 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
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 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  Romina’s rooftop Pilates classes and cooking videos caught my attention on Instagram. She is clearly a woman with an eye for detail whether flawlessly moving through a Pilates routine or baking tasty treats for her family.
Read her story and check out her Instagram page. I am sure you will feel the same way. “Four years ago, my husband, two young children and I relocated from Buenos Aires to Dubai. I am an accountant but decided that raising my children in a new country and working full-time would be too stressful. Instead, I became a Pilates instructor so I could have a career doing something I love and a flexible schedule for my family. Most importantly, I need time to take care of my health. I was diagnosed with bronchiectasis when I was 23 years old and now have 50% lung function. Pilates is incredibly helpful in keeping my body strong and in clearing my airways. The movement and calming nature of Pilates have been critical to my good health. I also enjoy cooking nutritious meals and desserts. I frequently post my creations on Instagram at @rominascazzuso so that others can see that simple lifestyle changes can make a big difference to one’s well-being. My holistic approach to managing bronchiectasis has been effective. I went from annual hospitalizations to only being hospitalized once in eight years. However, Dubai does present challenges. There is a lot of dust in the air and the temperatures are extreme. Knowing how important it is for me to walk, I started a walking club at a mall. We walk for 40 minutes and then go to a coffee shop to socialize. I am fortunate to have a supportive husband who steps in to encourage me whenever necessary. There is so much I want to do and see with my family while living in this exotic country and culture. Daily movement, stress reduction and healthy cooking are what allow me to enjoy life. I look forward to seeing what the future holds!” #bronchiectasis #pilates  Fall time is a glorious time of year in New England. People take to the roads for weekend drives to ooooh and aaaah over the changing leaves. It is also a perfect time to review how to prevent a fall that could sideline your exercise and airway clearance. Many of us with bronchiectasis also have osteoporosis because of age, body type and steroid use. The Bone Health and Osteoporosis Foundation characterizes osteoporosis as bone disease that occurs when “the body loses too much bone, makes too little bone, or both. As a result, bones become weak and may break from a fall or, in serious cases, from sneezing or minor bumps.” If you haven’t already, speak with your doctor about having a Bone Mineral Density Test. If you have osteoporosis or are on your way to developing the condition, there are steps you can take to slow progression or even prevent it. Most importantly is to “do no harm.” What do I mean by this? Firstly, prevent falls that can cause breaks. The best way to achieve this is by improving your strength, balance and flexibility. In my book, “The BE CLEAR Method to Living with Bronchiectasis,” I give 10 exercises that take this holistic approach. As a certified personal trainer and yoga instructor, I created the Bronchi-X-ercise Program that over time, can help you prevent falls. Secondly, take a look around your home and remove items that you might trip on such as scatter rugs and extension cords. Also installing nightlights to light your way to nighttime visits to the kitchen and bathroom is a good idea. Thirdly, exercise safely by eliminating exercise that include rounding your spine (abdominal crunches and many Pilates movements) and deep twisting (yoga spinal twists). So, have fun on your fall-time drives and walks. Being aware of wet leaves and slippery sidewalks when out in nature doesn’t mean you need to avoid the outdoors. It means being pro-active by building a stronger and more agile body. #bronchiectasis #copd #spine #spinehealth #osteoporosis  In my book, “The BE CLEAR Method to Living with Bronchiectasis,” I discuss 7 self-care areas that can potentially help manage our bronchiectasis.
They are: Breathing practices Exercise Clearance of Airways Laughter Eating and Drinking Alternative Care Relaxation, Rest and Sleep The first letter of each of these 7 self-care steps creates the acronym “BE CLEAR” - a practical and achievable approach to better health. Creating new habits is a topic that greatly interests me. Recently, I listened to an audiobook written by James Clear called, “Atomic Habits.” In his book, Clear uses the story of Sir David Brailsford who was a cycling coach for the British team. Before Brailsford took over coaching the team, they were not winning competitions. He improved their chances by reviewing everything that impacted their performance including bike maintenance, clothing, exercise, diet and sleep. He then made small changes in all of these areas. This holistic approach worked and Brailsford and his team went on to win multiple Tour de France races. This is a similar concept to the BE CLEAR Method. The biggest difference is we are not trying to win a race. We are looking to be our healthiest with a chronic condition. And we have time. Not all 7 steps need to be mastered immediately–there is no competition. We can choose an area that interests us and go with it for a while by trying to create new habits that support us. Then, in time, we can address other areas that could use improvement. Before we know it, we will have a strong self-care program and, hopefully, slow our lung disease progression. This system has worked for me. Over twelve months I have had three sputum tests and all showed no sign of the MAC infection I had during the previous four years. I’m not saying that I am “cured” because as we know, some of these lung bacteria do not want to leave us alone. But I am happy with how I feel and that I am headed in the right direction with managing my bronchiectasis. Do you think the BE CLEAR Method might help you create a roadmap to better health? What new habit would you start with? “The BE CLEAR Method to Living with Bronchiectasis” is available on Amazon . #bronchiectasis #COPD #healthyhabits #MACinfections #NTMinfections  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 |
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
May 2023
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