Blog

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.

---

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.

This article was reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

Mycobacterium avium complex (MAC) is a type of nontuberculous bacteria that occurs naturally in our environment. It can be found in soil, dust, and water including naturally occurring water sources (e.g., lakes, streams, and rivers) and municipal water sources (e.g., water from a faucet or shower).¹ In most people, MAC does not cause illness. However, people with immune systems that do not work well or have lung disease, such as chronic obstructive pulmonary disease (COPD) and/or bronchiectasis are at a higher risk for developing MAC lung infections.² MAC lung infections can cause fever, cough, fatigue, weight loss and shortness of breath.

MAC lung infections are diagnosed by a combination of physical exam findings, specialized imaging (chest CT scan or lung X-ray), and laboratory tests to identify MAC in cultures of mucous spit up from the lungs.² Primary treatment for MAC typically includes antimicrobial therapy.³ A combination of different medicines are used because some MAC infections can be resistant to certain types of antibiotics.² Using multiple antibiotics reduces the chance that MAC can become resistant to the antibiotics. The decision to start antimicrobial therapy for MAC should be individualized based on a variety of clinical factors, individual patient priorities, and potential side effects.³

Researchers are currently conducting two (2) clinical trials to study a treatment and patient outcomes for newly diagnosed MAC lung disease patients:

• The ENCORE study will assess a study drug as a potential treatment option for patients newly diagnosed with a MAC lung infection.
• ARISE is a study looking to validate patient-reported outcome instrument(s) for use in newly diagnosed MAC lung disease patients. Patient-reported outcome instruments are important to accurately assess the impact of a disease and/or treatment on patients’ quality of life. ARISE is hoping to investigate which patient-reported outcomes instrument will be responsive and reliable for use among MAC patients.

In order to be considered for either one of these clinical trials participants must be at least 18 years old and recently diagnosed with MAC and have not started treatment. Participants must have a positive sputum culture for MAC within 6 months prior to screening. Those who have received treatment for their current MAC infection or have a history of more than 3 prior MAC lung infections will not be eligible.

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

Non-cystic fibrosis (CF) bronchiectasis is a lung disease characterized by permanent widening of the airways. Patients with bronchiectasis are often burdened by frequent exacerbations (also known as flare-ups) caused by mucus pooling in the airways which can be a host for various types of bacteria. Staphylococcus aureus (staph aureus) is a type of bacteria commonly found in the sputum of patients with bronchiectasis; and yet, little is known about how frequently it is found, which bronchiectasis patients are prone to infection, and the long-term consequences of infection with staph aureus.

Recently, researchers sought to answer these questions by analyzing data the Bronchiectasis and NTM Research Registry (BRR). Data from the Registry was used to compare patients with and without staph aureus to identify any associations between staph aureus infection and pulmonary function tests (breathing tests to determine health and functionality of the lungs), the frequency of exacerbations or “flare-ups”, and the frequency of hospitalizations.

Researchers identified 830 non-CF bronchiectasis patients for the study and placed them into three groups based on status at time of enrollment in the Registry: Group 1) patients with no bacteria known to be associated with worsened outcomes in their sputum; Group 2) patients with staph aureus in their sputum; and Group 3) patients who had other bacteria (e.g., Pseudomonas aeruginosa or Stenotrophomonas) but not staph aureus in their sputum.

Eighty-two percent of participants included in the analyses were female and the mean age was 64 ± 14 years. Most patients (67%) had suffered a flare-up within two years of study enrollment. The average FEV1 (a pulmonary function test value referencing the maximum amount of air forcefully blown out of the lungs in one second) was 70% of predicted, which suggests mild obstructive lung disease.

This blog post was written by Arielle G. Hernandez, MPH, PhD

The COVID-19 pandemic has changed the world, transforming our lives in numerous ways with lasting impact. While the fight against COVID-19 is not yet won, there is at least a light at the end of the tunnel with reopenings occurring across the United States and in other countries. We are coming out of over a year in which we had to avoid gatherings, adhere to social distancing rules, and even now, we wear masks to keep ourselves and those around us safe.

These measures are particularly important to those with underlying respiratory disorders, whose awareness and concern was immensely heightened due to the disproportionate danger this deadly virus poses to patients with bronchiectasis, NTM, or other lung conditions. Despite the unique position and perspectives of this vulnerable population, there is very little description of the changes in care and treatment and clinical characteristics due to the pandemic, including missed clinic visits, use of telehealth, medication and lung hygiene changes, and ways patients are protecting themselves against COVID-19. Additionally, there is a need to capture detailed information on testing and infection with COVID-19, and associated symptoms and treatment. There are also limited epidemiological data on exacerbations suffered during this period and their management. Patient outcomes regarding physical, mental, and social health, as well as fears and anxieties around the disease are another essential layer to create a holistic assessment under these circumstances.

