Do you ever feel like you’re walking a tightrope with your health? Doing airway clearance, exercising and cooking healthy meals to keep your body strong and at the same time trying to balance all this effort with restorative rest? Sometimes it’s a challenge for me to find a happy medium. What about you? Do you feel the same way?
To help myself feel centered, every day I spend 20 minutes or so practicing a self-care therapy called Jin Shin Jyutsu (Jin Shin for short). Jin Shin is an ancient Japanese healing method that was passed down from generation to generation until it was lost to obscurity. In the early 1900’s, Juro Murai, a Japanese man with a life-threatening illness, in his quest to heal himself, rediscovered Jin Shin in the sacred Kojiki texts, the oldest books of Japanese history and culture. This practice was then brought to the United States in the 1950’s.
Similar to reflexology, Jin Shin is about using one’s hands to open up energy pathways. I have come to rely on it as an important part of my daily self-care practice. Especially now with the pandemic, it is helpful to be able to do my own energy work and not be dependent on visits to a practitioner to feel my best.
In Alexis Brink’s latest book, Healing At Your Fingertips, she says, “Though the Art of Jin Shin bears some similarities to acupuncture, the practice achieves its transformative results without needles, using only a gentle touch—a methodology that translates very nicely to self-care. All you need to get started are your hands and a little bit of time and patience." She goes on to say, "to some degree you will succeed in moving stagnant energy and restoring harmony right from the get-go, and that’s part of the beauty of the Art of Jin Shin.”
Now that I have been practicing Jin Shin for a couple of years, I couldn’t imagine my life without it. If you are interested in learning more about Jin Shin, visit the Jin Shin Institute website and check out Brink’s books The Art of Jin Shin and Healing At Your Fingertips.
Once you are practicing, especially the holds relating to chest congestion, chronic cough and breathing, I know that you will also find Jin Shin to be essential to your well-being.
#bronchiectasis #jinshinjyutsu @jinshininstitute #lunghealth
Exercise, whenever possible, needs to be done every day as part of our airway clearance regimen. If we were exercising strictly for strength or cardiovascular improvement, then a three-or-four-times a week schedule would be adequate. But we have the urgency of clearing our lungs to prevent further inflammation.
Whether you exercise before or after using an airway clearance device is your decision. Test out what works best for you. Before you exercise, try using your Aerobika or a similar airway clearance device to remove irritating mucus and reduce coughing. Or, start your day with a morning workout to bring mucus up higher in your lungs and then use your clearance device.
I will let you in on a little secret… sometimes I exercise while using my Aerobika! Back in the 80s there was a curly-haired art instructor on American television by the name of Bob Ross. He taught the ABCs of painting and would say things like, “go ahead, add a little tree to your landscape, it’s your world.” How you choose to combine exercise with using a clearance device is the same--it’s your world. Just know that doing them every day will make your world a better place.
Begin Where You Are, It’s Your World
For some, time constraints centering around family and work will make daily exercise challenging. For others, physical and medical considerations such as joint pain, heart issues and fatigue, might prevent you from feeling comfortable with exercise. And frankly, for many, it is not something you ever wanted to do and now with your bronchiectasis symptoms of coughing, mucus production, exhaustion and, in some cases, urinary incontinence, it is like asking you to climb Mount Everest.
In her book, “Start Where You Are”, Pema Chodron, a Buddhist nun, discusses the importance of starting any personal journey from where you are at the present point in time. This concept can also be applied to how we think about exercise. Regardless of where we stand on the continuum, whether we are experienced or new to exercise, we can move forward slowly and carefully from our own unique place.
Being closely monitored and individually instructed in a pulmonary rehabilitation center is a great place to start if you are not already a regular exerciser. Then, on days when you are not in rehab, you can follow an at-home program provided by the rehab center. An online pulmonary wellness program is also an option.
