 🇺🇸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
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 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  For the first two years after my bronchiectasis and NTM diagnosis, I used a lightweight compressor with tubing and a nebulizing cup. Nebulizing cups are frequently called nebulizers and this creates confusion. So if you see that the manufacturer is suggesting you replace the nebulizer every 6 months, they are most probably talking about the cup as most compressors have warranties for a longer period of time.
A couple of years ago, I upgraded my compressor and cups to an Ombra system, manufactured by Monaghan and Trudell International. I decided on this more powerful system because it is what National Jewish Health (NJH) recommends to their patients. NJH is a top US lung hospital and although I have not been there for my care, I follow many of their recommendations. One of the perks of being a BE consultant is I hear what my clients who go to NJH are instructed to do. To date, all of them have been told to use an Aerobika attached to an Aeroelipse XL reusable cup and an Ombra compressor. Patients are also advised to change out the tubing periodically (I’ve heard varying instructions from every 2 months to every 2 weeks) and to maintain the performance of the device by changing the filter every 6 months. Pari and Philips also have good nebulizers and compressors. Each system combination has a unique medication delivery system. Substituting one nebulizer cup for another can result in differences in the delivery of medication. #nebulizer #nebuliser #nebulizing #nebulising #airwayclearance #parinebulizer #philipsnebulizer #monaghanmedical #trudellmedical #aerobika #nationaljewishheatlh #bronchiectasis #copd #asthma #Philips #PARI Dr. Edward Chan discusses Airway Clearance and a lot more! Dr. Edward Chan is a pulmonologist and researcher on the National Jewish Health faculty. He is also an Air Force veteran and works at the Rocky Mountain Veterans Hospital in Aurora, Colorado. When asked in an interview what his key to success is, he said “being mindful, having perseverance, and above all, being kind to all.”
I would add “generosity with one’s time and encouraging and helping others.” When my book, “The BE CLEAR Method to Living with Bronchiectasis,” was published in 2021, I sent copies to over a hundred physicians. Dr. Chan made a point of emailing me about my book and asking if he could reference it in a paper he was writing https://bit.ly/3IUNbUi. He also offered to distribute my informational postcards in the waiting areas of NJH. Dr. Chan going above and beyond was not surprising to me. I had listened to his presentation to our Palm Springs support group (administered by the non-profit Bronchiectasis/NTM Info and Research) which lasted close to an hour and a half! His talk was accompanied by a detailed slide deck and he patiently answered all our questions. To listen to his talk click here https://bit.ly/3ECCao8. This talk is comprehensive and if you want to focus on airway clearance (Dr. Chan actually demonstrates techniques!!) go to the twenty-nine-minute mark. Dr. Chan leaves no stone unturned in this thorough discussion. Don’t be thrown off by the focus on Nontuberculous Mycobacteria (NTM) infections. When it comes to airway clearance, whether you have bronchiectasis or pulmonary NTM, the techniques for removing hypersecretions are the same. Some of the highlights are: ️*Breathing techniques ️*PEP devices ️*OPEP devices ️*Using hypertonic saline ️*Sterilizing airway clearance equipment Thank you Dr. Chan for helping to educate us about living with Bronchiectasis and NTM lung disease!! #nationaljewishhealth #airwayclearance #beclearmethod #lindaespositomph #bronchiectasis #ntm  As a freshman in high school, I could pole vault over nine feet and was on a competitive softball team. I was tough. I was kind. I loved God, my family, and my friends. I was a farm girl who worked hard and enjoyed feeling the refreshing breeze afterward.
Then I was in an accident that caused my life to change forever. I was air-lifted from a field to a hospital. A week later, I woke up confused, in pain and on a ventilator. The next thing I remember was my doctors telling me my upper right lung lobe had to be removed. Once back home, I constantly feared getting hurt and having my lung collapse. I would stay on the river bank while my friends would swing from a rope into the water. It was a bleak time for me and I was anxious and depressed. Scar tissue from the operation caused persistent chest pain but I tried my best to lead a normal life. My high school boyfriend and I married and we had a baby in hopes of better days ahead. But, instead, my chest pain continued and I became short of breath. Respiratory infections with never-ending coughing and mucus made me constantly tired. My doctor prescribed oral and nebulized antibiotics and I felt defeated. That is when I came across Linda Esposito’s book, “The BE CLEAR Method to Living with Bronchiectasis.” How could this woman be so positive about her diagnosis? I wanted that! So, I found the courage I had in my youth and took control of my health with exercise, yoga and airway clearance. I also traveled to a neighboring state for a second medical opinion. Now, with fewer infections, I work as a third-grade school teacher and track coach. Over the past year, my husband, son and I have shared fun and memorable times together. I look forward to many more. A huge thank you to Linda and everyone in the bronchiectasis community for sharing your stories and for reminding me that I am not alone on this journey. Please know, no matter your situation, you, too, can take small steps toward a healthier life. Interested in underwriting the BE-America series? Contact Linda Esposito, MPH to discuss details. Let’s work together to show people living with bronchiectasis we support them!! #bronchiectasis #pseudomonas #lungdisease #lungsurgery  Jon, from Colorado, kicks off our BE-America series!! We will be featuring a person with bronchiectasis from every state!
You might have heard the expression, “if you don’t like the view, change your perspective.” Jon Bernhard did just that when he summited a 20,000-foot volcanic peak in Mexico. Jon was a competitive cyclist who won many races. Then, 35 years ago, he found himself becoming easily winded. After many doctors could not figure out why his health was declining, Jon ended up at National Jewish Health. It was there that he was diagnosed with bronchiectasis and NTM lung disease. Based on the advice of his doctors who said bicycle racing was too strenuous, Jon switched to rock climbing. For Jon, rock and ice climbing (@jonclimbs1 on Instagram) are about adventure and interacting with nature. His love of the outdoors was cultivated by his mother who every summer took her sons on road trips to see America and visit the national parks. In light of his diagnosis, Jon pursued an adventurous path by traveling the globe and discovering ways to remain active. Jon can be found with his “tribe of climbing colleagues” on rock or icy cliffs in Yosemite National Park, remote Alaskan peaks and many other places off the beaten path. Two years ago, Jon had his lower left lobe removed from his lung and now has 50-60% lung function. He finds that climbing and cycling help to clear his lungs and maintain his stable health. National Jewish Health featured Jon in a video. https://bit.ly/3UF4TOr He believes each patient should be treated in a way that activates and unlocks their hidden potential. “I climb …to prove that we only need to adjust our vision.” Jon is now training to climb El Capitan in a 24 hour push and has his eye set on Mt. Kilimanjaro. Do you like this post? Message me about underwriting opportunities! #BEAmerica #bronchiectasis #NTMLungDisease #MACLungDisease |
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
August 2023
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