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Bronchiectasis: The Phantom Menace

Posted on January 13, 2020   |   
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You may know that COPD is an “umbrella term” describing progressive lung diseases including emphysema, chronic bronchitis, and refractory (non-reversible) asthma and chronic bronchitis.* But there is another lung condition that is often overlooked because of its similarity to COPD: Bronchiectasis (brong-ke-EK-ta-sis). To help raise more awareness of this condition and who it may be impacting, we’ll be sharing six posts over the upcoming year.

What is bronchiectasis?

Bronchiectasis is a disease of the small airways that leads to damage of the airway walls. This makes it difficult for people to clear out mucus from the lungs by coughing. One of the key differences from chronic bronchitis is that in bronchiectasis, the inner diameter of the airway can actually get wider. That may seem like a good thing but it isn’t. With scarring and thickening of the airway walls, widening of the airways is what makes it harder to clear out mucus. When mucus is not cleared out bacteria can start growing, which can lead to severe and repeated infections.

How severe?

Some people live with both COPD and bronchiectasis and don’t know it. One study found that in one year alone, 93% of these people had at least two health events (or exacerbations) like needing antibiotics, or a hospitalization relating to respiratory infections. Frequent events often result in major flare-ups in symptoms, and can lead to permanent loss of lung function, increase in additional symptoms, higher rates of disability or even loss of life. Even in those who did not experience frequent flare-ups, 90% of those who had pneumonia were found to have some bronchiectasis.

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Categories: Education, Resources and Studies

Diagnostic decisions: what is spirometry and why is it important?

Posted on January 09, 2020   |   
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What is spirometry?

Spirometry is a common breathing test that assesses how well your lungs work. The test measures how quickly and how much air you can breathe in and out.1 It is part of the testing done with full pulmonary function testing which may include other assessments (see below). During normal breathing, air flows in and out of your lungs freely. However, people with chronic obstructive pulmonary disease (COPD) have a hard time breathing out, and therefore too much air stays in their lungs.2 This is known as “air trapping” and is one of the causes of feeling short of breath.2 Spirometry is an important test that should be done in addition to asking about your symptoms and medical history when COPD is diagnosed.2 Spirometry can help decide what medicines you will take and it can be used to follow your lung health over time.2

What happens during spirometry?

On the day of your test, your doctor may ask that you do not take your COPD medicine, do not wear tight clothing, and do not eat a large meal for two to four hours before your test. When you arrive, a person in your doctor’s office will explain the test and what you need to do. The test takes about 30 to 45 minutes to complete.1 Here is what to expect during your spirometry test1,3:

  • You will be seated upright in a chair, and a clip will be placed on your nose to keep you from breathing through your nose.
  • With a mouthpiece connected to the spirometer, you will be asked to take a deep breath in, so that your lungs are completely filled with air, and then to breathe out as hard and fast as you can for six to eight seconds—until your lungs are emptied as much as possible.
  • You will be asked to repeat these steps at least three times to make sure a that the test result is right.

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Categories: Education, Resources and Studies Tips for Healthy Living

What does it mean when COPD symptoms are controlled? Part 2

Posted on December 17, 2019   |   
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As a person living with and being treated for COPD you have your own “normal” (or baseline) symptoms, which can change in type and severity over time as your lungs age.1,2 Knowing your baseline symptom level using the COPD Foundation patient app3 allows you and your clinician to understand when the symptoms are getting worse or becoming uncontrolled (See: What does it mean when COPD symptoms are “controlled”? Part 1 for more information). Following your symptoms and what you can do daily may also encourage you to try and improve your ‘normal,’ giving you a better quality of life.

How are you affected over time with the changes in COPD symptoms?

Many of us cut down on our activity level, whether we realize it or not, to avoid certain COPD symptoms like feeling short of breath.4 Cutting down on physical activity like avoiding stairs or even avoid getting up to get a glass of water can actually work against you - decreased activity can lower your ability to do the things you want to do. It can also increase the chances of having a COPD exacerbation or even being hospitalized.5 Exacerbations or COPD “attacks” lead to more decrease in activity, more shortness of breath and then to greater difficulty doing daily activities, and loss of fitness.6

What is the impact of an exacerbation of COPD?

During a COPD flare up or an acute exacerbation, symptoms worsen, and breathing becomes even more difficult. Exacerbations decrease your overall health, comfort, and happiness (also known as quality of life) and can speed up lung function decline.7 Also, exacerbations can increase your risk of future exacerbation or hospitalizations, and can even be life threatening.7 So, all possible steps should be taken to prevent symptoms from becoming uncontrolled (Suggested reading: Avoiding exacerbations and pneumonia; Staying healthy and avoiding exacerbations; Staying healthy and avoiding Pneumonia).

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Categories: Education, Resources and Studies Tips for Healthy Living

The COPD National Action Plan: Where are we now and where are we headed?