If you occasionally work out and are looking to increase the frequency and intensity of your exercise, then one-on-one sessions with a Personal Trainer, either at home or in a gym, can put you on the right path. Even doing a couple of supervised workouts with a trainer and getting a tailor-made program that you can do on your own is a great idea. Let your trainer know about your health conditions and check to see if the trainer is certified and experienced. As previously mentioned, many of us have other health and physical issues that may necessitate exercise adjustments. Whether you are exercising with a Personal Trainer or on your own, know what exercises to avoid or to modify — this guidance can only come from your health care team.
#bronchiectasis #airwayclearance #Aerobika #exercise
Regardless of whether we have a mild or a more advanced case of bronchiectasis, whether we are currently taking antibiotics or not, whether we have lots of energy or very little, self-care is critical. Self-care is not necessarily the easiest way to manage a disease, but it can be the most individualized, rewarding and hopefully, successful way of living with a chronic condition.
The word “bronchiectasis” is a combination of the Greek words “bronckos” meaning airway and “ektasis” meaning widening or dilation. The last part, the “ektasis”, is what makes it an irreversible disease as the tissue has lost its elasticity from inflammation and infection. Think of the stretched-out waistband of an old pair of pajama bottoms. No amount of laundering is going to shrink that band. The same is true of our lungs. However, self-care will make it easier to keep our overstretched passages from clogging with sticky mucus and organisms−bacteria, viruses and fungi− that destroy tissue.
Also crucial is adopting a healthy lifestyle to decrease overall inflammation. A commitment to healthy eating, exercise and rest will make a significant difference. You must take a committed approach because your body is smart. It knows the difference between a few toe-touches and a one hour stretch class at your gym. It knows the difference between shutting your eyes for five minutes and sitting down to your meditation practice fully present. It knows a quickie puff on the Aerobika versus a full-throttle attempt to get the mucus out.
I want to be absolutely clear on a critical point: I am NOT advocating blowing off traditional medicine. I am a firm believer in a healthcare team with traditional as well as alternative care providers. I also believe in taking advantage of every service your multi-disciplinary team of providers has to offer. I now have a care team that supports my healing and is available to answer questions as they arise. It took me some time and effort to get to this point including traveling to another state for a second opinion and switching to a new pulmonologist.
My new pulmonologist recommended that I see several other specialists who would look for possible causes of my disease. Over time, I added in some complementary medical practitioners to help me heal. In this way, I felt that we were working together and taking a holistic, individualized approach to my care. So, again, I urge those with BE to seek out the best medical care available in their community. If options are limited, and you have the resources, find a top national specialist to guide your local team.
#bronchiectasis #ntmlungdisease #selfcare #advocate #chronicillness
Michelle MacDonald, a clinical nutritionist at National Jewish Health, in a NTM Info & Research podcast series, presented on how food can impact bronchiectasis and NTM lung disease. Some suggestions are below (in a nutshell!). Recordings are available at NTMinfo.org.
• Eat with purpose and determination. Food is therapy to fight infection. You need the calories to strengthen the immune system and speed recovery.
• Eat high-calorie, high protein, nutrient-dense foods.
• Schedule your meals. Do not skip meals. Eat breakfast. Snack a couple of times a day.
• If MAC is draining you, then eating well helps you fight your infection. It can help you restore yourself.
• There is no single predictor of who will have disease progression, however, low body mass index (based on height and weight-BMI less than 18.5) is linked to a poorer outcome. We are not sure how sickness and being underweight are linked but, know that they are. Women like being on the thinner side. But MacDonald reminds women that they will be stronger if they are a normal weight or have a few extra pounds on them. Don’t diet if you are fighting infection and/or be sure your diet is carefully monitored.
• Dairy does not necessarily increase mucus production based on the studies. However, you need to evaluate how dairy impacts your congestion on an individual basis.
• Often loss of appetite is because of infection. Appetite loss might mean you need to eat more. Fever also increases metabolism and burns calories.
• Vitamin D deficiency (a 30-50 level is considered good at NJH) means your body is fighting infection and using up micronutrients. This lowers your immunity.
• Fat is more caloric and very healthy. Even if you have a history of heart disease. It can be a concentrated way to get the calories and nutrition you need.
