BronchandNTM360social welcomes new member LorenW who joins 5,103 current members of our community. We’re glad you're here!

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. 

5 hours 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.3 hours ago
  • LorenWThank you so much for the thoughtful recommendations. I will follow up with my PCP. 3 hours 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 hour 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.

22 hours 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.19 hours 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 day ago

Karaboo

Karaboo

Anyone have any experience with brinsupri

1 day 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 day 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 day 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.

2 days 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?

2 days 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.

3 days ago

360Coach Brandon

360Coach Brandon

Katie has a great topic to share about Reflux:

Living with bronchiectasis or NTM often comes with more than just lung symptoms. Reflux is something many people also deal with — even when it’s not obvious.

When stomach acid travels upward into the esophagus or throat, it can lead to heartburn, throat irritation, muscle tightness, and extra mucus. Some people never feel classic heartburn at all — this is often called “silent reflux.” If you notice frequent throat clearing, ongoing mucus, or a sore throat that just won’t quit, reflux could be playing a role.

The good news is that small, everyday habits can make a big difference. Here are a few lung-friendly reflux tips that may help:

Eat smaller meals more often and avoid overeating

Choose non-spicy foods

Chew slowly and thoroughly

Focus on lean proteins like chicken, turkey, and fish

Choose whole grains and fiber-rich foods to help absorb stomach contents

Enjoy non-citrus fruits

Opt for low-fat soups and dairy

Choose decaffeinated beverages and avoid peppermint or menthol products

Managing reflux isn’t just about comfort — it’s also about protecting your airways and supporting your lungs.

Do you struggle with reflux? What strategies have helped you the most?
Let’s share and support one another 💙

5 days ago

  • NewestOldestClick to View All Comments8 comment(s)
  • Pam in ColoradoGI specialist at National Jewish in Denver prescribed either omniprozole or famotidine (generic for Pepcid AC). I take famotidine. After a year I have discovered, through much trial and error, that 10 mg rather than 20 mg of famotidine, taken around 10 am, will relieve acid reflux most all day when being conscious of not overfilling the stomach, especially in the evenings, as well as  eating smaller meals, with the main meal being taken at the latest at 12 noon.
    Katie, I will try Reflux Gourmet.4 days ago
  • Ksmiles123Pam, 
    Hello! You are most welcome. I am glad that Pepcid 10 mg works for you. I could not tolerate the higher dose either.  I hope that you like Reflux Gourmet.3 days ago
  • Ksmiles123Pam,
    Please discuss adding any supplements with your gastroenterologist. Supplements have side effects/ interactions for some people. 2 days ago
Ksmiles123

Ksmiles123February is Black History Month- we celebrate great leaders like Mary Eliza Mahoney.  In 1879, Mary became the first Black licensed professional nurse in the United States — at a time when most nursing schools excluded Black students.

Her success challenged racist barriers in professional education and helped legitimize Black nurses in a segregated healthcare system.

She also co-founded the National Association of Colored Graduate Nurses — advocating for equity in nursing education and practice.

Access to nursing didn’t expand naturally. It expanded because leaders like Mahoney refused exclusion.

6 days ago

Seated

Seated

Hello group. Duly diagnosed after 6 month difficult differential decision making. I qualify for both these diagnoses. I am now in a three month period until my next CT scan and physician appointment. Learning about how little Medicine has to offer as far as patient support and prediction of disease progression. It would seem current education that it's up to me to maintain airway clearance at home with six month CT scans to see if I have Cherry Tree or hand and glove scans. Does that sound like anyone else's idea of future life? Some literature seems to say that I have excellent chance of living another five years, i'm currently 78 year old white male, with hx in 2016 of MRSA pneumonia.  (plan to phone patient ambassador line in future)



6 days ago

  • NewestOldest
  • Ksmiles123Seated,
    Yes, it is so frustrating to be a patient with a rare disorder and receive very little or no education on BNTM from your healthcare provider. We must do research on our own, advocate, and empower ourselves through knowledge of these diseases.  Airway clearance is of utmost importance. There is plenty of information under the Learn More section in the menu on the upper right side. Do not believe the literature you read about 5 years; many of us have been around a very long time with this disease. I read that I had 12 years when I was newly diagnosed, and that was 23 years ago- I have no intention of going anywhere soon.  Please do call into the BNTM patient ambassador phone number when you are up to it. :)
    6 days ago
  • das23Hi Seated........I'll echo Katie..Don't listen to the 5 years!!!  I have moderate COPD and mild Bronchiectasis.  I'm 74--I don't plan on leaving here anytime soon!!  Learn all you can!  Make that call👍5 days ago
360Coach Brandon

