held until the start of the meeting.

The meeting registration link is here: 
https://us06web.zoom.us/meeting/register/tZclcuusrDMpG9PrF3BDUA2nw2csTkQsg7EG#/registration 

Looking forward to seeing you soon!

Exacerbations | Bronchiectasis and NTM Association

People with bronchiectasis and NTM lung disease sometimes struggle with staying well. Inflammation coupled with mucus pooling in the lungs becomes a breeding ground for bacteria. If you are unable to clear the mucus from your airway, you may have a greater chance of having an exacerbation (x-saa …

11 hours ago

  • Ksmiles123I am looking forward to listening to Dr Reddy speak about Respiratory Exacerbations. Knowledge empowers us to take more preventative measures to reduce the number of exacerbations throughout the year. 2 hours ago
Suepink1

Suepink1asked the question: HRT

I'm sure I heard on a webinar something about HRT and NTM/BE. Does anyone know of any studies into the effect of HRT on post menopausal women who get NTM? I'm wondering if it might help prevent NTM in the first place, but then once you've got it, or had …

1 hour ago

Ksmiles123

Ksmiles123asked the question: Hello! Do you use medications while doing your airway clearance?

Mucolytics are medications that thin or break up the sputum in your lungs, making it easier to cough up and out. These medications assist one to clear out the mucus as much as possible. Below is a link to the different medications. Please let us know if …

7 hours ago

Ksmiles123

Ksmiles123

Hello! Living with Bronchiectasis or NTM can sometimes
make it feel like your lungs are in charge- every time you do your airway
clearance, you take that control back. Airway clearance isn’t just a treatment
— it is an act of self-care and strength. Each session helps clear mucus and
reduces the risk of infection.

Some days it’s easy. Some days it takes real
determination—both count. Every session matters✨ . Every effort counts. Every day
you show up for your health is a win.

You may not see the results immediately, but over time,
these small, consistent actions make a powerful difference for your lungs and
your quality of life—today’s reminder: You are not powerless in this disease. Your
Airway Clearance Is Your Power 💙. Your daily self-care
is your strength. 💪💙



1 day ago

Ksmiles123

Ksmiles123Hello! There are many different types of airway clearance devices. Which one do you use?It does take some patients time to figure out which device is most suitable and effective for them to use on an ongoing basis. Below is a link that reviews the different types of devices. Keep on doing your airway clearance- better days are on the horizon. https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Coping-with-Airway-Mucus/Airway-Cleara

Coping with Airway Mucus | Bronchiectasis and NTM Association

Individuals with bronchiectasis and nontuberculous mycobacterial (NTM) lung disease struggle to keep their airways clear of mucus. Bronchiectasis causes too much mucus, which collects in the lungs. It also creates expanded airways, which makes it harder to cough up the mucus. The cilia in the …

2 days ago

Ksmiles123

Ksmiles123answered the question Update on NAC

Please keep us updated on how you are doing with NAC. It seems to be recommended more in the UK and other countries than the USA.
Indywoman also answered the question Indywoman also answered the question

2 days ago

CodyJames

CodyJames

Hi I’m new here. I was born with COPD due to complications at birth. I’m 38 years old. I went 30 years without seeing a pulmonologist but this past Christmas I got pneumonia and it was suggested I go see one. A week ago I had a pulmonary function test and a ct scan that said I had severe bronchiectisis and a FEV1 of 20%. The first time meeting the pulmonologist he told me I would be on a ventilator in 4-5 years and referred me to a lung transplant facility. I was shocked. And now I’m terrified I’m gonna die in a couple years

2 days ago

Kalli Mago

Kalli MagoMarch is Sleep Apnea
Awareness Month! Studies suggest that more than 50% of people with
bronchiectasis also have obstructive sleep apnea (OSA).1 


Common symptoms of
sleep apnea include loud snoring, gasping for air in your sleep, difficulty
staying asleep, waking up with a dry mouth, having headaches in the morning,
and feeling sleepy throughout the day. If you share a bed with someone, they
might also witness sleep apnea symptoms, like breathing that stops and then
restarts as you sleep. 


For people with both
bronchiectasis and sleep apnea, the most common symptoms are snoring and
daytime sleepiness. However, some people with bronchiectasis have OSA without
recognizing any symptoms.1 If your doctor has not already started
the conversation, talk to them at your next appointment about whether you
should be evaluated for sleep apnea. 