• Add and/or concentrate calories in each meal. Increase 250-500 calories per day. This way you will gain about a pound a week. You may need up to 2500 daily calories to reach this goal.
• There is a higher need for protein with an active infection. MacDonald recommends a 4 ounce portion chicken, fish or meat. Size-wise it is bigger than a deck of cards. Some data shows that 30 grams of protein at each meal may increase muscle mass.
• Sugar/desserts okay but should not be a substitute for more nutritious eating.
• Take a multi-vitamin, iron-free. Some concern, that supplements with iron might promote growth of bugs. This is especially true if you are post-menopausal. Choose a 3rd party certified supplement (these companies audit supplements to see if they are high quality). Avoid megadoses of minerals and vitamins. Data shows that they could be more harmful that helpful.
• Food supplements can be a good idea. Especially if you eat mainly vegan or vegetarian.
• Reflux is correlated with NTM and bronchiectasis Reflux precautions:
•Sleep on left side
• Elevate head of bed 30-40 degrees
• Do not eat within 3 hours of sleeping
• Know what your triggers are and avoid or minimize
• Eat small frequent meals
You are in charge!!!
#bronchiectasis #ntmlungdisease #maclunginfection #nutrition
The bacteriophage, also known as phage, is a virus that kills bacteria. There are more phages than any other organism on earth and they are easily found and retrieved from ponds, lakes and the ocean. It is hard to believe but 40% of the bacteria in the ocean is killed by phages every day!
The phage looks like a microscopic land rover sent to explore another planet. Its twenty-sided head sits on a tail that has leg-like fibers attached to it. Each phage has the genetic makeup to destroy a specific bacteria. It uses its tail to puncture the host and inject its own genetic material into it, thereby turning the bacteria into a phage factory. When the bacteria is full, the phage manufactures a substance called endomycin to punch a hole in its host and release the newly made phages.
Phages were identified by English bacteriologist Fredrick Twort in 1915 and French Canadian scientist Felix D’Herelle in 1917. D’Herelle realized that they could be used as antibacterial agents and over the years advanced his research by opening phage therapy centers throughout Eastern Europe. However, with the discovery of the miracle drug—penicillin-- by English scientist Alexander Fleming in 1928, interest in phage therapy decreased, especially in the West.
Now, one hundred years later, the tide is turning and there is renewed interest in bacteriophage therapy. This interest is mainly due to the mutation of bacteria and fungi and the creation of Antibiotic Drug Resistant (ADR) superbugs caused by the overuse of antibiotics. According to the Center for Disease Control, close to three million people a year in the United States get ADR infections and 35,000 die from them. Unfortunately, the need for new antibiotics is not being met by the pharmaceutical industry. A recent report by a roundtable of experts stated that “if no immediate action is taken, the estimated death toll due to antimicrobial resistance will reach the millions by the year 2050”. (1)
I first learned about phage research and therapy when I attended a NTM and bronchiectasis patient symposium a couple of years ago at Yale University in New Haven, Connecticut. Subsequently, I heard phage therapy brought up at a New York University Bronchiectasis and Non-Tuberculous Mycobacteria Symposium and more recently, last month at the 4th World Bronchiectasis Conference.
Nonetheless, what really piqued my curiosity was an online support group post by Daniel, a young Canadian man who had Pseudomonas Aeruginosa (PA). Daniel was experiencing chest pain and struggling with shortness of breath and lung congestion. Even though he was taking an antibiotic, his symptoms persisted. His father, after seeing a documentary on phage therapy, suggested to Daniel that it might be an option. After research, Daniel chose the Eliava Institute Phage Therapy Center in Tbilisi, Georgia for his care. He sent them a sputum sample and they created a phage cocktail specifically for him. Over a two-month period, with two breaks from treatment, he drank his phage solution and nebulized it.
This month I checked in with Daniel to see how he was feeling. With his treatment practically completed, he told me that his condition had improved quite a bit since beginning the phage therapy. Before the therapy he did not have the energy to exercise much and now he was able to use his elliptical exercise machine for 20 minutes a day. He was also happy to share with me that his latest sputum analysis did not show any Pseudomonas.
