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What is Bronchiectasis, and how can it overlap with COPD?

Posted on October 14, 2019   |   
Author: Gretchen   |   
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Recent research suggests that bronchiectasis is more common than previously thought1, and you or someone you know may be living with this condition. We hope that this article will help to increase your knowledge of bronchiectasis and how it can overlap with COPD. There is power in knowing more about the ways these conditions can be treated to help one live better. This knowledge can also help increase awareness and improve communication between families, friends, and health care providers.

In addition to the details contained in this article, here are a few places to find more information. The Healthy Body, Healthy Mind video series includes an educational program titled Solutions for COPD and Bronchiectasis Patients, which can be viewed by clicking the link. Resources from the COPD Foundation include COPD360social and BronchandNTM360social websites, which host online social communities for members to communicate, share experiences and ask questions. These sites also include many articles, helpful blog posts, educational materials, and information about the COPD Foundation’s research programs.

The name ‘Bronchiectasis’ is derived from the Greek term “bronkhia,” meaning branches of the lungs’ main bronchi (aka airways), and “ektasis,” meaning dilation. Recent research estimates that 340,000-522,000 adults received treatment for bronchiectasis in the United States in 20131. Bronchiectasis develops when the airways are dilated (widened). When this occurs, the lungs struggle to clear themselves of mucus. When mucus is not cleared from the lungs, bacteria can build up. This environment in the lung may lead to repeated lung infections and cause more damage to the already impaired lungs.

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Tags: BronchandNTM360social Bronchiectasis COPD and Bronchiectasis
Categories: Awareness

Avoiding Environmental Exposure to NTM

Posted on September 04, 2019   |   
Author: Gretchen   |   
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This blog post was written by Katie Keating, RN, MS, patient advocate

Summary taken from presenter Rachel Thomson, PhD, MBBS, NTM/Bronchiectasis Patient Conference, May 2019, entitled Environmental Factors & Reducing Exposure

Awareness and prevention of NTMs has changed over the years. While it has been widely known that NTM is widespread in the environment, only more recently are physicians and researchers becoming more interested in where the bacteria actually live and thrive. Research has been conducted to determine this, but more studies are necessary. In addition, to further complicate this issue, not all NTM species have been associated with NTM lung disease. The question patients and their care team face daily is if these organisms are everywhere, how do we control our exposure and prevent new infections? To further complicate the issues, NTM organisms are ubiquitous and are resistant to chlorine, chloramine and chlorine dioxide, which are all used in the disinfection process. In fact, it NTM organisms can grow within the very small diameter within water pipes. Unfortunately, NTM is found in many places, some of which may surprise you. There is hope in preventing infection and precautions that can be taken to prevent contact and ultimately new infection. Rachel Thompson, PhD, MBBS spoke at the NTM/Bronchiectasis Patient Conference in May 2019, about the environmental factors of NTM and reducing exposure. Dr. Thompson’s presentation is publicly available here.

Potential sources for NTM:

· Refrigerator —Especially water/ice systems filters. Some recommend that filters be changed frequently if you use ice or water from inset refrigerator door systems.

· Plastic drinking water filters — Some also recommend replacing granular activated carbon filter every two weeks, as NTM can attach to carbon filters.

· Mesh aerators— Also recommended to be replaced every couple of weeks

· Inhaled aerosols — Many patients avoid hot tubs, but especially those indoors, as bacteria tend to thrive in hot and humid environments.

· Showerhead— Another common source for NTM in the household is in showerheads. Biofilms and the steam during showers can transmit NTM. For this reason, many recommend cleaning showerheads regularly. One method for cleaning is to, hook your showerhead around a plastic bag and soak your showerhead with vinegar for 60 minutes; do not use bleach. Bleaching NTM over time may make them resistant. Some have also found it useful to replace showerheads periodically. It is also important to use adequate ventilation, such as a fan or an open window in the bathroom.

· Soil/planting, particularly peat rich soils —Since NTM are common in soil, many avoid contact with soils if possible. Others have not given up gardening but do use an N95 mask and gloves when exposed to soil. Wetting the potting soil or peat moss before transferring it also helps to limit dust from the soil.

· House dust —As with many chronic lung diseases, it may help to have others do the vacuuming, if possible.

· Stagnation of tap water —NTM can find homes in stagnant water. Some recommend flushing taps for five minutes in basement areas if the water has not been used overnight.

