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This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

Summer fun and great outdoor weather are approaching. Sunshine is uplifting to most of us after being indoors through a long and challenging winter. By taking specific precautions throughout the summer, you may lessen your chance of getting an NTM infection or experiencing a flare-up. Educating yourself on these suggestions may enable you to truly enjoy your summer and avoid infection.

Below are some excerpts that are taken from the paper Reducing Exposure to Nontuberculous Mycobacteria (NTM), by Joseph O. Falkinham, III, Ph.D. (revised June 11, 2020). Other relevant publications also are referenced.

Flush and run water in unused lines to reduce water age. Water age refers to the time water stays in pipes in houses. The average water age in household plumbing is one to three days. When water stays in your pipes for more than three days it can lead to a loss of disinfectant and may cause NTM and other waterborne germs to grow. Increased water age can occur in plumbing in unused areas of a house (e.g., in an unused bathroom or unoccupied wing of a house). The solution is simple: have someone unlikely to be at risk for NTM disease flush commodes and run water (5 minutes) in taps in unused bathrooms and seldom-used laundry tubs, half baths, and outside faucets.¹

Blogger’s note: Many of us will be traveling over the summer months and it is good to remember the above statement. Rental homes may not have flushed the systems for days before your arrival. Let others who do not have NTM lung disease or sensitive immune systems flush the infrequently used faucets, outdoor faucets, gardening hoses, etc. Doing something as simple as this can save you from getting an infection or reinfection while traveling.

Don’t drink water or use ice from a refrigerator. Many refrigerators come with outside taps for chilled water and ice. Do not use them as high numbers of NTM may be collecting in the refrigerator tap water and ice. The tap water coming into the refrigerator collects in a large reservoir and the warmth of the machinery raises the temperature of the water (before cooling), so the reservoir may contain lots of NTM. Use ice trays and bottles that are filled with boiled (10 min) or 0.2 micrometer-filtered water if you want cold water.¹

Blogger’s note: My refrigerator water filter was tested years ago by the lab at Virginia Tech — the mycobacterium matched what was in my recent sputum sample.

This post was authored by Christina Hunt, BS, RRT.

For many people, the diagnosis of a lung condition can be a very uncertain time. Feelings of worry, fear, and confusion can weigh greatly on those trying to decide their next steps for treatment, adjust to major lifestyle changes, and answer the all-important question of “Why me?” These challenges may seem more difficult for those diagnosed with a rare disease, such as Nontuberculous mycobacterial (NTM) lung disease. For those who have an NTM lung disease diagnosis, there is plenty to unpack in the beginning to understand the disease itself, why they may have been susceptible to this infection, and how they can make lifestyle changes to best manage their condition.

This diagnosis can be a complex one, so let’s start with the basics. There are 190 different types of NTM, but the most common is called Mycobacterium avium complex (MAC).^1,2 This type of bacteria is found in soil and different fresh and natural water sources. NTM lung infections are thought to develop when a susceptible person comes in contact with these bacteria and breathes them into the lungs doing normal daily activities. These daily activities may include showering, bathing, drinking, hand washing, dishwashing, gardening, or just sleeping.³ While the healthy lung can remove NTM and stop these usually harmless bacteria from taking hold and finding “a home” in the lungs, people who have damaged lungs, weakened immune systems, and other predisposing conditions are more likely to become infected and be diagnosed with NTM lung disease.² These lung conditions can include COPD, bronchiectasis, and prior tuberculosis.^2,3 Women who have gone through menopause and people over the age of 65 are also more likely to have NTM lung disease.^2,3 It’s important to note that NTM lung disease is not spread from person to person like its more well-known relative, tuberculosis.²

While NTM lung disease is considered a rare disease, rates have been increasing throughout the world. The increasing rate is likely due to more patients developing the infection, as well as due to improved testing methods and increased awareness of the condition.² Patient symptoms can often be subtle, leading to delays in diagnosis, and may include long-lasting cough with or without mucus, also known as sputum, shortness of breath, weakness, fatigue, weight loss, and at times coughing up blood.²

This post was authored by Christina Hunt, BS, RRT.

