Life can change in an instant. Mine did when a CT scan revealed bronchiectasis and a probable Mycobacterium Avium Complex (MAC) infection, two terms I’d never heard before.
I worked in healthcare, understood medical jargon, but this felt like being broadsided. A bronchoscopy confirmed the MAC diagnosis, but instead of clarity, it brought months of confusion. Was the chronic cough from the bronchiectasis or the MAC? Could I ever be cough-free? How could I prevent worse symptoms like fatigue and night sweats? It was a support group, sponsored by NTM Info & Research, that saved me. Through their discussions, I finally understood: The bronchiectasis was permanent. The MAC infection could possibly be eradicated with antibiotics. I felt hopeful and determined. I could manage the bronchiectasis and fight the MAC! My first step: tackle both without antibiotics. Airway clearance, everyone said, was key. So I dove deep, explored options, and committed to daily routines. But as a health educator and coach, I knew it wasn’t enough. I needed a holistic approach. I revamped my nutrition, added more stress reduction techniques to my meditation practice and upped exercise. Every day. I chronicled my journey, noting what worked and what didn’t. Those notes became “The BE CLEAR Method to Living with Bronchiectasis,” my book to feeling our best with BE. Five years later, I’m still on that path, along with extra precautions to avoid lung-damaging pathogens including pseudomonas and haemophilus.️ With our “dodgy lungs,” we are more susceptible and eliminating exposure is impossible. However, simple steps can significantly reduce our exposure. Tomorrow, we’ll explore those steps. Because even with challenges, living well with bronchiectasis is possible! Stay tuned, and please share your experiences and questions. we are here to learn together and support one another. Book available on Amazon http://tinyurl.com/5a5vx628 Consulting relationship with Monaghan Medical #bronchiectasis #ntm #ntminfection #bronchoscopy #physio #airwayclearance
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The “mucociliary escalator” is a term used to describe a built-in mechanism to keep our airways clean. Just as we might run water on a patio to sweep off leaves and debris, this is what happens automatically in our air passages. This clearing system is complex, but in the simplest terms, it uses mucus to trap dirt, air pollution particles and pathogens. Then cilia, small hairs that undulate in the moving mucus, sweep the unwanted matter towards our throat where it is expectorated or swallowed. This cleansing system is ongoing in healthy lungs as they too produce daily mucus to clear the decks. However, in diseased lungs such as those in bronchiectasis (BE), the ciliated areas are damaged and therefore, we make more mucus to compensate. The body does its best to sweep the airways clean, but often it is a herculean task that cannot be automatically accomplished day after day. For this reason, we need to help out our lungs with daily airway clearance. Airway clearance is a broad term describing the effort to help the mucociliary escalator function more effectively. With BE, there are damaged areas in our lungs with little or no cilia allowing mucus to pool. This mucus needs to be removed, otherwise bacteria, viruses and fungi can feed on it and multiply. Whether we use exercise, breathing and coughing techniques, gravity, or medical devices will depend on availability and preferences. What is important is that we do our best to assist our lungs in clearing airways regardless of how often we cough or how much mucus annoys us throughout the day. Working together with our lungs is essential to maintaining overall health and well being. Consulting relationship with Monaghan Medical #airwayclearance #airwayclearancetherapy #mucus #phelgm #sputum #mucociliary This week we are focusing on the third letter in the BE CLEAR acronym - “C”- for Clearance of Airways.
Dr. Steven Lommatzsch from National Jewish Health says there are three pillars of bronchiectasis: airway clearance, airway clearance, airway clearance. If you are outside the U.S. you might call it physio, but regardless, it’s critical to managing bronchiectasis. I know from personal experience how good I feel when my lungs are clear. I also know how I might get a low-grade fever and feel unwell when I have gone too long without clearing my lung secretions. It’s not just National Jewish Health doctors who promote airway clearance, it’s bronchiectasis specialists all over the world. Most bronchiectasis guidelines recommend airway clearance be taught by a respiratory care professional and be done daily. Is there a lot of research to support this recommendation? No. But Dr. James D. Chalmers from the University of Dundee in Scotland, one of the top BE specialists in the world, said he doesn’t need a randomized control trial to know jumping out of an airplane without a parachute is a bad idea and he does not need randomized controlled trials to tell him that doing physio is a good idea. Do you think you don’t need to clear your airways because you cough up lots of mucus? Or, perhaps you think you do not have mucus and it is a waste of time to do airway clearance. Well, you might want to listen to Dr. Leigh Anne Daniels, a specialist at the University of North Carolina, address those positions. Youtu.be/rYjWNP9xjfU Do you have time to listen to an in-depth discussion on airway clearance? Dr Pamela McShane from the University of Texas at Tyler gave a wonderful talk. Youtu.be/L-EHohMe7II My book, “The BE CLEAR Method to Living with Bronchiectasis”can be purchased on Amazon! https://amzn.to/3yv0VQh #bronchiectasis #ntmpulmonarydisease #maclungdisease #airwayclearance #lindaesposito This week we’re focusing on the first “E” in the BE CLEAR acronym. It stands for Exercise!!
