 Dr. Jakko van Ingen, a leading microbiologist and NTM expert, is dedicated to finding treatment solutions for those of us living with MAC and M. abscessus. As the head of the Mycobacteriology Reference Lab at Radboud University Medical Center in the Netherlands, he's at the forefront of research and treatment development. I had the pleasure of speaking with Dr. van Ingen at the 2023 World Bronchiectasis Conference in New York. I was impressed by his passion and expertise; he's not only a brilliant scientist but also a genuinely friendly and engaging person. One of his latest projects involves looking at bacteriophages (phages) for their potential use in treating a fast-growing NTM called M. abscessus. By collaborating with existing phage banks, Dr. van Ingen is working towards expanding the available resources and accelerating research in this promising area. Stay tuned for more about Dr. van Ingen's groundbreaking work with hollow fiber models! #NTM #bronchiectasis #science #research #healthcare #microbiology #bacteriophages #Mabscessus #innovation #phages #treatment #health #medicalresearch #lunghealth #phagetherapy #RadboudUniversity #Mycobacteriology #NTMinfections #bronchiectasisawareness #medicalscience #publichealth #NTMninja
0 Comments
 Mamma Mia! Wait until I tell you this story…
A couple of weeks ago, I recorded videos with two incredible people: Dr. Tim Aksamit from the Mayo Clinic and the new Assistant Director of Bronchiectasis and NTM, Alyssa Dittner, BS, RRT. My biggest concern was whether I would have a voice. Many of us with bronchiectasis experience hoarseness but additionally, I was battling a virus, a low-grade fever and brain fog.😱😱😱 Adding to the drama, Alyssa lost power at home and had to use her phone as a hotspot on her porch to moderate the discussion. When her phone died, she rushed to a nearby coffee shop for Wi-Fi. Throughout all this, Dr. Aksamit was our island of calm, reassuring us that we would do a fine job—because that’s just who he is. We managed to pull it off, though I'm hesitant to listen because I'm sure I sound like a frog.🐸🐸🐸 Those of us living with chronic illness know that we often tackle challenges when we're not at 100%. But if it's important to us, especially when helping others, we rise to the occasion. Here is Medlive, the producer of the event’s announcement: 📣 Coming 9/30! Don't miss this important discussion on non-cystic fibrosis #bronchiectasis (#NCFBE) 🫁 Join us for these #PatientEducation sessions as a #pulmonologist & a patient with NCFBE explore recognition & diagnosis, management strategies, & emerging therapies 👏 Register now ➡️ https://bit.ly/4gvXiO9 Please sign up now!! I need your support!💜🩵💙 #Bronchiectasis #ChronicIllness #HealthJourney #PatientEducation #Pulmonology #HealthcareHeroes #Resilience #OvercomingObstacles #HealthAdvocacy  Did you know that in 1981, during an assassination attempt, a bullet punctured President Reagan's left lung? After surgery, he faced complications, including coughing up blood. Reagan credited his recovery to the excellent care from respiratory therapists. In their honor, he established Respiratory Care Week, celebrated the last week of October.
As this week approaches, I invite you to share stories about how a respiratory therapist (physiotherapist) has helped you manage bronchiectasis. Whether in-clinic or via video call, your experiences matter. Many in our community express frustration over limited access to respiratory therapists for airway clearance. Often, U.S. health insurance doesn't cover such education, leaving nurses to instruct on airway clearance. However, if your physician is hospital-based, you might have had a better chance of meeting with a Registered Respiratory Therapist (RRT). Let's celebrate the RRTs active in bronchiectasis care and advocate for more support. As a top BE doctor says, "The three pillars of bronchiectasis management are airway clearance, airway clearance, and airway clearance!" Email me at [email protected] to connect and share your story. #RespiratoryCareWeek #RonaldReagan #LungHealth #RespiratoryTherapists #Bronchiectasis #AirwayClearance #physiotherapist #physio  Did you have a chance to listen to the 2024 7th World Bronchiectasis Conference summaries? If not, let me entice you with this research that was shared by Drs. Shteinberg and Chalmers!!