To fill these gaps in research and find better ways to help patients with lung conditions deal with COVID-19 in the short and long term, we designed a study utilizing online surveys with the main purpose of understanding some of the ways the pandemic is affecting clinical care, treatment, and health behaviors. Additionally, we aim to describe symptoms and access to testing for COVID-19 in patients like you.

If you are over age 18 and have a lung condition, you are invited to participate in a remote survey research study. We want to hear from people with bronchiectasis, NTM or Mycobacterium avium complex (MAC) infection, or other lung diseases.

This article was reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

The COPD Foundation, in partnership with NTM Info and Research (NTMir) and National Jewish Health (NJH) is now offering a limited number of NTM patients access to our cost-free home sputum collection program. Instead of having to travel to a lab to get their sputum sample tested, patients will be instructed on how to collect a high-quality home sputum sample and mail their specimen to the full-service mycobacteriology laboratory at NJH, where it will be tested.

As a part of this pilot project, neither patients nor physicians will be responsible for any costs associated with receiving or shipping the home sputum kit, nor will they have to pay for the laboratory testing of their sample.

Now more than ever, the need for home testing kits is essential. While some patients have access to full-service laboratories like the one at NJH, many others commonly face inconclusive or sub-par test results. This often necessitates repeated sputum testing and creates diagnosis and treatment delays.

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

The outcome every patient wants from good communication with their health care provider is a plan. A plan to help them feel better or cope with their condition . However, somewhere between “signing-in” and “riding home” patients often find themselves still with questions and a lack of confidence regarding their needs being met. As a healthcare provider, a respiratory therapist, I want to know that when you leave our time together that you have taken the advice and feedback that I have given you and will do your best to implement the plan at home. The question to be asked is, “How can we improve the communication between health care provider and patient?”

Here are some tips for improving communication with your health care providers to ensure that your needs have been met and all your concerns have been addressed.

• Prepare some talking points: Your doctor or health care provider only gets a “snapshot” of how you are doing when you arrive at your appointment. Sometimes, this “snapshot” is very telling, and your needs can immediately be addressed. Other times, a health care provider requires more background on what symptoms you are experiencing and how your life is being impacted by your condition. Make a list of talking points that you would like to discuss with your health care provider. A list of talking points will help you remember to mention details that may be important for your health care provider know.
• Show and Tell: Your appointment is your time in the spotlight. Share any information that you feel may be helpful in treating your condition. Bring a list of your current medications with you to review with your health care provider. If you are having trouble with a piece of medical equipment (like a CPAP machine or nebulizer), feel free to bring it with you so they can teach you how to use it properly.
• Consider the “buddy system”: Doctor’s visits can provide a wealth of information on your condition. Health care providers can provide feedback, tips, and a plan of care. All these things mount up to a ton of information for the patient to digest. It is easy to miss some important details while you are chatting with your healthcare provider. Consider asking a friend or loved one to come with you to your visit. Having a second set of ears to listen and perhaps take notes may help to catch details that may be missed or forgotten. You can review these details at home together to make sure the advice of the health care provider is implemented and that you are clear on a plan of care.
• Be an active listener. Active listening requires that you fully concentrate on what is being said rather than just passively “hearing” the message of the speaker. Be sure to use eye contact, nod your head when you understand, and refrain from doodling or fidgeting. Feel free to stop the speaker if you don’t understand and ask questions for clarity. I find it helpful to use phrases like, “What I am hearing you say is….” or “This is what I am hearing…. Is this correct?” These types of statements signal to your health care provider that you do or don’t understand the information and feedback that they are giving. At times, it may inspire them to convey things differently. Remember, there are no “stupid questions” when it comes to understanding your plan of care.

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

Sleep impacts every part of our lives and our health. It is essential for immune health and overall psychological and physical health. Sleep is a time for our bodies to rest and repair on a cellular level, for the brain to detoxify, and it helps regulate our hormones and neurotransmitters. Sleep is our greatest recovery tool.

We cannot achieve optimal health if we aren’t sleeping well. When we’re sleep-deprived it is hard to think straight, stay in a good mood, or have a positive outlook on life. On the other hand, a good night’s sleep empowers the body to recover and allows one to wake up somewhat refreshed and ready to take on the challenges of the day.

Insufficient sleep and poor-quality sleep can be due to diverse factors including medications, food sensitivities, chronic medical issues, possible neurodegenerative issues, angst, or depression. Vitamin deficiencies can impact the production of neurotransmitters and sleep patterns.