Those with bronchiectasis (a lung disease with enlarged airways that are thickened and/or scarred) frequently have a lot of mucus. If a person has normal lungs, they can clear the excess mucus. However, in bronchiectasis, the cilia (tiny hair-like fibers that help to sweep mucus out of the lungs) don’t work well. This causes the mucus to pool and stick to the sides of the airways. When mucus stays in the lungs too long, it can lead to repeated infections causing lung damage.

People with bronchiectasis can be at risk for developing fungal, viral, and bacterial infections. Recent studies suggest that those with bronchiectasis can have high allergen sensitivity rates.¹ In particular, fungi and dust seem to be common allergens in the spring. Learning a person’s sensitivities and preventing exposure to allergens could impact how those with bronchiectasis feel. It may also help them to manage their condition. Now that spring has arrived, let’s explore some ways in which people with bronchiectasis can prevent problems caused by common allergens.

Wear a mask when outdoors and exposed to environmental allergens like dust, pollen, or mold. By wearing a facemask, you may be able to filter allergens and reduce the risk of an allergic response.² Your local weather channel as well as most weather apps will notify you when the air quality is poor. Consider pollen and mold counts before spending extended time outdoors.

Change the filters in your home. Consider purchasing asthma and allergy friendly® filters that can filter out 98% of allergens in the air. Air conditioners can help to lower humidity thereby lowering the chance for mold and fungus to grow. In addition, portable air purifiers may also be helpful to cleanse the air indoors. Keep your windows closed to avoid outside allergens from entering your home.

Declutter. Most of us are familiar with “spring cleaning.” Getting rid of items that you do not need or use may help to make it easier to clean and dust your home. Vacuum frequently to keep dust and other allergens low indoors. Consider wearing a mask when cleaning and dusting your home.

This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

Do you occasionally wheeze? Do you become concerned and sometimes confused about the causes of your wheezing? Ongoing wheezing can cause stress and worry to occur. Getting to the root cause of your wheezing may relieve worry and help you to breathe easier.

What is wheezing?

Wheezing is a high-pitched, coarse whistle-like sound made when you breathe. It is the result of air moving through narrowed or partially blocked airways. The breath does not easily move in and out of the lungs.

Many people with respiratory allergies know that wheezing often comes with allergy season. It may also happen because of lung infections like acute bronchitis. But chronic obstructive pulmonary disease (COPD) and asthma are the most common causes.¹

Wheezing is never normal. If you notice it when you inhale or exhale, and particularly if it persists or worsens, you should consult a doctor to find out what is restricting your airway.²

Wheezing is more obvious when you breathe out (exhale) but can also be heard when you breathe in (inhale). The tone of the wheeze can vary depending on which part of the respiratory system is blocked or narrowed. Narrowing in the upper respiratory system may make for a hoarser wheeze.³

What causes wheezing?

Many health problems can cause wheezing, some of the most common include the following⁴:

• Asthma (a lung condition where the airways narrow, swell, and produce extra mucus, making it hard to breathe)
• Allergic reactions often to pollen, chemicals, pet dander, dust, foods, or insect stings
• Bronchitis
• Bronchiectasis (an abnormal widening of bronchial tubes which inhibits mucus clearing)
• COPD exacerbation (a worsening of symptoms)
• Pneumonia (an infection that inflames the air sacs in the lungs and they fill with fluid or pus)
• Obstruction of an airway by an inhaled object or food particle
• Bronchiolitis (a lung infection that inflames airways and causes congestion)
• GERD-related asthma. (Gastroesophageal reflux disease or GERD occurs when acid from the stomach comes back into the esophagus, the tube that connects the stomach to the throat. Chronic GERD is also often associated with asthma, causing wheezing. The two diagnoses often coexist, with each one contributing to the other. Acid reflux can trigger an asthma attack in patients with the condition.⁵)

