If you have chronic obstructive pulmonary disease (COPD), you know that it is most often a combination of emphysema and chronic bronchitis. You know it is a chronic, progressive disease with shortness of breath, coughing, wheezing, and tightness in the chest. However, you may not have heard, or know much, about NTM lung disease. It is also a chronic, progressive lung disease that makes it difficult to breathe. In this blog series, you will learn more about NTM lung disease.

What is NTM lung disease?

Nontuberculous mycobacterial (NTM) lung disease is a serious infection caused by bacteria. When it gets into the lungs, NTM bacteria* can invade the cells that are there to protect the lungs from infection. The job of these special cells is to find and eat harmful bacteria, viruses, fungi, and parasites. When this defense system is invaded, it can’t do its job, and that can lead to chronic lung infections and pneumonia. NTM reproduces rapidly and may be difficult to treat. People with NTM lung disease may experience symptoms such as shortness of breath, fever, weight loss, chronic cough, fatigue, and chest pain. Those with NTM lung disease can become seriously ill and may require lengthy hospital stays to manage their condition.
*In this blog from this point on we will refer to “NTM lung disease” when talking about the disease itself, and to simply “NTM” when we talk about the bacteria that causes NTM lung disease.

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It is officially time for Medicare Open Enrollment. Starting from October 15 through December 7 you can review your current coverage, select different Part D drug plans, change between Original Medicare and Medicare Advantage and more.

EVERYONE who is enrolled in Medicare should check on your coverage during Open Enrollment, even if you are 100% satisfied with the service and benefits from your existing plans. Medicare rules shift slightly nearly every year and plans can and do change up their rules, covered services and out of pocket requirements.

We reviewed what you should know about Medicare Open Enrollment and how COPD care is covered during our October 10th webinar, Medicare Open Enrollment: What People with COPD Need to Know. If you missed the webinar, you can still benefit from the outstanding presentation provided by Laurie Thomashow of the Medicare Rights Center.

Click here to access the recording. You can view the slides without the recording here.

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My mother-in-law has a saying that, I am ashamed to admit, has applied to me more times than I can count. Her saying is, "those who can't listen have to feel." It took me a couple of times hearing her say that to really understand what she meant by that, but I get it now and say it to myself and my family ALL the time.

Let me preface my humbling story by mentioning two things: 1) I don't have COPD - I have reactive airways which means my breathing difficulties behave more like asthma. 2) I'm an RT who works for the COPD Foundation, but have worked in many healthcare environments.I mention the first point because while I don’t know exactly how you feel, I can sympathize with the struggle to breathe at times. I mention the second because, well, I should know better than find myself in a situation like I did last night.

So picture it - 9:30 pm on a Nashville evening. 88° with the humidity about 78%. Yes, it was gross and terribly stuffy. But, as has been my habit recently, I set out for what I thought would be about a 45-minute walk with my son and our new dog. The point being to burn off some of the dog's energy before bed and as a bonus - I get exercise.

Several days this week, I have noticed that I am audibly wheezing while just working at my computer - my son and RT husband have also commented on my breathing. Would I ever let a little bit of wheezing stop me? Nope. Should I have paid better attention to the warning it was trying to give? Yep.

So, there we are on our walk, being pulled along by a feisty four-month-old, 30-pound dog in this humid Nashville air that is NOT moving. I mean, I could really feel myself trying to pull air into my lungs as we moved along at a really good clip. My son had stopped to catch a little frog on the sidewalk, but our pup Riley pulled me on down the hill - her nose to the ground following *something.*

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Most people are not aware that common activities such as gardening, walking through a park or even taking a shower can expose them to damaging bacteria known as NTM. These naturally occurring bacteria exist in the environment, specifically in soil and the water supply. Individuals with healthy lungs and are able to fight off these bacteria, but for those with chronic lung conditions such as COPD, the bacteria can be devastating.

NTM is a chronic, progressive and often severe disease resulting in a loss of lung functions. The challenge of NTM is that the symptoms often mimic other diseases, leading to a delay in diagnosis or a misdiagnosis. Symptoms include a persistent cough, night sweats, low-grade fever, fatigue and chronic weight loss. Individuals with COPD are at increased risk for developing NTM lung disease.

