Be Clear-A Self-Care Method to Living with Bronchiectasis

03/24/2026

Research Opportunity - Mab Biobank for Phage Therapy Development

Tolka AI Therapeutics is building a biobank specifically for Mycobacterium abscessus to advance personalized bacteriophage therapy research. This IRB-approved study (BRANY #25-08-468-1945) aims to collect Mab isolates that could lead to personalized treatment options.

What We’re Doing: We’re collecting sputum samples from Mab patients to isolate bacteria for phage discovery. If we find active phages against your specific Mab strain, you could potentially access personalized phage therapy through future clinical trials or expanded access programs.

Participation Details:
● Two sputum samples collected at home
● All materials and shipping provided (no cost)
● Brief medical history questionnaire
● Optional monthly QOL-B surveys

You’re Eligible If:
● 18+ years old
● Live in the US
● Have Mab documented from respiratory specimens
● Can safely produce sputum

This is a unique opportunity to contribute to research that could directly benefit you and the broader M abscessus community.

Sign up or learn more: tolka.ai/biobank

Questions: questions@tolka.ai

03/23/2026

Getting into my zone on a Monday morning.

Taking over my living room today instead of my usual bedroom setup and planning to film three videos, each about five minutes.

🌟One on how I got rid of my MAC infection without antibiotics.

🌟One on how severe your bronchiectasis really is.

🌟And one on airway clearance hacks.

Wish me luck.

I’ve made every mistake in the book, including forgetting to turn on my microphone. And honestly, I don’t do much editing. I usually just trim the beginning and end when I’m turning the phone on and off.

Because when you’re living with bronchiectasis, sometimes it’s not about perfection. It’s about showing up and fitting it into your day.

Done is better than perfect.

🎥 Follow along on my YouTube channel for these videos and more: BE CLEAR with Bronchiectasis
https://youtube.com/

If you have a few extra minutes today, I would appreciate your support.

Please consider playing one of my YouTube playlists, even in the background. Every minute watched helps me get closer to 4,000 viewing hours.

Right now, I pay out of pocket to create and share these videos. Once I reach that milestone, YouTube will begin to offset those costs.

Thank you for being part of this community and for helping me continue this work. It means more than you know.

Please subscribe, please like my videos, hit the bell so you get my “BE CLEAR in a Minute” mini-videos, and by all means comment.

Let’s have a conversation! 🥰

03/22/2026

Hi everyone,

Thank you for our discussion yesterday about being honest and assertive at our doctor appointments. I know I learned a lot, and I’m looking forward to continuing this important conversation.

As it turns out, the Sunday 9 am YouTube video I scheduled for this morning is an “oldie but goodie”:
How to Build Confidence Living with Bronchiectasis.

It pairs nicely with what we talked about yesterday by reinforcing the importance of speaking up and advocating for ourselves.

Watch video:

https://youtu.be/jHn0BY-hHhQ

And since we’re talking about being assertive, I’m going to practice what we discussed by 🌻asking you🌻 to take a moment to subscribe to my YouTube channel, like my videos, and hit the bell so you’re notified not only about my Sunday 9 AM videos, but also my midweek mini-videos—“BE CLEAR in a Minute”.

And again, thank you for opening up and being willing to share. It helps all of us become stronger advocates for our care.

With much appreciation and love,

Linda

03/21/2026

I’ve already posted a couple of times today and I’m literally rushing out the door to catch a train from Grand Central for a family dinner but I had to say this.

One of the most important takeaways from the European bronchiectasis patient conference was:

For many people feeling poorly becomes THEIR NORMAL.

• Short of breath
• Exhausted
• Coughing all day
• Producing mucus constantly

And when your doctor asks how you are doing you say

“I’m OK”.

And that one sentence can change everything.

Because if your doctor thinks you are doing OK they may not focus on your CT scan, your PFT‘s or your exacerbations and may not suggest treatment.

They may not follow guideline based care like prescribing a macrolide such as azithromycin three times a week or considering newer therapies.

I see this all the time with my clients.

They wait months to see a top specialist and then they are told to just continue airway clearance.

And when I ask what they told the doctor they say, I said I was OK.

Here is the reality:

Specialists are now emphasizing treating earlier not later

• The more exacerbations you have the more you will have
• The more exacerbations the higher the risk of hospitalization
• And yes ultimately a poorer prognosis

I also understand that some in our community are hesitant about antibiotics and that is real and valid.

But avoiding the conversation by saying I am OK does not protect you.

It prevents you from getting the full picture and the full range of options.

• Be honest about your symptoms
• Be specific
• Advocate for yourself

Because OK is not the same as feeling your best. And that’s what I want for myself and everyone.

I’m sure that that’s what you want too. ❤️❤️

03/21/2026

Well… Not your typical Saturday morning‼️‼️‼️

Usually I’m at the dining room table doing the crossword puzzle before heading to the gym.

This morning I got up nice and early, had my coffee and then tuned into the European Bronchiectasis Patient Conference.

I thought I’d get on my exercise bike and listen while spinning, but that hasn’t been the case. I’ve had to keep stopping to take photos of the slides and make notes.

Because it’s so full of great information and the visuals are just out of this world‼️🌎

They’re having lunch now so I can get my airway clearance done. And as you can see, Bika is on my computer to nudge me to get going. And I will.

