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Did you Know? – Exercise Videos

Posted on March 01, 2021   |   

This post was written by Jane Martin, BA, CRT


The COPD Foundation website and Pocket Consultant Guide app have exercise videos you can use at home.

Spring is coming and pretty soon we’ll be able to open the windows and feel the warmth, sunshine, and energy of a new season. You might be thinking, "Energy? Really? I have enough trouble getting to the bathroom, let alone 'feel energy!'"

For sure, it’s been a long, hard winter. But that’s all the more reason to do your best to get up and move. And we can help you do that. The COPD Foundation has seven great exercise videos you can get to easily, any time you want. They all have good, solid, practical information, and they will help you get you moving – safely and effectively. For those of you who already exercise regularly, these videos may help add variety to your routine and work some new muscles.

These videos are led by respiratory, physical, and occupational therapists who are especially trained in helping people with COPD and other chronic lung diseases. They can help you on your way to breathing better while increasing your endurance, flexibility, and balance. And they are filled with exercise tips along the way. I’m here to tell you… this is not about wearing skimpy exercise clothes, sweating, and pushing yourself to the max. This is about starting where you are and learning how to breathe easier with movement and exercise so you can stay active, healthy, and independent.

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Categories: Education, Resources and Studies

COPD Foundation Position on Non-Clinical Retail Oxygen Concentrators

Posted on February 17, 2021   |   

This position statement was reviewed by the COPD Foundation Medical and Scientific Advisory Committee.


Background

Supplemental oxygen therapy is a mainstay of therapy for COPD and other chronic lung conditions. As with all medical devices, oxygen concentrators intended for clinical use in the outpatient setting must undergo a rigorous approval process to demonstrate both safety and efficacy before sales and distribution are permitted. This assures that those who need supplemental oxygen therapy can be confident that their needs will be met by their equipment.

Over-The-Counter Oxygen Concentrators

Recently, a number of lower-cost devices being marketed as oxygen concentrators (as well as 'oxygen generators') have appeared on retail websites such as Amazon.com and eBay.com and Facebook. These devices are appealing to many, as they are readily accessible without a prescription and at a fraction of the retail cost of approved devices. They are also often marketed with stock images of people using standard oxygen cannulas, as well as stock images of people wearing clinical attire, implying these items are the equivalent to approved medical devices. Comments and (potentially seller-generated) reviews in the retail listings often indicate these units are safe and effective for patients requiring up to 7 liters per minute of flow, leading many to believe these units are appropriate for their needs. However, the technical specifications (which are often obfuscated or difficult to find), reveal that the purity of the oxygen delivered is as low as 30%, an unsafe level far below regulatory standards.

COPD Foundation Position

At this time the FDA has not approved the purchase of oxygen concentrators without a prescription. The COPD Foundation does not recommend the purchase or use oxygen concentrators that are not approved for use as Medical Devices for the treatment of COPD or other chronic lung condition. We advocate for these unregulated devices to be removed from the marketplace due to the high levels of risks they pose. The COPD Foundation encourages all individuals to discuss oxygen therapy with their personal clinical team and adhere to their prescribed regimen.

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Categories: Position Statements

New Plain Language Summary Feature in Chronic Obstructive Diseases: Journal of the COPD Foundation

Posted on February 03, 2021   |   

This article was written by Cathy Gray Carlomagno, BS, Managing Editor Journal of the COPD Foundation


Chronic Obstructive Pulmonary Diseases: Journal of the COPD Foundation is happy to announce a new feature: "plain language summaries" of the journal’s recently published articles.

The summaries are short and written in simple, non-technical language with the goal of providing a helpful overview of the published "original research" or "review" article. These summaries strive to answer the questions:

  • What occurred during the research/study/trial?
  • What was learned at the end of the research/study/trial?
  • Why was the research needed?
  • How will information learned from the research be used in the future?

Several of the articles recently published in Volume 8, Issue 1 of Chronic Obstructive Pulmonary Diseases: Journal of the COPD Foundation have corresponding plain language summaries. These articles (and their short summaries) cover a variety of COPD-related research topics including patient registries, large clinical trial results, genetics, exacerbations, exercise, patient treatment preferences and more.

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Categories: Journal of the COPD Foundation

Living with Bronchiectasis: The Patient Perspective

Posted on January 27, 2021   |   

This article was written by Bret Denning, JD and Christina Hunt, BS, RRT-NPS


Brian Simpson is a registered respiratory therapist (RRT) who has lived with severe chronic asthma for more than 30 years. He has worked in pulmonary rehabilitation and as a COPD Navigator and case manager. When his bronchiectasis led to a rapid deterioration in lung function, Brian could no longer work with patients. He began working as a CDI (clinical documentation improvement specialist), reviewing inpatient accounts. Even with severe lung disease, Brian has completed 18 full marathons, more than 30 half marathons, and a 50K mountain trail race.

Thanks for talking with us today Brian. Can you tell us when you first started noticing signs of your bronchiectasis?