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Tags: NTM NTM & Environmental Factors Sources for NTM
Categories: Awareness

Using Two versus Three Antibiotics to Treat MAC Lung Infections

Posted on August 26, 2019   |   
Author: Gretchen   |   
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Nontuberculous mycobacterial (NTM) lung disease is caused by serious infections brought on by bacteria that exist in the environment. There are many different types of NTM, but mycobacterium avium complex (also known as ‘MAC’) is the most common. MAC is a type of mycobacteria that is naturally found in soil, water and dust and can affect the lungs, creating shortness of breath, fatigue and cough, to name a few symptoms. MAC is currently treated with a multi-drug regimen, usually 3 or more antibiotics, taken for 18 to 24 months. Side effects of this multidrug regimen may be severe, typically including nausea and diarrhea. As one can imagine, both the disease and its lengthy multidrug treatment can impact patients’ quality of life. 

In early 2018, the Patient Centered Outcomes Research Institute (PCORI) approved funding for a “pragmatic clinical trial”, led by Dr. Kevin Winthrop at Oregon Health and Science University (OHSU), that will compare 2-drug therapy versus 3-drug therapy for the treatment of MAC lung disease. Pragmatic trials take place in the setting of “usual care”. The project brings together an important collaboration with patients, patient advocates and clinical stakeholders, including the COPD Foundation and NTM Info & Research.

In this study, 500 adults with the MAC lung infection will be enrolled from 26 sites across the United States and Canada. The team will test and evaluate whether a treatment regimen of 2 drugs is as effective and better tolerated by the patient than a 3-drug regimen. Patients in both treatment groups will receive azithromycin and ethambutol. Group 2 patients will also receive rifampin. Participants are randomly assigned to receive the 2- or 3-drug regimen.

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Tags: MAC MAC Antibiotics NTM OHSU Research
Categories: Research

NTM/Bronchiectasis Patients and Carbohydrates

Posted on June 04, 2019   |   
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This blog post was written by Katie Keating, RN, MS, patient advocate

Eating, breathing and feeling better are part of our daily goals and activities of daily life. What we consume on a daily basis definitely impacts our health and how we feel. A good diet can help to prevent respiratory infections and give our body the energy it needs to do the work of breathing and staying active.

As Hippocrates once said, “Let food be thy medicine and medicine be thy food.” We all wish it were magically possible to eat the right food and to feel better overnight. However, small steps made daily can help you on the road to feeling more energetic.

We must consume the vitamins and minerals our bodies need on a daily basis. When the number of calories taken in is too low to meet a person’s energy needs, the body breaks down fat and muscle for energy. This begins a negative cycle and could cause the breathing muscles to weaken and lead to shortness of breath. This could then lead to decreased appetite and weight loss and the cycle repeats itself1.

Your body produces more carbon dioxide when it breaks down carbohydrates. The extra carbon dioxide must be exhaled so when our meals are heavy in carbs, breathing can become more difficult2.

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Categories: Quality of Life

FDA Workshop: Development of Antibacterial Drugs for the Treatment of Nontuberculous Mycobacterial (NTM) Disease

Posted on April 17, 2019   |   
Author: Gretchen   |   
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This blog post was written by Gretchen McCreary, Research Coordinator, COPD Foundation

The Food and Drug Administration (FDA) held a successful workshop on April 8, 2019 entitled, Development of Antibacterial Drugs for the Treatment of Nontuberculous Mycobacterial (NTM) Disease. The workshop panelists included experts in their fields of NTM and Patient-Reported Outcomes (PROs). The goal of the workshop was to discuss clinical trial design related to the advancement of antibacterial therapies to treat NTM. Among the topics discussed, the panelists presented on and delved into the patient perspective for treatment of NTM, lessons learned from completed NTM trials and the implications for future trials, use of patient-reported outcome measures in NTM trials, as well as academic and industry perspectives on various case studies.

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Categories: Awareness Research

Research 101 Webinar

Posted on March 26, 2019   |   
Author: Gretchen   |   
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We hope you were able to join us for our March 2019 Research 101 webinar. We are pleased to offer you the full recording from this event here. The recording is free and can be accessed at any time.

During the 50-minute webinar, Dr. Yawn and Dr. Mularski gave an overview of research, the different types of research, questions to ask before participating in research, as well as a breakdown of clinical terms and “big words” associated with various types of studies. They were joined by Pam DeNardo, a patient partner, who discussed her experience with research along with her participation in the COPD Patient-Powered Research Network.

More about your expert speakers

Dr. Barbara Yawn, MD, MSc Dr. Barbara Yawn, MD, MSc is a long-time clinical researcher studying how to improve respiratory care in rural and primary care settings. She is currently the Chief Science Officer of the COPD Foundation and co-PI of the COPD Patient Powered Research Network.

