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BronchandNTM360social welcomes new member Ryan Macarubbo who
joins 5,372 current members of our community.
We're glad you're here!
Activity Feed
Patricia,
Hello! You are most welcome! Please let us know if you have any specific questions after reviewing the educational materials. We are here to support you on your journey.
Thank you for the information on the webinar recording & other information! I greatly appreciate all the information & your responsiveness!
I am so looking forward to listening to Michelle MacDonald, and learning more creative cooking tips.
There are so many valuable educational materials/ links posted previously by Brandon. I do hope that you will take the time to review the links.
Knowledge is power. Knowledge empowers patients and prepares them for their healthcare provider appointments.
Many events are coming up on July 1st - I hope that you will be able to attend. Please check out the link posted by Alyssa.
If your looking for upcoming webinars visit the Events Calendar Page https://social.bronchandntm.org/events. Lots of amazing events are coming up!
This is so hard, I wish there were more options!
WOW! Thanks for the update. So you went to the skin Dr. to ask questions and they found skin cancer on your nose?
For a full list of WBD event visit the Event calendar Page https://social.bronchandntm.org/events
I am so excited for the upcoming webinar on Nutrition and Bronchiectasis with Michelle MacDonald. I hope everyone here has grabbed their spot.
She will be walking you through how to build meals using real examples that support your goals. With bronchiectasis and NTM, it is especially important to give your body what it needs as it works hard to fight infections and move mucus.
You will not want to miss this session!
Here is a go to recipe I make that uses a rotisserie chicken and high protein yogurt. I always get creative with what I add and prep it for the week.
Health Chicken Salad
- 1 pound cooked chicken, cubed (3 cups)
- 3/4 cup celery stalks, diced (3 large)
- 1/4 cup red onion, finely chopped
- 1/4 cup parsley or dill, finely chopped (optional) I use dill
- 1 cup pecans, almonds or cashews
- 1/2 cup plain yogurt, (Protein yogurt)
- 1/4 cup mayo, I used avocado oil mayo
- 2 teaspoons Dijon mustard
- 1 teaspoon any vinegar, except balsamic
- 1/2 teaspoon salt
- Ground black pepper, to taste
- In a medium bowl, add nuts, chicken, celery, onion, parsley, yogurt, mayo, mustard, vinegar, salt and pepper. Stir gently to mix and adjust salt to taste if necessary.
- Refrigerate for at least 2 hours as salad tastes best cold.
KK,
I am glad you are getting the treatment you need for your skin cancer and your nose is doing great. Most skin cancers are very manageable, must maintain regular follow up visits for body checks. There are risks and benefits with every drug. Pulmonologists need to discuss the risks and benefits with patients who may need drugs such as Brinsupri who have other pre existing conditions. There is no “ one size fits all “ for drugs.
I hope that you get to enjoy your summer. I am sure that your skin doctor advised you of all of the specific summertime precautions while outdoors in the sun, etc.
Thanks for all the replies i never started taking the binsupri not one dr or pharmacy could answer if there may be any interaction with all the minerals and vitamins So i read the side effects and one is skin cancer so i went to skin dr and low and behold i have skin cancer on my nose thank heaven's i never took the binsupri. Nose is doing great 😀
Ryan,
I hope that you will be able to get an OPEP device in the near future. Wishing you the very best.
Ethambutol is an antibiotic used for treating a NTM/ MAC infection. Individuals are advised to take with or without food; do not take with aluminum-containing antacids.
Potential Side Effects
- Rash
- GI upset- do not forget to tell your healthcare provider if you have lost weight over time
- Neuropathy
- Eye problems, such as Optic Neuritis, are seen more in older patients with kidney failure issues. An episode of optic neuritis typically begins with eye pain, especially with eye pain- this appears like a thumbprint or a smudge that blurs the vision. Within a week, this may progress to a darkening of the visual fields. Reading can become difficult. Many patients notice that colors appear less bright in the affected eye. It is important to schedule and maintain appointments with an ophthalmologist experienced in Optic Neuritis. Report any changes in vision to your doctor immediately and stop taking the drug.
I took Ethambutol in the past and maintained regular visits with a neuro-ophthalmologist. I was fortunate to be able to take this drug without any adverse side effects. If you have taken Ethambutol, please share your experience with the community.
http://Brighamandwomens.orgneurology/neuro-opthamology/optic-neuritis
Hello! Taking multiple antibiotics as a BNTM/NTM patient can feel like a full-time job. Between medication schedules, side effects, appointments, labs and everyday life, it’s not easy.
