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I feel quite emotional after listening to Michelle MacDonald. Thank you so much Michelle, and thank you BE & NTM Assoc for facilitating this
Hi Cjack. Dr Sandhaus attended one of the monthly Coffee Breaks and spoke specifically about the overlap of Alpha 1 and bronchiectasis. Check out the recording linked below.
Indywoman,
We are excited to have you here! If you notice that certain months present a higher risk for flare-ups and exacerbations, it’s crucial to collaborate with your healthcare provider to develop an Action Plan. I’ve included a template to assist you in creating a strategy for when you sense an exacerbation approaching. This plan may outline when to increase your airway clearance, start a preventative medication, or when to contact your provider. Another recommendation is having an air filter in your home, using a nebulizer (bronchodilator daily) if prescribed and using an incentive spirometer. Hope that is helpful!
https://www.bronchiectasisandntminitiative.org/Learn-More/Educational-Materials-Resources/Downloads-Library#ActionPlan
The Northern Lights were on display in Virginia last night. Did anyone else catch a glimpse of this beautiful show in the country?
Today is World Pneumonia Day! Please take precautions to lessen the chance of getting pneumonia. The info graphic below offers some great tips: https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/StayingHealthyPneumonia.pdf
Hi Cjack,
I found out 6 years ago in running my 23andMe results through Promethease that I had one copy Alpha-1-antitrypsin (heterozygote) allele which could potentially leave me open to vasculitis, and inflammatory responses.
For the last four years, I have been sick with horrible chest/sinus colds from Oct.-March, last year ending up with pneumonia in the hospital and diagnosed with Bronchiectasis. Trying to learn as much as I can about this condition, and why in my case it seems seasonal as I am fine from March-September, though I still use Albuterol and Symbicort inhalers in that time frame.
As far as I know, augmentation therapy is not recommended for people with one copy of the PI*Z allele.
This is a great site that has really helped me!
allele
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To all who have served our country!
We greatly appreciate all you have done for our country. We hope that you enjoy this special day.
Hello! Will you be able to join us tomorrow for our monthly BNTM coffee break? Below is a video on Probiotics, presented by Michelle MacDonald, who will be presenting at our coffee break. There is mixed information on taking certain probiotics within the medical community.,Watching the video may spark some solid questions for the presenter tomorrow. https://m.youtube.com/watch?v=wFdLASqg8T4
Exciting news! Do you want to see the list of the 25 new centers that have joined our BNTM Care Center Network? We are working on bringing quality BNTM Care closer to your home. https://www.bronchiectasisandntminitiative.org/Press-Releases/Article/208/Twenty-five-centers-join-Bronchiectasis-and-NTM-Care-Center-Network
Pam,
Hello! Below is a medical article on a drug in the pipeline for Pseudomonas: https://medicaldialogues.in/pulmonology/news/colistimethate-sodium-effective-against-bronchiectasis-and-p-aeruginosa-infection-study-143449
I’m wondering if anyone in the group is using the Volara system for airway clearance? I have been using the Philips InCourage vest, which I like very much. But it increases my frequent headaches.
My Bronchiectasis Nurse Practitioner suggested the Volara system. Any thoughts? I am blessed to be in this group.🌻
Barbiecc,
Hello! Welcome to the site. I am glad that you are doing okay now- having 3 vaccines at once was probably too much for your body. We must learn to identify what our bodies can handle and what they cannot handle. I realize that the big pharmacy chains and many health care providers say that it is ok to having several vaccinations at once. However, I know that I my body is hypersensitive and I cannot handle more than one vaccination at a time. I have spaced them out, leaving a week or two in between vaccinations. I hope that you continue to feel better.
Hi. This is my first post. I received the Covid, RSV and Flu vaccines on 10/28/25. The following day my arms were sore and that evening I had a low grade fever. I ended up having a fever & chills on and off for 6 days. I am fine now. The highest my fever went was to 101.5.
