This week we had such a thought-provoking conversation about supplemental oxygen use on both Facebook and Instagram. Many questions were answered, but of course, like with any rich discussion, many others remain unanswered. I look forward to more discussions and a deeper understanding.
I greatly appreciate respiratory therapist Brian weighing in and saying that not all shortness of breath is treated with oxygen. I found an article by Kathy McNaughton that addresses this situation and gives some remedies. (Edited for length limitations) “How can I be so short of breath, while my oxygen levels are still normal?” Understanding the answer to that is essential in knowing how to proceed. Even if you’re extremely breathless, but your oxygen saturation levels remain in a healthy range, then supplemental oxygen is not the answer. Instead, it’s important to know how to recover from breathlessness. Certainly, resting right away is the first step. Stop whatever you were doing that contributed to you feeling breathless. Respiratory therapist, Mark Mangus, suggests these additional actions: Remind yourself that you know what to do. Taking action can help you overcome the anxiety that often goes along with being short of breath. Position yourself to breathe easier. Leaning forward or bending over helps drop your abdomen away from your lungs, making breathing easier. Lean your arms on your knees or on some stationary object like the wall or a counter. Work on controlling your breathing. If you know how to do diaphragmatic or pursed lip breathing, then do so. ” Let’s continue to educate ourselves so that we can advocate for ourselves and others. Always talk to your medical team before changing your medical care in any way. #Breathlessness #Oxygen #Bronchiectasis #Asthma #COPD #primaryciliarydyskinesia
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Confession time! November’s website blog post completely slipped my mind. Between the holiday whirlwind and a booked calendar, I missed my deadline.
But then it hit me: why stick to just one post a month? There are so many of you who aren’t on social media 24/7, or maybe just haven’t had a chance to catch everything. (I get it, and those those DMs are always welcome!) So, here’s my new plan: a couple of times a month, I’ll go through my social media posts and pick out the ones that resonated most with our bronchiectasis community. The ones packed with info and support, the ones that sparked meaningful discussions. Then I’ll create a permanent home for them on my website blog page. No more missed monthly posts, just a steady stream of the best content throughout the month! I’m planning a series of posts tackling both the basics (diagnosis, treatment) and the nitty-gritty (research, articles), with lots of self-care tips throughout (because feeling our best is key, right?). This journey is for everyone! If something I write is confusing and you have questions, don’t hesitate to ask! No question is too silly and there’s a good chance others are wondering the same thing. And if something sparks your interest, let me know that too! Sharing our curiosity can lead to some fascinating discoveries. So, are you ready to join me in this bronchiectasis exploration? Are you ready to stretch our knowledge and commitment to living our healthiest life? Let’s empower ourselves and each other, one question, one article, one self-care tip at a time! #newbeginnings #Bronchiectasis #COPD #Asthma #CysticFibrosis #Covid #LongCovid #BeClearLivingWithBronchiectasis #LindaEsposito 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 two drugs (azithromycin and ethambutol) are as effective in treating MAC as the “big three” (azithromycin, ethambutol, and rifampin). 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. Do you prefer to ask me questions or have me e-introduce you to the team? Can do! Just message me and let’s start the conversation. Warm regards, Linda Esposito #maclung #maclungdisease #clinicaltrial bronchiectasiswarrior #bronchiectasis Since being diagnosed with bronchiectasis, I've always taken a rescue antibiotic with me on vacation, just in case. I've never had to use it... until now.