More and more academic institutions and businesses are creating phage libraries and synthetic phages in the United States as well as around the world. Looking at phage therapy in contrast to antibiotics, we can more clearly see the pros and cons of this therapy that is now gaining attention:
Advantages of Phage Therapy Over Antibiotics
Disadvantages of Phage Therapy Over Antibiotics
The good news is that finally there are several high-quality, controlled studies set to begin. They will test the efficacy of phage therapy, mainly addressing bacterial infections in the Cystic Fibrosis population. We are wading into a new era of quality data and I look forward to seeing the results and whether phage therapy is efficacious for the broader lung disease population.
CYstic Fibrosis bacterioPHage Study at Yale (CYPHY)
Clinicaltrials.gov Identifier: NCT04684641
The primary objective is to see whether YPT-01 phage therapy reduces sputum bacterial load in cystic fibrosis with Pseudomonas aeruginosa
Sponsor: Yale University
Collaborator: Cystic Fibrosis Foundation
Start Date: December 2020
Estimated Completion Date: December 2021
Contact: Jonathan Koff, Yale University
Evaluating Safety and Tolerability of Inhaled AP-PA02 in Subjects With Chronic Pseudomonas Aeruginosa Lung Infections and Cystic Fibrosis (SWARM-Pa)Clinicaltrials.gov Identifier: NCT04596319
Single and multiple ascending dose study to evaluate the safety, tolerability and phage recovery profile of AP-PA02 multi-bacteriophage therapeutic candidate administered by inhalation in subjects with cystic fibrosis and chronic pulmonary Pseudomonas aeruginosa (PA) infection.
Sponsors and Collaborators: Armata Pharmaceuticals, Inc. and Cystic Fibrosis Foundation
Estimated Start Date: December 2020
Estimated Completion Date: March 2022
Contact: Vicki White, BS310email@example.com
Contact: Pierre Kyme, PhD310-665-2928 ext firstname.lastname@example.org
#bronchiectasis #phage #phagetherapy #pseudomonas
What do I think is the best method of clearing airways? The simple answer is… whichever one you are willing and able to do on a regular basis. This activity is often prescribed to be done once or twice a day and even more frequently during respiratory infections and flare-ups. Hopefully, you will be able to meet with a therapist to review airway clearance practices. I say hopefully, because even in New York City, I had difficulty finding a therapist with this type of expertise. When I asked my first pulmonologist to refer me to a therapist specializing in airway clearance, he said that he did not know of anyone! So instead, I had a ten-minute airway clearance session with his nurse who asked me to choose between an Acapella® and an Aerobika®.
I knew nothing about the devices and blindly chose the Aerobika. Four months later when I attended a New York City support group, I found out that although most use the Aerobika some preferred the Acapella so I ordered one to test which one works the best for me. I experimented and, most times, I prefer the Aerobika but occasionally I do like to switch things up and use the Acapella. There are some contraindications for using these devices, so it is important that you get your health professional’s approval and not just order one online.
I was not comfortable with the limited patient education I received in my doctor’s office, so I searched online for other resources. I found the Pulmonary Wellness & Rehabilitation Center in New York City, and met with a therapist there to review my airway clearance. The center was not on my health plan, but I felt it was important enough to pay for an experienced therapist to teach me the best ways to clear my airways, something I came to see as not only a science but also an art. A year later I switched to a new pulmonologist who referred me to an in-house hospital therapist to review my AC technique and make some minor recommendations. It was reassuring to know that, even with the therapist percussing me like a bongo drum, I did not expectorate more than my usual amount. My pulmonologist later said that, based on what she knew about me, I probably did not have a lot of mucus and that the techniques I was using were sufficient and effective.
As you clock in airway clearance hours, try new approaches and get input from your therapist, you will learn what clearance tools in your bronchiectasis toolbox work best for you and when to use them. There is an expression, “A new broom sweeps the floor, but an old broom knows the corners.” It is my hope that once you get adequate professional input and try different practices, you will have the experience to know how to “sweep your corners” and have clearer lungs.
