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.
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.
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#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!”
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.
Clearance of Airways
Eating and Drinking
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 .
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
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.
#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--
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
Linda 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.