Resources 
1. Borekci S, Hacoglu
Y, Musellim B. Investigation of obstructive sleep apnea in adult non-cystic
fibrosis bronchiectasis patients. Eur Resp J. 2019;54(63). doi:10.1183/13993003.congress-2019.PA631

3 days ago

Indywoman

Indywomanasked the question: Update on NAC

Have looked through the questions/answers on NAC. Saw this about 3 months ago. https://pmc.ncbi.nlm.nih.gov/articles/PMC12603500/ I have asthma/Bronchiectasis. People taking this were in threads a while ago. I don't want to take more supplements than I …

3 days ago

360Coach Brandon

360Coach Brandon

National “I Want You to Be Happy” Day 😊💙

Today is simple… and powerful.

I want you to be happy.
Not “perfect day” happy.
Not “everything is easy” happy.
Just real-life, breathing-through-it, doing-the-best-we-can happy.

Living with COPD, bronchiectasis, NTM -- or caring for someone who does -- isn’t always light. So today feels like a good day to talk about intentional happiness.

Here are a few gentle ideas for both patients and caregivers:

🌬️ For patients:

Step outside (even for 2–5 minutes) and take slow, supported breaths. Fresh air + paced breathing can shift your whole mood.

Play a song that lifts you -- even if you just sway in your chair.

Text someone in this community and say, “Thinking of you.”

Celebrate something small: good sats, finishing airway clearance, making it through a tough morning.

🤝 For caregivers:

Take 10 guilt-free minutes just for you. Sit. Breathe. Quiet.

Accept help if it’s offered -- happiness sometimes looks like sharing the load.

Do one thing that’s only for your joy today (music, walk, call a friend, favorite snack).

Remember: your well-being matters just as much.

💙 And for all of us…

Happiness doesn’t have to be big. It can be:

A fluffy pet beside you

A steady breathing day

A laugh during Coffee Break

A message that reminds you you’re not alone

Let’s make this interactive:

✨ Drop ONE thing that helps you feel a little happier on hard days.
✨ Or tag someone here and tell them, “I want you to be happy.”

You never know whose day you might gently lift.

I want you to be happy. Truly.
And I’m really grateful we get to do this together!

3 days ago

Ksmiles123

Ksmiles123Hello! Are you doing airway clearance on a daily basis? Airway clearance is frequently compared to flossing your teeth. Clearing out your airways lessens the chances of getting a respiratory infection. Bad respiratory infections can lead to cavity formation in your lungs , similar to a cavity in your teeth. Below is the link to manual airway clearance techniques. https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Coping-with-Airway-Mucus/Manual-Airway-Clearance-Techniques

Manual Airway Clearance Techniques | Bronchiectasis and NTM Association

Chronic cough is a major symptom of bronchiectasis. This is caused by too much mucus in the lungs and expanded airways that makes it hard to cough out the mucus. Tiny hair-like structures in the lungs, called cilia, move mucus out of the small airways.

3 days ago

Seated

Seated

Better after talk w/John, PtAmbas.

5 days ago

Ksmiles123

Ksmiles123Hello! The month of March has begun!!! Daylight savings time begins in 7 days. We have endured a very challenging winter with frigid temperatures and a lot of snow. March reminds us that even after the longest winters, healing can quietly begin again. Spring and nicer weather are on its way — and so is renewed energy, and hope.Here’s to a month filled with resilience .💙 
Throughout this month, we will focus on pulmonary rehabilitation, airway clearance devices and health equity. 

5 days ago

Ksmiles123

Ksmiles123Hello!  Are you interested in watching a video? The video below on GERD/ Acid Reflux, presented by Dr. Gwen Huitt, ( formerly of National Jewish Health) offers practical tips on managing acid reflux effectively https://m.youtube.com/watch?v=lf_hSgJ21BY
Please let us know if you have any questions. :) 

6 days ago

Kalli Mago

Kalli MagoHappy Rare Disease Day! Each year, this day shines a spotlight on rare diseases, helping to raise awareness for the 300 million+ people around the world who live with a rare disease. 

Did you know living with a rare disease isn’t actually that uncommon? According to the National Organization for Rare Diseases (NORD), one in every 10 Americans is affected by a rare disease. 

In the United States, a rare disease is generally considered one affecting fewer than 200,000 people across the country. By the numbers, NTM is a rare disease, impacting an estimated 86,000-200,000+ Americans. Bronchiectasis is technically not a rare disease; between 340,000 and 522,000 adults are receiving treatment for bronchiectasis in the U.S. However, bronchiectasis is still underrecognized and often misdiagnosed. 

As you may know firsthand, people with rare or uncommon diseases often face additional challenges, from difficulty getting a timely diagnosis to limited research and lack of community support. In honor of Rare Disease Day, we stand together with millions of people around the world. We encourage you to share your story and connect with others who understand what it’s like to live with a rare disease.

