 A recent bronchiectasis conference revealed a surprising statistic: only 50% of the audience expressed willingness to participate in clinical trials!!!
While some may be hesitant to take medications without more detailed information, there are other ways to contribute to research. Options for Participation: *Surveys and interviews: Participating in surveys helps researchers better understand patient needs and satisfy FDA requirements for patient participation. Many trials cannot move forward without completed surveys from us. *Patient Advocacy Groups: Registries like EMBARC and the COPD Foundation’s Bronchiectasis Research Registry gather valuable data and researchers use it for their studies. *Biobanks: My experience at NYU Langone highlights the diverse nature of research participation. I agreed to participate in Dr. Leo Segal’s biobank (sputum, blood, potentially stool) to understand how factors like bacteria, viruses, fungi and gut health influence disease progression. This research could pave the way for personalized treatments based on individual microbiomes. Let’s educate ourselves about research opportunities and become active participants. Together, we can make progress in developing new treatments for bronchiectasis. Had the researchers asked the audience what percentage of people would like new treatments, I bet the answer would’ve been 100%. To make new treatments a reality we need to step up!!!✨✨✨ #StepUp #NewTreatments #ClinicalTrials #ClinicalTrialSurveys #ClinicalTrialInterviews #MakeADifference #MakeADifferenceToday #Bronchiectasis #a1at #PrimaryCiliaryDyskinesia #phagetherapy #maclung #maclungdisease
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 Many in our bronchiectasis and NTM lung disease communities face daily challenges. But there’s also reason for hope! Exciting new treatments are in development.
While we wait for these advancements, let’s focus on what we can control: optimizing our well-being. This includes: 🌟Nutrition: Prioritize nutrient-rich foods to fuel your body’s natural defenses. 🌟Weight Management: Maintaining a healthy weight can improve lung function. 🌟Exercise: Regular physical activity enhances overall health and lung capacity. 🌟Airway Clearance Techniques: Manage mucus build-up to keep airways clear. 🌟Stress Management: Find healthy ways to manage stress, which can worsen symptoms. 🌟Rest and Sleep: Prioritize quality sleep for optimal healing and immune function. Remember, even the most effective treatments work best with a strong foundation of self-care. Let’s empower ourselves by taking charge of our health, one step at a time. I’ll continue sharing valuable no-cost information through social media, YouTube, my website, my website blog and newsletter. I also offer individual consultations and have a book available on Amazon, “The BE CLEAR Method to Living with Bronchiectasis.” As highlighted at recent conferences like ELF/EMBARC and NYU Langone, innovative treatments are on the horizon. We have repurposed drugs, new medications, inhaled therapies, and even bacteriophages (viruses that target specific bacteria) under investigation. Let’s commit to supporting one another on this journey. Progress, not perfection, is key. Celebrate small victories and remember, you are not alone. We’ve got this! Together, we can navigate this journey and embrace a brighter future. www.letsbecleartoday.com #helpisonitsway #LindaEsposito #bronchiectasis #ntmlung #pseudomonas  When it comes to mask-wearing, there’s no single answer – it’s a personal decision based on individual circumstances.
I wear a mask in specific situations: *Crowded indoor spaces: This includes exercise classes with closed doors, like the Pilates class I attend, even if I’m the only one masked. *Travel: I wore a mask throughout my recent flight from California. I also wear it on trains, buses and the subway. *Hair salons: While I don’t require my stylist to wear one, I appreciate it when they do. I forgo a mask outdoors, in uncrowded spaces like big stores and large restaurants (especially at off-peak hours and with good seating options). However, if a restaurant becomes unexpectedly crowded while I’m dining, I try not to let it ruin my evening out. It’s important to remember that everyone has different risk factors. Some may be immunocompromised, have undergone surgery, have comorbidities or simply feel more cautious. This was evident at a recent support group picnic where half the attendees, even while outdoors, chose to wear masks. I respect their decision completely. Talking to your doctor and respiratory therapist helps to make informed choices about mask-wearing. Ultimately, there’s no single “right” answer. The key is to be respectful of others’ decisions and prioritize your own well-being. #Immunocompromised #CommonVariableImmunoDeficiency #Covid  I have bronchiectasis (BE) and a history of Mycobacterium Avium Complex (MAC-LD) lung infections. 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.
When people have both bronchiectasis and a MAC infection 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. 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. 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 book, “The BE CLEAR Method to Living with Bronchiectasis” available on Amazon, 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, because roughly 30% of those with BE in the US will contract an NTM infection, I feel I should talk about it so people, if they so choose, can minimize their exposure. To learn more about lowering your risks, go to the Resources Page on my website letsbecleartoday.com and scroll to the very bottom where you will see an article from Dr. Joseph Falkinham. Let me know if you have any questions! PS my pulmonologist asked if she could use this photo in her slide presentations to show people what not to do with bronchiectasis and NTM lung disease!!😩😀 #Bronchiectasis #NTM #NTMLungDisease #NTMLungDiseaseSupportGroup #NTMLungDiseaseInfo #falkinham #pneumonia #bronchitis  In June 2021, I began using a vibration vest to manage my bronchiectasis. A month later, I got COVID. Despite only experiencing a headache and fever, I diligently performed airway clearance 3 times a day. This period became an opportunity to get familiar with my vest and I came to view it as a powerful tool in my bronchiectasis toolkit.
Recently, I’ve heard concerns from others about the vest. Some have expectations of expelling large amounts of mucus and feel discouraged when that doesn’t happen. The high cost can also lead to frustration and a desire to return the vest. I understand this sentiment. I faced a hefty co-pay for my vest as well. Initially, I too hoped to see a dramatic increase in mucus clearance. While that wasn’t the case, I remained committed to using the vest twice daily. Six months later, I was thrilled to finally test negative for a chronic MAC infection. It’s important to note that I also made other lifestyle changes during this time. I increased my protein and calorie intake, exercise and focused on stress reduction. Therefore, I can’t solely attribute my improvement to the vest. However, I believe it played a significant role in maintaining my health. Be wary of advice suggesting the vest can replace other airway clearance methods. I’ve heard some trainers tell their clients they no longer need to use an Acapella or Aerobika and there’s no need to nebulize. This is concerning. To my knowledge, no bronchiectasis center advocates this approach. My doctor, a specialist in BE and NTM-LD, emphasizes the importance of using all three techniques. Similarly, National Jewish Health often recommends a three-pronged approach for their patients. The key takeaway is patience. I believe in the vest’s effectiveness as part of a comprehensive management plan. Stick with your treatment regimen, but don’t abandon your other tools. Think of it like protection in a terrible storm: you wouldn’t leave home without a raincoat and boots just because you got an umbrella. All three work best together. BE CLEAR with Bronchiectasis has a consulting relationship with Monaghan Medical #Hfcwo #hfcwovests #airwayclearance #sputum #phlegm |
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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