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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. 

I have been on it since  it first came out. Truthfully I haven’t noticed much of a change. Still have flareups and just got over pneumonia. (One of the side effects is respiratory  infection). Thinking of going off. 

I wondered if anyone is using Brinsupri?  And if they feel that it helps with the flareups. I have not felt much of a difference!  

Hi Ronbo!

Thank you for reaching out with your question.

One thing that may be helpful is learning a few breathing techniques that can help bring your oxygen levels back up and help you feel more in control when you're struggling to catch your breath. These techniques can help you slow down, feel more centered, and work through some of the anxiety or fear that can come with those difficult moments.

I've included a link below that I hope will be a helpful resource for you.

Please keep asking questions if there's anything else we can help with. We're glad you're here, and we're happy to support you however we can.

https://www.bronchandntm.org/For-Patients/Learn-More/Managing-Symptoms-and-Daily-Living/Breathing-Techniques

As Brandon said in the above post- we are truly here to support you on your journey. 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 on any specific questions you may have. Our Ambassadors can’t provide medical advice but may be able to assist you with additional resources. Please do reach out as needed. 

Hi, the only medication I take is NAC Tablet, best wishes Eileen.

A lot may have changed since I left pulmonary rehab 6 years ago, but a ton of my patients used the Inogen. Many of them liked the idea of the “double battery” they offered. I’d check them out for options. 

Below are the top 5 portable oxygen concentrators, rated by consumer voice: https://www.consumervoice.org/top-portable-oxygen-concentrators?gclid=&kw=compare+caire+portable+oxygen&cpn=603077732&adgroup=1345804602025262&loc_physical=163234&loc_interest=&matchtype=p&network=o&device=m&creative=&placement=&target=&adpos=&utm_source=bing&b_ref=eee6341df15a145372b15e3d3841e867&msclkid=eee6341df15a145372b15e3d3841e867&anura=0

Hello! Have you checked out the Inogen Brand to see if this brand is covered? A friend uses the Inogen, which is lightweight.

Has anyone had to use oxygen?  Looking for a small light weight unit. Medicare provided one but very heavy to carry 

Alyssa,

Being " present" is a gift in itself.  Too often, we are thinking about the next task or event rather than being in the moment.  Not being present adds stress to our lives, and our bodies and minds are interconnected. Greater stress can lead to immune issues. Let's protect ourselves by being more mindful of possible stressors in our lives and develop ways to cope with the stressors. 

Hello! Learning about new medications and potential side effects can be overwhelming.  Do you have any questions about any of the medications that you are currently taking?  Below is a link to the basics of inhalers and nebulized medications: Medicines | Bronchiectasis and NTM Association

We are so excited for this webinar. Michelle will walk you through how to build a plate that is customized to meet your specific goals by showing simple swaps and practical examples. Her goal is to break things down and make nutrition feel clear, realistic, and actionable for you.

Looking forward to this event! Nutrition seems to be a hot topic! 😊

Thank you, Alyssa! 💙 I had meant to add something similar to the post this morning. It's truly impactful when patients and caregivers share their stories and experiences. Every voice matters, and you never know when your story might be exactly what someone else needs to hear.

One of the things I love most about our community is how often it feels like family. We learn from one another, support one another, and remind each other that we're not alone on this journey. Thank you for encouraging others to share their voices and be part of something so meaningful.

Hello everyone!  

Our next BronchandNTM360social Coffee Break is Wednesday, June 10, 2026 @ 2:30pm EST. 

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.  Ahmed Mufeed Hamdi | BCM 

Resources: 

Medicines | Bronchiectasis and NTM Association 

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: BronchandNTM360social Coffee Break Registration

Looking forward to seeing you soon! 

Some quick tips that may help with wheezing!

• Keep up with airway clearance: Techniques like huff cough, PEP devices, vest therapy, or breathing exercises help move mucus out of the lungs. Less mucus often means less wheezing.

• Use bronchodilators as prescribed: Medications such as albuterol or levalbuterol, taken by inhaler or nebulizer, can help open narrowed airways and ease wheezing. Always follow your provider’s instructions.

• Avoid inhaled irritants and triggers: It is not just smoke. Strong odors, dust, cold air, harsh cleaning products, and other things that you notice make your breathing worse can all trigger wheezing. Try to limit or avoid these when possible.

• Rest and pace your activities: Overexertion can make wheezing worse. Take breaks, spread tasks out, and allow yourself rest days when needed.

• Please let me know if you need more information!

I am proud of myself for slowing down and enjoying the moments. This is something I struggle with but this month I took time for myself and invested in being present with my family. 

This post is so meaningful, and the timing is perfect with World Bronchiectasis Day coming up on July 1. If you are interested in sharing your story, please email me at alyssa@bronchandNTM.org.

Welcome, June 💛June brings longer days and warmer light — but it also brings us another chance to heal and to hold space for one another. Sometimes it’s in the way we keep showing up, even on the hard days. It’s in the courage to share our stories, knowing someone out there will feel less alone because of it.

A fresh month, a fresh chapter begins. Throughout the month,we will focus on the following topics:

We’re walking into June together — and that makes all the difference. Let’s fill these days with sunshine and moments that make our hearts smile. What’s one hope you’re carrying into this month? Please share it below so we can cheer you on. 😍

Yes, the greater the public awareness, the brighter for our BNTM community. Airway clearance is definitely a worthwhile therapy. 

Thanks for posting this Brandon. 2 years ago I had never heard the term Bronchiectasis--let alone pronounce it or spell it🤣. Then--turns out I have mild Bronchiectasis. Now I can say it--and--spell it😀 We need all the awareness we can get-----Airway Clearance!!!  It works👍

Brandon, 

Thank you for the great post. It took me over a year to get diagnosed, going to many different doctors, having difficulty breathing, losing weight, not knowing what was going on, was very challenging to say the least.  I am so happy that Ty Pennington is assisting the BNTM community to increase awareness.  The greater the public awareness, the shorter the time period to an accurate diagnosis.

I had a young daughter at the time, and I was determined to keep going until I found the right diagnosis and treatments. Please hold onto hope that better days are ahead for BNTM patients.