6 days ago

Ksmiles123

Ksmiles123

Hello! Many BNTM patients don’t understand the need for a
gastroenterologist. We are often
overloaded by the number of specialists that we are advised to see. I am
reviewing basic GI testing so you can be empowered to understand and ask the
right questions when you do see a gastroenterologist.

🌡️ Esophageal pH monitoring
measures acid levels in your esophagus. It tells your doctor: How much acid is
refluxing from the stomach into the esophagus. How often reflux happens, and
how long acid stays there.

What does “pH” actually mean? pH is a scale that measures acidity:
7 = neutral, below 7 = acidic. The lower the number, the more acidic your
stomach is; stomach acid is very acidic (around pH 1–3). Your esophagus should
not be exposed to that acid frequently. If testing shows repeated drops in
esophageal pH below 4, it usually indicates significant acid.

💡 Why This Matters for BNTM-
significant acid can weaken the lower esophageal sphincter (LES) and the
esophageal clearance, which is how well acid is pushed back down. This can lead
to: chronic reflux, silent reflux, inflammation, difficulty swallowing, and or
chest discomfort.

pH testing helps determine whether acid is truly the
cause of symptoms; it checks whether acid is damaging the esophagus or if
something else is going on. pH testing can be done the traditional way, with a
thin catheter placed in your nose or with a Bravo Capsule (a camera inserted
into your esophagus) during an EGD. Please discuss these options with your
healthcare provider. Understanding what is really going on in your upper
gastrointestinal system will determine what meds are most suitable for you. You
do not want to be on the wrong medications for an extended period of time.

1 week ago

Ksmiles123

Ksmiles123

Hello! Staying proactive about your health isn’t optional —it
is essential for our community.🔍 Early Insight = Better Outcomes.
Has your healthcare provider suggested Manometry for you?

Manometry helps detect non-obvious changes before symptoms become
serious. Catching issues early means more treatment options, less invasive
interventions, and better overall health management. Testing gives your
healthcare team measurable data — not guesses — so they can monitor progression
and adjust treatment at the right time.

If you are a BNTM patient dealing with reflux, or unexplained
digestive symptoms, manometry testing can be a game-changer. Performed by a
gastroenterologist, manometry is a specialized test that measures how well the
muscles and nerves in your digestive tract are working and how well the lower
esophageal sphincter,(LES) opens and closes

Why It Matters for BNTM patients:

✅ Identifies swallowing disorders
(dysphagia)

✅ Diagnoses motility disorders
Conditions like esophageal spasm or ineffective motility

✅ Guides treatment
decisions-results help your care team choose the right medications, therapies,
or interventions.

✅ Prevents complications-
untreated motility issues can lead to malnutrition, aspiration, or worsening
reflux. Manometry isn’t just a test — it’s a roadmap for your healthcare
provider.

1 week ago

Ksmiles123

Ksmiles123asked the question: Do you understand the difference between Manometry and Ph testing?

The Key Difference between the two: Manometry = How the muscles are working pH monitoring = Determines whether acid is coming up and how much Together, they give a complete picture of function and acid exposure, which is especially …

1 week ago

TimD

TimD created the event March 2026 BronchandNTM360social Coffee Break

Hello everyone! Our next BronchandNTM360social Coffee Break is Wednesday, March 11, 2026 @ 2:30pm EST. This month we’ll be joined by Divya Reddy MBBS, MPH to discuss exacerbations and the role DPP1 inhibitors (such as Brinsupri) have in minimizing …

1 week ago

Suepink1

Suepink1

I'm off my Ciprofloxacin after two weeks, was meant to be on it for three, but my lower legs seemed to belong to someone else, and I misjudged a step while boarding a train and fell hard onto my knees.   No real damage done.   However, while I was on the Cipro and I can now confirm it was that because the side effects have stopped, I couldn't walk further than about 250m without feeling my lungs would explode, struggled up our driveway which probably has a 15 degree incline, had increased chest pain and then of course, the tingling lower legs.   Doctors said those type side effects were very rare so probably not the Cipro causing it.
Hmmm, so how do you 'make a fuss" about it so they take you more seriously.

I think I'm sensitive to a lot of the medications, hence I reckon I'd be one of the best clinical research guinea pigs!
All good now though - sort of...