Many have experienced sleep issues throughout the pandemic due to social isolation and financial concerns- these are issues which many patients with chronic disorders deal with on an ongoing basis.

Between 10% and 30% of adults struggle with chronic insomnia. The numbers are even higher for seniors — 30% to 48% suffer from insomnia. Women have a lifetime risk of insomnia that is as much as 40% higher than that of men.¹

In the beginning of my NTM journey, sleep was never an issue. I was so exhausted from infections stealing my nutrients and my body fighting the inflammation that I slept like a baby at night. Over time, and not in an acute infectious state, sleep became an issue.

---

How We Sleep

Sleep progresses through a series of four stages in which different brain patterns are displayed: three non-rapid eye movement (NREM) stages and one rapid eye movement (REM) stage.

Stage 1, “drowsiness,“ is the transition period between wakefulness and sleep. It’s easy to wake a person during this period. Stage 1 is essentially the “dozing off” stage.

In stage 2, “light sleep,” the brain begins to produce bursts of rapid, rhythmic brain wave activity known as sleep spindle. Body temperature decreases, heart rate slows, muscles relax, and breathing slows. People spend approximately 50% of their total sleep in this stage.

Stage 3 sleep is also known as “deep sleep”. It is harder to wake someone up if they are in this phase. Muscle tone, pulse, blood pressure, and breathing rate decrease as the body relaxes even further. This stage is critical to restorative sleep, allowing for bodily repair, recovery, and growth. It may also bolster the immune system and other key bodily processes. We spend the most time in deep sleep during the first half of the night. From deep sleep, we go back to stage 2 sleep before entering REM sleep, stage 4.

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

Bronchiectasis is a lung disease characterized with enlarged airways that are thickened and/or dilated. Individuals that have bronchiectasis typically have a cough that is usually productive with mucus. Recurrent lung infections or exacerbations can plague those with bronchiectasis. Recently, there has been more awareness of bronchiectasis likely from improved testing techniques which have allowed physicians to recognize and diagnose those with the condition. Interesting data shows that individuals with bronchiectasis live all over the world, are diverse in age groups, and other demographics. This has made studying bronchiectasis to find new therapies and treatments a challenge.

One way to classify bronchiectasis is by severity. The Bronchiectasis Severity Index (BSI) uses information about individuals with bronchiectasis like body mass index (BMI) to predict patient risk of hospitalization and prognosis. BMI is a measure of body fat based on height and weight that applies to men and women. It is an inexpensive, easy method for categorizing weight – underweight, normal/healthy weight, overweight, and obese. There have been several studies that suggest that if an individual with bronchiectasis is underweight or suffers from malnutrition, they have a higher rate of exacerbations, hospitalization, and mortality.^1-3 Thus, better nutrition may be beneficial for managing and coping with the diagnosis. Therefore, if poor nutrition is associated with poor outcomes, improving nutrition of bronchiectasis patients might help to improve or prolong the progression of bronchiectasis lung disease.

Researchers at the University of North Carolina in Chapel Hill recently conducted a study using data from the U.S. Bronchiectasis and NTM Research Registry (BRR). The goal of the study was to assess the relationship between nutritional status of non-CF bronchiectasis patients enrolled in the BRR and other markers of bronchiectasis severity. The study took place using patient data from the BRR over a span of 5 years. Patients were categorized based on their BMI into four groups: underweight, normal/healthy weight, overweight, and obese. The data analyzed for each group included: number of exacerbations and hospitalizations over two years, PFT results, history of hemoptysis (coughing up blood), and history of lung resection (surgery to remove part of a lung or an entire lung). Other patient information like age, gender, race/ethnicity, infection with pseudomonas aeruginosa and/or NTM, smoking status, underlying causes of bronchiectasis, as well as coexisting conditions were also evaluated.

This blog post was written by Katie Keating, RN, MS, patient advocate.

Vitamin D, also known as the “sunshine” vitamin, is vital to your physical and mental health. Although it has the word vitamin in its name, vitamin D is technically a hormone. It is an essential fat-soluble nutrient. Unlike many other essential nutrients, your body can make vitamin D, synthesizing it when your skin is exposed to the sun. You can also get it through foods and supplements.

This blog post was written by Katie Keating, RN, MS, patient advocate.

The COVID-19 vaccine has proven to be 94-95% effective in preventing coronavirus infection.^1,2 This is good news, but it’s important to keep in mind that there is still a chance that you could become infected with COVID-19 or one of the variants. Positive results regarding the vaccine’s effectiveness are allowing for decreased restrictions throughout the United States. As people begin to engage again, adhering to the Centers for Disease Control (CDC) guidelines is of utmost importance, as we are still awaiting herd immunity within our communities. Be on the lookout that these guidelines are constantly changing.