Steroids and Inhaled Corticosteroids (ICSs) 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.
Dr. Colin Swenson and Dr. Wendi 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:
#Intimacy #COPD #oxygenuse #usingoxygen #shortofbreath #breathlessness #emphysema #chronicbronchitis #Bronchiectasis #ChronicCoughing
People with bronchiectasis are better educated about diagnostic and treatment options earlier on compared to five years ago, when I was diagnosed. This is thanks to medical organizations, health care institutions and companies like:
Bronchiectasis Info and Research
NTM Info and Research
COPD Foundation’s Bronchiectasis and NTM 360
The European Lung Foundation
National Jewish Health
The result is a well-informed group of people who are being told in webinars they must advocate for the best care for themselves with their health care providers. And THEY DO!! They ask for airway clearance education, medical devices and consultations with specialists.
Often, the answer to these requests is “NO, NO, and NO!”
I have the opportunity of communicating with dozens of women every week. Our conversations often involve strategies to get providers to listen to their requests seriously.
Below are examples from this past week:
“I asked for an Aerobika prescription and when I would have my next CT scan. My doctor told me that my BE is mild and I don’t need airway clearance or follow-up scans.”
“My BE is progressing and I asked to see a GI doctor to see if I have GERD. My Nurse Practitioner said I don’t have symptoms so I don’t have reflux.”
“My doctor told me although I cough non-stop and cannot produce a sputum sample that a bronchoscopy would just irritate me.”
“I’m doing airway clearance three times a day, have tons of mucus and asked my doctor for a vibrating vest. She said they are difficult to get and could make my condition worse.”
Now, don’t get me wrong. There are superb bronchiectasis centers throughout the US and globally. These doctors are experts in the field of BE and NTM and understand the need for a holistic approach to our disease. But many people do not have the resources to travel to them and must seek care in their communities.
With more professional education and the future publication of US bronchiectasis guidelines, this situation will eventually improve. In the meantime, we need to continue to advocate for ourselves and practice daily self-care.
#bronchiectasis #selfcare #advocacy
For some of us with bronchiectasis, particularly those who also have MAC Lung Disease, going to the dentist can be stressful. Being inverted in a dentist’s chair, having the dental hygienist clean your teeth with an ultrasonic Cavitron spray and then using water from the spit bowl fountain to rinse, can expose us to harmful bacteria as well as cause coughing.
But, if you take some precautions and have good communication with your dental team, it makes all the difference!
Consider doing the following:
Good oral hygiene is important for everyone and especially for people with lung disease. There are hundreds of types of oral bacteria –some good, some not so good, and lots we are currently studying because their role is unknown. However, tartar build up and gum disease can be prevented by regular dentist visits.
#bronchiectasis #maclungdisease #ntmlungdisease #oralhygiene
The “mucociliary escalator” is a term used to describe a built-in mechanism to keep our airways clean. This clearing system is complex, but in the simplest terms, it uses mucus to trap dirt, air pollution particles and pathogens. Then cilia, small hairs that undulate in the moving mucus, sweep the unwanted matter towards our throat where it is expectorated or swallowed.
This cleansing system is ongoing in healthy lungs as they too produce daily mucus to clear the decks. However, in diseased lungs such as those in bronchiectasis (BE), the ciliated areas are damaged and therefore, we make more mucus to compensate. The body does its best to sweep the airways clean, but often it is a herculean task that cannot be automatically accomplished day after day.
For this reason, we need to help out our lungs with daily airway clearance. Airway clearance is a broad term describing the effort to help the mucociliary escalator function more effectively. With BE, there are damaged areas in our lungs with little or no cilia allowing mucus to pool. This mucus needs to be removed, otherwise bacteria, viruses and fungi can feed on it and multiply.
Whether we use exercise, breathing and coughing techniques, gravity, or medical devices will depend on availability and preferences. What is important is that we do our best to assist our lungs in clearing airways regardless of how often we cough or how much mucus annoys us throughout the day. Working together with our lungs is essential to maintaining overall health and well being.
#bronchiectasis #ntmlungdisease #maclungdisease #copd #asthma #lungdisease #lunghealth
When it comes to learning airway clearance, NOTHING is better than professional guidance. The problem is respiratory therapists (physios) who specialize in airway clearance techniques, are difficult to find, even where I live in New York City. But, when I found someone, that one session gave me the confidence to begin a daily habit that I will have for the rest of my life.
I’ve since had additional sessions as I continue to learn more and try different approaches. What might work for us today, might not yield the same results in a year or two. And sometimes we just need a tune-up.
There are many doctors around the world, both primary care and lung specialists who are not well-versed in airway clearance. But it is my hope that through online education and support groups, we will all understand the importance of keeping our airways clear and will seek out the care we need. It might mean having to raise the subject of services and equipment with your medical team, if they don’t offer those options.
Here’s a great analogy to use with your doctor regarding the importance of airway clearance. According to Dr. Pamela McShane, one of the top BE/NTM professionals in the US, we should think of removing mucus from our lungs the way we think of flossing our teeth. We floss even when there doesn’t appear to be anything there, but it breaks up any bacteria biofilm present and is a good habit to have. That is how we can think of trying to remove mucus. We are breaking up biofilm in our lungs.