1 week ago

  • NewestOldestClick to View All Comments5 comment(s)
  • Ksmiles123SuePink,
    Hello! I am so glad that you are okay and did not sustain any injuries from your fall.  Many people are sensitive to certain chemicals, such as antibiotics.  Have you had a good GI workup recently?  Sensitivities are frequently seen when someone has digestive issues.  Were you well hydrated? Some people drink less fluid while they are traveling. Have you had a thorough cardiac workup as well?  You can make a fuss if you want, only you know your body and side effects- you can report the side effects to the FDA. I would certainly stay away from Cipro for a while.  I hope that you continue to feel better soon.
    1 week ago
  • LucindaI would be a clinical research guinea pig as well. I react oddly to most all medications. I'm the 1 in 1 million on the package insert to have a rare reaction. I've read there are certain genes that play a role in a persons hypersensitivity to medications. It would be interesting to know more. I would always be upfront with your prescribing provider and make them aware of your sensitivity. I do this with every provider I see. They usually start me off with the lower than usual dose. It's been helpful. 1 week ago
  • Ksmiles123SuePink, Lucinda,
    You are making me feel better- I am also that person who experiences adverse effects from drugs and supplements that make my healthcare providers roll their eyes, and saying- “ I never heard of that type of reaction before “. 1 week ago
Ksmiles123

Ksmiles123

Hello! Have you had an Endoscopy recently? Why Do Bronchiectasis & NTM Patients Get One? Think of an endoscopy as a tiny camera tour inside your body. A doctor gently guides a thin, flexible tube using a light and a camera through your mouth to examine your esophagus, stomach, and upper small intestine. It sounds frightening—but most people are comfortable and sleepy during the procedure, and it usually takes 15–30minutes. Why It Matters for Bronchiectasis & NTM Patient in BNTM lung disease, gastroesophageal reflux (GERD), and aspiration are major hidden contributors to lung damage. Many bronchiectasis/NTM patients have: Acid reflux, weak lower esophageal sphincter, hiatal hernia, and or delayed gastric emptying. Refluxed acid or food can travel up and be micro-aspirated into the lungs, worsening infection and inflammation. Endoscopy helps detect: Esophagitis, Barrett’s esophagus, Hiatal hernia, and Severe acid damage. Patients without classic heartburn may have “silent reflux.” Preventing Ongoing Lung Reinfection- Repeated aspiration can: Feed NTM organisms, worsen bronchiectasis, cause chronic cough, and reduce antibiotic effectiveness. Evaluating Medication Side-Effects: These can cause: Gastritis, Ulcers, Esophageal irritation. Endoscopy helps identify damage if patients report: Persistent nausea, Pain when swallowing, Upper abdominal pain. Nutritional Issues- Many BNTM patients struggle with: Low body weight, Poor appetite, Malabsorption. Endoscopy can check for: Gastric inflammation, Ulcers, Celiac disease, and structural issues affecting intake. Please let us know if you have any specific questions.

1 week ago

LorenW

LorenW

Hello All. I have recently been diagnosed with NTM/Bronchiectasis. I am 52 years old. I have not started treatment yet, and I’m very anxious. I had all the testing done last week ( sputum sample, blood tests, pre/post spirometer) I’m scheduled for a bronchoscopy and sweat test. I was diagnosed with high blood pressure a year ago. I am on Telmisartan and Hydrochlorothiazide.and propranolol. Even with medication, my BP is still high. I was rushed to the ER on Sunday because my left pupil was much larger than my right, which can be a sign of stroke or aneurysm. They did a CT of my brain and it’s clear. My BP was very high. I have also had a hard time sleeping. I don’t feel tired and when I try to sleep, I feel restless. I have reached out to my Infectious disease physician at National Jewish and have not received a call back. I’m wondering if my high blood pressure is because of the inflammation. Also, what’s the deal with my left eye? It feels irritated all the time. I saw an optometrist and he couldn’t see anything. I can’t seem to get any answers and I’m very frustrated. 

1 week ago

  • NewestOldestClick to View All Comments4 comment(s)
  • 360Coach Brandon Hi LorenW, we're glad you're here, though it sounds like you have had a rough journey for sure. I hope you can find comfort and answers for what is happening with your blood pressure.1 week ago
  • LorenWThank you so much for the thoughtful recommendations. I will follow up with my PCP. 1 week ago
  • Ksmiles123Loren,
    You are most welcome! Some PCP offices have walk in hours- I hope you can get to communicate with your PCP soon in person, via phone or the portal.  Make sure staff know that this is an urgent matter, and that you were in the ER for this last weekend.  Please seek urgent care if your symptoms , blood pressure gets worse if you are not getting a response from your PCP in a timely manner. Your health is your priority. 1 week ago
KC

KC

Has anyone had wedge resection to remove diseased part of lung where bronchiectasis is localized. I've had MAC 4 times and surgery is being suggested. I'm 72 and concerned about risks vs benefits and am curious how you fared, what healing time was and if symptoms of cough and shortness of breath improved drastically.