Exercise is good for a multitude of reasons, including acting as a bronchodilator to clear our lungs. In fact, for some people, exercising before airway clearance might mean that they no longer need to use albuterol. This was mentioned at the last bronchiectasis and NTM conference at NYU Langone. So I put together a short YouTube exercise/movement/airway clearance video!! When you go to my YouTube channel look for playlists and click on the one called “Clearance of Airways.” That’s where you will find lots of videos on airway clearance but specifically the one called “Bronchi-lates.” It’s a video where I combine Pilates with airway clearance. https://youtube.com/@BECLEARwithBronchiectasis Already cleared your airways and just want to get a little movement in your daily flow? It’s great for that as well. If you have a serious issue with GERD you might want to avoid this exercise or do it on an empty stomach. Please subscribe to my YouTube channel and like my videos. When we reach 450 subscribers I will release my next one. Thank you everyone for your support!! DISCLAIMER:Remember, there is always risk of injury with any type of movement or exercise. Anything you do that I feature you do at your own risk. Do not change your current practices without first consulting your medical team. BE CLEAR has a consulting relationship with Monaghan Medical #Exercise #Pilates #PilatesLovers #movementmatters #movementheals #Bronchiectasis Roadtripping with Bronchiectasis: My Suite Secrets
On a Texas to New Mexico road trip to visit my grandchildren. Then on to California for two months. Traveling with bronchiectasis takes a lot of planning. Not only airway clearance but also ways to stretch and strengthen in my hotel room. Basically a backup plan when the hotel gym is too crowded. I love this door anchor that you can loop your bands through for a good workout. One trick to traveling is whenever possible, we try to get a suite with a separate bedroom. They are much easier to come by than they used to be and you can even get some mid-price range accommodations that have suites. This way I can do my airway clearance with privacy. And that’s important to me. Also, I can take an afternoon nap without my husband having to tiptoe around the room. This extra space makes a huge difference for us. I don’t think we would be so willing to go on road trips without it. Do you have any traveling tips? Please share! Remember with exercise there is always a risk of injury. This post is for educational purposes and any exercise you do is at your own risk. Consult your medical team before changing your current practices. #Exercise #hotelroomexercise Bronchiectasis #COPD #Asthma #Covid Thrilled to be back with the Northeast Bronchiectasis/NTM Support Group! This time, we tackled my favorite subject as a certified personal trainer: exercise!
If carving out dedicated chunks of time feels like a hurdle, there’s another way. With bronchiectasis, frequent movement throughout the day is key, as experts like Dr. James Chalmers and Dr. Timothy Aksamit agree! Perhaps no need for hour-long sessions, just small “exercise snacks” that many of my clients find more easily achievable. Exercise is the first “E” in the BE CLEAR acronym and my book, “The BE CLEAR Method to Living with Bronchiectasis,” dedicates a chapter to exercise. It features 10 exercises, each of which can can be done in under 5 minutes, even while your coffee brews! Just stay safely away from the hot stove! We’ve got standing exercises for pre-coffee stretching and strengthening, desk-chair options for work breaks, and even tired-day exercises you can do in bed. Check out 5 of them in the “Shorts” playlist on my YouTube channel! Instead of stressing about finding time for morning or evening workouts, think “exercise snacks” and sprinkle movement throughout your day. Huge thanks to Donna and Kristina for the invite! And as always, our deepest appreciation to Bronchiectasis/NTM Info & Research for supporting these invaluable groups. Here’s to a more enjoyable and manageable approach to exercise, boosting energy and feeling better! Important Disclaimer: As with any exercise, injury risk is inherent. Any exercises you do are at your own risk. Before modifying your current care, please discuss it with your medical team. #Exercise #Exercising #PersonalTraining #PersonalTrainer #ExerciseSnacks #BeClearMethod #Bronchiectasis #NTMLung #LindaEsposito The annual Bronchiectasis and NTM conference at NYU Langone is scheduled for April 9, 2024 from 3:30 to 6:30 pm ET. It will be a hybrid event with both in-person and virtual attendance options.