But, first I had to share what a fabulous learning opportunity this has been with so many great analogies.

And yes, it’s being recorded so we’ll all have a chance to look at it again. And again. And again.

03/21/2026

Watching the fabulous European bronchiectasis patient conference before airway clearance. Family get-together today so lots going on, but first learning and clearing my lungs! Do you find time management to be a major issue in your life? Trying to fit it all in?

03/20/2026

Tomorrow, March 21st, at 5 AM New York City, 10 am CET, the European Bronchiectasis Patient Conference will be getting started. But you don’t need to tune in then if you’re still in dream mode.

Just take a look at the agenda and hop on after you’ve had your morning cup of coffee. And if you sign up, they will send you a link to the recording when it’s available.

https://www.letsbecleartoday.com/be-clear-blog/bronchiectasis-patient-conference-2026-international-event-with-translation

03/20/2026

For those of us who believe food is medicine, every meal doesn’t need to be a Michelin-star production.

Today’s lunch is simple and nourishing:
Red lentils and cottage cheese for protein, paired with my “eat the rainbow” veggies.

And yes… a cookie for dessert 🍪
Because I’m not into deprivation. I’m into healthy eating with room for treats.

Simple meals like this fuel my body for airway clearance, movement, and everything else the day brings.

Sustainable. Balanced. Real life.

03/19/2026

Did you catch Noah’s discussion on the Pores of Kohn? It’s such an interesting and often overlooked physiological process in the lungs. Bradley from the Mayo Clinic talked about this in a webinar years ago, and I wrote a post about it back then. Sharing it again here—enjoy!

Pores of Kohn have nothing to do with how often we need to exfoliate and Channels of Lambert aren’t the latest streaming service!

Instead, they help explain why holding our breath during airway clearance can make a real difference.

During a COPD Foundation webinar on bronchiectasis, Bradley Boynton, an experienced respiratory therapist at the Mayo Clinic in Rochester, Minnesota, shared the physiological reasons for why a breath hold can help unstick mucus.

Like many in our bronchi-family, I’ve tuned in to dozens of webinars over the years—perhaps the silver lining of the pandemic.

With all these learning opportunities, I’ve definitely got the basics down. And then some! So, when a respiratory therapist takes extra time and believes in us enough to explain the “why” and not just the “should,” I welcome it.

From my conversation with Brad, I know education is really important to him. As he said, it’s hard to get someone to commit to airway clearance twice a day unless they understand the why. Especially local Minnesota farmers, who certainly already have plenty to do each day!

That’s why, in addition to education, he believes airway clearance isn’t one-size-fits-all. Brad takes the time to get to know his patients and figure out what will work for them and he carefully tailors the approach for each person.

Alongside his work with adult bronchiectasis patients, Brad also works with pediatrics and individuals with ALS. He’s been practicing for nearly 30 years, and there doesn’t seem to be a challenge outside his reach.

He balances work time with his athletic family. With teenage kids, there’s always a sports event to attend and when he has a little free time, he enjoys spending time outdoors.

Thank you, Brad, for your excellent presentation! I look forward to sharing it with everyone tomorrow. With a lifelong disease like BE, the more we know, the better we can take care of ourselves and help others.

Always consult your physician before changing your current medical practices.

WorldneedsmoreRTs

03/19/2026

As more and more of us begin receiving care through Bronchiectasis Care Networks, there will be increasing opportunities to participate in research.

This might include clinical trials where you take a medication or a placebo to help determine whether a treatment is effective. But there are also many ways to contribute that require less time and commitment.

For example, I participate in the NYU Langone biobank as well as the Bronchiectasis Registry have given them permission to use all of my bodily fluids.

At NYU, they check in regularly to update information about how I’m doing both physically and emotionally. I cannot tell you how meaningful that is to me, to know that I am contributing to science.

Many people, like me, are also donating specimens for research. Next week, I will be sharing an opportunity for individuals with a particularly difficult NTM infection to provide samples to a company conducting research.

I will need to use very specific language approved by their Institutional Review Board, so I will not be able to answer questions. However, I will provide contact information for those who are interested.

That is how research works. It is essential that potential participants fully understand what is involved so they can make well-informed decisions.

Are you interested? Stay tuned.🌟🌟🌟

And thank you again to everyone who completed my survey. Findings will be shared in the coming months.

And to those who are donating specimens to industry and medical institutions, thank you.💙🩵

We, as people living with bronchiectasis, are doing impressive things to push the field forward. These are exciting times.✨💫💫

03/18/2026

Colorful Noah, colorful frittata, dependable Aeroeclipse XL nebulizing cup💚💜🩵💙🩷

03/18/2026

Want to get notified when quick videos like this are posted on my YouTube channel??

Just hop over to YouTube, find my channel BE CLEAR with Bronchiectasis, subscribe, and hit the bell so you’re notified whenever a new video drops.

A couple of times each week I share short videos under one minute with quick tips and guidance.

And every Sunday, at 9 am ET, I post a slightly longer video—usually 5 to 10 minutes max—because I know you’re busy and just want helpful information you can use right away.

One quick note: you’ll need a Gmail account to subscribe on YouTube.

https://youtube.com/