 Let’s discuss some simple precautions we can take to reduce our risk of lung infections.
Who Should Take Precautions? If you haven’t had infections yet, you might consider a “wait and see” approach. However, a proactive strategy might be beneficial for those with: *Compromised Immunity *Previous infections *Current infections Here are ways to reduce our risk of infection (no purchases required or burdensome time commitment needed. At Home: *Hot Water: Set the water heater to over 130°F (54°C) to kill bacteria. *Shorter Showers: Limit shower time to minimize exposure to mist *Bathroom Ventilation: Open a window. Run a fan. *Remove faucet aerators. *Do not use a Brita-like carbon filtering pitcher *Humidifiers -If we must use one, an evaporative humidifier not an ultrasonic one is best and it needs to be sterilized regularly. *Do not usewater and ice dispensers in refrigerators. *Opt for bottled or filtered water over water coolers. *Stagnant Water: If you haven’t used a faucet, shower or toilet in a while, let the water run for a few minutes before using it. Showerhead Maintenance: Option 1: Remove the showerhead and soak it in undiluted bleach for 30 minutes periodically. Option 2: Use your shower without the showerhead. Home Dust Control: *Remove dust collectors like drapes and carpets. *Vacuum frequently and wear a mask. Gardening: *Wear a mask. *Wet the soil. Be Wary of: Hot tubs Indoor Pools Clean brass and woodwind instruments For a more detailed go to my website Resources page. Scroll down to find the article by Dr. Joseph Falkinham. Also check out the video by Professor Rachel Thomson. https://youtu.be/weYLlNQ4YQI?si=N_0GbWN-YCXi705l #waterprecautions #bronchiectasis #hottubs #ntmlungprevention
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 CHEST journal has an article about a clarinet and saxophone player with Allergic Bronchopulmonary Aspergillosis (ABPA.) It caught my eye because I have had two clients with bronchiectasis who are brass and woodwind musicians.
I think it is wise to suggest if you play an instrument by putting it in your mouth, and currently have or have had lung bacteria and fungal infections, you might check out your sterilizing options. As always, be sure to mention it to your medical team. https://www.npr.org/2010/09/08/129725678/think-music-heals-trombone-player-begs-to-differ #bronchiectasis #allergicbronchopulmonaryaspergillosis #fungi #fungalinfection #musician #musicalinstrument  Words of wisdom from our favorite microbiologist, Dr Joseph Falkinham, Virginia Tech, via NTM IR Connect:
“It is important to store UV-irradiated water in the dark, as the nontuberculous mycobacteria (NTM) and other bacteria, have a system that rapidly reverses the damage to DNA caused by UV-irradiation. That system requires light, either natural or artificial. If you keep UV-irradiated cells in the dark, there is no repair and cells stay killed. Any UV-sterilizing bottle, like the SterizPen or Crazy Cap must have a dark bottle, either metal or black painted. It’s fine to store UV-irradiated water in another container, but make sure the new container is already sterile and will not admit light. Dark, light impermeable bottles are only required for UV-irradiated water; filtered or boiled water do not have to be stored in dark bottles.” If you are like me and leave your Steripen in the bathroom to sterilize water for drinking and brushing your teeth, you’ll probably want to just sterilize for your immediate needs. Since sterilizing only takes a minute or two it’s not a huge hassle to sterilize another glass of water later for your nighttime routine. Thank you, Dr. Falkinham for explaining how to keep ourselves healthy. https://connect.ntminfo.org/home (patients only) #bronchiectasis #steripen #uvsterilizing #expertguidance #teamBE #teambronchiectasis  Offering medical advice within social media support groups and business pages managed by non-medical individuals can pose risks.
Recently, I've been told of social media groups advising members against certain diagnostic tests and medications like acid-reducing PPIs and biologics. While these discussions are thought-provoking and may present various perspectives, it's crucial to recognize that non-medical individuals are not qualified to dispense medical advice. Furthermore, their personal experiences are just that - personal experiences. Decisions regarding your healthcare should always be made in consultation with your medical team. They are the experts and have access to your medical records. If you don’t have confidence in your physician or the rapport and communication is not good, then try to find a better match. I did that five years ago and it made a world of difference. Local bronchiectasis/NTM support groups are an excellent resource for the clinicians in the area who specialize in our diseases. I include myself and my BE CLEAR business page in this discussion. Anything I post is for educational purposes only. It is for you to become aware of the pros and cons regarding an issue and to discuss them with your medical team. Do not feel ashamed or embarrassed by your current care regime and choices. I urge you to speak with medical professionals before considering any changes. Your health and well-being deserve the expertise and guidance of qualified healthcare providers. #SupportNotMedicalAdvice #evidencebased #buildastrongteam #bronchiectasis  National Jewish Health’s recent NTM patient conference offered invaluable insights. While bronchiectasis was discussed, the spotlight remained firmly on NTM and MAC.