360Coach Brandon Newly diagnosed with Bronchiectasis or NTM? You’re not alone. 💙

A new diagnosis can bring a lot of emotions and questions, and it’s okay to take things one step at a time. Bronch & NTM 360social has dedicated spaces created especially for people who are just beginning this journey.

Within the community, you’ll find sections and discussions focused on:

Understanding your diagnosis – clear, patient-friendly information

Living your best with Bronchiectasis and NTM – everyday tips for routines, airway clearance, pacing, and self-care

Shared experiences – learning from others who truly understand

Encouragement and connection – support when you need it most

In addition to community support, we offer one-on-one help through our Bronchiectasis & NTM 360 Patient Ambassadors. Our Patient Ambassadors are real patients who understand what you’re going through and are available to listen, share resources, and help you find your footing. You can call toll-free (833) 411-5864, or you can email contactus@bronchandntm.org.

Whether you’re here to read quietly, ask your first question, or connect directly with someone who’s been in your shoes, you’re welcome here. Move at your own pace -- there’s no right or wrong way to begin.

✨ We’re really glad you found us, and we’re here to walk alongside you as you learn how to live your best with Bronchiectasis and NTM.

Here is a section that may be a good place to start:
https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Newly-Diagnosed

Newly Diagnosed | Bronchiectasis and NTM Association

Receiving a diagnosis like bronchiectasis and/or nontuberculous mycobacterial (NTM) lung disease can seem overwhelming. Feelings of sadness, fear, anxiety and/or confusion are perfectly normal. Here we hope to provide newly diagnosed patients with the education and tools needed to navigate those …

6 days ago

Lucinda

Lucindavoted on The Effects of Ultra-processed Foods Causing Hidden Hunger

Gave a thumbs up for a blog post!

6 days ago

Ksmiles123

Ksmiles123

Hello! Inflammatory markers
were discussed at our last BNTM Coffee Break. Below is a review of the two most
commonly used inflammation markers: the Erythrocyte Sedimentation Rate
(ESR) test, which measures the rate at which red blood cells settle at the
bottom of a test tube over a specified period. This rate increases with
inflammation. ESR values typically range from 0-22 mm/hr for men and 0-29 mm/hr
for women. Elevated ESR levels can indicate inflammation due to infections,
autoimmune diseases, and chronic inflammatory diseases.

CRP (C-reactive protein) is a
blood test that measures the level of C-reactive protein, which the liver
produces in response to inflammation. Normal CRP levels are generally less than
10 mg/L. High CRP levels indicate inflammation and can be associated with
infections, chronic inflammatory diseases, and other health conditions.
Elevated CRP levels require further diagnostic testing to determine the root
cause. It is a good practice to keep a paper copy of your labs or to view them on your patient portal to see trends over time. Please let us know if you
have any questions.

1 week ago

Ksmiles123

Ksmiles123Happy Chinese New Year to those who celebrate 🎉 this holiday. 2026 will be the Year of the Horse, specifically the Fire Horse, symbolizing "energy, freedom, and forward momentum”. The horse is also synonymous with strength, grace and determination, and this zodiac sign serves as a powerful symbol of perseverance, freedom and momentum for the upcoming lunar cycle.The horse is traditionally regarded as an emblem of confidence and forward motion, suggesting a period defined by significant opportunity and success. I love the idea of “ forward motion “ for all of our members. Today is a new day to march forward for all BNTM members , using preventative measures and self care to work towards the best quality of life for each member.

