Imagine this: Palm trees sway gently, the sun warms your back, and a cool breeze carries the scent of the ocean. Sounds like a dream, right?
Make it a reality at the Bronchiectasis/NTM happening in San Diego at the luxurious Fairmont Grand Del Mar this May 16th-17th. Join us for: *Meaningful connections with the bronchiectasis and NTM community *Invaluable updates from leading experts in interactive sessions *Learning opportunities whether you attend in person or virtually To register click here!! Thank you Amy Leitman and the non-profit Bronchiectasis/NTM Info and Research team for organizing this event. Also, many thanks to Insmed and others for sponsoring this event. I’m so proud to volunteer as an ambassador for this fabulous organization. When the bronchiectasis community of people with BE, researchers, clinicians, industry and non-profits come together, we are a MIGHTY FORCE!!!! #community #learning #ntminfo #bronchiectasisinfo #bronchiectasis #ntm #ntmlungdisease #sandiego #bronchiectasisconference #ntmconference #education #insmed #respiratoryhealth #respiratorytherapist #respiratorytherapy #rrt
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On my YouTube channel, the “Airway Clearance” playlist is the clear winner! The “Aerobika in Detail” video has over 1,500 views. It warms my heart that people worldwide are accessing this information and finding it valuable.
Speaking of valuable information, did you catch the recent Yale presentation on bronchiectasis and MAC infections? It was truly amazing, as always. Dr. Ashley Losier, who I saw for a second opinion five years ago at Yale, truly hit it out of the park, and Marjorie Cullinan, RRT, Operations Manager of Yale’s Pulmonary Function Testing, was a shining star! But beyond the specific airway clearance tips, what truly resonated was Marjorie’s reassuring approach. For us “bronchi-warriors,” who can sometimes feel quite anxious, that makes a world of difference. Unlike a glass jar, our lungs don’t offer a view of how well we’re clearing mucus. Some folks bring up lots, others are less productive. This can lead to self-doubt and uncertainties. Compounding this, many of us haven’t had one-on-one guidance from a respiratory therapist, relying instead on peers and online resources. While this is commendable, it can leave us lacking confidence. That’s why even years after our diagnosis, we still want more airway clearance education. We’re told it’s vital for managing bronchiectasis, but often left to navigate without personalized instructions. It’s like being told, “Drive safely, your life depends on it!” without ever learning the rules of the road. Haven’t listened to the Yale recording yet? Do it today! Know that while the presentation is on NTM infections, much of the information is useful for those with bronchiectasis. #bronchiectasis #BronchiectasisEducation #NTM #NTMLungDisease #MACLungDisease #RespiratoryTherapy #respiratorytherapist BE CLEAR with Bronchiectasis, LLC has a consulting relationship with Monaghan Medical Clearing our airways of mucus can be tricky at times. What works for one person might not work for someone else. Or what’s working for you today might not be as effective in the future. That’s why whenever possible, it’s good to get professional input.
My airway clearance is a combination of exercise, using a HFCWO vest, nebulizing hypertonic saline, using my Aerobika, Autogenic Drainage including a huff cough, postural drainage and EXERCISE All of these approaches can be effectively done by many as stand alone therapies, but because I have these devices, I often mix and match them. I enjoy experimenting but one thing that’s absolutely necessary for me is postural drainage. There is controversy regarding postural drainage because it’s not ideal if you have gastric reflux. I don’t have reflux but with that said, I try to wait at least two hours after eating before I do my airway clearance. I have shown many people how I do airway clearance but always with the caveat that they should seek out professional input. Also, it’s important to note that there are certain contraindications for using some of the airway clearance devices. Just another reason why several sessions with a respiratory therapist or physiotherapist is the best way to start a lifetime of keeping your lungs clear. An excellent airway clearance website—IMPACT Educate yourself so you can advocate for the best care. Then try to help others in the BE community. It’s up to us! #Bronchiectasis #asthma #AirwayClearance #ntmlungdisease #maclungdisease #lunghealth #chroniccough BE CLEAR with Bronchiectasis, LLC has a consulting relationship with Monaghan Medical I am a volunteer ambassador for the awesome Bronchiectasis/NTM Info and Research non-profit agency. I post their upcoming webinars and conferences but more than anything, I am passionate about their support groups.
There are over 35 including an international one!! In these groups we talk about a wide range of experiences and issues. It feels like an old-fashioned quilting circle except we are talking about airway clearance, exercise and nutrition instead of fabric patterns and quilt designs. To see if there’s a support group in your area (many are virtual) go to https://lnkd.in/eTvGEpQH No support group? Check in with Trisha at patricia@ntminfo.org. She is the Engagement Officer and she will help you find one or perhaps start one. The best part of being in a group is sometimes we really connect with a few group members and then we have our own mini-support circle. Warm. Supportive. Comforting. Community. #Bronchiectasis #NTMLungDisease #MACLungDisease #ChronicLungDisease #SupportGroups #SupportGroup #ChronicIllnessSupportGroup #NTMIR #BronchiectasisInfo Thank you everyone! If you have Gmail you can subscribe and be alerted with each new video! It also motivates me to continue producing content.
https://youtube.com/@BECLEARwithBronchiectasis Video playlists are organized by the BE CLEAR acronym: Breathing Exercise Clearance of Airways Laughter Eating and Drinking Alternative Therapies Relaxation, Rest and Sleep Select “Playlists” and choose what interests you. I’ve been favoring airway clearance with 9 videos because that’s what you asked for! Interested in a particular topic and would like a video on it? Let me know! Remember… bronchiectasis is a chronic condition and together we can manage it with education and when necessary, advocating for what we need. I am very hopeful about our future! There are promising treatments in the pipeline, but in the meantime, we need to commit to doing our best to manage our health. PLEASE SHARE in support groups and in online community forums #Bronchiectasis #COPD #Asthma #Covid #LongCovid #Mucus #Phlegm #Sputum About 25-30% of people with bronchiectasis will at some point grow Pseudomonas aeruginosa (Pa) in their lungs. The older we are, the more widespread our bronchiectasis and the poorer our lung function, the more likely we are to get a Pa infection.