This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

According to a recent study, people who have asthma and bronchiectasis are more likely to have persistent swelling of the nasal passages (51%) than people without bronchiectasis (36%).¹ This swelling often leads to postnasal drip and coughing that will not go away. Discovering whether a person with bronchiectasis has sinus swelling and/or postnasal drip, will help to improve care.¹

Mucus is important to health. Glands in the nose and throat produce about 1-2 quarts of it throughout the day. Mucus moistens and cleans the nasal lining, adds moisture to the air, filters the air, and helps to fight infection. When too much mucus is produced, it can gather in the throat or drip from the back of the nose. This is called postnasal drip.²

Too much mucus may make your voice hoarse. It can also give you a sore, irritated, scratchy throat.In addition, postnasal drip can make you feel like you need to constantly clear your throat. It also can trigger a cough that will not go away and can be worse at night.³

What Causes Postnasal Drip?

Excess mucus that triggers postnasal drip has many possible causes, including:

• Colds, flu, allergies, and sinus infections
• Certain medications (including some for blood pressure)
• Changing weather, cold temperatures, or very dry air
• Certain foods (e.g., spicy foods may trigger mucus flow)
• Fumes from chemicals, perfumes, cleaning products, smoke, or other irritants
• A deviated septum (the crooked placement of the wall that separates the two nostrils) or some other problem with the structure of the nose that affects the sinuses

Sometimes postnasal drip may not be related to producing too much mucus. It may happen if the mucus is not cleared properly. Swallowing problems can cause a buildup of liquids in the throat, which can feel like a postnasal drip. These problems can occur with age, a blockage, or reflux (also known as GERD).

Treatment Options

Treatment of postnasal drip depends on what is causing it. Antibiotics may be used if your doctor thinks that there is an infection.

Antihistamines and decongestants can often help with postnasal drip caused by sinus and viral infections. They can also work with steroid nasal sprays for postnasal drip caused by allergies. It is a good idea to check with your doctor before taking any over-the-counter antihistamines. Many of them can have side effects that range from dizziness, drowsiness, to dry mouth.⁴

In addition to antihistamines, other treatment options may include an oral decongestant or guaifenesin (a medication that can thin the mucus to help prevent blockages in the ears and sinuses).

Avoid nasal decongestants that constrict blood vessels in the nasal passages unless used under the direction of your doctor.

Be aware that many of these medications are a combination of over-the-counter products. It is important to read the label and avoid taking too much of any active ingredient.

This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

Have you included goals to manage your health in your annual resolutions? Are you having difficulty working towards your new goals? Sticking to goals regarding your health can be hard at times, but the benefits of feeling your best throughout the year will be worth it!

The first step in reaching any goal that follows your care plan is to identify any barriers to setting your goals or self-management. Common barriers include gaps in what you know about your diagnosis; low motivation; lack of time, finances, or support; and expectation of immediate results.¹

Below is a summary of important points gathered from an article entitled, Self-management in Bronchiectasis: The Patients’ Perspective.² While it was originally written for health care providers, I have changed the point of view to give you some valuable insight and ideas for achieving your own goals regarding your health.

You may question if the therapy you are doing is working. Some patients don’t see immediate results and distrust that the treatment is working. However, research has shown that treatments such as airway clearance techniques can help over time. Being consistent and sticking to the care plan recommended by your health care team will help you to feel better and avoid flare-ups over time.

You may wonder whether you are doing the treatment correctly. If you are questioning whether you are performing your therapies correctly; my suggestion is that you consult your health care team. Good communication with your care team can help to answer questions and relieve worries. You may want to ask your health care team about starting a pulmonary rehab program. Although pulmonary rehab is known for increasing your strength and endurance, it can be a valuable tool for education on topics such as airway clearance and nutrition.