If you are experiencing any of these symptoms, it is important that you become more aware of NTM and also ask your healthcare professional about the disease. Many professionals are not aware of NTM, so it may be helpful for you to bring information with you. This valuable website provides a wealth of information about NTM, risk factors, testing for the disease, treatment options, support and much more.

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This article was written by Stephanie Williams, BS, RRT. Stephanie is the Director of Community Programs and Volunteer Management for the COPD Foundation.

“Just the facts, ma’am.” Who remembers that line from the good old days of the Jack Webb TV series, Dragnet? I must confess that I am not old enough to have watched it when it aired originally, but because it was a favorite of my dad’s, I have watched my fair share of reruns on late-night cable TV. Those characters are so easy to see in my mind’s eye – dark suits, crisp white shirts, thin black ties, and cigarettes.

One night a few months ago, I was reading an article about the harmful effects of e-cigarettes and vaping. That article was a little frightening. It stated that some of the components of the e-liquid degrade into chemicals like formaldehyde and acetaldehyde – both of which are cancer- causing agents. It also included instances of the lithium batteries that power the devices unexpectedly exploding into the face and eyes of the smoker. This article also linked to another, which pointed to more startling findings, such as some of the flavored e-liquids having been linked to a serious and permanent lung disease called bronchiolitis obliterans (BO) or “popcorn lung.” (Here is more information about bronchiolitis obliterans if you are interested.) Those articles got me thinking about my Teaching with a Twist series and how we might have an open discussion about a touchy subject.

I started reading articles about the impact of popular culture and influential people on the rates of smoking in the U.S. and it took me down some interesting paths. Back in the 1920s through the mid-1950s, advertising for cigarettes was front and center in magazines. Tobacco companies even used phrases that characterized smoking as a wholesome activity. Many advertisements showed pictures of doctors smoking and declaring that they preferred a certain brand over others. Can you imagine going to see your pulmonologist nowand having him encourage you to switch to his favorite brand of cigarettes? No way! But at one time this kind of promotion happened – a lot.

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The COPD Foundation is thrilled to announce that we have recently reached our 40,000-member milestone for COPD360social, our online community, and that number continues to grow every day! This is a huge testament to all COPD360social community members and an immense sense of pride for members of the Foundation. We sincerely thank you for your ongoing participation and support – we need you to help us realize our mission to prevent and cure COPD and help everyone affected by this disease.

When COPD360social launched in November 2014, little did we know where we’d be today. As Bill Clark, Senior Director of Community Engagement and COPD360social community manager since January 2014, explains, “When we launched COPD360social, we weren’t really sure what would happen. We never envisioned that the community would become what it is today – the voice of the COPD community. It’s a place for everyone and anyone affected by COPD to ask and answer questions, share personal stories, give and receive support and express their joys as well as frustrations. It’s truly been a lifeline for our members and we couldn’t ask for more.”

So, what’s been the secret to the community’s success and its phenomenal growth over the years? “We’ve never had to advertise, it’s all been word-of-mouth,” says Bill. “And what’s interesting to see after all these years, community members not only make sure false or misleading information is quickly corrected and/or removed but many have also taken on several of my ‘official’ duties – whether it’s welcoming new members, reaching out to people who have been newly diagnosed, providing encouragement and advice and, perhaps most rewardingly, forming genuine friendships.”

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As a respiratory therapist I have a love/hate relationship with inhalers. The thought of having a month’s supply of respiratory medication in a portable delivery system is great and they can be incredibly helpful to people with a variety of health conditions Notice I didn’t say that they are easy to use? The idea is a great one, but research shows that approximately 94% of people don’t use their inhalers correctly. Part of the problem is that there are different methods for each different type of inhaler on the market.

There are 13 inhalers commonly prescribed for COPD. You may have had a variety of them prescribed to you at different times as your doctor was trying to find the right treatment plan for you. With so many different medicines available, there is a lot of potential for people to use them incorrectly. Think back to a time when you were prescribed a new inhaler. Were you educated about what the medicine was being prescribed for? Did someone instruct you on when you should take the medication? Were you shown, and then encouraged to demonstrate, the proper steps to activate the inhaler with maximum effectiveness?

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I love riddles. I love to figure them out, I love to create them. But there is one riddle that I encounter often as a respiratory therapist that I wish we could solve for everyone with COPD: which came first, trouble breathing or anxiety?