A few things that can help:
✔️ Use a pill organizer or medication tracking app
✔️ Keep a symptom journal to monitor side effects and progress
✔️ Stay in close communication with your healthcare team
✔️ Ask questions when something doesn’t feel right- do not wait until the next healthcare provider appointment
✔️ Celebrate small wins—every dose and every day matters
Treatment can feel like a marathon, not a sprint. Be patient with yourself, lean on your support system, and remember that consistency is an important part of the journey.
What strategies have helped you stay on track while taking multiple antibiotics ?
Okay thanj you for your response
Hi Patricia,
We have a couple of great places where you can watch recordings of previous webinars and educational presentations. Once we have the recording up from our last Coffee Break, we will post in the activity feed, with a link to the recording.
I've included links below to our Resource Library, where you can browse videos and other educational materials, as well as our Bronchiectasis and NTM Association YouTube channel, which has many of our recorded webinars and presentations available to watch at your convenience.
Here is a link to take you to our Resource Library:
https://social.bronchandntm.org/resources?mediaType=3&audience=patients
And here is our YouTube Channel to view additional content:
https://www.youtube.com/@BronchandNTM
Hi Ryan, thank you for reaching out. We did send you an email, but I also wanted to respond here in case it helps others. Unfortunately, the Bronchiectasis and NTM Association are not aware of a program that provides donated OPEP devices, and we're sorry we can't be of more help directly. You may want to check with your pulmonologist, local hospitals, respiratory clinics, or the Lung Center of the Philippines (https://lcp.gov.ph/ ), as they may know of local assistance programs, patient support organizations, or equipment donation opportunities. Sometimes healthcare providers are aware of resources that aren't widely advertised. Wishing you all the best, and please keep us posted.
Hello, Can you share where we can find the webinar recordings? I'm interested in listening to the topic on medications again. Thank you very much!
thank you!
Brandon,
Happy Monday back to you and the community! It is a beautiful day in my area-70s with low humidity are the perfect temperature for me. Listening to our bodies, not denying our symptoms is of utmost importance. I used to push myself too much throughout the summer months , I pay more attention to my body now and rest as needed. High heat, high humidity, high dew points are not good for me. I hope that you enjoy beautiful summer days throughout the remainder of the month. If you are not feeling well, we are always here to support you on this site, via an email or a phone call.
🌤️ Happy Monday, BronchandNTM360social!
We're already halfway through June, and summer is starting to make itself known in many parts of the country.
With warmer temperatures, higher humidity, afternoon storms, and changing air quality, this time of year can bring some unique challenges for those of us living with bronchiectasis or NTM lung disease.
☀️ Heat can leave us feeling fatigued.
🌧️ Humidity can sometimes make breathing feel more difficult.
🌬️ Wind can stir up pollen, dust, and other irritants.
⛈️ Storms and weather changes can affect how we feel from one day to the next.
It's also a good reminder to stay on top of the routines that help keep us feeling our best:
💙 Staying hydrated
💙 Keeping up with airway clearance
💙 Taking medications as prescribed
💙 Planning outdoor activities during cooler parts of the day
💙 Listening to our bodies and resting when needed
As we begin a new week, we'd love to hear from you:
📍 Where are you checking in from?
🌤️ What's the weather like in your area?
🫁 Do heat, humidity, storms, or seasonal changes affect your symptoms?
💡 What tips have helped you manage bronchiectasis or NTM during the summer months?
Let's learn from one another and help make the second half of June a little easier—and a little brighter—for everyone in our community. 💙
Good day I have bronchiectasis and would like to ask if there are any organizations or individulas who donate OPEP devices.Unfortunately i cannot afford to purchase one.Any help would greatly appreciated! Thank you.
Thank you for your warm welcome and reply
Welcome Ryan
Ryan,
Hello! Welcome to the site. I am sorry to read about your recent experience with a collapsed lung; I hope that you are recovering well and starting to feel better. Below is a link for educational materials on Bronchiectasis and more. Please let us know if you have any specific questions. We are here to support you on your journey. https://social.bronchandntm.org/resources
I was diagnos bronchiectasis and right lung collapsed,im from philippines
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:
- Podcast series- provider interviews with clinical updates and practical tips
- 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!
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.