Dr. Rick Boucher, an American researcher, highlighted a critical aspect of bronchiectasis. He explained that, unlike most organs that receive oxygen through blood supply, the dilated lung tubes in bronchiectasis get their oxygen directly from the airways. When mucus obstructs these airways, it cuts off the oxygen supply, leading to cellular damage and adverse effects on lung function. This obstruction exacerbates the production of mucus, creating a vicious cycle of reduced oxygen supply and increased mucus production, which further blocks the airways and increases inflammation. Understanding this cycle underscores the importance of daily mucus clearance to manage BE and prevent further lung damage. Even if we don’t cough up sputum, doing airway clearance might unblock air passages and improve oxygen getting to our cells. Click now to listen!! https://bronchiectasis-patient.org/?page_id=17 #Bronchiectasis #LungHealth #AirwayObstruction #MucusClearance #LungFunction  Hi Bronchi-family!!🩵💙 They say good things take time and my quarterly newsletter is a testament to that! While it might appear effortless, crafting each edition takes about 10 hours – including a two-hour session with my technical consultant, Terrific Tania🌺. This dedication translates to a high open rate and click-through rate, meaning you're getting valuable and engaging content directly in your inbox. Want to join the hundreds of happy subscribers? Click here to sign up!! Let's support one another and make learning fun! Subscribe today and become part of our growing BE CLEAR community.✨ With gratitude and determination🩵💪🏽, Linda Esposito #beclear #beclearmethod #newsletter #blog  Dr. PJ McShane often praises hypertonic saline for its benefits, and I find myself agreeing with her enthusiasm. Recently, while feeling under the weather, I opted for nebulizing isotonic saline (0.9%) in addition to my usual 7% hypertonic saline.
Isotonic saline matches the salt level of our bodily fluids, unlike the higher salt in hypertonic the 3% and 7% solutions commonly prescribed in the U.S. Hypertonic saline is often favored for its antimicrobial properties. However, during the World Bronchiectasis Conference in Dundee, Scotland, a researcher shared intriguing findings: 0.9% saline was more effective at killing bacteria than some antibiotics they tested. This challenges the belief that only hypertonic is antimicrobial. Research on this topic is limited, so we rely on available data. However, it might be reasonable to suggest if on occasion higher concentrations feel harsh, consider using isotonic .9 saline. This might not compromise germ-fighting capabilities as much as we thought and be gentler on the airways. Remember, this information is for educational purposes. Always consult your healthcare provider before altering your treatment plan. #HypertonicSaline #IsotonicSaline #Nebulization #Bronchiectasis #RespiratoryCare #Healthcare #PatientCare #SalineScience #AirwayClearance #Nebulizing #Nebulizer #Nebulising #Nebuliser  I'm still in awe of my Oransi HEPA air purifier❤️‼️It's been a lifesaver since the company gifted it to me during the NYC wildfires.
I was initially hesitant about adding another appliance to our apartment, but I'm so glad I changed my mind. This little guy has been a workhorse, capturing a ton of dust and even a mysterious feather! 🪶 I've already replaced the filter once, and it was full of dust. If you're looking for a way to improve your indoor air quality, I highly recommend getting an air purifier. Do you have an air purifier in your home? Thinking about it? #Oransi #AirFilter #IndoorAirQuality #NYCWildfires #CleanAir  Caroline is an inspiration‼️
She embraces life with remarkable resilience and has not allowed obstacles to deter her pursuits. Last year, she embarked on a language-intensive trip to Germany and she frequently joins others to play the clarinet, creating beautiful music together. Currently, she is on a tour of national parks, reaching new heights and enjoying the fresh air. Upon her return, Caroline will begin antibiotic treatment for Mycobacterium avium complex (MAC), but she remains undaunted by this challenge.💪🏽⭐️💪🏽 Caroline has expressed her desire to share her journey, hoping to inspire others with similar conditions to overcome fear and discover new possibilities. She often reads about the fear many people with this disease experience and wants to encourage them to let go of some of that fear to open up a whole new world.✨✨ Let's extend our best wishes to Caroline for a smooth treatment journey and many more moments of creating beautiful music🎶❤️🎶 #Bronchiectasis #Inspiration #Resilience #OvercomingObstacles #BronchiectasisAwareness  Exciting news! We reached out to the organizers of the 7th World Bronchiectasis Conference, which took place in Dundee, Scotland, this past July, and they have graciously posted two FREE 50-minute videos featuring leading BE/NTM doctors summarizing the conference highlights.
