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My Journey with Lung Disease: Family Connection

Posted on December 20, 2019   |   
Author: Gretchen   |   
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Written by patient and advocate John Torrence

The Infectious Disease doctor told me that this is an extremely rare condition, yet all of his big words sounded strangely familiar. My mother has had a long history lung issues, so I called her and asked her to describe her symptoms and medications. The more she relays to me, the more I remember about her condition. I remember being at her hospital bedside a few years earlier. At 76, my mom was diagnosed with breast cancer and had to undergo a mastectomy. I stayed with her the whole weekend, and what I remember most was the continual stream of doctors coming into her room changing her prescriptions. The Rheumatoid Arthritis doctor put her on steroids. The Infectious Disease doctor took her off, due to her lung issues... Back and forth.

Mom told me she has MAC, which stands for Mycobacterium Avium Complex, and is the most common form of Nontuberculous Mycobacterium (NTM). I remember her joking about it being closely related to Leprosy! Now that's something that should get your attention. It turns out, the sturcture of the bacteria NTM, TB and Leprosy all have the same triple wall around the cell that protect them and make them very difficult to treat. So, structurally the three bacteria are similar, but their effects on the body are different. After we finished joking about my mom having Leprosy, she also mentioned that she has something called Bronchiectasis. In three years of going to doctors, I have not heard my doctors use that term, but I planned to find out what it was.

At my next Pulmonology appointment, I reported to the doctor everything my mom had told me. He seemed unimpressed that my closest living relative has the same rare disease that I have. I mentioned Bronchiectasis, and I asked if I have that as well, and if NTM and bronchiectasis were connected, but I didn’t get much helpful information from him. I did notice, however, that my after-visit report from him indicated that I had "Acute Exacerbations of Bronchiectasis.” I am not sure if he indicated this on the report because I had mentioned bronchiectasis or because I was indeed experiencing an exacerbation of bronchiectasis. I wasn’t sure what an acute exacerbation was, but it seemed like if I was experiencing one, he should have noticed long before I brought it to his attention. I started to become concerned about the doctor’s knowledge of my condition(s).

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Categories: Awareness

My Journey with Lung Disease: Initial Diagnosis

Posted on December 09, 2019   |   
Author: Gretchen   |   
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Written by patient and advocate John Torrence

We very much appreciate that a fellow BronchandNTM360social community member and NTM patient is willing to share his journey with us. He will take us through his initial symptoms, diagnosis, identification of a clear family connection, his experience at a well-known health center and what the future may hold. This is the first blog in a series where John will take us through his experiences with lung disease.

I cough. You cough. We all cough from time to time. Ten years ago, the coughing began, occasionally at first and soon with great frequency. I attributed this to a cold, allergies or dust from work. I took every medication in the flu and cold aisle and ate cough drops, “like they were candy,” according to my wife. My local physician attributed the cough to the same allergies, cold, etc. as I had. It did seem seasonal and by the third year I was able to start anticipating the cough.

Eventually, as for most, the cough became chronic and intolerable. I had an x-ray that showed a white line on my lung. The doctor declared Pneumonia and I was prescribed a 10-day dose of antibiotics. I had no relief and once again went to see my physician. This time I was prescribed another type of antibiotic. My exhaustion reached new levels and I was napping every afternoon, thinking I was tired due to my work schedule. My wife chalked it up to laziness. I was so physically tired from the coughing I stopped in at a clinic and insisted the doctor see me. Upon another chest x-ray, this doctor called me to come back in and to bring my wife along. I knew there was something much more serious than a cold going on inside of me.

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Tags: NTM diagnosis NTM Lung Disease
Categories: Awareness

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

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

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

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

Lend Your Voice to Raising Supplemental Oxygen Awareness

Posted on August 02, 2018   |   
Author: Gretchen   |   
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Mary Kitlowski, a member of BronchandNTM360social and COPD360social is in search of individuals who use supplemental oxygen (or a friend or family member who does) to share their stories. In childhood Mary was diagnosed with a rare genetic disorder called Primary Ciliary Dyskinesia (PCD) and later Bronchiectasis. She’s always had a passion for running and created an organization called Running on Air seeks to advance awareness of lung diseases and other rare illnesses, to raise funds for organizations that seek to raise the same awareness and to inspire anyone who suffers with a disability to continue to exercise and live a healthy existence no matter the condition.