#bronchiectasis #airwayclearance #nebulizing #Aerobika
I recently attended the virtual 4th World Bronchiectasis & NTM Conference. Leading clinicians from across the globe presented in their areas of interest and research. One topic that many were concerned about is the overuse of inhaled corticosteroids (ICSs) for bronchiectasis. Although inhalers, also known as puffers, are frequently needed by those who have asthma and COPD, there is less supportive data when it comes to bronchiectasis. In fact, there is worry that ICSs could very well be doing more harm than good by lowering an individual’s immunity and encouraging the growth of bacteria such as Nontuberculous Mycobacteria as well as viruses and fungi.
This overprescribing of inhalers issue was also discussed by Dr. Colin Swenson and Dr. Wendi Drummond in their NTMTalk.com podcast on bronchiectasis and NTM Lung Disease. “Up until recently, we thought that these were very benign medications that really did not have very many side effects”, stated Dr. Swenson. “We now know however that it looks as though there is an association, not necessarily causation…between inhaling corticosteroids and development of NTM Lung Disease”.
They both voiced concern that some individuals with BE might be taking ICSs needlessly and at higher doses than necessary. Dr. Swenson said that what often happens is patients are prescribed ICSs at a very high dose to bring their COPD or asthma under control. Then, because the patient doesn’t want to have another exacerbation, they are left on that higher dose indefinitely and not stepped down to the lowest effective dose. Dr. Swenson strongly suggested that patients advocate for themselves by asking their doctors “Am I at the lowest optimal dose for me to keep my underlying condition under control…but will not put me at risk for developing NTM pulmonary disease?”
So, please think about this issue, do your research and then if you feel it is appropriate, have a conversation with your doctor. It goes without saying, do not decrease or stop your medication without your doctor's approval.
#bronchiectasis #COPD #asthma #cysticfibrosis #ntmlungdisease #maclungdisease #ntmtalk @ntmtalk #lungdisease #advocate
When I say we need to “be clear” with bronchiectasis, what exactly am I talking about?
For me, being clear means:
Firstly, keeping our lungs clear is critical to living with bronchiectasis. We need to have a daily commitment to removing mucus from our airways through breathing, exercise and using clearance devices. This powerful trio is key to a better quality of life.
In addition to keeping our lungs clear, we can also benefit from clearing our minds of misconceptions about bronchiectasis. Anecdotes, like the ones posted on social media, are personal stories and may or may not be fact-based. If you go online to share and support others, that is great. If you go online to learn about BE, then know your source. Online support forums are global and this translates into a broad spectrum of therapies, outcomes and levels of patient education. For current information, you should visit the websites of the top institutions that specialize in bronchiectasis and organizational support sites dedicated to our disease. I reference reliable evidence-based studies and information on this website on both the "Bronchiectasis Information" and "Bronchiectasis Research" pages.
Lastly, we must clear our thoughts of debilitating anger and fear. Maybe you were shocked by your diagnosis. I know I was. After a while, you might become resentful and perhaps angry about it. Angry that it took so long for you to be diagnosed resulting in unnecessary pulmonary scarring. Angry that you now have to spend hours caring for yourself when you would rather be doing other things. And, for those in the advanced stages of this disease, angry that your quality of life has been diminished.
These emotions are to be expected, but if they stay with us over time, they will not serve us well. The hormones and other chemicals that are released in response to negative emotions are harmful to our health. If we are to achieve and maintain a nurturing environment in our bodies, one that is conducive to maximal healing and health, we need to clear negative thoughts quickly.
This attention to being clear in body, mind and spirit can create a healing framework for living with bronchiectasis. It can support us in our efforts to minimize additional damage to our lungs and to thrive.
#bronchiectasis #ntmlungdisease #airwayclearance #trudellmed #positiveattitude
We don’t laugh because we’re happy — we’re happy because we laugh — William James
Orange you glad I didn’t say banana?
