|
⭐️⭐️BE-Practical Series⭐️⭐️
Oral microbiota is a hot research topic and within the next five years we will hopefully have a better understanding of the role these bacteria play in the lung microbiome. Although it is hard to believe, we have over 700 different types of bacteria in our mouths! Some are good, some not so good and some we aren’t sure of. For those of us who have dealt with NTM infections like MAC, the good news is NTM are generally not found in the oral cavity. However, when we cough and secretions enter our mouth, they could end up on our toothbrush. A dab of dish soap and a scrubbing will help clean your toothbrush, and if you have a baby bottle sterilizer, you might see if your toothbrush can withstand the heat. My client put his toothbrush in a microwave bag for three minutes and it bent, so I would avoid this method or try it for a shorter time. I recently treated myself to this mini UV device I found on Amazon. I pop my toothbrush into it after each use and also take it on trips. It isn’t a “must-have” device, but it is reasonably priced and easy to use. In addition, its a good idea to maintain a healthy mouth with good oral hygiene and regular dentist visits. Don’t forget to get your complimentary toothbrush from the hygienist! You might want to consider using a new one every month. #oralhygiene #toothdecay #bronchiectasis #dentistvisits #uvsterilizers #ntm #ntmlungdisease #maclungdisease #cysticfibrosis #pseudomonas #haemophilus
0 Comments
 Imagine this: Palm trees sway gently, the sun warms your back, and a cool breeze carries the scent of the ocean. Sounds like a dream, right?
Make it a reality at the Bronchiectasis/NTM happening in San Diego at the luxurious Fairmont Grand Del Mar this May 16th-17th. Join us for: *Meaningful connections with the bronchiectasis and NTM community *Invaluable updates from leading experts in interactive sessions *Learning opportunities whether you attend in person or virtually To register click here!! Thank you Amy Leitman and the non-profit Bronchiectasis/NTM Info and Research team for organizing this event. Also, many thanks to Insmed and others for sponsoring this event. I’m so proud to volunteer as an ambassador for this fabulous organization. When the bronchiectasis community of people with BE, researchers, clinicians, industry and non-profits come together, we are a MIGHTY FORCE!!!! #community #learning #ntminfo #bronchiectasisinfo #bronchiectasis #ntm #ntmlungdisease #sandiego #bronchiectasisconference #ntmconference #education #insmed #respiratoryhealth #respiratorytherapist #respiratorytherapy #rrt  On my YouTube channel, the “Airway Clearance” playlist is the clear winner! The “Aerobika in Detail” video has over 1,500 views. It warms my heart that people worldwide are accessing this information and finding it valuable.
Speaking of valuable information, did you catch the recent Yale presentation on bronchiectasis and MAC infections? It was truly amazing, as always. Dr. Ashley Losier, who I saw for a second opinion five years ago at Yale, truly hit it out of the park, and Marjorie Cullinan, RRT, Operations Manager of Yale’s Pulmonary Function Testing, was a shining star! But beyond the specific airway clearance tips, what truly resonated was Marjorie’s reassuring approach. For us “bronchi-warriors,” who can sometimes feel quite anxious, that makes a world of difference. Unlike a glass jar, our lungs don’t offer a view of how well we’re clearing mucus. Some folks bring up lots, others are less productive. This can lead to self-doubt and uncertainties. Compounding this, many of us haven’t had one-on-one guidance from a respiratory therapist, relying instead on peers and online resources. While this is commendable, it can leave us lacking confidence. That’s why even years after our diagnosis, we still want more airway clearance education. We’re told it’s vital for managing bronchiectasis, but often left to navigate without personalized instructions. It’s like being told, “Drive safely, your life depends on it!” without ever learning the rules of the road. Haven’t listened to the Yale recording yet? Do it today! Know that while the presentation is on NTM infections, much of the information is useful for those with bronchiectasis. #bronchiectasis #BronchiectasisEducation #NTM #NTMLungDisease #MACLungDisease #RespiratoryTherapy #respiratorytherapist BE CLEAR with Bronchiectasis, LLC has a consulting relationship with Monaghan Medical  Clearing our airways of mucus can be tricky at times. What works for one person might not work for someone else. Or what’s working for you today might not be as effective in the future. That’s why whenever possible, it’s good to get professional input.