The doctors discuss key insights and reflect on the dynamic progress in the field of bronchiectasis. The conference brought together a global community of experts, focusing on the latest research, treatment strategies and the importance of multidisciplinary approaches in managing bronchiectasis and its comorbidities. https://bronchiectasis-patient.org/?page_id=17 Please take advantage of this learning opportunity. It will show the organizers and others we are interested in ongoing education. The next conference is in Australia and hopefully we will be able to virtually attend the talks. ⭐️⭐️⭐️ Thank you to the Lena Group and Drs. Chalmers, Shteinberg, Addrizzo-Harris and Aliberti for this fabulous opportunity.❤️ Enjoy! Linda Esposito #2024worldbronchiectasisconference #bronchiectasis #NTM  "Habit stacking" is a powerful technique for building new habits by attaching them to existing ones. This method uses the momentum of habits you already have, making it easier to incorporate new behaviors into your daily routine.
Case in point, when I do my afternoon clearance, if I still feel I could clear my lungs a little more, I leave my Aerobika and my massager on my bed. My book is already there because I have the habit of reading as part of my bedtime ritual. This reminds me to give airway clearance one more try before bedtime…voilà habit-stacking!! Let’s review the steps: 1. **Identify Existing Habits**: Start by listing habits you already perform consistently. These could be as simple as having a morning coffee or brushing your teeth. 2. **Choose a New Habit**: Decide on a new habit. Ensure it's small and manageable to increase the likelihood of success like meditating for 5 minutes in the morning. 3. **Stack the Habits**: Attach the new habit to an existing one. For example, you could meditate right after your morning coffee. 4. **Create a Cue**: You can bring up a meditation app on your phone or place a reminder note on the table before you make your coffee. 5. **Be Consistent**: Consistency is key. Perform the stacked habits daily to reinforce the new behavior. 6. **Reflect and Adjust**: Regularly assess how the habit stacking is working for you and make adjustments when necessary. Integrating habit stacking into our daily life, can help us achieve our goals and enhance our overall well-being. What new habit will you stack onto your existing routine? 🌟 www.letsbecleartoday.com #habits #MakingNewHabits #HabitStacking #AirwayClearance #aerobika #opepdevice #mucus #phelgm #sputum #Bronchiectasis #COPD #Asthma #Emphysema #ChronicBronchitis #AlphaOneAntitrypsinDeficiency #PrimaryCiliaryDyskinesia #commonvariableimmunodeficiency #cysticfibrosis #covid #longhaulcovid #rituals #bedtime #bedtimeroutine #beclear #beclearmethod #beclearmethodtolivingwithbronchiectasis #lindaespositomph  This week, I planned to focus on how we can clear our physical, mental and emotional space to allow for new ideas and habits. But I became fascinated by a post on Bronchiectasis/NTM Info & Research’s online messageboard by bronchi-sis Mary. It’s about stem cell research which holds many possibilities once the technology is perfected. And, maybe it’s a stretch, but, its potentially about removing organs that are no longer able to do their job and replacing them with new ones created from our stem cells. So that is sort of, “out with the one, and in with the new,” isn’t it? At a National Jewish Health fundraiser I attended in May, Dr. Greg Downey spoke about cutting-edge research including stem cell therapy. He said: “Currently, we have the technology that we can reproduce most of a lung structure in a culture dish we can get using cells called stem cells, which we can purify from skin or from adipose tissue, we can manipulate them and give them patterns that will actually instruct them to form branching airways or air sacs. We do that every day. The key is, how do you get those cells in that test tube or petri dish back into a person in a way that that organ functions? This is really the key right now and then we and other groups are working hard on this. You first have to create a structure, like a scaffolding. It's called the extracellular matrix, kind of like the framework of a building. That is something that we and others have been working hard on. We're still not putting that into humans yet because we're not quite ready, but it's getting closer. But I will also just say that other groups have tried some of this stuff and done it too early, and there were some catastrophic failures. For example, tracheal replacement done in Sweden. It was done before the technology was ready, and virtually 100% death rate after a couple of months. So we have to, we have to be extremely careful that this is well thought out and tested, but it is moving quickly.” Exciting research! Let’s continue to watch it closely. 