Discussions

June is National Safety Month! One important way you can stay safe is by making sure you're prepared for an emergency. Disaster preparedness is extra important when you have a chronic lung condition. You may have to consider access to medications and other medical needs, as well as essentials such as food and water. Do you have a plan in place to stay safe and look after your lung health during a disaster?

Check out the Disaster Preparedness Plan booklet, which walks you through the process of planning for a natural disaster. It also includes handy resources including a page to organize emergency contact information, a list of questions to ask your doctor, and checklists for packing "go" and "stay" kits with everything you'll need in case of an emergency.

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!

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?

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. 💙

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. 😍

Do you feel misunderstood by friends and family since you look good?  The blog article below, Facing The Challenges of NTM Lung Disease , may give your friends and family better insight into what you are dealing with. The blog article contains information about the diagnosis, treatment options, and preventive strategies. Please let us know if you have any questions.

You are invited to take part in a short survey to help us better understand how people with chronic lung conditions navigate Medicare and access treatments.

Your insights will help us:

• Identify what’s working well
• Better understand common challenges
• Create tools and resources that truly support your needs

Whether you feel confident navigating Medicare or still have questions, your perspective matters.

Together, we can build solutions that make accessing care simpler and more supportive.

If you are 18+ and diagnosed with COPD, bronchiectasis, and/or NTM lung disease, take the survey now.

Hi everyone - just joined.  I have had Bronchiectasis for almost 10 years.  Over the past 3, I've been medicated 4 times for flares which resulted in recurrent C Diff.  After a year of daily Vancomycin my ID doc decided to stop.  Since stopping I've had a lot of gut issues - bloating, loss stools, gas and a lot of discomfort.  Wondering if anyone shares this experience and if so, has anything helped?  Thank you so much.  Also working with a Gastro on SIBO testing and will know those results soon.

Has anyone purchased an under mattress wedge to help with nighttime acid reflux? It seems it might work better than a wedge pillow.

Sleep is essential for healing and for functioning on a daily basis. Simple daily tasks, such as meal preparation, bathing and other activiites of daily living require menatl and physical energy. We do not have the energy if we are sleep deprived.The article below reviews specialists who assist individuals with sleep disorders You've Done Everything Right. So Why Are You Still Not Sleeping? - National Sleep Foundation

Multiple CTs have shown possible NTM MAI but every bronchoscopy and sputum labs have been negative. I have had the fundiplication Ctiff surgery, 4 sinus procedurbues and continue to have heavy thick sputum daily with non-stop coughing. I use 7% sodium to nebulize and when necessary Acetylcysteine with Albuterol. I also take Brinsupri (just started a few weeks ago). I was diagnosed with with Bronchiectasis in 2016 and have struggled for years. Any suggestions/ideas what/where I can find help/answers.

Sleep is an essential part of the healing process. Sleep provides restoration within our bodies. It impacts our ability to perform our daily tasks such as airway clearance, treatments, preparation of highly dense nutritious foods , energy to exercise and so much more. The blog article below reviews the basics of sleep, including the different phases of the sleep cycle. Please share your experiences and tips for a better night’s sleep with the community. https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/150/Sleep-and-Healing-for-NTMBronchiectasis-Patients

Apparently Toyota (in Europe) includes a Panasonic technology in the air conditioning system in some of its cars. Nanoe-X technology feeds trillions of nano-sized, atomized water particles into the ventilation airflow. These hydroxyl radicals have been proven in independent laboratory testing to have wide-ranging beneficial effects when used in enclosed spaces. Inside vehicles such as the Corolla (in Europe), these can include: -

• Inhibiting the activity of airborne bacteria and viruses
• Helping prevent the spread of mould
• Inhibiting pollen and other allergens, such as those linked to pets
• Breaking down hazardous substances found in particulates (PM2.5)
• Eliminating common, unpleasant odours

Since this puts water into the air, I wonder whether this type of technology is safe if you have NTM? I don't know if any cars in the US have this technology.

https://newsroom.toyota.eu/toyota-focuses-on-new-technologies-for-the-2024-corolla-range/

With BE is it safe to inhale doterra essential oil breathe in a cup of boiled water?

I'm sure I heard on a webinar something about HRT and NTM/BE. Does anyone know of any studies into the effect of HRT on post menopausal women who get NTM? I'm wondering if it might help prevent NTM in the first place, but then once you've got it, or had it, I'm then wondering if the HRT has a positive or negative effect on stable conditions or any medications when not stable.

Have looked through the questions/answers on NAC. Saw this about 3 months ago. https://pmc.ncbi.nlm.nih.gov/articles/PMC12603500/

I have asthma/Bronchiectasis. People taking this were in threads a while ago. I don't want to take more supplements than I have to, and get sick with colds/exacerbations from Oct. -March, but healthy April-Oct. Do those of you who take 1200 of NAC daily, a) still do that and b) any recommendations on just taking it for me between Oct-March?

The Key Difference between the two:

Together, they give a complete picture of function and acid exposure, which is especially important when managing conditions such as BNTM.

If symptoms aren’t improving with standard reflux treatment, pH testing can provide the clarity needed to adjust the plan confidently.

Nasal washes are solutions used to rinse out your nasal passages and sinuses using a saline(saltwater) mix. I find using these washes beneficial, especially throughout the winter months when we are dealing with dry heat in our homes. These washes moisturize our nasal passages, improving sinus and breathing comfort.

Always use safe water, such as boiled water for 10 minutes, and then cool the water before using.

There are many different brands, with Neil Med being the most advertised brand. Navage Saline Irrigation Starter Kit, Equate Comfort Flow Bottle Nasal Wash System, and Nasalfresh MD Dual Powered Nasal Irrigation System are a few other brands. You can order these on Amazon or purchase them at a local pharmacy.

Do you have any suggestions on nasal washes for our community?

Cooler weather is around the corner. Tis the season for annual vaccinations and to closely follow your Bronchiectasis action plan. The plan is in the link below:,https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/ActionPlanEnglish.pdf

I would suggest that you print it , so you can review it on a regular basis.

Let us know if you have any specific questions.

It is important to understand the basics of drug formularies, offered by different insurance companies. The formulary lists the drugs by tiers or levels, with tier 1 being the least expensive and the higher tiers being more expensive. Often, your health care provider will start at level 1. Your health care provider will have to have a reason to get a specific drug at an higher tier authorized.it is wise to have an approximate annamount that you will be paying for drugs if you take many drugs. Medicare has a cap of $2000 this year,$2100 for next year. The link below reviews the basics : https://www.goodrx.com/insurance/health-insurance/medication-formulary

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.

Interested in hearing the experience of others with sleep apnea and their treatment for it

The you tube video below , featuring Jonnie Korinko, COPD Foundation and Emily Whicheloe, Director of Education, Medicare Rights Center presents a comprehensive overview of enrollment in a Medicare plan.

https://m.youtube.com/watch?v=1zBMrG5ieoE

This video was filmed last year but the basic content remains the same. Please lus know if you have any specific questions.