Regular sputum cultures are critical as sometimes there are no indications that Pa is causing an infection. However, particularly for those of us who have had these infections in the past, we might notice: Green sputum More sputum Bad breath More fatigue More coughing There seems to be consensus in the medical community that when Pa first appears in our sputum, effort should be made to eradicate it by taking oral antibiotics, or IV antibiotics, and perhaps, adding inhaled antibiotics. However, if Pa remains in our lungs, it becomes challenging to clear. Similar to NTM bacteria, Pa bacteria clump together in a biofilm, making it difficult to eradicate. On top of that, it can be antibiotic resistant. Sometimes chronic Pa doesn’t cause an increase in symptoms and discomfort. However, when it does, people will often take courses of antibiotics to quiet it down. During the European Lung Foundation Bronchiectasis Patient Conference in 2022, Dr Josje Altenburg from Amsterdam UMC discussed this in her talk titled —”Is the Pseudomonas a threat or a pet?” Have a listen: https://www.youtube.com/watch?v=_bNlHxTIY14 Currently, there is a clinical trial looking at phage therapy for Pseudomonas aeruginosa in people with bronchiectasis. The study is being conducted by Armata Pharmaceuticals at multiple US sites. The phage are administered through inhalation therapy. The study is still recruiting and will be complete with 60 participants. Please note one needs to have a BMI equal to or greater than 18 to be included in the study. armatapharma.com/ #pseudomonas #lungdisease #bronchiectasis #airwayclearance #sputum #mucus #phelgm #lunginfection #lunginflammation #chroniccough I have had a nontuberculous mycobacterial infection(NTM) called a Mycobacterium Avium Complex infection (MAC).
These infections are difficult to treat (3 antibiotics for at least 12 months) so I take precautions to reduce the possibility of acquiring new ones. The good news is many who have bronchiectasis do not have MAC infections and there is roughly a 75 percent chance they never will. But for those of us who already have a MAC infection or have had one in the past, our lung health is at greater risk. Water is a source of NTM bacteria. According to water expert Dr. Falkinham, NTM bacteria are in all municipal water systems. Well, you might be thinking, they chlorinate water so what’s the problem? The problem is that NTM have a bunch of superpowers including a thick fatty coat that prevents water and disinfectants from entering their organism. This means that chlorine in the concentration in water systems is not strong enough to kill NTM. To make matters worse, NTM rarely hang out alone, but rather in “protective gangs” more scientifically known as “biofilms.” They line our plumbing pipes and accumulate in our showerheads. The best way to deal with these bad guys is by mechanically removing them by scrubbing and killing them with heat. Some or all of the following can be done to decrease exposure in the bathroom: Open a bathroom window while bathing Run a bathroom fan while bathing Take short showers Use a showerhead with large holes Increase your hot water tank temperature to 130 degrees Let your taps run for several minutes before using water Soak your showerhead in un-diluted bleach for 30 minutes or replace your showerhead regularly Take a bath instead on a shower Run faucets that are rarely used like those in a vacation home for 5 minutes before use For Dr. Falkinham’s full article, go to my website’s “Resources” page and scroll to the bottom: https://www.letsbecleartoday.com/bronchiectasis-information #maclungdisease #ntmlungdisease #Bronchiectasis YALE RECORDING NOW AVAILABLE!!
When the non-profit Bronchiectasis/NTM Info & Research teams up with Yale School of Medicine, exciting things happen! I want to express my sincere gratitude to Debbie Breslawsky, patient advocate, friend, and mentor for many years, for organizing this fantastic talk. Years ago, I traveled by train from New York City to New Haven to attend this talk in person. Now, we can all enjoy it from the comfort of our homes! In addition to Dr. Ashley Losier and an infectious disease specialist, Dr. James Shepherd, Marjorie Cullinan, RRT, discusses the ever-intriguing topic of AIRWAY CLEARANCE! It's exciting to see the growing number of doctors specializing in bronchiectasis and NTM lung disease. Dr. Losier is one such doctor. Before switching over to NYU Langone for my care, I sought her expertise when I visited Yale for a second opinion. Back then, I saw Dr. Charles Dela Cruz and Dr. Losier was a pulmonary resident working with him. Dr. Dela Cruz has since moved on, and Dr. Losier now leads Yale's Bronchiectasis and NTM Infections Program! My hope is that within the next five years, everyone will have access to this level of specialized care in their communities. Also, a thank you to Insmed for sponsoring this and other educational webinars. Looking forward to the brensocatib study results!! Click to sign up and listen to Yale webinar recording!! #bronchiectasis #ntm #ntmlung #maclung 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 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 |
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
March 2024
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