For much of the month of August, Mary hopes to share a story a day about individuals who use supplemental oxygen. She also plans to create a supplemental oxygen fact sheet. If you or someone you know would like to share your story and lend your voice to raising awareness on supplemental oxygen, please send your story and photo(s) to: by August 10, 2018.The stories and photos will be highlighted on Running on Air’s Facebook page.

The story should include:

  • 1-3 paragraphs
  • Why is the individual on oxygen?
  • What has changed due to the supplemental oxygen?
  • Have any obstacles been overcome due to the oxygen therapy?
  • Since beginning supplemental oxygen, what can the individual no longer do?
  • Anything else that may be relevant to the story
  • A photo with the supplemental oxygen, if possible

Thank you for considering a contribution to this important endeavor. An unknown author said, “One voice can make a difference. A million can change the world.” We have to begin somewhere.

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Tags: Awareness Bronchiectasis Running on Air
Categories: Awareness

COPD, Bronchiectasis and NTM Webinar Recording

Posted on July 09, 2018   |   
Author: Gretchen   |   
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We hope you were able to join us for our June 2018 webinar with expert speaker Dr. Charles (Chuck) Daley. We are pleased to offer you the FULL RECORDING of this event. This recording is free and can be accessed at any time.

During the 60-minute webinar, Dr. Daley offered an overview of COPD, bronchiectasis and NTM, including how these conditions relate to one another as well as treatments for each condition. There were two live question and answer sessions during which members of the audience were given the opportunity to ask questions of the expert speaker.

Dr. Charles (Chuck) Daley

National Jewish Health, Denver, CO, USA


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Tags: Awareness Bronchiectasis Treatment Bronchiectasis; NTM; Research COPD NTM Treatment
Categories: Awareness

Event Alert: An Introduction to Bronchiectasis & NTM Webinar

Posted on June 01, 2018   |   
Author: Gretchen   |   
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The COPD Foundation is convening a webinar to educate the COPD community on bronchiectasis and NTM lung disease. Join us for An Introduction to Bronchiectasis and NTM on Wednesday, June 20th from 1:00-2:00pm ET. Expert speaker, Dr. Charles Daley from National Jewish Health will provide an overview, covering the agenda items listed below, and answer questions that community members may have. This event is free, at no cost to the participants, but registration is required. Please click here to register for the event and mark your calendars! You will receive an email with connection instructions upon registering.

An Introduction to Bronchiectasis and NTM

1:00 – 1:05 pm Welcome and Introduction – COPD Foundation

1:05 – 1:20 pm Overview of COPD, Bronchiectasis and NTM – Chuck Daley, MD

· What are COPD and bronchiectasis? 

o How do they relate?

o How do they differ?

· What causes these conditions?

· What are common symptoms of these conditions?

· How are they diagnosed?

1:20 – 1:30 pm Questions and Answers

1:30 – 1:45 pm Overview of COPD, Bronchiectasis and NTM – Chuck Daley, MD

· What are NTM?

· How do they relate to COPD and bronchiectasis?

· How are NTM treated in these conditions?

o How is treatment similar?

o How is treatment different?

· What resources are available for patients?




1:45 – 1:55 pm Questions and Answers

1:55 – 2:00 pm Closing Remarks COPD Foundation


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Tags: Bronchiectasis COPD Education Dr. Charles Daley NTM
Categories: Awareness

Applying for Disability Benefits

Posted on April 02, 2018   |   
Author: Gretchen   |   
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This blog post was written by Cynthia Flora, patient advocate and head of NTM Support Group

Applying for disability with the Social Security Administration (SSA) can be a daunting task, but also is working with chronic lung conditions. My best piece of advice is EDUCATE YOURSELF AND PUSH FORWARD. If your symptoms and/or side effects from medications are making it difficult to work, think about getting more information and possibly applying. Typically, this process gets more difficult each year as the agencies have less money and our population ages. The level of difficulty will depend in part upon your local office.

