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 ..read more

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. ?Str ..read more

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 (especial ..read more

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 lif ..read more

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 ..read more

I felt like a movie star years ago, walking into the Sean Parker Voice Institute in New York City. The halls were lined with signed photographs from famous actors and singers. Not being able to carry a tune made me feel out of place, but, hey, I was there to find out why I was often hoarse.  While I was sitting on the exam table, talking to the doctor, I cleared my throat. “Don’t do that!” she said.  “Clearing your throat is harsh on your vocal cords and can cause inflammation.  Instead take a sip of water. And, if you don’t have water available, try to suppress the urge.” I ..read more

Some with BE take showering precautions to limit exposure to steam that can harbor lung pathogens. This concern can make traveling tricky. So, let’s brainstorm about our bathing and showering options!! One solution is to find accommodations that have a bathtub. Another is to see if the accommodations have showers with a handheld fixture that allows one to target the water and minimize steam exposure.  This is my go-to method in my NYC apartment, and it works great! In addition, think about the following: *Let your tap, toilet and shower run for several minutes before using water ..read more

Some of us with bronchiectasis choose to take drinking water precautions to prevent bacterial infections. We drink water that is sterile. Options are: *Water from a Lifestraw pitcher or water bottle with filters (NOT a Brita filtering device).  *Water from a UV water bottle or treated with a Steripen *Bottled spring water  *Boiled water When traveling, some of these options might not be available or practical, but generally speaking, we can find one that works for us. I used the Steripen regularly during my trip in October to Italy and also when necessary bought bottled water. I ..read more

Planning for a trip? Here’s how to pack smartly for your self-care needs, especially those related to airway clearance. Know your limits: Consider how many bags you can handle comfortably. If you’re flying solo, packing light is key! Pack a carry-on specifically for your healthcare needs. Most airlines allow a medical bag with a doctor’s note. To vest or not to vest? Some people rely heavily on their airway clearance vest and will need to take it along on all trips and others have the option of traveling without it. Talk to your medical team about travel options without the vest. Vest ..read more

Struggling with lung issues? Choosing the right nebulizer setup can make a big difference! Several years ago, I upgraded to the Ombra system from Monaghan and Trudell International.  This more powerful system is what National Jewish Health (NJH), a top US lung hospital, recommends to their patients. While I haven't received care there myself, I trust their expertise. As a BE consultant, I often hear what clients treated at NJH are instructed to do. In all cases, they've been advised to use an Aerobika with an Aeroelipse XL cup and an Ombra compressor.  It's important to note that ..read more