Dr. Mularski, MD, MSHS, MCR Dr. Mularski, MD, MSHS, MCR, leads health services research in the areas of obstructive lung disease, palliative care, and delivery science at the Kaiser Permanente Center for Health Research in Portland Oregon; he is also a Clinical Professor of Medicine and Senior Scholar of Ethics at Oregon Health & Science University. He practices pulmonary and critical care medicine as a Senior Physician for Northwest Permanente where he also serves as Regional Clinical Quality Lead for COPD and is the Director of Research and Evaluation for the northwest KP region. He is a founding steering committee member of CONCERT and co-PI of the COPD Patient Powered Research Network.

Pam DeNardo Pam DeNardo is a COPD patient of 20 years and an advocate with the COPD Foundation in many positions since its inception. Along with Bill Clark and John Walsh, she started the COPD Foundation's Information Line in 2007. And like many here, she is a firm believer in the importance of research but also its misunderstandings among the patient population.


The COPD Foundation would like to thank Dr. Yawn, Dr. Mularski and Pam DeNardo for their participation in the Research 101 webinar. Stay tuned for information on upcoming events!

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Tags: COPD PPRN COPD Registries Research 101 Research Awareness
Categories: Research

Patient & Caregiver Support

Posted on March 07, 2019   |   
Author: Gretchen   |   
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This blog post was written by Amy Leitman, Director of Policy & Advocacy

As a caregiver for a patient with a chronic illness, your role in helping your loved one manage his or her illness and treatment is a vitally important one. The illness takes a great toll on patients, but it is equally impactful on caregivers and family members in other ways.

Caring for a loved one with a serious illness like NTM lung disease or pseudomonas infection can cause great disruption to your life, as you help your loved one with treatments and the challenges of a changed lifestyle. Chronic illness often makes people feel like they have lost control, or that they are overwhelmed by the enormity of this undertaking. These feelings are normal, and neither caregiver nor patient should push them aside or disregard them. It helps for both of you to know as much as possible about the illness and treatments, so you can make decisions together.

It's important to address the emotional and physical issues you face, because each patient needs a strong support system, as does the caregiver, to be a strong support to the patient.

From specialists to primary care physicians to pharmacists and therapists, health care providers are often a valuable source of information needed to help with the ongoing long-term regimen needed to treat NTM lung disease, pseudomonas, bronchiectasis, and other related diseases. Caregivers, listen to your instincts and to your loved one as well. Listen and observe for anything out of the ordinary in case it needs to be reported to the doctor.

The BRONCHIECTASIS & NTM INITIATIVE NTM INFO & RESEARCH and the COPD FOUNDATION websites have several resources available to help patients, caregivers, and loved ones, and we encourage you to use them. Each of these websites have online forums where community members connect and interact.

 

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Tags: Bronchiectasis Caregivers NTM patient support
Categories: Awareness Support

MAC Patient Advisor for Study Advisory Panel

Posted on January 17, 2019   |   
Author: Gretchen   |   
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We are looking for 1 additional (male) pulmonary MAC patient advisor for Kevin Winthrop’s PCORI-funded MAC2v3 pragmatic trial!

This is a remote advisor position, no travel for in-person meetings. Note that while this is a 5-year project, a full 5-year commitment to participate is not required. We have 4 patient advisors already identified, and are looking for 1 more to round out the panel.

This study is titled Comparison of two- versus three-antibiotic therapy for pulmonary Mycobacterium avium complex disease (“MAC2v3”). We will prospectively follow patients newly diagnosed with NTM who are randomized to either a 2-drug or 3-drug treatment regimen. Our objective is to determine whether or not a 2-drug treatment regimen is better tolerated and as effective (based on culture analysis) as a 3-drug regimen.

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Tags: MAC NTM NTM Research Patient Advisor
Categories: Research

Managing Stress with Bronchiectasis and NTM

Posted on November 28, 2018   |   
Author: Gretchen   |   
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This blog post was written by Jane Martin, BA, LRT, CRT

If you have Bronchiectasis/NTM, you well know that the effects of this disease can result in major changes to your lifestyle and activities. And these changes, and challenges, are bound to cause stress. Looking at common causes of stress (stressors), coping skills and techniques, and how to use a stress log for managing stress brought on by Bronchiectasis/NTM are valuable ways to improve daily life.

Let’s start by looking at some stressors commonly found with Bronchiectasis/NTM. You may have one or more of these, and you may have others that are not on this list.

  • Eating issues and digestive problems
  • Body image issues with low weight
  • Uncontrollable cough leading to embarrassment and/or social isolation
  • Side effects of strong, frequently-used antibiotics
  • Gastro-esophageal reflux disease (GERD)
  • Fatigue or Exhaustion
  • Cancelling plans due to not feeling well

So, what does it take to get through this stress? It is important to note that what works for one person may not work for another. Here are some examples of coping skills and techniques that may be helpful.