A few days into my trip to Italy, I felt a scratchy throat. I didn't have any other symptoms, but I noticed that I was producing more mucus and it was becoming darker. I felt well so it was difficult to justify taking antibiotics at first, but after increasing my airway clearance and not seeing any improvement, I decided to start taking a 10-day supply of Levaquin. It's possible that I just had a virus, but it's also possible that introducing the virus into my lung microbiome made certain bacteria more dominant. Presently, there's a lot of research being done on the lung and gut microbiome. Some of it focuses on how the relationship and communication amongst the microbes can affect one’s health. It's a fascinating area of study and I think we're going to learn a lot more about it in the next five years. On a personal note, my hyper-secretions diminished so I feel I made the right call. #bronchiectasis #travelingwithbronchiectasis #chroniccough 🇺🇸BE America Series🇺🇸
🌟Suzette from California🌟 During the winters, my husband and I have been going to Palm Desert in California. Midway through our stay, we drive to the ocean. Often on these trips, I visit with bronchi-sisters but last year I didn’t make plans to see anyone. You can imagine my disappointment once back home to hear that a person I really wanted to meet, Suzette, was working right in Solana Beach where we had stayed! Hopefully, we will meet up this coming winter. In the meantime, let me tell you about Suzette. She has a radiant spirit and energy even when she is struggling with her health. Once, when I asked for photos to make a collage, she sent me one of her running on the beach and smiling while making heart hands. That prompted a series of emails and Suzette told me that when she was in her 20s, married with children, her lung collapsed. She was treated and eventually had surgery which left scar tissue and chronic chest pain. Intuitively, she knew she had to start running and would wake early to run in the dark. Often these runs brought up a lot of secretions and there were more doctor visits. This went on for 9 years with no diagnosis. Then 3 years ago, she was finally asked by her doctor to provide a sputum sample. That’s when he told Suzette she had bronchiectasis and a MAC infection and would need a long course of antibiotics. At that time, Suzette was training for a 28-mile race to raise money for children with cancer and it put her own health issues into perspective. She felt strong from her training and she used that strength to bravely research her options and make decisions. She found our BE CLEAR community and learned about the importance of airway clearance and she now uses an Aerobika and nebulizes daily. Suzette switched to a doctor who specializes in bronchiectasis and NTM lung diseases and they are hoping that airway clearance and running will be enough to keep her well. She says, “It is so empowering to manage my health! I continue to run, take gym classes, hike, spend time with my five grandchildren outdoors, work full time, and now pickleball!” Thank you, Suzette, for being an inspirational light in our BE community. #bronchiectasis #coughing #Aerobika #nebulizer GOOD NEWS!!! We have been asking for bronchiectasis treatments that are not antibiotics, and we have been heard! Dr. Charles Daley is a well-respected expert from National Jewish Health in Denver. He was a keynote speaker at the World Bronchiectasis Conference and gave the closing remarks. Dr. Daley is also the principal investigator of a study evaluating ARINA-1, a nebulized solution manufactured by Renovion that has been shown to prevent mucus from clogging our airways. Clogged airways cause inflammation and infection, a cycle we try to break with daily airway clearance and, often, antibiotics. ARINA-1 is a sterile formulation that is manufactured under strict guidelines. The solution includes glutathione, ascorbic acid, and a buffer to modify the pH. The trial will measure ARINA-1’s impact on quality of life, mucus viscosity, and inflammation. Researchers are looking for 25 more participants for the 28-day study. Participants need to be diagnosed with non-CF bronchiectasis and have mucus. In addition to National Jewish in Denver, trial sites are located in Baltimore; Philadelphia; Birmingham, AL; Washington, DC; New Orleans; Tyler, TX; Winston-Salem, NC; Portland, OR; and Charleston, SC. If you live in or around one of these areas and are interested in the trial, please contact me. Click on the following link to clinicaltrials.gov for more information on the ARINA-1 trial. https://tinyurl.com/tsh6fjnr I am working with Renovion and researchers to share this opportunity, and I can help answer basic questions regarding:
If you have other questions about the trial, the drug or how to enroll, let me know and I can help you get an answer from the Chief Scientific Officer at Renovion who is a great resource. Most importantly, discuss this trial with your doctor. Dr. Daley implored us to get involved in bronchiectasis and NTM research. Let’s show him and the researchers working on our behalf that we are willing to participate whenever possible. #teambronchiectasis #bronchiectasis #ARINA-1 #clinicaltrials The lungs were thought to be sterile until about ten years ago. Now, through advanced technology, we know that the lungs have a complex and diverse array of microbes including bacteria, fungi and viruses.
At the World Bronchiectasis Conference earlier this month, Dr. Sanjay Chotirmall from Nanyang Technical University in Singapore and Leopoldo Segal from NYU Langone in New York presented their research on the lung microbiome. Dr. Segal's research focused on the microbiome as it relates to Non-tuberculous Mycobacteria infections (NTM). One of the most interesting aspects of their research is the potential for unlocking the secret to why some people with underlying conditions like bronchiectasis get infections while others do not. There is evidence pointing to the diversity of microbes in the lungs and the "cross-talk" they are engaged in with each other. Yes, that's right. The microbes actually communicate. And not only do they communicate within the lungs but they also cross-talk with the microbes in the gut. As we move toward a better understanding of microbial diversity it is hoped that the research will help to identify harmful pathogens and concerning biomarkers that can be targeted for treatment. In other words, it would be another step towards personal medicine. Who knows? There might come a time when in addition to dropping off a sputum sample at the lab, we will also bring a stool sample. Could it be that we will also have home aids such as a diagnostic toothbrush and toilet that will alert us to important changes? With continued research in the field, the future seems bright. If you are interested in learning more about this topic, two years ago, the non-profit NTM Info and Research invited Dr. Segal and his associate, Dr. Benjamin Wu to do a patient webinar on the lung microbiome. https://youtu.be/JsOdm285-Uo #bronchiectasis #lungmicrobiome #maclungdisease #lunghealth #respiratoryconditions #chroniclunghealth #mucusclearance #coughmanagement Our mouth harbors over 700 types of bacteria with varying effects on our health. Some of these microorganisms are beneficial, some harmful, and others have benefits or harms yet unknown. Infections such as bronchitis and pneumonia can occur when harmful bacteria from the mouth enter the lungs.