Are you struggling to prioritize treatment due to a lack of time? I encourage you to put therapies on your “to do” list daily. It may be helpful to write out a schedule so that you have your medicines and therapies accounted for. Compare your treatment to the safety instructions that they give on an airplane; you must put your mask on first before taking care of anyone else. Taking the time today may lessen the time it could take in the future to go to a doctor’s appointment, get medicines for necessary treatments, rest days, and healing days.

Do you struggle with (or would you like to improve) communication with your healthcare provider?

* Recruitment for this study is closed. Check BronchandNTM360social regularly for other potential research opportunities.

Many in our community know first-hand the complexities of living with bronchiectasis. Bronchiectasis is characterized by thickened or scarred airways which leads to excessive mucus pooling. When the mucus gathers in the airways, it can lead to frequent, burdensome infections. Due to the difficulties in moving mucus out of the airways and the importance to avoid illness, a “day in the life” of a patient with bronchiectasis can often be centered around activities that assist with airway clearance.

When it comes to clearing mucus from the airways, many patients first think about airway clearance techniques and devices. A “normal day” is typically planned around, critical mucus clearance sessions that can involve inhaled medications, the use of a mucus clearing device, and purposeful coughing. These sessions are typically scheduled 2-3 times a day and can last anywhere from twenty to forty-five minutes. Factors like daily exercise and nutrition can also play a key role in assisting with mucus clearance and avoiding illness. Exercise causes rapid, deep breathing which can help to “jiggle” the mucus away from the airways, making it easier to clear. Eating a well-balanced, nutritious diet helps to support a healthy immune system and adequate hydration assists in thinning mucus.

Preventing illness is a priority for individuals living with bronchiectasis. As mentioned previously, fighting infection takes on an essential role. Efforts are made by those diagnosed with bronchiectasis to stay well and avoid catching viruses. Good hand hygiene along with up-to-date vaccinations are recommended. Mask wearing is encouraged to reduce triggers that may cause airway irritation or the chance to become ill.

Living with bronchiectasis is unique from person to person. Whether your diagnosis prevents you from working or whether you hardly notice that you have bronchiectasis at all, making sure you feel your best is of great importance.

LaGrippe Research is looking for individuals who have been diagnosed with non-cystic fibrosis related bronchiectasis and are willing to share their experiences with the condition during a 90-minute interview. LaGrippe is interested in learning about patients’ journey to diagnosis, relationships with their care team, family, and friends and how bronchiectasis affects their life on a day-to-day basis. All responses are completely confidential, and if you are eligible and selected to participate, you will be compensated for your time.

This blog post was written by Katie Keating, RN, MS, patient advocate and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

Tis that time of year when we are setting goals and preparing for the year ahead. I hope and pray that this new year will be a turning point for the coronavirus and other aspects of our lives. We are surviving the pandemic and must acknowledge that we all have a purpose, whether big or small. So, here’s to setting goals for 2022.

Goals are measurable milestones that are established to indicate the success of a plan. Short-term goals are actionable. They can be accomplished in a limited period of time, and frequently lead to achievement of a long-term goal. Long-term goals are the ultimate results desired when a plan is established or revised.

When setting goals, consider what do you treasure in life? What are you really trying to change? What are the pros of making a change? What are the pros and cons of staying the same?

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Set SMART goals

The SMART acronym makes it easy to remember the ideal characteristics of a goal.

Specific — You have a better chance of meeting a goal when you can answer the following six “W” questions about the goal: who, what, where, when, which, and why.

Measurable — A goal is measurable when you can answer questions to show progress and know when it is accomplished. For example, if you have a goal of being more active you could measure your activity by steps with a pedometer.

Attainable — Goals should have small, doable steps planned out that will allow you to attain the goal.

Realistic – Determine if the goal is in alignment with what you value in your life. Unrealistic goals may set you up to feel like a failure.

Timely — Be realistic in setting your timeframes. Some goals may take a week; others can take months or a year or more.

It is important to review your goals frequently. Be prepared to modify them as you achieve or encounter barriers along the way. Think of your list of goals as a care plan that can be adjusted as needed. Never look at the adjustments as failures, but necessary changes at the time.

