 Two days at the First North American Bronchiectasis and NTM Conference!!
What a whirlwind! Two days filled with networking, smiles and a buzz of cooperation in the air. The biggest takeaway: progress is happening! While there are still no U.S. guidelines for bronchiectasis, we’re hopeful they’ll be released in the first quarter of 2025. Even more exciting, there will be Standards of Care established for the 150 designated care centers across the U.S.. These guidelines will outline best practices, empowering us to advocate for proper care — whether it’s securing necessary nebulizing equipment or appropriate testing for swallowing and reflux. One promising development on the horizon: a potential blood test for NTM in the next few years. This could eliminate the stress of producing sputum samples — a huge relief for many of us! Though Dr. Chalmers (aka Dr. Bronchiectasis❤️) was in high demand, we managed to squeeze in a few moments for some fun social media pics. Helga from NTM Info & Research was also there, warmly welcoming everyone as they explored the booths featuring vest companies, Monaghan Medical, Bronchiectasis & NTM 360, Insmed, Mannkind and other pharmaceutical companies working on treatments for BE and NTM. It was inspiring to see clinicians, industry leaders, pharma companies and people living with bronchiectasis all coming together with a shared purpose. Progress is being made and the future looks brighter! Today I’m focusing on self-care, including my annual physical. Then I’ll be heading to a luncheon sponsored by National Jewish Health. Dr. Chuck Daley (aka Dr. NTM❤️) will be our guest speaker. I’ll be reporting back!!! #Bronchiectasis #NTMawareness #LungHealth #RespiratoryCare #BetterBreathing #LungMatters #ChronicIllnessCommunity #RespiratoryMatters #PulmonaryMatters #MedicalAdvances #PatientAdvocacy
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 I wanted nothing more than to go to Scotland this past July for the World Bronchiectasis Conference. Unfortunately, it conflicted with my family reunion, so I relied on Judy Schloss, the clinical manager at Monaghan Medical, to send me photos. More than anything, I wanted to visit my hero, Dr. James Chalmers’ laboratory. For me, it would’ve been like seeing the Batcave! You might think I’m exaggerating, but Dr. Chalmers (aka Dr. Bronchiectasis) actually led a proof-of-concept trial called BATMAN (Bronchiectasis Alpha-1 Augmentation Trial). Dr. Chalmers has been our advocate from the very beginning. Even when he was told that bronchiectasis research was a dead end, he persisted. In a recent video, he shared this powerful message: “The greatest unmet need for bronchiectasis, from my point of view as a clinician caring for these patients, is to have better, more effective treatments for the disease. Unfortunately, around 50% of patients with bronchiectasis, according to registry data, experience two or more exacerbations per year. The quality of life of our patients and their symptoms, the scores that they get on questionnaires, show that the impairment caused by this disease is as bad or worse than other respiratory conditions like COPD, asthma, or cystic fibrosis. So, patients are really suffering with frequent exacerbations and bad symptoms, but there are not enough effective treatments that patients can use. Most patients are reliant on physiotherapy and antibiotics, which relieve some of the symptoms but don’t modify the course of the disease and don’t prevent these exacerbations or improve these symptoms. So we urgently need better treatments, and that means that we need investment into clinical trials and also into translational science in order to understand the disease better, find better treatment targets, and help us to develop those new therapies.” In the fight against bronchiectasis, Dr. Chalmers reminds us that real superheroes don’t wear capes—they wear lab coats. #Bronchiectasis #NTMLungDisease #BATMAN #COPD #ClinicalTrials #LungHealth #SuperheroesInLabCoats #MedicalResearch #PatientAdvocacy #Inspiration #NeverGiveUp  When you go apple picking, do you reach for the apples on the highest branches or start with the ones closest to you—the low-hanging fruit?
If you’re like me and grab the easy-to-reach apples first, this approach can also work well for managing bronchiectasis. Starting with small, achievable steps can make a big difference in maintaining your health and well-being. Here are a few of my favorite “low-hanging fruit” habits: ✅ Toothbrush hygiene Keeping my toothbrushes clean is one of the simplest ways I focus on infection prevention. I keep a bottle of Dawn dish soap in my bathroom to clean my toothbrushes regularly, rotating through several of them. I also use a small UV sterilizer for travel and a baby bottle steam sterilizer at home once a week. These quick steps give me peace of mind and help me stay on top of this small but important detail. ✅ “Exercise snacking” Instead of committing to long, structured workouts every day, I break exercise into smaller, manageable chunks throughout the day. Ten squats here, a few bicep curls there—by the end of the day, I’ve done a full-body workout without feeling overwhelmed. ✅ Yoga and reflux prevention I’ve recently returned to yoga classes, which I love. Although I don’t usually experience reflux, I take a teaspoon of alginate after breakfast and before class to ensure all the downward dogs don’t cause irritation or aspiration. It’s an easy precaution that helps me feel confident during my practice. ✅ Midday rest Since I’m often up by 4:30 a.m., I start to feel tired by mid-afternoon. Instead of powering through with caffeine, I shut off my devices and take an hour to read or nap. It’s a simple way to recharge and helps me stay productive and refreshed. Everyone has their own version of “low-hanging fruit.” What feels easy for me might be more challenging for you and vice versa. I’d love to hear about the simple habits or routines that make a difference in your health. What are your “easy-to-pick apples”? Share your tips in the comments! #ApplePicking #Bronchiectasis #HealthyHabits #SmallWins #SelfCareTips #WellnessJourney #ChronicIllnessManagement #DailyWellness #MindfulLiving #RestAndRecharge  Thank you to the bronchiectasis community for your incredible support!