1 week ago

  • Ksmiles123Hello! I have heard relief from patients who have had this surgery. It is not a super invasive surgery but any surgery depends upon your comorbidities and current state of health. I would highly recommend getting it done at a hospital that does a large number of these cases by a very qualified surgeon. 
    Recovery after lung surgery for NTM typically takes 3 to 6 weeks, with most patients hospitalized for 2 to 4 days post-procedure. Walking begins the day after surgery, and you'll be prescribed oral pain medications that taper over several weeks. Many people achieve culture conversion and successful infection control.1 week ago
Ksmiles123

Ksmiles123Hello! While many of us are safely inside during today’s blizzard in the northeast , there are extraordinary healthcare workers showing up—again and again—through the snow, the wind, and the long and challenging hours. I was stuck at a hospital for 3 days during a blizzard, while working as a nurse many years ago. To the nurses, respiratory therapists, physicians, techs, and support staff caring for patients with bronchiectasis and NTM… thank you. Your dedication ensures treatments continue, airways stay clear, and patients feel supported—even on the toughest days. If you’re a patient or caregiver, take a moment in a few days to send a message of gratitude to your healthcare provider who is working- It matters more than you know.Stay safe. Stay warm. 💙

1 week ago

Karaboo

Karaboo

Anyone have any experience with brinsupri

1 week ago

Ulcerative colitis/Bronchiectasis

Ulcerative colitis/Bronchiectasis

Asking if certain states are better for living with Bronchiectasis in the lungs. I live in Maine and cold weather triggers minor to major flares. 

1 week ago

  • Ksmiles123Hello! Cold weather can trigger flares in some individuals. Are you doing airway clearance? Do you have a rescue inhaler, bronchodilator to assist you on these very cold days? There is no perfect place to live- it is best to avoid severely hot, humid places as well. We have assistance available for you in many forms. In addition to the community support you receive here on BronchiectasisandNTM360, you can call one of our Patient Ambassadors directly by phone at (833) 411-5864. Our Ambassadors are real live patients with experiences similar to yours and understand  your concerns. You can also email us at contactus@bronchandntm.orgto get more information about any climate questions .  Our Ambassadors can’t provide medical advice but may be able to assist you with additional information on the impact of weather and your respiratory health. 1 week ago
Ksmiles123

Ksmiles123

Hello! Are you a caregiver? There are support Groups- online
and in-person support groups provide a platform for caregivers to connect with
others facing similar challenges. These groups allow for sharing experiences, advice,
and emotional support. The link below includes information about our BNTM 360
Social Monthly Coffee Breaks, NTMir link for in-person local support groups,
and information about support through the BNTM Care Center Network:
https://www.bronchiectasisandntminitiative.org/Learn-More/Educational-Materials-Resources/NTM-Support-Groups

Educational Resources- this site, Bronchiectasis and NTM offer
educational materials in the menu above on the right-hand.

I have been a BNTM patient, a nurse, and a BNTM patient
advocate for a long time. I have firsthand experience as a caregiver of a
family member who has metastatic cancer for many years. I have witnessed a lot throughout
the years, and I realize how challenging caregiving can be at times. Please do
find some ways to take care of yourself as well. Too often, people ask about
the patient but fail to ask how the caregiver is doing emotionally and
physically. We are here to support you and to check in to see how you are
doing. If you are seeking assistance, please email us at contactus@bronchandntm.org or call
(833) 411-5864.

1 week ago

360Coach Brandon

360Coach Brandon

🌿 Good Morning & Happy Sunday

Good morning, Bronch and NTM 360social 💙
For many areas, today may bring snow—or even blizzard conditions. If that’s you, this is a gentle reminder that it’s okay to slow things down and stay safe.

Changing plans to protect your breathing, your energy, and your well-being is not something to feel guilty about—it’s taking care of yourself.

Whether today means staying warm inside, adjusting plans, or simply taking things one breath at a time, that choice matters.

✨ What’s one small thing you’re doing today to take care of yourself?

1 week ago

Ksmiles123

Ksmiles123Happy National Caregivers Day! Today we celebrate individuals who dedicate their time to care for others, both in a personal and professional capacity.

To all the caregivers in our community: thank you for your tireless dedication to improving the lives of others! Your care makes a real and lasting impact.

2 weeks ago

Medical Advice

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. While we encourage individuals to share their personal experiences with bronchiectasis and NTM, please consult a physician before making changes to your own disease management plan.

 
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