🫁🫁🫁 Have a listen to Dr Downey's talk. #stemcell #stemcellresearch #bronchiectasis #hope #stemcells #regenerativemedicine #innovation  "All big things come from small beginnings. The seed of every habit is a single, tiny decision. But as that decision is repeated, a habit sprouts and grows stronger. Roots entrench themselves and branches grow. The task of breaking a bad habit is like uprooting a powerful oak within us. And the task of building a good habit is like cultivating a delicate flower one day at a time."
This quote from James Clear, author of Atomic Habits beautifully illustrates the journey of growth and development, reminding us that every significant achievement starts with a small step. 🌱 **Start Small**: Just like planting a seed, initiating a new habit or project requires a single decision. 🌳 **Consistency is Key**: Repeating that decision nurtures the habit, allowing it to flourish over time. 💪 **Growth Takes Time**: The roots represent the foundational work you put in, while the branches symbolize the results of your efforts. ✨ **Patience and Persistence**: Remember, even the mightiest oak started as a tiny acorn. Embrace your small beginnings and trust the process. Let’s celebrate our accomplishments, no matter how small they may seem! What small decision are you making today that could lead to something big? ✨✨✨ #Inspiration #GrowthMindset #SmallBeginnings #Inspiration #GrowthMindset #SmallBeginnings #AtomicHabits #JamesClear #PersonalDevelopment #HabitBuilding #MindsetMatters #StartSmall #ConsistencyIsKey  Feeling confident about how we sterilize our airway equipment is crucial and it's great to see more people finding methods that work for them, whether it's boiling, using baby bottle sterilizers or alcohol soaks. However, an often overlooked aspect of this process is the importance of properly drying these devices.
Drying is just as critical as sterilization, but it presents unique challenges. We can't actively dry devices by hand because skin cells can contaminate them and manual drying could damage their delicate components. Here are some tips to ensure effective drying: ✨Make sure to shake out all the water in your pieces thoroughly before air drying. Be mindful of the humidity in your environment, as it can significantly affect drying time. For instance, if you're cooking or showering nearby, the increased humidity will slow down the drying process. ✨When using a baby bottle steam sterilizer, shake out your devices before placing them inside. Baby bottle steam sterilizers differ on the temperature and length of their drying cycle so it’s up to us to make sure our devices are dry. It’s very likely that depending on the room's humidity, they might not be completely dry after one cycle. ✨I recommend running a second dry cycle to ensure they are completely dry before storage. Afterward, perform a simple test by shaking each piece and checking for any remaining moisture. ✨Consider storing your devices disassembled to allow better air circulation, ensuring they remain dry. ✨If you're looking for a more efficient drying solution, consider investing in a UV sterilizer and dryer. These devices can be versatile, suitable for not only airway equipment but also water bottles and toothbrushes. For more detailed guidance, I recently posted a YouTube video demonstrating the use of a UV sterilizer and dryer. Check it out for additional tips and insights! Do you live in a humid climate? How do you dry your devices? #bololo #babybottlesteamsterilizer #Aerobika #nebulizing |
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
November 2025
Categories
All
|
RSS Feed