1 week ago

  • NewestOldest
  • 360Coach Brandon Happy Chinese New Year! 🧧🐎
    Wishing our Bronch and NTM community a joyful Year of the Horse—full of fresh energy, steady strides, and good vibes along the way. We hope you’re able to enjoy a wonderful celebration filled with laughter, great food, and meaningful moments. 🎉✨

    Here’s to a bright, healthy year ahead. 💙1 week ago
  • Ksmiles123Great food, some laughter and meaningful moments are a part of the healing recipe. Enjoy your day! 1 week ago
Ksmiles123

Ksmiles123Presidents Day, officially Washington s Birthday, is a holiday in the United States celebrated on the third Monday of February to honor all persons who served in the office of president of the United States. The federal holiday specifically honors George Washington, who led the Continental Army to victory in the American Revolutionary War.

1 week ago

Ksmiles123

Ksmiles123Hello! Are you able to get some exercise in throughout the winter months? Exercise is good for our hearts, 💕, lungs and our emotional wellbeing. Five to ten minutes a day, is far better than no exercise. It is recommended to start out slowly and to gradually increase your exercise plans over time. The link below reviews the benefits of exercise. https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Exercise
Please share your exercise routine with other BTM members. We are here to encourage one another to improve the quality of our lives.😍😍😍

1 week ago

  • NewestOldest
  • das23I'm in a gym or out hiking almost everyday. In the gym I use the weight machines and treadmills etc. Luckily for me I've always exercised so when I was diagnosed with moderate COPD and later mild Bronchiectasis I just continued. I believe exercise has saved me. If you are new to exercise just start out slow. Do as much as you can--any exercise is good. We need to move if we can. Pulmonary Rehab is a great way to get started. Soooo---get movin' if you can--it Works!!!!!1 week ago
  • Ksmiles123Das23, 
    I wholeheartedly agree with you.
    “ Get moving” are the key 🔑 words to improving the quality of life for individuals with lung issues. It is fine to take a day off when not feeling up to par, but pushing through on the following day is the best medicine of all. 1 week ago
Helen’sHelper

Helen’sHelper

🙀 Helen just joined up here and I am very excited. I am her caregiver. She is working on learning the harmonica. It’s hard for her, but it’s great that she’s doing it.

1 week ago

  • Ksmiles123Welcome Helen’s Helper! :? :)
    We are so glad you found the site. Any attempt is better than no attempt at all- we can only do our own personal best.
    We are here for the both of you if you have any specific questions. Please tge review the menu in the upper right corner for valuable educational information.:) 1 week ago
HelenKingAZ

HelenKingAZ

😐 Beginning to learn the harmonica in between coughing

1 week ago

Ksmiles123

Ksmiles123Hello! Good nutrition is a part of self care. Taking time to prepare nutritious meals is a gift 🎁 to yourself that will pay off in the long run. Below is a link that reviews the basics of nutrition: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Nutrition

Nutrition | Bronchiectasis and NTM Association

Good nutrition is an important part of wellness in patients with bronchiectasis and nontuberculous mycobacterial (NTM) lung disease. People who have bronchiectasis and NTM lung disease may use a lot of energy to breathe.

1 week ago

Ksmiles123

Ksmiles123

Hello! Happy Valentine’s Day, Galentine’s Day or whatever you call this day of celebrating our hearts 💕♥. I hope that you enjoy this day whether you are married, single, divorced, widowed, in limbo. Feeling supported is associated with shifts in immune regulation, including inflammatory pathways linked to long-term chronic disease risk.

Connection is a basic human need and an important nutrient similar to meds and food. . We are here to support you here on line , via the phone 833-411-5864, or via email at contactus@bronchandntm.org. I hope that you have a good day getting pampered by someone or pampering yourself- you have been dealing with health challenges and you deserve it. 
💕♥❤💐🎊🎁🤗

1 week ago

Ksmiles123

Ksmiles123

Hello! Albumin and Prealbumin were discussed during our
recent BNTM Coffee Break.

Total protein has two main components—albumin and globulin.
The body’s protein is derived from ingested food and is influenced by the
quality of diet, as well as by liver and kidney function.

Below is a basic review of Albumin vs. Prealbumin. Think of
them as nutrition markers with different time speeds.🥣
Albumin =“Long-term fuel tank”. Albumin reflects overall nutrition over
weeks to months. Low albumin can mean: poor nutrition over time, chronic illness/inflammation.
Low albumin is linked with weaker breathing muscles and slower recovery. Prealbumin
= “Weekly check-in”. Prealbumin reflects recent protein intake -the last few
days to a week.