Posted on December 16, 2019   |   
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The COPD National Action Plan, released in 2017, is a guide to how we can improve COPD outcomes in the United States. On November 13th, the community came together to share the progress that has been made against the Plan’s goals and to discuss how we collaborate and track progress moving into the next decade.

The COPD Foundation team was joined by five advocates who ensured the perspectives of those most affected by COPD were heard throughout the discussions. The day was broken into two parts, a morning session full of informative presentations from federal partners, advocacy organizations and health systems, and afternoon discussion sessions to brainstorm on how to effectively collaborate and track progress moving forward.

The day started with Dr. Tony Punturieri from the National Heart, Lung and Blood Institute’s (NHLBI) overview of their priorities and areas of progress such as the groundbreaking results coming from the COPDGene Study. Dr. Punturieri also discussed progress in understanding the role of smoking in COPD development, in dispelling the notion that COPD treatment is a one-size-fits-all approach, and in pushing early-stage disease-modifying research. He noted that they feel “the future and the present for COPD is bright.”

The next panel of speakers from federal agencies highlighted the progress made possible by the National Action Plan and your advocacy efforts. The Centers for Disease Control and Prevention (CDC) presented new data on the burden of COPD and how they are using the Behavioral Risk Factor Surveillance System (BRFSS) data to understand factors that may be associated with COPD outcomes in different areas of the country.

We dedicated much of the first years of our advocacy efforts to getting COPD questions on the BRFSS. Hundreds of patients contacted their state officials to make this happen. The results have yielded treasure troves of data about the burden of COPD in different geographic areas, but that isn’t all it can do. As more attention is focused on COPD in the public health space, the BRFSS COPD questions can now be layered with other data that show patterns of smoking history, comorbid diseases, and other health risk factors. The more we make COPD a part of the conversation in other health priority areas, the greater likelihood it lands on the radar of state and federal agency partners and the greater likelihood we can reach affected individuals.

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Categories: Advocacy Health Policy and COPD

How much do you know about NTM lung disease and it’s connection to COPD?

Posted on December 05, 2019   |   
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How much do you know about nontuberculous mycobacteria (NTM) lung disease and how people living with COPD can be more susceptible to the disease? These informative new videos will help you learn more about NTM lung disease and what steps you can do to limit exposure. Our expert speaker, Dr. Pamela McShane, provides valuable insights on the causes and signs of NTM lung disease as well as information about how those with the disease can participate in a research registry designed to increase knowledge of NTM lung disease.

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Categories: Education, Resources and Studies Health Policy and COPD Tips for Healthy Living

What does it mean when COPD symptoms are controlled? Part 1

Posted on December 03, 2019   |   
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Chronic obstructive pulmonary disease (COPD) is not a single condition1 but includes emphysema (damage to the air sacs of the lung) and chronic bronchitis (chronic cough with mucus production caused by inflammation of the breathing tubes) and leads to shortness of breath.2 Symptoms of COPD vary from person to person and from day to day or by the time of day3 and can include difficulty in breathing (shortness of breath), increased mucus, frequent coughing, chest tightness, and wheezing (whistling sound) when breathing out.2

What does it mean when your COPD symptoms are controlled?

Symptoms are considered under control, or stable, when they are about the same day to day, and allow you to do what is normal for you—functioning at your best.2 Understanding what is “normal” for you—meaning when symptoms are under good control—can be assessed by following your day-to-day symptoms using the COPD Foundation patient app.4 (Suggested reading: The COPD Pocket Consultant Guide Mobile App) Knowing what is normal can help you and your doctor or nurse decide when you are in control or when things are getting worse or out of control. This helps you know if a visit is needed to receive more or different treatments. (See our upcoming post What does it mean when COPD symptoms are “controlled”? Part 2 for more information about baseline COPD symptoms and how to improve your ‘normal.')

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Categories: Education, Resources and Studies Tips for Healthy Living

NTM Lung Disease: What it is and What you Need to Know

Posted on November 05, 2019   |   
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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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Categories: Education, Resources and Studies

Medicare Open Enrollment

Posted on October 16, 2019   |   
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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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Categories: Advocacy Education, Resources and Studies Health Policy and COPD

Teaching with a Twist – Stress and Weather

Posted on September 10, 2019   |   
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Teaching with a Twist – Stress and Weather 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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Categories: Education, Resources and Studies Tips for Healthy Living

Are You at Risk of Nontuberculous Mycobacterial Lung Disease (NTM)?

Posted on August 29, 2019   |   
Author: The COPD Coach   |   
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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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Categories: Education, Resources and Studies Tips for Healthy Living

Teaching with a Twist – Thoughts on E-cigarettes and Vaping

Posted on May 01, 2019   |   
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“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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Categories: Education, Resources and Studies Related COPD News Tips for Healthy Living

COPD360social: 40,000 Strong and Counting

Posted on April 03, 2019   |   
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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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Categories: Community Announcements

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