Educate. Advocate. Stay committed.
#bronchiectasis #copd #maclungdisease #ntmlungdisease #airwayclearance
I have two diseases–bronchiectasis (BE) and a Mycobacterium Avium Complex (MAC-LD) lung infection. Both were considered rare, but with increased medical professional education and the use of High Resolution CT scans, BE is being diagnosed more frequently than in the past. However, a MAC infection is rare. These bacteria are everywhere in our environment and it is unusual for them to cause disease.
When people are diagnosed with both bronchiectasis and a MAC infection at the same time, which is my situation, doctors frequently say that it is a “chicken or the egg” situation. Did the bronchiectasis damage and inflammation allow the MAC to set up shop in the lungs or did the MAC infection cause the BE?
Some answers to this question can be found in a person’s medical and lifestyle history. For example, having pneumonia or bronchitis might have caused the scarring in the lungs, the bronchiectasis. A deeper dive might uncover genetic causes and in some cases, these underlying conditions might be treatable.
Although in my case nothing is certain, I probably got the BE from a bad pulmonary infection in my mid-50s that led to inflammation and a welcoming environment for MAC. As I said, MAC is ubiquitous–it is in the soil, water and air. At one point, my husband and I moved out of Manhattan to upstate New York. I had a huge flower garden during the eight years we lived there and spread heaps of mulch and soil. MAC loves mulch and because it is fluffy and easily airborne, it can find its way into the lungs and for some people, cause disease.
In my recently published book, “The BE CLEAR Method to Living with Bronchiectasis” https://amzn.to/333htls I mention my double-whammy diseases but focus on bronchiectasis. This was a deliberate choice as there are many people who have BE and will never get MAC or any Nontuberculous Mycobacterial (NTM) infections.
At the same time, I feel I should talk about it so that people, if they so choose, can minimize their risk with simple solutions such as wetting soil to prevent dust and wearing a mask while gardening.
#bronchiectasis #NTMLungDisease #maclungdisease
How does the water we drink that goes into our stomach cause a MAC infection in our lungs?
The answer is two-fold: by inefficient swallowing and gastric reflux.
All of us micro-aspirate liquid into our lungs throughout the day. This might be from liquid “going down the wrong pipe” as can happen with swallowing issues, coughing, or “just because.” Although a certain number of aspirations is considered normal and not a concern for those with healthy immune systems and lungs, this may not be the case for people with impaired airways.
Gastroesophogeal Reflux is another way bacteria can enter the lungs. Both acid and non-acid gastric refluxate can come up from the stomach and enter the lungs. This liquid can contain bacteria that have not been killed off by our stomach acid and possibly cause infection.
One way to help prevent reflux is to take GERD precautions. These precautions might include:
In addition to reducing swallowing issues and GERD, we can also reduce the MAC in our drinking water. Boiling water for 10 minutes or drinking spring water will greatly reduce this exposure and is something I do.
If you choose to drink spring water, do not drink from a water cooler as a MAC biofilm might be lining the inside of the machine. The same is true for refrigerator filtered water and ice and Brita-like charcoal pitchers.
Not everyone with bronchiectasis will get a MAC infection. However, there is about a 10-20% chance you will and the precautions I have laid out can reduce that probability.
Some BE and MAC specialists tell their patients to just live their lives and to not try to control bacteria that is everywhere in our environment. Others suggest taking preventive measures. So it is best to have this conversation with your doctors and see what they recommend.
Remember, we have a life-long condition so you can always make changes gradually over time.
#bronchiectasis #maclungdisease #ntmlungdisease #GERD
The “B” in my book, “The BE CLEAR Method to Living with Bronchiectasis,” stands for “Breathing.” To breathe our best we need to create space in our body by lengthening our spine. In other words, by improving our posture.
During a 2021 patient bronchiectasis conference, Dr. Jonathan Whiteson, Medical Director of the NYU Langone Cardiopulmonary Rehabilitation department, repeatedly mentioned the connection between good posture and lung health.
Improving posture begins with believing it is critical to your well-being. It means that you too believe that sitting, standing and walking more upright will lead to better breathing and many other benefits including:
* More confidence
* Less coughing
* Less feeling short of breath
* Better digestion including less gastric reflux
* More stability while walking
* Fewer joint issues
Like any new habit, improving your posture will require daily practice. For example, write the phrase “lengthen your spine” or “sit with better posture” on a slip of paper and put it on the table when you eat, or when you are at your desk or watching TV.
Observe what might be getting in your way of sitting, standing and walking more upright. See what you can do to address these challenges.
In my book, “The BE CLEAR Method,” I demonstrate 10 exercises to improve your strength and alignment. Some people with BE have spinal issues such as scoliosis and kyphosis, but understanding the importance of posture and making small changes to better align the spine, will make a difference over time.
As your body begins to elongate you will feel the difference. Your breath will have more room to naturally flow more evenly and deeply.
#bronchiectasis #copd #breathing #posture
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.