Let’s keep sharing guidance on best practices and encouraging those who are newly diagnosed. Together, we can empower each other to live healthier, fuller lives. My hope is that everyone achieves their healthiest self.💥 If you’re looking for a practical resource, The BE CLEAR Method to Living with Bronchiectasis, is a handbook designed to help you manage bronchiectasis and live well. The BE CLEAR book is available on Amazon-⭐️⭐️⭐️⭐️ Again, many thanks and let’s continue to do good work, Linda💙💜 #Bronchiectasis #NTM #NTMlungdisease #ChronicIllness #LungHealth #PulmonaryCare #AirwayClearance #HealthyLiving #SelfCare #BetterBreathing #RespiratoryHealth#BronchiectasisBestPractices #BreatheBetter #BEClearMethod #LindaEsposito  Blocks under the head of my bed aren’t exactly a design statement I’d choose.But their function far outweighs their aesthetics—they help reduce the chance of stomach contents refluxing into my lungs, triggering inflammation and worsening my bronchiectasis.
Seven years ago, I underwent 24-hour impedance monitoring to assess gastric reflux. The results? “Normal” (32 events, but still within normal range‼️). Oddly, I had no reflux while sleeping! I welcomed this as good news back then, but that was a while ago. Now, at 69, my situation may have changed. That’s why I take every precaution. I avoid airway clearance or intense exercise right after meals and stop eating and drinking after dinner. While my husband enjoys a late-night treat—like apple crisp with vanilla ice cream—I stay firm and look the other way. Because when it comes to reducing lung inflammation and healing, I’m determined to do everything within my power. #Bronchiectasis #GERD #GastricReflux #Inflammation #Infection #PulmonaryHealth #LungHealth #Nonighttimeeating #NTMLungdisease #RaisetheHeadoftheBed #Bronchiectasis #GERD #GastricReflux #GERDManagement #RefluxPrevention  People often think that distilled water is sterile. However, according to Dr. Joseph Falkinham, a microbiologist and NTM expert from Virginia Tech, this is not the case because the distillation equipment is not sterile.
Only when it undergoes further sterilization would it be considered sterile. So, if you are using distilled water for nasal washes, to sterilize airway clearance equipment, or to fill up a humidifier, know that distilled water could still have microbes, spores and other pathogens. For a person with healthy lungs, using distilled water versus sterile water probably is not a concern and will not make a difference to their health. But for those of us who have as my UK friends like to call them ”dodgy lungs,” introducing bugs directly into our nose and lungs is not advisable. This comes from someone who spent 3 years fighting a MAC infection and very much wants to stay infection-free!!!😩🫁 #bronchiectasispatientadvocate #distilledwater #sterility #bacteria #viruses #spores #microbe #mythbusting #knowledgeispower#airwayclearance #nebulizers #aerobika #COPD #Bronchiectasis #Asthma #Cysticfibrosis #RRT #RespiratoryTherapy #RespiratoryTherapist  A recent Instagram post by Dr. Inna Husain, highlights three common reasons why people struggle with chronic throat clearing:
⭐️Drying Out Mucus: Overusing antihistamines can dry out the tissue, causing mucus to become thick and sticky, which often leads to persistent throat clearing. ⭐️Reflux: Not all reflux is acidic; some reflux involves just the movement of stomach contents up the esophagus. Even without acid, this movement can cause irritation, so addressing the motion itself is essential. Antacids don’t stop this movement, though they can help with acid-related symptoms. Alginates can be helpful. ⭐️Repetitive Motion of Vocal Cords: Chronic throat clearing involves repeatedly slamming the vocal cords together, leading to muscle memory and a nerve hypersensitivity. This creates a cycle where the throat clearing itself triggers more of the same urge. Breaking this cycle often requires behavioral retraining with the help of a speech-language pathologist. If you are interested in this information, think about following Dr. Husain on Instagram. I’ve already learned so much from her and have enjoyed experimenting with different alginates. What about you? Have you tried an alginate? This information is for educational purposes only. Never change your current care without first discussing it with your physician. #laryngologist #throatclearing #chronicthroatclearing #reflux #mucusproduction #drymucus #vocalhealth #antihistamines #silentreflux #alginates #acidreflux #laryngology #vocalcords #postnasaldrip #respiratoryhealth #speechtherapy #larynxretraining #allergies  When I spot a rat darting across the subway platform, my instinct is to sprint upstairs and flag down a cab. Similarly, during my time living in a house in upstate New York, discovering mouse droppings nestled among my silverware was enough to trigger an all-out cleaning frenzy. So, quite honestly, I have no affection for rodents and no qualms about their role in the testing of new drugs. However, my perspective shifts when it comes to larger animals and scientific experiments. While I understand the necessity of involving larger animals in research, it saddens me. That’s why it’s reassuring to know that