I love meeting people in-person so I hope our local bronchi-family members will think about attending. To sign up, email Marla Hymes at [email protected]. If you would like to listen to previous webinars, go to my website “Resources” page www.letsbecleartoday.com/bronchiectasis-information. #nyulangone #DoreenAddrizzoHarris #AshwinBasavaraj #DavidKamelhar #bronchiectasis #ntmlungdisease #airwayclearance
Brensocatib Insmed has completed the enrollment of over 1700 adult patients in the ASPEN study of brensocatib to treat bronchiectasis. This is the largest bronchiectasis study to date. Patients have been enrolled and randomized to receive brensocatib 10 mg, brensocatib 25 mg, or placebo once daily for 52 weeks, followed by 4 weeks off treatment. The primary endpoint is the rate of pulmonary exacerbations over the 52-week treatment period. Insmed anticipates reporting results from adults in the ASPEN trial in the second quarter of 2024. For more information on the study, go to: https://classic.clinicaltrials.gov/ct2/show/NCT04594369?term=brensocatib&cond=Bronchiectasis&draw=2&rank=1 ARINA-1 The Renovion trial for ARINA-1 in non-cystic fibrosis bronchiectasis (NCFBE) has completed enrollment in December 2023 and will have data available in the first half of 2024. I will provide you with a summary of the results as soon as they are available. Thank you to everyone who participated or expressed an interest in the trial. These trials help us take big steps towards more treatments for everyone! For more information on the study, click this link: https://classic.clinicaltrials.gov/ct2/results?cond=Bronchiectasis&term=ARINA-1&cntry=&state=&city=&dist= MAC 2v3 Are you considering antibiotics for a MAC infection? If so, I want to share with you that for the past 2 years I have been on the patient advisory committee for the MAC2v3 study. The study is designed to test whether only two drugs (azithromycin and ethambutol) can be as effective in treating MAC as the current “big three” (azithromycin, ethambutol, and rifampin) treatment. The trial is for 12 months. To participate, you need to be able to produce a sputum sample. They currently have an amazing network of 30+ physicians (including mine!) at 22 sites from Hawaii to New York to Texas to Toronto. And, great news!!! Patients can stay with their doctor and be referred virtually for this study without the need to travel to test sites. If you would like more information, they have a website mac2v3study.org and I have found them to be excellent to work with. Currently, there are about 400 enrollees and they need another 100 to complete the study. Take a look at their website and email them with your questions. #brensocatib #Insmed #ARINA-1 #Renovion #MAC2v3 #bronchiectasis #ntmlungdisease #MAClungdisease This week, we explored the first letter of the BE CLEAR Method acronym: “B” for breathing. “BE” also serves as a handy shorthand for bronchiectasis, a rather lengthy term that takes a while to master.
Another “B” worth mentioning is brensocatib, an Insmed-developed drug currently undergoing trials for non-cystic fibrosis bronchiectasis (NCFBE) with over 1,700 participants. This marks the largest BE drug trial to date. I’ll share an update on its progress in my upcoming winter newsletter. In the meantime, why not consider ordering Insmed’s FREE book, “SEEN”? Featuring the stories of four women with bronchiectasis, three of whom use oxygen, the book offers valuable insights and practical tips. You can find the link to order the book on speakupinbronchiectasis.com Breath deeply knowing that treatments are on the way!! #Brensocatib #Insmed #ClinicalTrials #Bronchiectasis #COPD #Asthma “Mangia,” in Italian, means “eat.” Eating is crucial to maintaining a strong body. Research shows that there is an association between Body Mass Index (BMI) and bronchiectasis (BE) prognosis with a BMI below 18.5 associated with a poorer prognosis.
I think I can say for all of us, we do not want a poor prognosis. We want to feel well and live long lives. That is why we have to be laser focused on our weight. Many of us, including myself, have spent a lifetime watching what we eat. The scale often decided whether it is a good or bad day. (If you can’t relate, I applaud you!) However BE researchers are telling us we are doing ourselves a disservice if we are intentionally or unintentionally maintaining a low BMI (below 18.5). For example, if you are 5”5’ inches tall and weigh less than 111 pounds, you need to put on weight. According to Michelle MacDonald, a nutrition supervisor and expert from National Jewish Health, who I consulted for my book, “The BE CLEAR Method to Living with Bronchiectasis,” we should even aim higher and be closer to a BMI of 21. I give tips to better eating in my book, and if you listened to the nutrition series through Bronchiectasis Info & Research, you have a good idea of how to take baby steps toward this goal. But, knowing isn’t doing. It might be that you had a weight issue your whole life and now finally you are thin without even trying. Seems like a BE perk, right? It’s not. Please think about what I am suggesting. Have a heart-to-heart with yourself. And hopefully, piano, piano (slowly, slowly in Italian) you will gain weight. MANGIA BENE!! #bronchiectasis #beclear #beclearmethodtolivingwithbronchiectasis #mangia#eatwell #healthyeating #healthyweight #bodyimage |
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
February 2025
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