My airway clearance is a combination of exercise, using a HFCWO vest, nebulizing hypertonic saline, using my Aerobika, Autogenic Drainage including a huff cough, postural drainage and EXERCISE All of these approaches can be effectively done by many as stand alone therapies, but because I have these devices, I often mix and match them. I enjoy experimenting but one thing that’s absolutely necessary for me is postural drainage. There is controversy regarding postural drainage because it’s not ideal if you have gastric reflux. I don’t have reflux but with that said, I try to wait at least two hours after eating before I do my airway clearance. I have shown many people how I do airway clearance but always with the caveat that they should seek out professional input. Also, it’s important to note that there are certain contraindications for using some of the airway clearance devices. Just another reason why several sessions with a respiratory therapist or physiotherapist is the best way to start a lifetime of keeping your lungs clear. An excellent airway clearance website—IMPACT Educate yourself so you can advocate for the best care. Then try to help others in the BE community. It’s up to us! #Bronchiectasis #asthma #AirwayClearance #ntmlungdisease #maclungdisease #lunghealth #chroniccough BE CLEAR with Bronchiectasis, LLC has a consulting relationship with Monaghan Medical  I am a volunteer ambassador for the awesome Bronchiectasis/NTM Info and Research non-profit agency. I post their upcoming webinars and conferences but more than anything, I am passionate about their support groups.
There are over 35 including an international one!! In these groups we talk about a wide range of experiences and issues. It feels like an old-fashioned quilting circle except we are talking about airway clearance, exercise and nutrition instead of fabric patterns and quilt designs. To see if there’s a support group in your area (many are virtual) go to https://lnkd.in/eTvGEpQH No support group? Check in with Trisha at [email protected]. She is the Engagement Officer and she will help you find one or perhaps start one. The best part of being in a group is sometimes we really connect with a few group members and then we have our own mini-support circle. Warm. Supportive. Comforting. Community. #Bronchiectasis #NTMLungDisease #MACLungDisease #ChronicLungDisease #SupportGroups #SupportGroup #ChronicIllnessSupportGroup #NTMIR #BronchiectasisInfo  Thank you everyone! If you have Gmail you can subscribe and be alerted with each new video! It also motivates me to continue producing content.
https://youtube.com/@BECLEARwithBronchiectasis Video playlists are organized by the BE CLEAR acronym: Breathing Exercise Clearance of Airways Laughter Eating and Drinking Alternative Therapies Relaxation, Rest and Sleep Select “Playlists” and choose what interests you. I’ve been favoring airway clearance with 9 videos because that’s what you asked for! Interested in a particular topic and would like a video on it? Let me know! Remember… bronchiectasis is a chronic condition and together we can manage it with education and when necessary, advocating for what we need. I am very hopeful about our future! There are promising treatments in the pipeline, but in the meantime, we need to commit to doing our best to manage our health. PLEASE SHARE in support groups and in online community forums #Bronchiectasis #COPD #Asthma #Covid #LongCovid #Mucus #Phlegm #Sputum  About 25-30% of people with bronchiectasis will at some point grow Pseudomonas aeruginosa (Pa) in their lungs. The older we are, the more widespread our bronchiectasis and the poorer our lung function, the more likely we are to get a Pa infection.