Have you received the pneumococcal vaccine? Taking measures such as this vaccination lessen your chances of getting pneumococcal pneumonia. Recently, they have lowered the ages to get this vaccine to 50, it was 65 in the past. Below is information on this important vaccine: https://www.cdc.gov/pneumococcal/vaccines/index.html
Beliw is a 7 page guide on prevention of Pseudomonas in a health care setting: https://isid.org/wp-content/uploads/2019/07/ISID_GUIDE_PSEUDOMONAS_AERUGINOSA.pdf
Below is information on Pseudomonas from the CDC. You will read about the importance of handwashing in health care settings: https://www.cdc.gov/pseudomonas-aeruginosa/about/index.html
Below is information on Pseudomonas with many good references: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Pseudomonas-Aeruginosa-Lung-Infections
Pam,
Pseudomonas is a smart, tricky bug to defeat. You were lucky that your last sputum was negative after a strong dose of Levaquin.
Good infection control precautions, regular airway clearance are ways to lessen the chance of a reoccurrence
I have had colonized Pseudomonas for 2 years. Recently I took a strong dose of Levaquin (after having no antibiotics for the past 2 years) for pneumonia and the last sputum culture indicated no presence of Pseudomonas.
I fear a reoccurrence and am asking others to comment on this smart and persistent bacteria.
Katie, it seems that I am recently cleared, for the time being, of the colonized Pseudomonas that I have had for 2 years. I understand that it is a resistant and reoccurring bacteria.
My questions to you are
1) what was your treatment with tobramycin, was it inhaled and if so for how many days a week and for how many months
2) has your pseudomonas ever returned
Another question concerns this information from NIH:
Impact of high- and low-flow nebulised saline on airway hydration and mucociliary transport for long term use
The findings demonstrate that nebulised isotonic 0.9% saline, like hypertonic 7.0% saline, significantly stimulates basal mucociliary transport, and the use of high-flow delivery had no significantly different hydration effects compared with low-flow delivery. Hypertonic 7.0% saline suppressed ciliary beating, indicating an increase in airway surface liquid osmolarity, which may have negative effects on the airway surface with frequent use.
If you do airway clearance 2x daily, is it better to use 7% nebulized saline one time daily and then 3% saline the second time?
Hello friends. For the past two weeks I have been experiencing all-day breathlessness, at rest and with exertion, a new symptom. Normally I rarely experience SOB at rest, and with exertion it usually clears up a minute or two after the activity ends. To help with breathing I have been doing breath stacking where I take 3 or 4 short inhalations to build one full inhalation, then I breathe out slowly through my mouth. Also, one of my lungs docs prescribed a trial of prednisone to see if it helps, start low and build to a higher dosage if needed. This is within the palliative care realm, where most of the focus is on comfort and symptom relief. Here is some info on breath stacking. Peace and blessings to all.
https://youtu.be/S9thwqIeuv0?si=f7V_sDFDuEop4UeK
Hello everyone!
Our next BronchandNTM360social Coffee Break is Wednesday, November 12, 2025 @ 2:30pm EST.
We will be joined by Michelle MacDonald, MS, RDN, CDCES to discuss nutrition for Bronchiectasis and NTM Patients. Michelle is a registered dietitian nutritionist and certified diabetes care and education specialist who has 15 years of clinical experience as the dedicated dietitian to the infectious disease clinic at National Jewish Health. Currently, she works full-time in private practice, offering both virtual and in-person consultations.
Resources:
Nutrition and NTM with Michelle MacDonald
https://www.youtube.com/watch?v=30L2Ha4W_Nk
Helpful Nutritional Information
https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/48/Helpful-Nutritional-Information-Related-to-NTMBronchiectasis-Patients
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!
Are you getting prepared with your own health care plan for the upcoming winter season? Understanding the risk factors for pneumonia will assist us in taking the appropriate precautions to prevent pneumonia. Below is information on the risk factors from the CDC: https://www.cdc.gov/pneumonia/risk-factors/index.html
Please let us know if you have any questions.
Are you ready to listen to some great YouTube videos this afternoon?
The Lung Health Collaboration is actively recording some outstanding videos on lung health:,https://m.youtube.com/watch?v=MXO8-NAwBN0
Hello everyone! I'm here to provide some insights on the current federal government shutdown.
As you all are likely aware, the United States is currently in its longest-ever government shutdown. The pressure surrounding the shutdown has grown considerably since the beginning of the month, with many government employees missing their first paycheck. It is expected that as tensions continue to rise, a decision will be made about the budget within the next week or so. There are Congressional members on both side of the aisle meeting daily to discuss "off ramps" for this shutdown.
Of course, none of this is guaranteed, and it is important to stay in touch with your healthcare providers and health plans as you navigate treatment decisions during this difficult time. We collectively hope that our leaders will take action soon to end this shutdown.