I was lucky enough to find knowledgeable, kind employees that I could sit down with and actually helped talk me through the process. Go in armed with a clear one-page synopsis of dates, diagnoses, symptoms, and ways your condition affects your work, etc. You can always expand from there. If you cannot go in person and have to do it via phone, I would not recommend spending much time with a worker who is not being helpful, even though you may have to wait for another phone rep. Keep in mind that a bit of kindness and gratitude on the phone often goes a long way when you are asking someone to help.

Everyone is on his or her own journey. As for me, not long after I began a three year stint on the "big three antibiotics", it was obvious to me that my new job should be staying well. Exhaustion and the fear of getting the flu or an upper respiratory infection every time I used a phone, computer, or fax machine that a sick co-worker had just touched made work a huge impediment.

In general, the older you are, the sicker you may be, and the more difficulties you face doing your current job are key factors. You do NOT want to put a brave face on your condition. You want them to understand how difficult your worst days can be. If awarded disability your monthly payment will be the amount you would receive had you remained working and applied for Social Security at your full retirement age. This varies with age due to the government chipping away at benefits. You can look it up on your individual SSA account or call the SSA if you can't figure it out.



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Tags: Applying for social security bronch and NTM disability respiratory issues
Categories: Awareness

A Dive Into Bronchiectasis and NTM Town Hall Teleconference Recording

Posted on March 26, 2018   |   
Author: Gretchen   |   
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A Dive into Bronchiectasis and NTM Town Hall Teleconference Recording

We hope you were able to join us for our March 2018 A Dive into Bronchiectasis and NTM Town Hall Teleconference. We are pleased to offer you the full recording from this event. The recording is free and can be accessed at any time.

During the 60-minute teleconference, expert speaker Dr. Tim Aksamit offered an overview of bronchiectasis exacerbations, including the treatment and prevention of exacerbations. He also covered environmental factors associated with NTM and the treatment of NTM lung infections, along with other comorbidities of bronchiectasis. There were two live question and answer sessions during the call comprising more than one-third of the hour.

Tim Aksamit, MD

Mayo Clinic, Rochester, MN, USA

Tim Aksamit is a consultant and associate professor in the pulmonary disease and critical care medicine division of Mayo Clinic, Rochester, MN, USA. 

Dr. Aksamit received his undergraduate degree in chemistry from the University of Illinois in Urbana, IL; medical degree from Northwestern University in Chicago, IL, and medical training in internal medicine as well as pulmonary and critical care medicine at the University of Iowa in Iowa City where he also was a chief resident. Additional research was completed at Hammersmith Hospital in London, U.K. Prior to joining the staff at Mayo Clinic in 1998 he was in private practice in Madison, WI. He has also previously served as the director of the medical intensive care unit at St. Mary’s Hospital Mayo Clinic, Rochester, Minnesota.

Dr. Aksamit’s research and clinical interests have focused on mycobacterial disease and bronchiectasis. He has co-authored a previous international statement by the American Thoracic Society and Infectious Disease Society of America on the diagnosis and treatment of nontuberculous mycobacterial disease as well as collaborated as an investigator on a number of multicenter clinical trials involving mycobacterial disease and bronchiectasis. Dr. Aksamit has assisted in the development and implementation of a collaborative tuberculosis clinic project between Mayo Clinic and the Olmsted County Public Health Department and has served as the medical director since its inception in 2001. He currently serves as chair of the U.S. Bronchiectasis and NTM Research Registry. Other positions held include chair of the State of Minnesota Tuberculous Advisory Committee as well as director of the Mayo Mycobacterial and Bronchiectasis Clinic. 

The COPD Foundation would like to thank Dr. Aksamit for his participation in this Bronchiectasis and NTM Town Hall. Stay tuned for information on upcoming events!

To access the free recording, click here.

This activity was made possible by a generous grant from Insmed Incorporated.

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Tags: Aksamit Bronchiectasis; NTM; Research Research Town Hall
Categories: Awareness

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