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Tags: bronch and NTM coping with chronic illness Quality of Life Stress with bronchiectasis Stress with NTM
Categories: Quality of Life

Preventing Winter Exacerbations in Bronchiectasis and NTM Patients

Posted on November 20, 2018   |   
Author: Gretchen   |   
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This blog post was written by Katie Keating, RN, MS, patient advocate

Exacerbations and flare-ups are a part of life for many bronchiectasis and/or NTM patients. A flare-up is when your everyday symptoms worsen; such as on humid or rainy days. Exacerbations, however, last longer and are more serious. They usually happen when a respiratory infection causes inflammation, excessive mucus, fever, increasing cough, shortness of breath, or reduced lung capacity, as noted on pulmonary function tests.

Unlike flare-ups, exacerbations can have permanent effects. Some patients’ conditions may never get back to where they were before the exacerbation. This often is the case following a pseudomonas infection.

As a patient and a nurse, I made light of my exacerbations in the past, just figuring that another round of antibiotics was part of the journey. Little did I realize the impact long-term antibiotics would have on my gastrointestinal and genitourinary tracts. I now take a more proactive approach to prevent any possible infection from invading my body and avoid antibiotics as much as I can.

Winter weather causes an increase in symptoms because cold air is denser, drier, and more difficult to breathe. Airways and nasal passages may be dry, causing inflammation that worsens symptoms, increases mucus production, and increases your risk of illness or infection. In cold weather especially, individuals at risk of infection should try to do everything possible to keep your body strong and prevent acute exacerbations.

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Tags: Bronchiectasis exacerbations NTM prevention of exacerbations Quality of Life Winter exacerbation
Categories: Awareness

Physician Update on Respiratory Disease Treatment: Inhaled Corticosteroids vs. Oral Antibiotics

Posted on September 12, 2018   |   
Author: Gretchen   |   
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This blog post was written by Beth McKnight, Patient Advocate, with the help of a Patient Advisory Panel.

Researchers at Oregon Health and Science University have found that long-term treatment of respiratory diseases with inhaled corticosteroid drugs actually increases the risk of serious lung infections.

The study, presented at the 2018 American Thoracic Society International Conference, focused on adult patients with bronchiectasis, whose bronchial tubes are thickened from inflammation and infection, preventing the clearing of mucus. Bronchiectasis, most accurately diagnosed by a CT scan, is on the rise in the U.S.

Dr. Emily Henkle, presenting author, said the team found that inhaled corticosteroid use increased the risk of hospitalized infections, and no evidence exists that they prevent exacerbations or progression of the disease. The study examined Medicare data from 90,000 patients who used either inhaled corticosteroids or the oral antibiotics azithromycin and erythromycin. The study found an increased 39% risk in the corticosteroid group as compared the group taking the oral antibiotics.

However, Dr. Henkle cautioned, potential risks exists with taking just one antibiotic long-term, such as the development of antibiotic resistant bacterial lung diseases like Mycobacterium aviumcomplex (MAC or MAI) and other nontuberculous mycobacterial infections.

What does this mean for physicians who treat patients with bronchiectasis and other lung diseases?

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Tags: Bronchiectasis Bronchiectasis Treatment inhaled corticosteroid drugs MAC oral antibiotics
Categories: Research

World Bronchiectasis Conference 2018-Patient Session Recordings

Posted on August 27, 2018   |   
Author: Gretchen   |   
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Chronic illness affects every aspect of a patient’s life. Research and new therapies are essential to improve the health and well being of those affected with chronic illnesses.

Georgetown University and MedStar Health recently held patient sessions at the World Bronchiectasis Conference this past July. Experts in the field were brought together to discuss the newest research focusing on bronchiectasis and nontuberculous mycobacterial lung infections.

If you were unable to attend, we now have the recordings available from the 6 sessions geared toward patients.

Topics Include

  • Finding physician expertise in my community
  • Pulmonary and ID interaction
  • Nutrition
  • Dealing with the laboratory
  • Obtaining appropriate medications

If you were able to join, please let us know what you found most valuable as a patient or what you wished to have learned more about. You can post your responses on BRONCHANDNTM360SOCIAL or email us at INFO@BRONCHIECTASISANDNTMINITIATIVE.ORG.

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Tags: Basics of Bronchiectasis Bronchiectasis Bronchiectasis Treatment Bronchiectasis; NTM; Research NTM Research World Bronchiectasis Conference 2018
Categories: Research

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