This week we had such a thought-provoking conversation about supplemental oxygen use on both Facebook and Instagram. Many questions were answered, but of course, like with any rich discussion, many others remain unanswered. I look forward to more discussions and a deeper understanding.
I greatly appreciate respiratory therapist Brian weighing in and saying that not all shortness of breath is treated with oxygen. I found an article by Kathy McNaughton that addresses this situation and gives some remedies. (Edited for length limitations) “How can I be so short of breath, while my oxygen levels are still normal?” Understanding the answer to that is essential in knowing how to proceed. Even if you’re extremely breathless, but your oxygen saturation levels remain in a healthy range, then supplemental oxygen is not the answer. Instead, it’s important to know how to recover from breathlessness. Certainly, resting right away is the first step. Stop whatever you were doing that contributed to you feeling breathless. Respiratory therapist, Mark Mangus, suggests these additional actions: Remind yourself that you know what to do. Taking action can help you overcome the anxiety that often goes along with being short of breath. Position yourself to breathe easier. Leaning forward or bending over helps drop your abdomen away from your lungs, making breathing easier. Lean your arms on your knees or on some stationary object like the wall or a counter. Work on controlling your breathing. If you know how to do diaphragmatic or pursed lip breathing, then do so. ” Let’s continue to educate ourselves so that we can advocate for ourselves and others. Always talk to your medical team before changing your medical care in any way. #Breathlessness #Oxygen #Bronchiectasis #Asthma #COPD #primaryciliarydyskinesia
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Confession time! November’s website blog post completely slipped my mind. Between the holiday whirlwind and a booked calendar, I missed my deadline.
But then it hit me: why stick to just one post a month? There are so many of you who aren’t on social media 24/7, or maybe just haven’t had a chance to catch everything. (I get it, and those those DMs are always welcome!) So, here’s my new plan: a couple of times a month, I’ll go through my social media posts and pick out the ones that resonated most with our bronchiectasis community. The ones packed with info and support, the ones that sparked meaningful discussions. Then I’ll create a permanent home for them on my website blog page. No more missed monthly posts, just a steady stream of the best content throughout the month! I’m planning a series of posts tackling both the basics (diagnosis, treatment) and the nitty-gritty (research, articles), with lots of self-care tips throughout (because feeling our best is key, right?). This journey is for everyone! If something I write is confusing and you have questions, don’t hesitate to ask! No question is too silly and there’s a good chance others are wondering the same thing. And if something sparks your interest, let me know that too! Sharing our curiosity can lead to some fascinating discoveries. So, are you ready to join me in this bronchiectasis exploration? Are you ready to stretch our knowledge and commitment to living our healthiest life? Let’s empower ourselves and each other, one question, one article, one self-care tip at a time! #newbeginnings #Bronchiectasis #COPD #Asthma #CysticFibrosis #Covid #LongCovid #BeClearLivingWithBronchiectasis #LindaEsposito Are you considering antibiotics for a MAC infection? If so, I want to share with you that for the past 2 years I have been on the patient advisory committee for the MAC2v3 study.
The study is designed to test whether two drugs (azithromycin and ethambutol) are as effective in treating MAC as the “big three” (azithromycin, ethambutol, and rifampin). The trial is for 12 months. To participate, you need to be able to produce a sputum sample. They currently have an amazing network of 30+ physicians (including mine!) at 22 sites from Hawaii to New York to Texas to Toronto. And, great news!!! Patients can stay with their doctor and be referred virtually for this study without the need to travel to test sites. If you would like more information, they have a website mac2v3study.org and I have found them to be excellent to work with. Currently, there are about 400 enrollees and they need another 100 to complete the study. Take a look at their website and email them with your questions. Do you prefer to ask me questions or have me e-introduce you to the team? Can do! Just message me and let’s start the conversation. Warm regards, Linda Esposito #maclung #maclungdisease #clinicaltrial bronchiectasiswarrior #bronchiectasis |
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
April 2024
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