 Do you know about NTM lung disease? 🫁🦠🤔
Many people have heard of Mycobacterium Avium Complex (MAC) lung infections, but few realize it's part of a larger category: Nontuberculous Mycobacteria (NTM). Even my New York City primary care doctor whose grandmother had a MAC infection had never heard of the term “NTM”‼️ Key facts: • There are ~200 types of NTM bacteria • Only a small group cause illness • MAC is responsible for ~80% of NTM infections • Other notable types: M. abscessus and M. kansasii NTM infections can be challenging to diagnose and treat. If you have a persistent cough and other respiratory symptoms, consult your doctor. Also, check out the nonprofit NTM Info & Research. When I was first diagnosed in 2017 with a MAC infection, they were one of the only sources of information. I’m proud to say that because of this organization’s advocacy we now have an NTM Awareness Day on Sunday, August 4th!! Let’s do everything we can to support this amazing organization that advocates for us, sponsors webinars and administers over 35 support groups around the world. Check out this website featuring all the UPCOMING ACTIVITIES for NTM Awareness Day! Go to my bio and today’s story. https://worldntmday.org/ Let’s celebrate together!! #NTMLungDisease #RareDisease #LungHealth #ChronicIllness #NTM #NTMdisease #bronchiectasis #lungdisease #raredisease #MACdisease #mycobacteria #chronicillness #respiratoryhealth #lunginfection #pulmonaryhealth #ntmawareness #breathe #lunghealth #chroniccough #airwayclearance #ntmresearch #ntmtreatment #spoonielife #invisibleillness
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 Are you familiar with postural drainage? It refers to lying in a position that will allow gravity to help you get mucus out of your lungs. In a recent webinar by Dr. PJ McShane, she said it’s a critical part of airway clearance. However, at the same time she acknowledged that many of us have issues with reflux.
“Now a lot of you have GERD or aspiration. So you obviously don’t want to do this on a full stomach. If you just had lunch, now’s not the time to get your head below your hips, but it is very, very, very important to use postural positioning…this is just logical. If you wet down the sputum and now it’s liquidy from the saltwater and then you lay down, the gravity is going to help drain that sputum. If you are one of my many patients who says I cough when I lie down to go to sleep at night that’s a sign that postural positioning can help enhance airway clearance because what’s making you cough when you lie down is that the sputum is starting to drain and collect in your central airways and you have to cough it out. So exploit that concept by using postural positioning. For example, if you’ve got right middle lobe bronchiectasis and ladies out there with non tuberculous mycobacteria, I bet most of you do. So the right middle lobe is right underneath the right breast. You want to sort of lie on your back sort of on your left hand side and maybe even raise that right arm. So you’ve got lots of really good opening there to help get that right middle lobe in a position that it can drain into your main airway and you can cough out the sputum.” After a year and a half of not being able to get sputum out, I found postural drainage was the key. My favorite position is the one I’m demonstrating in this photo. I often use my Aerobika while in postural drainage. Please note this discussion is for educational purposes only. Talk to your medical team before changing your current care. #bronchiectasis #lungdisease #chronicillness #asthma #copd #breathe #oxygen #fibromyalgia #spoonie #raredisease #health #gerd #heartburn #acidreflux #guthealth #digestivehealth #bloating #ibs #nutrition #healthyliving #PosturalDrainage #Mucus #Phlegm #Sputum  I set aside the day to listen to the recording from the World Bronchiectasis Conference held in Dundee, Scotland. I had planned to attend, but when I heard my UK family was coming to the States for the 4th of July celebration, I decided not to go. But that doesn’t mean that I’m not interested in everything they had to say. Thankfully as a health educator I’m able to access the recordings and share highlights with you.
A speaker who always delivers is Dr. Leo Segal from NYU Langone. Maybe I’m a little partial being a New Yorker myself, but I find his talks on the lung microbiome fascinating. I never get tired of listening to him and learning something new. I am currently working on a client website page that will curate research articles and webinars on particular topics. This will certainly be one of my deep dive areas. Perhaps I can even get myself invited to Dr. Segal’s lab as an investigative reporter 🙂 In the meantime, I’m walking through the Meatpacking District and plan to hop up onto the Highline ending at Hudson Yards. But rather than bopping along listening to my exercise playlist, I’m listening to the fabulous recordings from the 7th World Bronchiectasis Conference. Feeling so thankful for all the attention that BE and NTM lung disease are currently receiving. And honored to have a small role in educating our community and encouraging everyone to stay their healthiest because there are so many exciting treatments in the pipeline! #WorldBronchiectasisConference2024 #LungMicrobiome #Research #LungResearch #Bronchiectasis #BronchiectasisAwareness #HealthEducator #HealthAdvocate  It warms my heart knowing people are being helped by my book, “The BE CLEAR Method to Living with Bronchiectasis”!
