 I have a soft spot for young people diagnosed with bronchiectasis. My inner Mama throws on her cape and swoops in for the rescue.
This post was written by our bronchi-brother, Emmet, 33 years old, from Ireland. Emmet and I spoke on the phone over a year ago. I knew that we would always stay in touch when he asked if his mother could be on our call. I thought it was so kind of him to include her and I vowed to myself to keep an eye on him. In Emmet’s words: “My symptoms started when I was about 29 and I was misdiagnosed with asthma. Then, after a CT scan, I was properly diagnosed with bronchiectasis. After my diagnosis, I won’t lie, I was terrified, and I still get days when my anxiety about having bronchiectasis for life gets bad. But I try to exercise my way out of the negative thoughts which works pretty well for me. I was so lucky to have found Linda through Instagram and her positive posts relating to living with bronchiectasis gave me some hope. I reached out to her and she was beyond helpful. We had a phone call and she was so reassuring and informative it was literally a breath of fresh air for me. She has given me information and made suggestions that to this day, I believe I still wouldn’t have been told by my doctors. My self-care usually starts with airway clearance at work in my van. I do long routes every day that allow me to get at least an hour of my Aerobika done in the mornings. I think the vibrations in the van also help. Then when I get home around midday I usually go for a long run or I hit the boxing bag and do a light weight workout. I also play football (soccer for those in the US:)) on Sundays for a local team. I have a partner and two daughters. We live near the Shannon River estuary, close to where the river meets the Atlantic and enjoy taking walks with our dog, Rocky. I have been in contact with some Irish people who also have bronchiectasis. It’s been good to compare the care we are getting across different parts of the country. All in all, bronchiectasis is something I wish I didn’t have, but it is what it is, and it could be worse. I feel lucky to have a great network of family and friends supporting me.” Thank you Emmet for sharing your story! If you are young and have bronchiectasis, a strong medical team and committed self-care, can make a significant difference. #bronchiectasis #airwayclearance #exercise
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 Being a person who loves to learn, I am lucky to have a pulmonologist who is a natural teacher. Whenever I visit her office, I make sure to bring a short list of questions for her.
This time, my visit coincided with a Drs. Chalmers and Blasi’s bronchiectasis webinar I was listening to on my phone. I missed some of it because I was being processed and prepped for my lung CT scan, but I came away with another question for my doctor– this one about Pseudomonas. It seems like almost every talk on bronchiectasis lately includes the role of Pseudomonas. The more I listen, the more I hear a consensus that this bug should be cleared ASAP. Similar to NTM bacteria, Pseudomonas bacteria clump together in a biofilm, making it difficult to eradicate. On top of that, it can be antibiotic resistant. I asked my doctor what her approach would be were I to grow Pseudomonas in my sputum. Would I need to submit another culture before treatment? “No,” she said, “We would treat it right away.” This was eye-opening as Dr Blasi mentioned that sometimes we can grow this bug without symptoms of infection such as increased cough, more mucus and a change in mucus color. So, although some of us only see our pulmonologist once a year, there might be good reason to be proactive and submit sputum samples more regularly. Discuss this with your medical team and come up with a plan. It will be important to have a standing order at a lab so you can submit your sample without needing to contact your doctor. This process might vary depending on your health plan and your lab. Educate yourself. Talk to your medical team. Make a plan. Stay healthy. Live well with bronchiectasis. #bronchiectasis #pseudomonas #mucus #sputum  In my recently published book, The BE CLEAR Method to Living with Bronchiectasis, the letter “C” in the BE CLEAR acronym stands for Clearance of Airways. Before I started clearing my airways, I never coughed up anything. But, then, I started using an Aerobika as well as experimenting with other methods and now I am able to remove mucus from my lungs almost every day. It didn’t happen right away. First, I needed to get to know my body and figure out what was most effective because we’re all different and airway clearance is as much an art as a science. Are you wondering why we need to set aside time for airway clearance every day, sometimes twice a day? Because those of us with BE have scarred lungs, and mucus can accumulate in those challenged areas. Then, bacteria, viruses and fungi can feed on the mucus and grow. Airway clearance is our way of preventing this from happening. We are in essence, power-washing our damaged airways with a potent mix of forced air, vibration and sometimes saline solution, making it so unpleasant for pathogens they have no choice but to leave. The best part is, once the infection is gone, daily use of an Aerobika and other methods of airway clearance will continue to create an inhospitable environment. It’s a permanent “no trespassing” sign that will help decrease inflammation and infection in our lungs and allow for healing. #lunghealth #bronchiectasis #mucus  Bronchiectasis, or BE, cannot be cured. The disease causes the lungs to scar and can happen to anyone after a respiratory illness or with conditions such as Chronic Obstructive Pulmonary Disease (COPD) and