Regular sputum cultures are critical as sometimes there are no indications that Pa is causing an infection. However, particularly for those of us who have had these infections in the past, we might notice: Green sputum More sputum Bad breath More fatigue More coughing There seems to be consensus in the medical community that when Pa first appears in our sputum, effort should be made to eradicate it by taking oral antibiotics, or IV antibiotics, and perhaps, adding inhaled antibiotics. However, if Pa remains in our lungs, it becomes challenging to clear. Similar to NTM bacteria, Pa bacteria clump together in a biofilm, making it difficult to eradicate. On top of that, it can be antibiotic resistant. Sometimes chronic Pa doesn’t cause an increase in symptoms and discomfort. However, when it does, people will often take courses of antibiotics to quiet it down. During the European Lung Foundation Bronchiectasis Patient Conference in 2022, Dr Josje Altenburg from Amsterdam UMC discussed this in her talk titled —”Is the Pseudomonas a threat or a pet?” Have a listen: https://www.youtube.com/watch?v=_bNlHxTIY14 Currently, there is a clinical trial looking at phage therapy for Pseudomonas aeruginosa in people with bronchiectasis. The study is being conducted by Armata Pharmaceuticals at multiple US sites. The phage are administered through inhalation therapy. The study is still recruiting and will be complete with 60 participants. Please note one needs to have a BMI equal to or greater than 18 to be included in the study. armatapharma.com/ #pseudomonas #lungdisease #bronchiectasis #airwayclearance #sputum #mucus #phelgm #lunginfection #lunginflammation #chroniccough  I have had a nontuberculous mycobacterial infection(NTM) called a Mycobacterium Avium Complex infection (MAC).
These infections are difficult to treat (3 antibiotics for at least 12 months) so I take precautions to reduce the possibility of acquiring new ones. The good news is many who have bronchiectasis do not have MAC infections and there is roughly a 75 percent chance they never will. But for those of us who already have a MAC infection or have had one in the past, our lung health is at greater risk. Water is a source of NTM bacteria. According to water expert Dr. Falkinham, NTM bacteria are in all municipal water systems. Well, you might be thinking, they chlorinate water so what’s the problem? The problem is that NTM have a bunch of superpowers including a thick fatty coat that prevents water and disinfectants from entering their organism. This means that chlorine in the concentration in water systems is not strong enough to kill NTM. To make matters worse, NTM rarely hang out alone, but rather in “protective gangs” more scientifically known as “biofilms.” They line our plumbing pipes and accumulate in our showerheads. The best way to deal with these bad guys is by mechanically removing them by scrubbing and killing them with heat. Some or all of the following can be done to decrease exposure in the bathroom: Open a bathroom window while bathing Run a bathroom fan while bathing Take short showers Use a showerhead with large holes Increase your hot water tank temperature to 130 degrees Let your taps run for several minutes before using water Soak your showerhead in un-diluted bleach for 30 minutes or replace your showerhead regularly Take a bath instead on a shower Run faucets that are rarely used like those in a vacation home for 5 minutes before use For Dr. Falkinham’s full article, go to my website’s “Resources” page and scroll to the bottom: https://www.letsbecleartoday.com/bronchiectasis-information #maclungdisease #ntmlungdisease #Bronchiectasis  YALE RECORDING NOW AVAILABLE!!
When the non-profit Bronchiectasis/NTM Info & Research teams up with Yale School of Medicine, exciting things happen! I want to express my sincere gratitude to Debbie Breslawsky, patient advocate, friend, and mentor for many years, for organizing this fantastic talk. Years ago, I traveled by train from New York City to New Haven to attend this talk in person. Now, we can all enjoy it from the comfort of our homes! In addition to Dr. Ashley Losier and an infectious disease specialist, Dr. James Shepherd, Marjorie Cullinan, RRT, discusses the ever-intriguing topic of AIRWAY CLEARANCE! It's exciting to see the growing number of doctors specializing in bronchiectasis and NTM lung disease. Dr. Losier is one such doctor. Before switching over to NYU Langone for my care, I sought her expertise when I visited Yale for a second opinion. Back then, I saw Dr. Charles Dela Cruz and Dr. Losier was a pulmonary resident working with him. Dr. Dela Cruz has since moved on, and Dr. Losier now leads Yale's Bronchiectasis and NTM Infections Program! My hope is that within the next five years, everyone will have access to this level of specialized care in their communities. Also, a thank you to Insmed for sponsoring this and other educational webinars. Looking forward to the brensocatib study results!! Click to sign up and listen to Yale webinar recording!! #bronchiectasis #ntm #ntmlung #maclung |
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
Categories |
RSS Feed