We will keep our communities informed of any major changes regarding the shutdown. Thank you!
Hello! I hope that you have taken the time to get vaccinated. Taking preventative measures is far better than to deal with an acute illness such as pneumonia. Below is an infographic on Staying Healthy and Avoiding Pneumonia. Please let us know if you have any questions. https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/StayingHealthyPneumonia.pdf
Breaking news! Bronchiectasis made it to Good Morning America! Increasing public awareness is underway! The increase in awareness worldwide will lead to more research and funding for Bronchiectasis. Additionally , increased awareness and education of health care professionals will lead to an earlier diagnosis, the right treatments and better outcomes for patients with Bronchiectasis. https://www.goodmorningamerica.com/video/127169810
Can anyone direct me to advocacy please. As in increasing awareness amongst General Practitioners.
New Podcast Episode! Uncovering the Overlap: COPD, Bronchiectasis, and NTM
Dr. Tim Aksamit, Medical Director of the Bronchiectasis and NTM Association, discusses how many individuals with COPD may also have overlapping conditions such as bronchiectasis and NTM. This episode highlights the challenges of early detection, discusses the prevalence of COPD-bronchiectasis overlap syndrome, and emphasizes the importance of early diagnosis and effective communication with your health care team.
https://www.bronchiectasisandntminitiative.org/Learn-More/Educational-Materials-Resources/Podcasts
🎧Let us know what you would like to learn about for our next episode! Comment some topics below!
New Podcast Episode! Uncovering the Overlap: COPD, Bronchiectasis, and NTM
Dr. Tim Aksamit, Medical Director of the Bronchiectasis and NTM Association, discusses how many individuals with COPD may also have overlapping conditions such as bronchiectasis and NTM. This episode highlights the challenges of early detection, discusses the prevalence of COPD-bronchiectasis overlap syndrome, and emphasizes the importance of early diagnosis and effective communication with your health care team.
🎧Let us know what you would like to learn about for our next episode! Comment some topics below!
I think bronchiectasis overlap happens more often then diagnosed. Any disease that changes the shape of the bronchioles can raise the risk of infections, inflammation, and further damage to the airway walls.
For example, emphysema causes the lungs to lose their normal shape and can also contribute to overlap with bronchiectasis.
Alpha-1-antitrypsin is a protein that protects the lungs from harmful substances in the air like smoke, fumes, dust, and pollution. When there's not enough of this protein, the lungs can become more sensitive, leading to more inflammation, extra mucus, and changes in the structure of the airways often causing emphysema. We’re glad you’re here and asking questions! It’s important to share these thoughts so others know what to look for and realize they are not alone.
Fair. I feel overwhelmed by my prognosis with extensive bronchiectasis, MAC and pseudomonas.
🍂 Welcome to November on BronchandNTM360social! 🍂
As we step into a new month, let’s take a moment to breathe deep, connect, and keep building the strong and caring community that makes this space so special.
Cooler days can bring new energy — a perfect time to reflect, recharge, and check in with one another. Whether you share a little update, a favorite photo, or some encouragement, every post helps remind someone they’re not alone on this journey.
💬 Stop by often, say hello, and let us know how your month is going. Together, we make this community stronger, one conversation at a time. 🌤️
Hello Lucinda,
Thanks for responding as a fellow Alpha. I was curious to know how much overlap there is in the people with bronchiectasis and ntm who visit this site and people with Alpha 1. I5 years ago I was diagnosed with MAC which led to my being tested for Alpha 1. I am a ZZ and have severe bronchiectasis. I think that more often people with Alpha 1 are diagnosed with emphysema. Are you receiving augmentation therapy for your Alpha 1?
Cjack
Many symptoms of respiratory diseases overlap. Medicare data research revealed that nearly half of individuals who have Bronchiectasis also have COPD. The link below reviews this overlap in greater detail. Please let us know if you have any specific questions. https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/COPD-Bronchiectasis-Overlap
Welcome Ronbo......Good job managing your condition. Good luck going forward
The COPDF and the BNTM Association are involved with ongoing research to improve the quality of life for individuals who are living with chronic lung disease.
Throughout the month of November, we will highlight the Awareness on COPD, commonalities , such as the symptoms amongst both communities. National Pneumonia Day is on 11/12/2025- we will address preventative measures to lessen the risk of pneumonia. We will also review the overlap of symptoms and the BNTM overlap. Please let us know if you have any specific questions on these topics.