Cystic Fibrosis. With the pandemic, we will likely see a sharp increase in the number of individuals with bronchiectasis. Until recently, bronchiectasis was considered a rare disease with less than 200,000 cases in the United States. However, with the increased use of High-Resolution Computerized Technology (HRCT) scans as well as a heightened awareness in the medical community, bronchiectasis is being diagnosed more than ever. Researchers now suggest that a significant percentage of the 20 million COPD sufferers in our country also have undiagnosed BE. Although BE is a permanent condition, it can be effectively managed and its spread mitigated or even prevented. Based upon my personal experience with bronchiectasis and professional experience as a health and fitness educator, I have developed the BE CLEAR Method. Together with traditional medical treatments of the disease, the BE CLEAR Method empowers individuals living with BE to be actively involved in their own care. The overarching goal of the method is to sustain healthy lungs while building a stronger body and mind to meet the daily and life-long challenges of our disease. Through dedicated practice, the BE CLEAR Method becomes not just a road map but a travel companion for those living with bronchiectasis. The two key elements of the BE CLEAR Method are exercise and airway clearance both of which help remove harmful mucus from the lungs. The method also employs a broader approach including effective breathing and meditation practices to deal with the anxiety and depression that is common among people with chronic health conditions. In addition, better relaxation and sleeping habits are discussed as well as the importance of a nutritious diet to maintain a sound body and mind. Mystery surrounds bronchiectasis. Many of the afflicted do not know how they got it. Those I have talked to in support groups on-line and in-person want clarity. Most of all, they want to feel better. As someone who shares in their struggle, as someone who lives with BE every day, it breaks my heart to hear their stories. That’s why I wrote The BE CLEAR Method to Living with Bronchiectasis. I want to share with others the practices I have used for years to stay full of energy and positive-minded. I encourage people with BE to stay on task and do the daily work. At the same time, I point out that we are all at different points along the health continuum and we need to move forward from our unique place. In BE CLEAR, I weave current evidence-based research into my own story with humorous anecdotes that they will recognize and appreciate. Ultimately, my goal in writing this book is to show people living with BE that they have more control over their disease than they think. With the regular application of the BE CLEAR Method, they can lead a full and joyful life. The “BE CLEAR Method to Living with Bronchiectasis” is available on Amazon. https://amzn.to/3maqeAB #bronchiectasis #airwayclearance #lungdisease #maclungdisease  About 25% of people with bronchiectasis will at some point develop a Pseudomonas aeruginosa infection. The older we are, the more widespread our bronchiectasis and the poorer our lung function, the more likely we are to get this type of infection.
During the recent European Lung Foundation Bronchiectasis Patient Conference 2022, Dr Josje Altenburg from Amsterdam discussed whether this infection should be treated. She asked—”Is the Pseudomonas a threat or a pet?” Have a listen-- https://www.youtube.com/watch?v=_bNlHxTIY14 It is important to understand the issues Dr Altenburg presents in the event we repeatedly grow Pseudomonas in our sputum cultures. I found her talk about new therapies to eradicate Pseudomonas fascinating, especially the possible use of monoclonal antibodies and bacteriophages. Regular sputum cultures are critical for good health as sometimes there are no indications that Pseudomonas is causing an infection. However, particularly for those of us who have had these infections in the past, we might notice health changes such as fatigue, coughing and more sputum production. Additionally, for some, our sputum might turn greenish and have a strong odor. A key to living with bronchiectasis is understanding the nature and management of the disease and the pros and cons of treatments. Being acquainted with the issues puts us in the driver’s seat. In the future, if we are presented with challenges, we can further educate ourselves and along with our medical team, make well-informed decisions. #pseudomonas #lungdisease #bronchiectasis #airwayclearance #sputum #mucus #phelgm #lunginfection #lunginflammation  Aches and pains? Posture not the best? Coughing and short of breath? The answer might just be...a fanny pack!!
Carrying a bag, even a cross-body one, can throw off your gait, body mechanics and the ability of your rib cage to expand. It’s important to be evenly weighted, unencumbered and allow your arms to swing freely. Walking this way is how the body reorganizes and naturally releases tight muscles. So, think twice before carrying a bag of any type in one hand or on one shoulder for a length of time. And, yes, a fanny pack might be part of the solution. Every now and then, switch it to the other hip or better yet, center it! #Lung #LungHealth #Breathing #Breathe #Bronchiectasis #COPD #Asthma #Emphysema #ChronicBronchitis #posture #chroniccough  In 2017, after I was diagnosed with bronchiectasis and a MAC lung infection, I spent months walking around in my Upper Westside neighborhood in a daze. At the time, I was seeing a pulmonologist who hadn’t explained anything to me in detail. To make matters worse, it seemed like the more I researched these two rare conditions online, the more questions I had.