You may not find this joke particularly funny, unlike my young grandsons who think it is hysterical. No matter how many times they tell it, it sends them into a fit of giggles. Then, their laughter becomes contagious and before long I am laughing along with them.
The old adage “laughter is the best medicine” was verified by Norman Cousins, editor of the Saturday Review, in his ground-breaking book Anatomy of an Illness published in 1979. The book details his painful experience with a degenerative disease. When Cousins was told that there was only a 1 in 500 chance of going into remission, he took matters into his own hands by creating a laughter therapy program for himself. He found that watching and laughing to comedic shows like Candid Camera, The Three Stooges and The Marx Brothers, eased his pain and was a large part of his recovery.
Although many in the medical community were skeptical of his claims, Cousins said that “We mustn’t regard any of this as a substitute for competent medical attention. But the doctor can only do half the job. The other half is the patient’s response to the illness. What we really mean by a patient’s responsibility is that we’ve got vast powers that are rarely used. It’s important to avoid defeatism and a sense of panic and despair.”(1)
Surprisingly, Cousins’ layman approach and self-experimentation was published in the New England Journal of Medicine. The medical profession started paying attention and, although many physicians had doubts and concerns about Cousins’ unscientific approach, he had laid down the gauntlet and the challenge was taken up by several researchers in the 1980’s, one of them being Dr. Lee Berk, a preventive care specialist in California.
Berk and his colleagues conducted many experiments involving laughter. In one study, they measured the participants’ stress hormones before and after watching an hour of comedy. The study found that after watching the show, the subjects had lower levels of stress hormones compared to those who did not watch it.(2)
In 1995, Dr. Matan Kataria, an Indian physician living in Mumbai started a laughing club. Dr. Kataria’s club was based on his research on the health benefits of laughter. His concept caught on and he formalized his method by calling it “Hasya Yoga” which means “Laughter Yoga.” Today, there are thousands of Laughter Yoga Clubs throughout the world.
Several years ago, I went to a Laughter Yoga class while on vacation. I hemmed and hawed about going to the class thinking that it sounded silly, but eventually I gave in. Following the teacher’s instructions, our group of about 20 women formed a circle and did some deep breathing, clapping and vocalizing of patterns such as “Hee Hee Ha Ha Ha”. Then we walked around the room and engaged one another with playful greetings and fake laughter. By the end of the hour we were all genuinely laughing and we left the class feeling relaxed and uplifted.
This type of program is not everyone’s cup of tea, yet for me the takeaway was that I should laugh more — I should lighten up. At times, the seriousness and daily grind of self-care can zap my sense of humor and I am sure you’ve felt the same way. But, if we think of laughter as part of healthy living, it seems less frivolous and more integral to our well-being.
The Mayo Clinic concurs that laughter has many salutary effects and recommends that we find ways to laugh regularly. They say that laughter can:
So, let’s try to benefit from laughter by looking for ways to let loose a guffaw or two during our day! Whether that means clicking over to an online joke site, watching a comedy hour or reminiscing with friends about something funny from the past, seek out opportunities to laugh.
Having grandchildren and watching them run around and be silly reminds me of how good it is to be present in the moment and enjoy life. My friends with pets have a similar experience watching the fun-loving antics of their cats and dogs. So, whatever our source of laughter, let’s remember that it nourishes the body and spirit.
#bronchiectasis #chronicdisease #positivethinking #laughter #laugh
1. Colburn, D. (October 21, 1986). Norman Cousins, Still Laughing. The Washington Post, https://www.washingtonpost.com/archive/lifestyle/wellness/1986/10/21/norman-cousins-still-laughing/e17f23cb-3e8c-4f58-b907-2dcd00326e22/
2. Body’s response to repetitive laughter is similar to the effect of repetitive exercise, study finds. (2010) ScienceDaily.com. sciencedaily.com/releases/2010/04/100426113058.htm
3. Mayo Clinic Staff. (2019). Stress Relief From Laughter? It’s No Joke. Healthy Lifestyle-Stress Management. mayoclinic.org/healthy-lifestyle/streLss-management/in-depth/stress-relief/art-20044456