Activity Feed

KellyAM,

Hello! Yes, someone will get back to you when you call the number posted. The number is available for all BNTM 360 members. We are here to support you. 

You can check the events page here -> https://social.bronchandntm.org/events

Is there an area on this website to find the date or dates, for the next Zoom Meeting?? I wish I could’ve joined the last one given.  

In regards about the phone number listed in post — will I reach someone who can answer my specific question? I thought in your first reply meant the number was assigned just to me for my issue. Is that right?

Living with bronchiectasis, NTM lung disease, or other chronic respiratory conditions can take a significant mental and emotional toll. Many men report dealing with isolation, anxiety about breathing symptoms, treatment fatigue, loss of physical capacity, and concerns about work or family responsibilities. Too often, men feel pressure to "push through" in silence. But mental health is just as important as lung health.

If you're living with bronchiectasis or NTM: ✅ Talk openly about how you're feeling ✅ Stay connected with supportive people ✅ Celebrate small victories and progress

Seek help from a mental health professional if needed. For counseling, support groups, and mental health education, NAMI (National Alliance on Mental Illness) offers information on most mental health challenges: https://www.nami.org/

When searching for a therapist, consider looking for someone with experience in: Chronic illness, Health anxiety, Acceptance and Commitment Therapy (ACT), and Cognitive Behavioral Therapy (CBT) for chronic disease. Psychology Today’s support group locator -use this filter to find a professional in your area.   https://www.psychologytoday.com/us/therapists/co/denver.  You have to enter your state's ZIP code.

Your mental well-being matters, and you don't have to face this journey by yourself. How do you get the most support from others? Do you feel understood by family and friends on challenging days, such as a flare-up?

Kelly,

No need for an apology- I truly understand how you are feeling- I have been there. Do consider making the phone call, if and when you are up to speaking with someone who can support you during this time.  833-411-5864

Katie 

Sorry for late reply, I spend most of my time sleeping, I have severe exhaustion. Thank you for this invite unfortunately I have to decline at this time 

It is so exciting to read that 60 locations have signed up to light up for World Bronchiectasis Day!!  It would be wonderful for members to “ light 💡 up” their homes, if possible to assist increasing public increasing public awareness on Bronchiectasis. The greater the awareness, the more likely that greater research will follow. We have come along way over the past five years. 😍

Why Do So Many Men Put Off Going to the Doctor?

Many men delay or avoid healthcare visits, often waiting until symptoms become serious. While it may seem harmless to "wait it out," postponing care can lead to missed early detection, worsening chronic conditions, higher treatment costs, and a reduced quality of life.

Common reasons men delay healthcare include:

🔹 Cultural and Social Pressures – Seeking medical help is sometimes viewed as a sign of weakness, causing men to ignore symptoms or push through pain.

🔹 Stigma Around Vulnerability – Discussing personal or sensitive health concerns can feel uncomfortable, leading some men to avoid appointments altogether.

🔹 Perceived Lack of Urgency – Many believe health concerns can be addressed "later," even when early intervention could make a significant difference.

🔹 Time and Access Barriers – Busy work schedules, family responsibilities, insurance challenges, and difficulty navigating the healthcare system can make routine care feel overwhelming.

🔹 Discomfort with Healthcare Settings – Doctor visits, paperwork, waiting rooms, and discussing personal issues can feel intimidating, especially without an established primary care provider.

🔹 Financial Concerns – Costs such as co-pays, deductibles, or lack of insurance may discourage men from seeking care.

🔹 Underestimating Health Risks – Many chronic conditions develop gradually with few noticeable symptoms, making regular checkups essential for early detection.

The good news? Small steps can make a big difference. Regular checkups, preventive screenings, and open conversations about health can help men stay healthier and catch problems before they become serious. Your health is worth the time. Don't wait for symptoms to become a crisis.

How are you going to encourage a family member or a friend to seek healthcare? Sharing your suggestions may help another member of this community. 💙

An initial hearing test should be done before starting Azithromycin.  If any issues arise, such as tinnitus or a change in hearing, you are advised to discontinue the medication and notify your healthcare professional. After finishing azithromycin, a follow-up hearing exam is recommended at 3 and 12 months. 

Patricia,

This is another great question. I took azithromycin for two years in the past. I am sure that this drug will be discussed during the presentation this afternoon. This drug is one of the most important drugs in the NTM toolbox; it is an antibiotic that has anti inflammatory properties. 

Patricia,

Great questions. I sent this forward to be added to the questions in the queue. You can also raise your hand to ask the question after the presentation.

My doctor recommended this and wondering if anyone has taken and can share their experience? thank you

Hello! I am so looking forward to this session! I have Bronchiectasis & Myco Bacterium Abcessus. The Infectious Disease doctor suggested this treatment: Amikacin 25 mg/Kg ( 1290 mg IV ) 3 times weekly for 4 - 6 weeks with weekly amikacin troughs plus PO azithromycin 500 mg daily and doxycycline 100 mg BID and after 4-6 weeks will continue azithromycin and doxycycline for atleast 1 year. I am considered about the side effects and effectiveness. Can the doctor speak to what other patients experience with these medications? Likelyhood of improvement? Any statistics or where I can find statistics on taking these medications? Thank you again!

Welcome! We hope you will join us for the Coffee Break tomorrow. 

Welcome to the family!

I’m the Assistant Director of Education and Community. If you have any questions or need resources, please reach out. A few key places to start on the site:

1. Podcast series- provider interviews with clinical updates and practical tips
2. Education downloads- patient and provider resources including action plans for exacerbations, airway clearance videos/webinars, the All About Bronchiectasis booklet, and more

Happy to help you find anything specific!