Hello! As November unfolds with its crisp air, golden leaves. We must remind ourselves of the strength and resilience we have within ourselves. Managing a chronic lung disorder takes courage, consistency, and ongoing care- every step you take towards wellness is something to celebrate.
As we approach the holidays, let us be grateful throughout the month for airway clearance routines, preventative infection control strategies, winter scarves, and the support we render to one another.
Is there a personal or a health goal you would like to achieve before the end of the year?
You are not alone on this journey- our community stands by your side, breathing HOPE and ENCOURAGEMENT every step of the way. Wishing you a month of strength and gratitude.
Ronbo,
Hello! Thank you for sharing your uplifting news. Watchful waiting , not taking multiple antibiotics is a great option for some patients. I am so glad that airway clearance, nebulizing , exercise and oxygen are enabling you to continue to be active, getting out and about a few times a week.
Have a wonderful day! Katie
I am approaching the third year of watchful waiting when I was told I needed to treat the NTM with three antibotics for two years, and, after much research, decided not to do it. I do ACT, nebulizing, and exercise. I am 83 years old and on 24/7 oxygen, but manage to get out and about a few times a week.
Hello! Happy Halloween 🎃 to all members. I hope that you get a lot of treats today and not too many tricks. It is fun to watch little ones dressed up in their costumes.
Do you have any special stories to share with the group on favorite Halloween memories ?
Das,
It is great to read your positive feedback on airway clearance.
Yesterday a visiting nurse from the Cleveland Clinic gave me a guide to chronic lung disease. Some of the information is helpful, but the illustrations are straight out of the 1950s.
As the cold weather begins to roll in, we must face the fact that flu season is around the corner.
Doing airway clearance regularly may assist you in lessening the chances of respiratory infections.
Hopefully, you were able to get the flu shot- whether it is the basic flu shot or the Fluzone
The link below reviews the different devices and medications for airway clearance.
https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Coping-with-Airway-Mucus
Please let us know if you have any questions.
Thanks for sharing Trout and good luck!!!
Trout,
Thank you for sharing your experience with Brinsupri. I have heard that it can take up to 6 weeks or longer to be fully effective.
I am so glad you are feeling better from the Zosyn. I am posting information on this drug for others in the community since it is not a commonly prescribed antibiotic : https://www.drugs.com/zosyn.html
I have read about the potential dental issues and dermatology issues. Hopefully, individuals who experience these issues will seek treatment as soon as possible before these issues get worse. Perhaps, an extra dental visit per year would be helpful. Regular skin assessments and scheduling an appointment with a dermatologist is wise. It can take a few months to get to see specialist in some area. You can always cancel the appointment a few days before if you don’t need it. Preventative measures are easier to take care of than curative measures.
I look forward to hearing your updates as time moves forward.
I started one week ago with this drug, after having finished two weeks of Zosyn. So right now I feel great because of the Zosyn. Time will tell. The drug is HUGELY expensive, but thanks to the Inflation Reduction Act, there is a limit to out of pocket expenses IF you are Medicare Part D. I have the published results of the Phase three trial. Note that when taking the drug, you should have regular dental check ups, and see your dermatologist for hyperkertosis. Good luck all!
November Weather Readiness for Our Bronchiectasis & NTM Community
As we move into November, the weather can change quickly--storms, colder air, and even early snow are showing up in forecasts across the country. For those living with bronchiectasis or NTM, it’s a good reminder to make sure your Disaster Preparedness Plan is up to date.
Sudden weather shifts can affect air quality, humidity, and access to supplies, all of which can impact your breathing and daily routine. Taking a few minutes now to check your medications, airway clearance supplies, and contact lists can make a big difference if severe weather hits.
📝 The COPD Foundation’s Disaster Preparedness Plan can help you get organized and feel confident you’re ready for whatever the weather brings.
👉 https://www.bronchiectasisandntminitiative.org/Learn-More/Educational-Materials-Resources/Downloads-Library#DisasterPrepared
A little preparation now means peace of mind later--so let’s stay ready, stay connected, and look out for one another as we move through this changing season. 💙🌦️
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 COPD, please consult a physician before making changes to your own COPD management plan.
Community posts are monitored by the 360social Community Manager, as well as staff respiratory therapists, educators, and other medical professionals.