Fortunately, my emotional brain fog did not prevent me from seeking answers from other professionals. The first breakthrough I had was meeting with Marion Mackles, a cardiopulmonary expert at the Pulmonary Rehabilitation and Wellness Center. She patiently answered my questions and taught me airway clearance techniques. I liked the friendly vibe at the center and over time I followed up by watching many of the Pulmonary Wellness seminars that were offered at no charge (and still are!). One of my favorites was Dr. Noah Greenspan, owner of the center, interviewing Donna Wilson, a Registered Respiratory Therapist, nurse and clinical exercise specialist. After listening, I knew I needed to see her for a consultation. At the time Ms. Wilson was working in the Integrative Health department at Memorial Sloan Kettering. We met and went over my CT scan report and health issues. She answered questions and together we did exercises that target the breathing muscles, including strengthening the diaphragm, which plays a large role in respiration. I have continued to do her exercises over the years and thought she had retired. So, I was so pleased to see a Pulmonary Wellness social media post at the beginning of this year saying that she would again be a guest speaker. Now, the recording is available! https://vimeo.com/710460803 I promise you, it will make you reconsider how you breathe and the critical role of exercise! As always, consult your medical team before beginning, modifying or stopping exercise. Oh, did I mention you will never see another woman in her 70’s with such incredible arm muscles? #pulmonarywellness #bronchiectasis #copd #asthma #breathing #oxygen #exercise #healthylungs  Steroids and Inhaled Corticosteroids (ICS) can cause osteoporosis and increase the risk of infections. Some of us with bronchiectasis take steroids and ICSs because of other medical conditions. In addition to BE we might have comorbidities such as rheumatoid arthritis, asthma, COPD and inflammatory bowel disease (IBS).
Others take inhaled corticosteroids because they have had their sputum or blood tested, they know their bronchiectasis is an eosinophilic disorder and using an inhaler makes a difference. In a wonderful 2021 patient bronchiectasis conference sponsored by the European Lung Foundation and the European Respiratory Society, Dr. James Chalmers discusses the difference between neutrophilic and eosinophilic inflammation. Dr. Chalmers says that research shows that in 80% of bronchiectasis patients, their condition is neutrophilic and ICS use will not improve their health status. However, in 20% of cases, their inflammation is also eosinophilic and steroids might make a difference. Drs. Swenson and Drummond also discuss steroid inhalers in their podcast series NTMTALK.com. Dr.Swenson says that many of us are needlessly on inhalers. Sometimes they are prescribed because of a flare-up. Or, if the person is already on steroids, the dosage is increased. Unfortunately, many remain on high doses even after the flare-up is resolved. My suggestion is that you discuss this issue with your physician and have tests done to determine if ICS use is warranted.Do not take it upon yourself to stop your medication as this could have serious consequences. I have always said, both in my book, “The BE CLEAR Method to Living with Bronchiectasis” and in my social media posts, it is all about EDUCATION. The better we understand our medical condition(s), the better we can ADVOCATE for our care. #bronchiectasis #IBD #RA #osteoporosis #COPD #asthma #celiac #inflammation #lupus  Great news!! A fantastic Autogenic Drainage (AD) app that was only available on iPhones is now on Androids! I use this app regularly as part of my daily (often twice a day) clearance and love it.
Sometimes I use it before nebulizing as it helps me to switch gears from working and being on the computer to my self-care. It tells my body to focus on my own care and hopefully let go of mucus. Other times I use the AD app during my airway clearance session– when I’ve used all the tools in my bronchiectasis toolkit including my vest, nebulizing, my Aerobika and postural drainage and that stubborn mucus still doesn’t want to come out. Then there are times I use this breathing technique before and during my session because it only takes 2 minutes–so what not? As I discuss in my recently published book, “The BE CLEAR Method to Living with Bronchiectasis,” it is critical to know airway clearance techniques that do not rely on devices. Because there will be times when you do not have a device with you and start to feel congested. Using “unplugged” methods including breathing techniques and postural drainage will help you feel better. I would suggest you get my book, too! It will give you a map to improving your bronchiectasis self-care and I am always available to answer your questions either by email or social media. Available on Amazon--https://amzn.to/333htls #bronchiectasis #copd #primaryciliarydyskinesia #cysticfibrosis #asthma  Chronic lung disease can present intimacy challenges. Concerns about shortness of breath, fatigue, coughing and excess mucus can cause people to shy away from intimate relationships.
To learn how we can address these issues, take a look at this excellent COPD Foundation post by Amanda Atkinson, MSN, RN: https://bit.ly/3y7hkL0 #Intimacy #COPD #oxygenuse #usingoxygen #shortofbreath #breathlessness #emphysema #chronicbronchitis #Bronchiectasis #ChronicCoughing |
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
June 2022
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