Das23,

I am so glad that you continue to practice good self care, preventative measures !!! Thank you for all  that you do to contribute to this community. Have a superb day! :) 

I'll do what I always  try do----Exercise-Eat Right------Do my Airway Clearance!!!!!.....Take care men....and ladies😀👍

💙 Men’s Health Week 2026 – Building Empathy into Action 💙 This week, we’re shining a light on the importance of men’s health — not just physical, but mental and emotional too. Support each other — because strong communities build stronger men. Let’s break the stigma, encourage regular check-ups, and remind the men in our lives that caring for themselves is a sign of strength.

This week is about encouraging people to prioritize self-care, build healthy habits, and support physical and emotional well-being. Let us reframe self-care as a lifestyle practice rather than a novelty. It is about committing to small, sustainable changes that improve overall health over time.

Chronic stress is linked to complex health issues. Small, consistent changes in our lives—moving daily, adequate hydration, and good sleep hygiene are important. Stress management and emotional self-care can be done by practicing mindfulness through meditation or deep breathing exercises to improve our mental wellness. Work on talking openly about how you’re feeling. All of these practices can have measurable long-term benefits

Throughout the week and onward, we are reminding all men in our lives that their lung health matters. 💙 Bronchiectasis is often underdiagnosed, especially in men. Men may delay seeking care until symptoms like a chronic cough appear. Major delays to diagnosis continue to exist for men with NTM disease. Educate other men to know the signs of bronchiectasis/ NTM and encourage them to speak with their doctor.

What actions are you going to take during Men’s Health Week?

Welcome LucyMoe,

We are glad you found us. Please let us know if you have any specific questions. 

Welcome Lucymoe......

Welcome to 360social!

Joining us this month is Dr. Ahmed Hamdi, MD, AAHIVS, Assistant Professor of Medicine at the Baylor College of Medicine (BCM) to present medications for BNTM patients.

Dr. Hamdi is the Co-Director of the BCM Non-tuberculous Mycobacterial Diseases Program. 

The meeting registration link is here:

https://us06web.zoom.us/meeting/register/tZclcuusrDMpG9PrF3BDUA2nw2csTkQsg7EG#/registration 

Kelly, 

Hello! I am sorry that you are dealing with such challenges. The uncertainty of treatment side effects can be overwhelming, to say the least. 

I have 3 strains of M. abcessuss (however it’s spelled) and MAC. Started in 2022, it took this long 2 find someone 2 actually want to treat it now. I have it in both lungs. I am 57, no energy & treatment includes Biaxin, Neuzyra and I.V. of Amikcin. I’m scared to put my body thru more upset & knowing I can lose hearing which is the only thing I have left. Of course the dr isn’t gonna tell or predict what’s gonna happen  I wanted to know the side effects of these meds and if possible any outcomes with anyone with same affliction

https://m.youtube.com/watch?v=bnqR86VQtis&ra=m

https://m.youtube.com/watch?v=6srDnbL_Txw&ra=m

another video from Michelle MacDonald on nutrition for individuals with BNTM 

Janh,

Thank you insurance does notoer

Janh,

Hello! I walk as much as I can in good days. Lifting light weights and doing light yoga or chair yoga is beneficial for respiratory health. Below is a link to information on exercise for BNTM patients: https://www.bronchandntm.org/For-Patients/Learn-More/Managing-Symptoms-and-Daily-Living/Exercise

Janh,

Hello! I am sorry about your weight loss. Can you check to see if your insurance covers a registered dietitian/health coach?  Below is some information on nutrition for BNTM patients: https://www.bronchandntm.org/For-Patients/Learn-More/Managing-Symptoms-and-Daily-Living/Nutrition

Tim, 

Thank you for sharing. :) 

Tim,

Hello! I am sorry to read your update. I would suggest to reach out to your Pulmonologist to update her on your coughing, by phone or the patient portal instead of waiting until your appointment in July. 

My wife says I seem to be coughing more vs. less since taking Brensupri.  I'll discuss with my pulmonologist when I see her in July.

Google "Varon" and you will see a large selection of choices at much better prices on units with good customer reviews than many of the other high priced brands.

I am struggling with weight loss. Was at pulmonologist and says I need to gain weight. Any ideas would be appreciated

I would like to know what exercises everyone does and especially to increase lung volume

RSG2,

Hello! Welcome to the BNTM community.  Please browse the site to review educational information.  Please let us know if you have any specific questions. We are here to support you on your journey. 

I am also looking forward to this coffee break with Dr. Hamdi.  Understanding the purpose of each medicine you take, how and when to take it, and the potential side effects is of utmost importance. I hope that you will be able to join us on Wednesday at 230pm, EST. 

I’m looking forward to Dr. Hamdi joining us and presenting on the Coffee Break next week!

Welcome to 360social!

Same with my husband. But he still takes it -hopefully it will show some results!

More information on inhalers: https://www.bronchandntm.org/For-Patients/Learn-More/Medications-and-Therapies/Medicines

Ronbo,

Hello! Has your Pulmonologist discussed the use of an inhaler drug as needed? There are many different types of inhalers; hopefully your doctor can prescribe one that will assist you. 

5644,

Hello!

I am sorry that you are not experiencing good results with Brinsupri. Please keep us updated after you discuss your plans with your Pulmonologist on whether or not to continue the drug.

My experience about the same as you.