I first started noticing symptoms of bronchiectasis a little over four years ago. I had a rapid and severe decrease in lung function after finishing two marathons within a two-week period. Prior to that, I was running at least five to eight miles every day. My lung function dropped from just under 30% to 15% and I noticed muscle fatigue with any activity. Even coughing was a struggle.

What tests did the doctors do to confirm your diagnosis?

My physician ordered a CT scan of my chest and pulmonary function tests as part of a pre-lung transplant assessment. When my pulmonologist reviewed the results with the radiologist, they made the diagnosis of bronchiectasis.

I’m sure it was quite a shock to hear that. How did you initially react to the diagnosis?

I remember feeling somewhat overwhelmed being diagnosed with bronchiectasis. I’m a non-smoker who has suffered from severe chronic asthma my entire life. Over time, that developed into stage 4 COPD, and now I was adding bronchiectasis to the list of diagnoses.

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Categories: Personal Stories Tips for Healthy Living

A Coronavirus Update for the COPD Community

Posted on January 14, 2021   |   

This article was reviewed by a member of the COPD Foundation Medical and Scientific Advisory Committee (MASAC)


Updates from January 14, 2021

COVID-19 Vaccines: What do we know?

COVID-19 Vaccines: What do we know?

January 14, 2021

Do you have questions about the COVID-19 vaccines? Do you wonder how they work or if they are safe? Watch this webinar and hear our expert panel discuss these questions and others from the community. We hope this discussion will help you feel more prepared to make the best decisions for you and your health. Speakers include: Dr. Barbara Yawn, Dr. Bob Wise, and Dr. Paul Sax.

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Categories: Coronavirus (COVID-19) Education, Resources and Studies

Medicare Insights Survey Results

Posted on December 14, 2020   |   

The article was written by Jamie Sullivan, MPH, Danielle Boyce MPH, Kristen Willard, MS, Ruth Tal-Singer, PhD


The type of insurance you have can play a big role in what care you have access to and how much your care and medications cost. Since there are so many different types of insurance plans and because everyone has different considerations that are important to them, how people make choices, what types of things they think are important, and what resources they use to help them decide about insurance will be different for each person. We conducted the Medicare Insights Survey on COPD360social in October 2020 to find out answers to these questions and help us plan educational programs for 2021.

We heard from 192 people with chronic lung diseases who are currently covered by Medicare, Medicaid, private plans, and others. Here is the breakdown of the types of insurance that survey respondents have. Keep in mind that one person could select multiple options.

What matters in making insurance decisions?

Survey respondents were asked to select all the factors they think are important when they are choosing insurance plans and then to select the one most important factor.

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Categories: Education, Resources and Studies

Bronchiectasis: Everyday Health with Exercise, Nutrition, and Sleep

Posted on December 09, 2020   |   

This post was written by Jane Martin, BA, CRT


In this blog post we talk more about living with bronchiectasis and taking care with three different aspects of your health (and that everybody should keep in mind): exercise, nutrition, and sleep.

This is the fifth in a series of six blog posts to bring more awareness to bronchiectasis and things you can do. Follow these links to read more:

Disclaimer: Always check with your health care provider before making any changes in exercise, activity, or diet.

Exercise

Exercise training is linked to improvement in exercise ability, shortness of breath, and less fatigue (tiredness) for people with bronchiectasis. It is also shown to be effective in decreasing exacerbations (flare-ups)1. You might be thinking, "Well, that’s fine, but I can’t exercise. I get short of breath just walking to my car!"

If you feel that way, you’re not alone! You should know, though, that exercise is possible. A pulmonary rehabilitation program can help you learn to exercise safely with the guidance of a special team of health care professionals. Some are now offering remote classes. Ask your doctor about referring you to pulmonary rehab.

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Categories: Tips for Healthy Living

Treating Severe Emphysema: One Family’s Journey with Bronchoscopic Lung Volume Reduction (BLVR)

Posted on October 29, 2020   |   

This article was reviewed by Kristen Willard, MS


This post is based upon the real-life experiences of Chris, a person with COPD.

Chris and Jody


Emphysema – one of the forms of Chronic Obstructive Pulmonary Disease (COPD) – is a disease that affects the person with COPD as well as their family and caregivers who watch them deal with the frustration and fear of having difficulty breathing. Before emphysema affected Chris’s lifestyle, he enjoyed everything about the outdoors. He spent hours working in his garden and went hunting with friends. He absolutely loved fishing with his two grandsons, which involved a long walk through the woods to get to the river. As Chris’s symptoms progressed, he no longer found that long walk easy to do. He also had to pick and choose what he could do, as everyday activities became difficult for him to finish. Chris would have to form a plan to do just about anything, so that if he was out of breath, he knew there was somewhere for him to sit down and take a rest. He found this to be disruptive and embarrassing.

His wife, Jody, watched him struggle for years, which fueled her search for treatments that could help them get back some normalcy in their lives. She also felt a divide between their family and the rest of the world. Jody was devastated knowing that Chris felt that his problems became his family’s problems too. Chris was very good about using all his therapies and keeping up with the activities he learned at pulmonary rehabilitation. They wondered if there was more that could be done.