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Know why you are setting a goal

It helps to remember “the why” behind your goals. Focusing on what is meaningful to you can help you stay the course. Consider the following goals and examples of “the why”:

Nutrition Goal: To eat a nutritious, lung-healthy diet.
The Why: Eating right gives you energy for all your activities of daily living — even breathing! If you’re underweight, your body might have a harder time fighting illness. Eating smaller, more frequent (4-5) meals during the day gives your diaphragm more room to move, enabling you to breathe better.

This blog post was written by Christina Hunt, BS, RRT, Director of Bronchiectasis and NTM Research and Education at the COPD Foundation.

Many of you have probably asked yourself, “What does COPD have to do with bronchiectasis?” That’s a very good question, given the COPD Foundation’s commitment to both communities. Making the connection takes some understanding of the background of both conditions. As November is COPD Awareness Month, I thought that there would be no better time to explain the two and the desire of the COPD Foundation to create more awareness for both conditions. Let’s get into it!

COPD (chronic obstructive pulmonary disease) is an umbrella term used to describe chronic lung diseases including emphysema and chronic bronchitis. It affects over 30 million Americans and is the third leading cause of death in the world. Symptoms of COPD include (but aren’t limited to) shortness of breath, frequent coughing (with or without mucus), wheezing, and tightness in the chest.¹ There are different types of COPD. Each “version” may affect the patient differently and progress at different rates.¹ Therefore, treatment these days is focused on identification of symptoms (or traits) so that medications and therapies can focus on these.²

It has been reported that between 8% and 30% of individuals with COPD also have bronchiectasis.^2,3 Bronchiectasis is a condition in which patients tend to make more mucus. The mucus pools in the airways causing them to be widened and damaged.⁴ Bronchiectasis can be localized (affecting only a specific location in the lungs) or diffuse (affecting all of one or both lungs). Because patients with bronchiectasis have difficulty clearing mucus in their lungs, they are more likely to get an infection.⁴ Just like COPD, there is no cure for bronchiectasis, however there are numerous treatment options in order to combat symptoms and prevent flare-ups.

This blog post was written by Katie Keating, RN, MS, patient advocate and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee

I have learned that most people have never heard of NTM lung disease or bronchiectasis let alone understand what it is like living with such baffling diagnoses. However, the pandemic and the media’s attention to long haulers’ syndrome has shed some light on what it is like to deal with an ongoing chronic illness. Nevertheless, no one truly knows the impact chronic illness has on daily functioning unless he/she is the patient or someone who lives with a patient.

Bronchiectasis and NTM lung disease are often invisible diseases – to a stranger there are no visible signs that we have bronchiectasis or NTM lung disease. As opposed to other chronic diagnoses, we do not frequently use any durable medical equipment. In reality: the many differences in the sequelae of bronchiectasis and NTM lung disease and other chronic lung conditions are huge.

Overall, patients who have been diagnosed with NTM/bronchiectasis may experience a wide array of symptoms after the initial diagnosis. Some may fare well after getting treated and do not have a reoccurrence of infection; others may have ongoing reoccurrences and face lifelong challenges. In this blog, I will point out some challenges that you may face, but at the end of each section, I will give you some advice on how you can tackle these challenges and tips for managing your condition.

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Chronic illness impacts every aspect of your life.

Family dynamics

The stamina needed to deal with basic needs of self/children/family is greatly affected by bronchiectasis and NTM lung disease largely because most patients deal with some level of fatigue. Spouses or significant others may not understand the patient’s endurance and will continue to push their partner to do more than she/he is capable of. It is hard for a young child to comprehend that her mom or dad just does not have the energy to do simple tasks such as help with homework nor attend every school event.

My advice: Patients must prioritize what activities they feel are most important to them. I took a class on energy management while I was a patient at National Jewish and actively chose to use my energy for caring for my young daughter over other possible (and appealing) energy-consuming options.