We see people asking about anxiety on COPD360social a lot. People ask if anxiety is ‘normal’ or if anxiety can make breathing worse. Some people ask if anxiety can cause breathing problems or if breathing problems cause anxiety. I think those are really good questions. You may be wondering these same things yourself. For any number of reasons, you may not have talked with your doctor about these questions, but I would encourage you to mention them to your healthcare team. Anxiety and breathing problems are so common, it would be more surprising to find someone with COPD who doesn’t experience some anxiety.

I remember a personal situation from a few years ago, when I was at work as an RT in a hospital. I was having a medical issue that made it hard for me to get my breath. My boss instructed me to go to the ER where I was treated for the issue, but I will never forget how my anxiety was dismissed and minimized. The nurses told me that I should “calm down” because I was making the situation worse. I was irritated because they obviously didn’t understand how it felt to struggle for air. I told them that they would be anxious, too, if they couldn’t get their breath. I will never forget that incident. It changed the way I interacted with anxious patients after that.

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Sometimes making a decision is easy and sometimes it’s not. Often, the more major a decision, the more we may find ourselves weighing the pros and cons, the risks and benefits, before committing to a way forward.

This is often the case when faced with making a medical decision about treatment. In some cases, the options are very clear and the decision easy. In other cases, however, more risk may be associated with a particular treatment, especially if the treatment option is new, which can make the decision all that more difficult.

For individuals with severe emphysema, making decisions about treatment options is challenging because there aren’t that many treatment options available. Lung volume reduction surgery is one such option but not all patients are appropriate candidates and the surgery carries a high morbidity rate. Medical management, pulmonary rehabilitation and long-term oxygen therapy are also standard treatments, but patients often remain symptomatic.

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Beginning January 1, 2019 changes will occur to how the Centers for Medicare and Medicaid Services (CMS) will pay oxygen suppliers for delivering supplemental oxygen and oxygen equipment to patients. During this time, CMS will suspend its current payment system, known as competitive bidding.

The COPD Foundation is concerned that this change may have an impact on people who use supplemental oxygen and we are standing by to hear from you about your concerns, so that we can reach out to CMS. We are coordinating with fellow patient and healthcare professional organizations on this important access issue.

Please email statecaptains@copdfoundation.org or call 1-866-316-COPD (2673) Monday-Friday between 9am-6pm if you are experiencing any problems as a result of this change or if you have been contacted by your patients or suppliers about required changes to their prescriptions. We want to understand the issues and make sure that we are communicating these problems to decision makers in an expedient way.

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The COPD Foundation would like to celebrate and honor veterans for their service and sacrifices! Veterans are an integral part of our community and 360social network. Did you know that veterans also have a higher risk of being diagnosed with COPD?

Deployed soldiers are often exposed to dust, chemicals, fumes, and sand for long periods of time. Soldiers are also commonly breathing in air pollution and smoke from burn pits used for waste disposal. On top of these hazards, there is a higher prevalence of tobacco use in the military.

Chronic and daily exposure to these conditions can lead to airway irritation, cough, lung damage, shortness of breath, and respiratory tract infections but an NHLBI survey showed that veterans who experience breathing issues are less likely to talk to their doctors about the symptoms.

COPD is a leading cause of morbidity and mortality within Veterans Health Administration. One study revealed that sixty nine percent of deployed military personnel experienced respiratory illnesses and symptoms while in the field. In 2011, respiratory diseases (including COPD) were responsible for over 250,000 medical encounters among active duty U.S. military personnel and COPD was the fourth most common reason for hospitalization among veterans.

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Caroline Gainer is a COPD patient and State Captain from West Virginia. As an advocate she has participated in research initiatives, advocacy efforts with her local, state, and federal officials, and regularly spreads awareness about COPD through local health fairs. To learn more about the COPD Foundation State Captain program, click here!

What is your connection with COPD? What is your COPD story?

In 2013, I went to my annual physical and was diagnosed with COPD. I had no symptoms at the time, so it came as a surprise to me. In September of 2014, my lung collapsed, and I was hospitalized. After my hospitalization, I was referred to a pulmonologist who formally diagnosed me with severe asthma and emphysema. At that time, I was put on medication to help with my constant coughing, and gaging. I remember having to set my alarm clock an extra 30 minutes earlier to get ready for work because I could not stop coughing and felt that I couldn’t catch my breath. Little activities like getting dressed and walking to the car felt challenging.

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