This marker is helpful to see if nutrition support is
working, if protein intake is improving, and if recovery is moving in the right
direction. It also drops with infection, inflammation, stress, and steroid use.
This matters for BNTM patients since breathing takes muscle strength.
Malnutrition can lead to a weaker diaphragm, greater fatigue, slower healing, and a higher risk of infection. This is an important lab to check before a patient has
surgery.

This explains why good nutrition is so important for us. We
may be tired on some days of preparing meals, but having quick, easy meals available is essential to a better quality of life.







1 week ago

Ksmiles123

Ksmiles123

Hello! Were you able to attend the BNTM coffee break yesterday with Michelle MacDonald, MS, RDN?  Do you have any follow-up questions?

1 week ago

Seated

Seated

Any Seattle peeps here?

1 week ago

Seated

Seated

hi group, new today. How to start? Can I access others comments? Do I self introduce? Double Dx one mo ago. Now need to construct a PIP (pulmonary improvement plan). Learn about milestones, outcome measures. Maybe local counselor and trainer.

1 week ago

360Coach Brandon

360Coach Brandon

Hello! 😊
Are you ready for a gentle review of routine lab numbers?

The previous post reviewed the purpose of each of the 20 lab markers or measurements in an SMA-20 panel (Sequential Multiple Analyzer panel), also known as a CMP (Comprehensive Metabolic Panel). The SMA-20 or CMP measures key electrolytes, kidney and liver function markers, glucose, and proteins.

Too often, healthcare providers list these tests and numbers quickly, expecting patients to fully understand what they mean. The goal of sharing this information is to help you better understand these markers and the significance of any abnormal values. It’s hard to make informed changes—or ask meaningful questions—if we don’t fully understand what the targets are.

Below are normal adult reference ranges, provided for general educational purposes. Please note that ranges may vary slightly between laboratories and publications:

Glucose (fasting): 70–100 mg/dL
Sodium (Na+): 136–145 mEq/L
Potassium (K+): 3.5–5.0 mEq/L
Chloride (Cl–): 95–105 mEq/L
CO₂ (Bicarbonate): 22–28 mEq/L
BUN: 7–20 mg/dL
Creatinine: 0.6–1.2 mg/dL
Calcium (total): 8.4–10.2 mg/dL
Phosphorus: 3.0–4.5 mg/dL
Magnesium: 1.5–2.0 mg/dL
Total Protein: 6.0–7.8 g/dL
Albumin: 3.5–5.5 g/dL
Globulin: 2.3–3.5 g/dL
ALT (Alanine Aminotransferase): 10–40 U/L
AST (Aspartate Aminotransferase): 12–38 U/L

I hope this helps you feel better equipped to ask your healthcare provider questions about your SMA-20 lab results and to better understand what your numbers may be telling you.

1 week ago

Ksmiles123

Ksmiles123A SMA20 blood test is frequently ordered by your primary care provider and or your pulmonologist while under their care. Medications are filtered through the liver and kidneys.
Medications, illnesses, and changes in nutritional intake can affect these numbers. The article below explains the meaning of each of the 20 tests. Hopefully, you will have a better understanding of what is going on when your healthcare provider reviews your results.

https://healthresearchfunding.org/smac-20-blood-test-results-explained/



SMAC 20 Blood Test Results Explained - HRFThe SMAC 20 blood test is a regularly ordered group of tests that helps to determine what the overall status of health of a patient happens to be. Most patients will be required to fast for a minimum of 12 hours before having the blood draw for this test. Results are typically available in 24-48 …

SMAC 20 Blood Test Results Explained - HRF

The SMAC 20 blood test is a regularly ordered group of tests that helps to determine what the overall status of health of a patient happens to be. Most patients will be required to fast for a minimum of 12 hours before having the blood draw for this test. Results are typically available in 24-48 …

2 weeks ago

Ksmiles123

Ksmiles123Hello! February is healthy heart month❤❤❤. Are you keeping good tabs on your cholesterol levels? The terms LDL, HDL and more  can be confusing The article below from the Cleveland Clinic reviews the different types of cholesterol and treatment options. https://my.clevelandclinic.org/health/articles/11920-cholesterol-numbers-what-do-they-mean

What Should My Cholesterol Levels Be?

Target cholesterol levels vary by your age, sex, family history and risk factors. But there are general guidelines.

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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