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Categories: Medications, Treatments and Therapies

MEDICARE OPEN ENROLLMENT-What COPD Patients Need to Know

Posted on October 27, 2020   |   

This article was written by Jamie Sullivan, MPH and reviewed by David Mannino, MD, Ruth Tal-Singer, PhD, Byron Thomashow, MD, Stephanie Williams, BS, RRT, and Barbara Yawn, MD


Not much about the fall of 2020 feels routine but some things go on as usual and that means the open Medicare enrollment season. You may be reading this and say "I am not on Medicare" or "I’m happy enough with my coverage," and be tempted to click on to the next article, but if you have health insurance, regardless of the type or how happy you are with your current coverage, open enrollment review of your insurance plan should still be on your to-do list!

Why should you care about open enrollment? Many details about a given insurance plan can change from year to year, so just because you are happy now, you need to review your coverages in the assigned “open enrollment” time (for Medicare that is October 15, 2020 - December 7, 2020) to make sure that the doctors in your network, the out-of-pocket costs of care and the medications covered haven’t changed for the coming year.

Most of the issues we are going to cover in this blog are about Medicare. If you have a private plan from your employer or are enrolled in a Medicaid Managed Care Organization plan make sure to check the dates of your open enrollment. If you purchased insurance from a state or federal exchange (sometimes called Obamacare Plans), or if you need to purchase insurance for next year, your open enrollment period is from November 1, 2020 - December 15, 2020.

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Categories: Community Announcements Health Policy and COPD

Bronchiectasis and COVID-19

Posted on October 09, 2020   |   

This post was written by Jane Martin, BA, CRT

Individuals with chronic lung diseases have always needed to take special precautions to stay as healthy as possible and avoid situations that could harm their health. With the global coronavirus (COVID-19) pandemic, this has become even more important as we look to safeguard our health and the health of those around us.

So, what about those of you with bronchiectasis? How can you manage it effectively in this pandemic?

What is bronchiectasis?

Before we go on, let’s have a quick review of bronchiectasis. Bronchiectasis is a chronic lung disease where the tubes that carry air in and out of the lungs become widened, scarred, and inflamed.1 Cilia are tiny hair-like structures lining these airways. Their job is to move mucus up and out of the lungs. In bronchiectasis, the cilia don’t work as well as they should, and in some cases, they do not work at all. This can cause mucus to build up, triggering a chronic cough, encouraging germs to grow, and leading to more lung infections.

Some people who have bronchiectasis may have another chronic lung disease like COPD or asthma and may experience additional or stronger symptoms. For more on this, and other aspects of bronchiectasis, follow these links to our previous blog posts.

Now let’s talk about ways to stay well with bronchiectasis while living in the time of a respiratory pandemic.

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Categories: Coronavirus (COVID-19) Tips for Healthy Living

COVID-19 and the Chronic Lung Conditions Community – How are we doing after 6 months?

Posted on October 06, 2020   |   

This article was written by Delia Prieto, BSEd, MSEd, Danielle Boyce, MPH, Bill Clark, and Ruth Tal-Singer, PhD


It has been over six months since the COPD Foundation’s first international community survey that helped us understand the impact of the global COVID-19 pandemic on individuals with chronic lung conditions. We have been using the results to provide resources and programs to our community members in addition to developing new research and advocacy efforts. We previously reported highlights from Survey #1 and Survey #2 and are now analyzing the data from Survey #3, which was live for approximately one month, from mid-August to mid-September 2020. The survey was promoted through several COPD Foundation channels including our online communities, e-newsletters, social media and other advocacy groups.

Profile of Survey Respondents

Not all respondents answered every question, so the percentages reported in this article reflect only the respondents who answered the particular content being reported, unless otherwise specified. Approximately one quarter (26%) of the respondents indicated that they had completed at least one of the previous COPD Foundation’s COVID-19 surveys, which will help us understand what changed over 6 months.

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Categories: Coronavirus (COVID-19) Education, Resources and Studies

An Interview with Janice Cotton, State Captain Illinois and IMPACT 2020 Advocate

Posted on September 29, 2020   |   

This article was written by Christina Kononenko, BA, MSEd and Janice Cotton, State Captain Illinois


The COPD Foundation recently had a virtual chat with Janice Cotton, State Captain for Illinois for the last 10 years and IMPACT 2020 participant/advocate. Read on to learn more about Jan and her advocacy work.

Tell us about yourself.

I am an individual living with COPD, diagnosed in 2000. The impact of my diagnosis was devastating, to say the least.

What prompted you to advocate in the first place, and what continues to drive you to this day?

Listening to other people living with COPD who are in pain because of not getting answers to questions about their condition, their medicines, Medicare, and disability prompted me to start working for others. I had been through the process. Although I was still learning and searching for answers, I could certainly share what I had learned.

What types of advocacy work have you done to date?

I have held health fairs, spoken at pharmaceutical conferences and worked on panels giving the patient perspective on what our needs are and how clinicians can best help us.

Why did you decide to participate in IMPACT 2020?

Having worked on Lobby Day on Capitol Hill, I have knowledge of the process and what it takes to get our voices heard.

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Categories: Advocacy Community Announcements Personal Stories

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