Regardless of whether one is dealing solely with BE or battling it alongside infection, speakers emphasized the crucial role of maintaining a healthy weight and engaging in regular airway clearance. Notably, those not meeting weight criteria may be ineligible for certain clinical trials or surgical interventions. Michelle MacDonald shared a wealth of strategies for weight management, drawing from her extensive experience showcased in numerous webinars for NTM Info & Research, accessible on their YouTube channel. The most exhilarating aspect was the array of research initiatives on the horizon for both BE and NTM disease. Dr. Chuck Daley, whom I affectionately call Dr. NTM, typically exudes calm, yet his enthusiasm was palpable as he discussed forthcoming research endeavors. Let’s persevere with our self-care routines, buoyed by the promise of upcoming advancements. New treatments are indeed within reach! #GoodNews #NewTreatments #ClinicalTrials #Participate #Bronchiectasis #NTM #MACLung #MACLungDisease #NTMLungDisease #mycobacteria #nationaljewishhealth  Do you know that there is an association between bronchiectasis and gastric reflux? And, believe it or not, we can have gastric reflux and not have any symptoms!!! It’s called silent reflux.
Furthermore, we can reflux solids, liquids and gases that are non-acidic as well as acid. That’s right! Sometimes the stuff that makes its way from the stomach into our esophagus can be alkaline like water, milk or bile. Although it isn’t acidic, that doesn’t stop it from refluxing and finding its way into our lungs, possibly resulting in tissue damage. Speak to your doctor about reflux. And whenever possible, try to sleep lying on your left side. If you look at the photo, you’ll see why. Also precautions, such as not eating three hours before lying down, avoiding trigger foods and raising the head of your bed can help. #Reflux #AcidReflux #GERD #RefluxDisease #Burping #Belching #Heartburn #Bronchiectasis #LungDisease  In 2016, I returned from a trip to Prague, Vienna, and Budapest with a cold and a lingering cough. It wasn't the usual chest-clearing kind, but a dry, hacking cough that plagued me day and night. I hoped it would fade on its own. But weeks turned into months, and the cough became my unwelcome companion.
Finally, I sought help from my internist. Reflux emerged as the prime suspect and medication became my new regimen.Weeks of diligent use yielded no improvement. Determined to find a solution, I read books and implemented lifestyle changes. Disappointingly, none of these efforts helped. A year later, a CT scan revealed a new twist - bronchiectasis along with the possibility of a MAC infection. A referral to a pulmonologist shifted the focus, however, the nagging doubt about reflux persisted. I asked my pulmonologist for a consultation with a gastroenterologist, leading to a battery of tests. All were normal. I kept on thinking about a book I had read called “Chronic Cough Enigma" by Dr. Jamie Kouffman. The book discussed the potential link between chronic cough and vagus nerve dysfunction, suggesting amitriptyline as a possible remedy. I discussed this with my GI doctor who agreed it was worth a shot. The amitriptyline trial proved short-lived. The side effects, a constant daze, were unbearable. Yet, during that week, my cough subsided. With newfound optimism, I continued solely with the Aerobika. The transformation was remarkable. The urge to cough, the constant irritation – all significantly diminished. Sharing my amitriptyline trial has always been a source of hesitation. Did it truly make a difference or was it simply the daily airway clearance doing its job? Perhaps the amitriptyline quieted down a hypersensitivity, allowing airway clearance to function more effectively. Advocating for that trial, for exploring all possibilities, instilled in me a sense of empowerment. This experience serves as a reminder: the path to wellness is not always linear. Persistence, a willingness to question and open communication with healthcare professionals are all crucial tools for those of us living BE. By becoming an active participant in my own healthcare journey, I was able to find a path to feeling better and being able to resume enjoyable activities without fear of coughing. Although bronchiectasis is a chronic disease, we can still try our best to eliminate symptoms that get in the way of us living our best life. #bronchiectasis #coughing #chroniccough #neurogeniccough #Reflux #GastricReflux #AcidReflux #nonAcidReflux #airwayclearance  🇺🇸BE-AMERICA SERIES🇺🇸
🌟Peggy from Florida🌟 Have you ever dreamt of traveling the world but worried about the cost? Meet Peggy Farren, a retired professional photographer who has mastered the art of budget travel. She travels for months at a time by using credit card points, house swapping and when lucky, scoring incredibly cheap airline tickets. Peggy’s stunning Instagram photos showcase her adventures, a continuation of her pre-pandemic passion: teaching photography workshops in Florida and around the globe. However, when the pandemic hit, income from photography and renting out her Naples home disappeared. Undeterred, Peggy sold her home and spent seven months house-sitting across the US, essentially pet-sitting while exploring new places. Even while on the road, she managed her bronchiectasis and a MAC infection, maintaining a daily self-care routine with her trusty Afflovest vest, nebulizer, and Aerobika. Afterward, she purchased a more affordable house in Port Charlotte, Florida, which she could continue to rent out for income and still visit her mother in Naples. In addition to airway clearance, Peggy prioritizes daily fitness and joining affordable gyms whenever possible. A favorite was working with a personal trainer while in Merida, Mexico this past winter for under $50 a month! She usually travels solo, although occasionally friends or her son join her. While accommodations might not always live up to the Airbnb photos, her positive attitude shines through. Her true comfort comes from exploration and connecting with locals. Upon arrival, whether in Portugal, Turkey, Spain, or Mexico, Peggy’s first order of business is finding a large pot to sterilize her airway clearance equipment. Peggy’s story is more than just travel tips. It is a testament to resourcefulness and resilience. She’s an inspiration, proving that chronic illness or financial limitations needn’t hinder our zest for life. #BEAmerica #BEAdventurous #Traveling #TravelingTips #TravelingHacks #TravelingWithChronicIllness #TravelingWithChronicDisease #NTM #MAC #MACLungDisease #Sterilizingequipment #AirwayClearance |
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
September 2024
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