The three-year publication anniversary is coming up and it’s still selling strong. Also, I’ve had the wonderful opportunity to talk to dozens of our BE & MAC support groups about The Method. The Method is what helped me clear a MAC infection and stay healthy. When people ask me what my secret was for getting rid of that nasty infection, I always say there is no secret. It’s all in my book!❤️💜 For under $20 it’s a great way to jumpstart a personalized healing program. And then, when you’re ready, let’s follow it up with a consultation. Book on Amazon - tinyurl.com/f8j27mny Consultation information- letsbecleartoday.com/consultations Most importantly, know you are not alone❤️💜. I am here to support you with education, compassion and advocacy. #Bronchiectasis #BeClearMethod #LindaEsposito #ChronicIllness #HealthEducation #SelfCare #BreathingTechniques #AirwayClearance #WellnessJourney #HealthAdvocate #LivingWell #ChronicHealth #RespiratoryHealth #Empowerment #HealthyLiving #SupportCommunity #MindfulLiving #WellnessCoach #PatientAdvocacy  Did you read my previous blog post about the connection between the lungs and the nose? How bronchiectasis (BE) and rhinosinusitis often occur together?
If so, you might have already deduced that just as reflux is associated with BE, it is also associated with Chronic Rhinosinusitis (CRS). The tricky thing with reflux is sometimes there are no clues. You don’t have heartburn and you are not belching. It is the sneaky kind of reflux often referred to as “silent.” But just like a stealth bomber, it can still do major damage. To compound matters, it is not always from acid. Non-acid refluxate (liquid, solid and gas) can also occur and according to Dr. Jeffrey King, chief of the Gastroenterology Division at National Jewish Health, when we take PPIs and other acid-lowering medications, non-acid reflux goes up! Geez… so what are we supposed to do to prevent reflux from being aspirated into our lungs or wreaking havoc in our sinuses? Certainly taking precautions like decreasing trigger foods such as alcohol, chocolate and greasy foods is helpful. Also not eating or drinking within several hours of lying down.Some research shows there is good reason to raise the head of your bed and if obese, shed some pounds. However, I can tell you from the 24 ph impedance test I had 6 years ago, that not all reflux occurs at night–mine was ALL during waking hours. Because when we bend at the waist, and unfortunately, even when we are standing tall, we can reflux. Earlier this summer I experimented with what might be a new idea for some of us–alginates. An alginate is what it sounds like, a treatment made with algae. When we take a spoonful after a meal it puts a lid or raft on top of our stomach contents. This physical barrier stops much of the refluxate from making its way into our lungs. There are familiar remedies like Gaviscon Advance that contain an alginate. Also, RefluxRaft and Reflux Gourmet that taste better and have other calming ingredients. What works for you might not for someone else. And, what works on a daily basis might not if you are having an attack. Have you tried alginates? Speak with your doctor before changing your current care. #Reflux #AcidReflux #Bronchiectasis #nasal #drippynose #postnasaldrio #stuffynose  Are you tired of battling constant sinus infections and a stuffy nose? You're not alone.
Over 60% of people with bronchiectasis (BE) also experience Chronic Rhinosinusitis (CRS), according to Australian researcher and cardiopulmonary physiotherapist Annemarie Lee. There's even more to the story: Almost 100% of individuals who have BE with primary ciliary dyskinesia (PCD) and immunodeficiencies also have CRS. It makes perfect sense that upper and lower respiratory conditions often occur together. They share the same mucosal lining, allowing bacteria-filled secretions from the upper airways to drain into the lower airways (some suggest this movement might even be bi-directional). With this connection in mind, treating existing sinusitis becomes a crucial step in reducing inflammation and infection in the lungs. My personal journey with nasal issues began well before my bronchiectasis diagnosis. Twenty years ago, I sought help from an ENT doctor for my drippy nose and hoarseness. He ran a battery of allergy tests, but everything came back negative. He recommended a nasal wash and spray. The spray, ipratropium bromide, did the trick, and I still use it most mornings. I also rely on Simply Saline nasal spray by Arm and Hammer and occasionally perform a nasal wash with a NeilMed Squeezie. I favor this particular device over the standard NeilMed bottle because of its wide mouth, which allows for easy cleaning with a soft brush and more effective sterilization in my steam sterilizer. Do you struggle with chronic nasal problems? Who do you see for care – a specialist or your GP? How do these ongoing nasal issues impact your well-being?
#bronchiectasis #rhinosinusitis #nasalpolyps #nasalissues #sinusheadaches  Why isn’t a cough enough? Why do people living with bronchiectasis need to do daily airway clearance?