With recent research, the importance of good oral hygiene for hospitalized patients is gaining attention. Last year, during a visit to San Francisco, I had lunch with Dina Gripenstraw, a registered nurse and lymphatic massage therapist with whom I connected on Instagram. Dina has an aura of empathy and wisdom, and our conversation largely revolved around the role of the lymphatic system in immunity. However, she also shared that years ago, while working as a bedside nurse, she observed that good oral hygiene helped prevent pneumonia.Unfortunately, perhaps because Dina was “just a nurse”, her research did not receive the recognition it deserved. Sometimes, simple solutions are overlooked, despite their effectiveness. Nurse Dina, we applaud your attentive patient care and your keen sense of observation. You were just ahead of your time. To read about Hospital-Acquired Pneumonia go to https://www.nbcnews.com/.../hospital-acquired-pneumonia... #brushthoseteeth #hospitalacquiredpneumonia #oralhygiene #dentalcare #lunghealth #bronchiectasis I live in a one-bedroom New York City apartment. Most of the time we leave our windows open because we enjoy a breeze and the muffled sounds of the city.
Come springtime, I have upholstery cleaners come in to shampoo our sofas and dining room chairs. However, during the pandemic, I canceled this annual ritual. I recently had them back, and as they like to do, at the end of cleaning they showed me all the dirt they extracted from our furniture. Even though I know it’s a bit of a marketing tactic, it always amazes me. I understand that some of you are hesitant to expose yourself to the chemicals that might be used or the smells of wet upholstery. I get that! So, perhaps call around to see if you can find a cleaner who uses good old fashion soap and water. There is research that shows that mycobacteria avium intracelluare (MAI) thrives in house dust. Clearly, none of us can completely eliminate all dust in our homes. But we can take simple measures to keep our living spaces as clean and dust-free as possible. Remember to always wear a mask when vacuuming and dusting. Also, try your best to eliminate carpeting, drapery, and other dust collectors whenever possible. #Bronchiectasis #NTMLungDisease #MACLungDisease #MAILungDisease #MycobacteriaAviumIntracelluare As a personal trainer, I have always enjoyed lifting weights. Now, with bronchiectasis and a history of MAC, I have an extra reason to stay strong.
I am at the gym most days and enjoy writing my social media posts and working with clients in between 30 minute workout sessions. Sometimes, I just do one session and other times a second one or an additional half-session. Before heading to the gym I have peanut butter on toast, greek yogurt and/or eggs. Maybe a banana or berries. And, my “must-have” coffee. Then after my workout I eat again, being sure to have more protein and carbohydrates. This is the only way I am able to have the energy to work out and the ability to add muscle. Lately, I have been separating my upper and lower body workouts, but there isn’t a “one way only” approach. I pay attention to my chest and neck muscles so that they are strong for airway clearance. I also stretch them to prevent neck pain and tightness. As I discuss in my book, “The BE CLEAR Method to Living with Bronchiectasis,” it is also critical to strengthen and stretch our back muscles because of our tendency to round forward during coughing and while using lung clearance devices. Taking this “front and back” approach is what is going to strengthen our body in a functional and holistic way. It will help our posture, our breathing, and our overall body strength and endurance. It can also create confidence. Start slowly. The exercises in my book are perfect for beginners. They also work well for more experienced exercisers who are looking to identify imbalances and create full-body fitness. Remember to always nourish your body before and after your workout. Otherwise you will not be able to achieve maximal results. Those of us with GERD will want to wait a bit before exercising. Additionally, as we discussed in a previous post, it is a good idea to eat a carb to absorb stomach fluid and minimize reflux. Before you modify, start or stop any exercise program, you should get medical clearance from your physician. Book on Amazon ️️️️️ https://amzn.to/3LdoH8Y #personaltrainer #exercise #fitness #bronchiectasis #maclungdisease #LungDisease |
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
April 2024
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