researchers like Dr. van Ingen and his team are developing alternatives to using lab animals, such as the hollow fiber model. Traditionally, drug development relies heavily on animal models; however, these models often present limitations, particularly for NTM (non-tuberculous mycobacterial) research. For instance, according to Dr. van Ingen, mice do not naturally develop NTM pulmonary disease, which means researchers must compromise the mice’s immune systems. This artificial manipulation may not accurately predict human responses to treatments. It’s hard to believe, but the hollow fiber model—a mechanism involving tubes, filters, and glass cartridges—can offer a more human-like environment for drug testing. By simulating the conditions found in the lungs, researchers can gain valuable insights into drug efficacy and potential side effects. This innovative approach has the potential to accelerate the development of effective treatments for NTM. According to Dr. van Ingen, antibiotic safety is what matters most to him and his laboratory work focuses on ensuring that only the best antibiotics make it into clinical trials. Click to learn more about Dr. van Ingen’s hollow fiber model, Thank you to NTM IR for sponsoring this talk. It may be one of your nerdiest discussions yet, but you’ve educated us well over the years, and many of us appreciate a deep dive from time to time! #HollowFiberModel #NTMResearch  The sticky, slimy goo, mucus, plays an essential role in fighting off infections, shaping the gut microbiome and more. Mucus might seem like an unappealing part of our bodies, but it's a surprising health hero. Scientists see it as a biological marvel, essential for protecting us from bacteria, pollutants, and viruses. Dr. Katharina Ribbeck, an MIT professor of biological engineering, calls mucus a "masterpiece of biological engineering." It coats all our wet surfaces-eyes, throat, lungs, gut-keeping them hydrated and functioning. Made up of water and mucins, mucus creates a protective gel that keeps our nasal passages, gut and lungs free from harmful intruders. "It's designed to protect you from the outside world," says Dr. Richard Boucher, pulmonologist and director of the Marsico Lung Institute. This viscoelastic substance is thick enough to stay put but flexible enough to be cleared from the airways. Mucus also plays a role in sensory functions, covering our olfactory cells and taste buds so we can smell and taste properly. It shields our stomach lining from acid, helps food move through our intestines, and allows sperm to reach eggs in the cervix. Its mucins, dense proteins with complex sugars, even support our immune response by binding to pathogens and expelling them. Mucus overproduction, though, can lead to health issues, from stuffy noses to chronic conditions like asthma COPD and bronchiectasis. The exciting news is that researchers are now exploring how to harness mucus for health benefits, developing treatments using mucins to target infections without antibiotics. Full article written by Nina Agrawal in The New York Times #mucusoverproduction #bronchiectasis #COPD #asthma #mucins #phlegm #snot #sputum #mucus #phlegm  Thinking about using a vaporizer or humidifier for respiratory comfort? It’s worth reconsidering! While these devices can help with dryness, they might introduce harmful pathogens into your environment. Dr. Joseph Falkinham, a leading microbiologist who studies lung bacteria, says vaporizers and humidifiers can disperse harmful bacteria into our home air, like nontuberculous mycobacteria (NTM) and Pseudomonas—bacteria that form stubborn biofilms in our lungs. This is especially risky for people with conditions like bronchiectasis, with lungs that are more vulnerable to infections. So, what are safer options? You could try using a pot of water on the stove or ceramic containers on radiators to add moisture to the air. Just be sure to use sterile water to minimize risks. Making these small adjustments could help create a safer, healthier environment in your home. I purchased an electric teapot on Amazon and fill it with water from a Lifestraw pitcher. I use it in my bedroom with an open lid. Within eight minutes, all of that moisture is in my bedroom air. It has an automatic shutoff, but I always unplug it after use. For more detail on this discussion, consider joining Bronchiectasis/NTM Info and Research’s online forum. This forum is for patients only and Dr. Falkinham frequently answers questions on environmental precautions. There are threads on this particular subject, including why evaporative vaporizers are better than ultrasonic. https://connect.ntminfo.org/home Is this a concern for you? How are you addressing it? Please comment below 👇 Remember… Never change your current medical practices without first speaking to your physician. #RespiratoryHealth #NTMAwareness #BronchiectasisSupport #LungHealth #AirQuality #HumidifierRisks #vaporizers #Humidifiers |
AuthorLinda Cooper Esposito, MPH is a health educator with bronchiectasis. She developed the BE CLEAR Method to Living with Bronchiectasis and writes with compassion and humor about this chronic lung disease. Archives
December 2024
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