During a cough, air is expelled from the lungs at high speed, clearing the airways of irritants, mucus, or foreign particles. This forceful action can also bring up mucus from the lungs. Unfortunately, individuals who are underweight or frail may lack the necessary strength to cough effectively. Furthermore, coughing relies on the elasticity of the airways to manage the increased pressure. But, in conditions like bronchiectasis, the airways lose their elasticity and do not respond normally to the pressures exerted during a cough. According to Dr. PJ McShane, “This is why you can cough your head off to the point that you’re exhausted and nothing’s coming out and you don’t feel like it’s effective, and instead you’re just getting tired. So that’s where airway clearance comes in. And that’s why it’s so important to learn techniques you can do, other than just a simple cough.” #ChronicCough #airwayclearance #Bronchiectasis #lunghealth #RespiratoryCare #PulmonaryRehab #ChestPhysiotherapy #LungFunction #copd  Mucus plays a vital role in lung health. It contains mucins, which act like a sponge, absorbing water and creating a gel-like substance. This gel traps dust, germs, and toxins, protecting the airways. However, in bronchiectasis, the balance is disrupted.
The excess mucins in bronchiectasis make the mucus thicker and heavier. This overwhelms tiny hairs called cilia lining the airways. Normally, cilia act like miniature brooms, sweeping mucus upwards to be coughed out. But burdened by the dense mucus, they struggle to function effectively. This leads to mucus buildup, creating a breeding ground for infections and further inflammation. Dr. McShane offers a reassuring message in her recent webinar sponsored by NTM IR. “Scientists are working on fixing this problem based on drugs that target those receptors and target the mucin. We cannot fix that by our diet, so you’re not doing anything wrong. Keep living your life. And stay tuned because science is moving forward.” In the meantime, we can do our best to help our ineffective cilia clear out mucus by using various airway clearance devices and modalities. #AirwayClearance #Mucus #cilia #Bronchiectasis  “I want you to understand that this is nothing that you’re doing wrong and you can’t fix this by drinking water.
With bronchiectasis mucus becomes heavy and weighs down the epithelial cells and the cilia. So now the mucus becomes stagnant.. Don’t go rushing to your refrigerator and grab a bottle of water and start drinking. I want you to understand that if this is nothing that you’re doing wrong and you can’t fix this by drinking your water. In fact, if you do drink more water, you’re going to lower your sodium in your blood and then you’re going to have symptoms and have to go to the ER and it’s going to be a nightmare. So, just drink if you’re thirsty. You can’t fix these abnormal abnormalities in your mucus by your diet. Many of my patients will say that (they) shouldn’t have dairy products because it increases the mucus. And I’m not sure that’s 100% scientifically based. I would rather my patients, get the dairy, get the protein, get the calcium from the dairy in their diet, and understand that the abnormalities of their mucus are coming from something different than just what they eat in their diet.” Interested in hearing more? Check out Dr. PJ McShane’s webinar!! youtu.be/VEYK67nld_o #Bronchiectasis ##Breathing #Exercise #AirwayClearance #Nutrition  HAPPY WORLD BRONCHIECTASIS DAY!!
To celebrate this event, we've spent the past 2 weeks focusing on what BE experts consider essential for living well with bronchiectasis: excellent nutrition. We discussed ways to add calories and protein. But remember, IT'S ALL IMPORTANT! Healthy fats, carbs (including starchy carbs), and the rainbow of fruits and vegetables! My favorite way of eating is following the ancient Japanese practice of including all five tastes - salty, sweet, sour, bitter,and umami - in a meal. When I eat this way, I enjoy my food more and nourish my spirit. We still have lots to discuss about nourishing ourselves to build immunity and a strong body, a crucial element of self-care. Perhaps the most challenging aspect is body image. Many of us, especially women in the US, are steeped in "Thin is In" culture from a young age. Some view the weight loss that often accompanies bronchiectasis as a perk, especially those of us who were overweight children. It can be difficult to move from that mindset to eating more food without worrying about calories (I know‼️). Now, I come along to say let's all be able to "Pinch an Inch." Let's not only get over the 18.5 BMI redline, but let's add some padding, too. Because when we get sick, our body will try to convert not only fat into disease-fighting energy, but also lean muscle mass. Lean muscle mass includes all body components that are not fat: muscles, tissues, organs, bones, and blood. And, of course, we want to preserve all of the above because, when you lose some of it, like bone, it's not likely to come back. So consider this: What is most important to you - creating a stronger body or having a flatter stomach? Are you willing to create a "muffin top" like me? I did it by moving from a weight of around 130 to around 135. I can "pinch an inch" at this weight and am proud of it. Try to meet with a registered dietitian, preferably one who specializes in lung health. Getting expert guidance can make all the difference. Do not change your current care without first speaking to your medical team. #WorldBronchiectasisDay #BetterNutrition #Bronchiectasis #COPD #ThinIsNotIn |
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 2025
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