This article was written by Stephanie Williams, BS, RRT.

I hate to admit this, but I can be cynical—especially when it comes to therapies and treatments for the patients I care about. When I was the Director of Respiratory Therapy in the acute care (hospital) setting, there would be the occasional visit from a salesperson who would try to convince me that the product they were selling was the latest and greatest thing to help me care for my patients. Sometimes the product would be a good addition to our collection of tools we used, but sometimes it was all show and no substance.

I share this with you is because I want you to know how strongly I feel about the Harmonicas for Health program. It truly does rank in my top five of products and programs that I believe can actually improve the quality of life of the participants.

When we started this program five years ago, I had no idea how much it would help people living with breathing problems. We knew it was going to be a good program, but I didn’t know how much people would love it or how much it would mean to them. Boy, was I surprised!

There are many reasons that people give for joining Harmonicas for Health. I recently spoke with Doug Martin, State Captain, and a long-time H4H participant and instructor about his experience with the program and how it helped him.

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Dear COPD Coach

I have had COPD for several years. The possibility of getting COVID-19 really scares me but so does the vaccination. Is it dangerous for someone with COPD to get the vaccination? I have heard that even healthy people are having a hard time with the shots.

Scared

Dear Scared,

I understand your concern and many of us have shared those same concerns. There seems to be no way of determining who will or will not have any side effects from the vaccine or which, if any, side effects they will have. Currently, the most common side effects for many of those getting the vaccines are tiredness, soreness or slight swelling at the injection site, slight fever, headache, chills, muscle aches and nausea. What is important to mention is that all of these symptoms remain for just a very short period of time and are easily treated with rest and over-the-counter pain relievers such as Tylenol or ibuprofen.

We received a few reports of slightly increased breathing problems in people with more severe lung disease (including myself) lasting around 24 hours. In each of these reports the symptoms were relieved by slightly increasing their oxygen flow or if they were only a night time oxygen user, having oxygen handy during the day. As with the other side effects from the vaccines, it lasted only a short time.

It goes without saying that the side effects pale in comparison to what one would experience if they actually got COVID-19. In my particular case I am very glad that I got the vaccine. After the first shot I had minor chills and a slight fever the following day. Other than having slightly increased breathlessness the second day after the second shot (that required increasing my oxygen flow by 1 LPM for 24 hours), the only other side effects I experienced were slight fever, tiredness and chills which required rest and some Tylenol. In both cases, I felt better by the third day.

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This article was written by Bill Clark and Ruth Tal-Singer, PhD.

For many years, COPD has been often overlooked, under researched and underfunded. It was seen as a disease of “shame and blame; that we did this to ourselves. In recent years that that has begun to change!. You might ask: what caused the change? The answer is the patient voice, and patient advocacy is no longer silent and is now being heard and is becoming the voice of change.

Sure there are facts and figures justifying why COPD deserves more attention, but what is opening doors is the voice of the patient and their stories. Your story is so valuable because it puts a face to the impact COPD causes not only to you, but your family and friends. Who can tell our stories better than ourselves? Your story speaks to the need for better treatments, new technology, and targeted research. It tells all who hear it that what you face on a daily basis could well be them or a family member. It speaks to how urgent the problem is and why it can no longer be ignored. Your story is your own and something only you can share. Your story, when joined with others sharing their stories can and does make an overwhelming difference and change!

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This article was written by Stephanie Williams, BS, RRT.

This week our focus has been on nutrition. For some people living with COPD, it can be challenging to eat right and get the calories and nutrients you need, either because you don’t feel confident in your cooking skills or maybe because you don’t have much energy to cook.

If you have been on COPD360social for a while, you have probably seen posts from DebbieB.-Connecticut State Captain where she posts pictures of her yummy meals. She usually posts a food that can be made ahead of time and eaten for several meals to come. What a great idea! Cook once and have plenty for a few days – it sounds good to me!

A few months ago, I asked Debbie B. if she would help me by sharing some of her recipes with us. She was happy to help, and she sent over dozens of recipes. I am sharing a few of them here, and hope that maybe you will have some to add in the comments section.

Before we get started, here are a few notes from Debbie B.:

"We all want to eat healthy, satisfying meals. Sometimes we have to substitute canned or frozen foods for fresh. It is ok to substitute other proteins in place of meat. When reading recipes, it is important to realize that you can substitute ingredients if there are things you cannot eat or don’t like. Think of the recipe as a basic guideline. You can make adjustments to suit your needs.

On days that you feel good, you might cook a one-time meal, or you might take that opportunity to make a little extra or a large meal and plan other meals using the leftovers. You might even freeze portions to eat at a later date.

Enjoy preparing your meals as much as you enjoy eating them!"

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Dear Coach,

My wife has had COPD now for several years. In the past few months, she seems to get ill after eating with a lot of gas causing her to belch a lot. She also seems to have problems breathing afterwards, too. What would you suggest we do?

Dear Concerned Caregiver,

The problem you describe could be from a health problem other than COPD so she should talk to her doctor know about these new problems to make sure she can get any testing or treatment she needs. In people living with COPD, it is always smart to think about diet and food.

Having COPD presents many challenges and eating can be one of them. Nutrition is very important for everyone but with COPD it is not only important but often critical that we not just consume food, but in the process get the needed protein, fiber, fats, and carbohydrates. Something to keep in mind is that the simple act of breathing requires calories. But people living with severe COPD use many more (often hundreds more) calories to breathe than someone without COPD. If these calories are not replaced it can result in weight loss, fatigue and even more shortness of breath.

Instead of eating large meals a couple times a day your wife should try eating several smaller meals throughout the day. These smaller meals should be high calorie and protein such as cheese, peanut butter, protein shakes and meats. In my case, I find it easy to eat peanut butter crackers and sandwiches, small meat and cheese slices, and a high calorie nutritional shake. When I eat the smaller meals, I feel far less bloated and breathless.

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This article was written by Susan Williams, Senior Director of Communications, Bill Clark, Vice President of Patient Experience and COPD360social Community Manager, and Vincent Malanga, Chief Information Officer

On March 4, 2021, the COPD360social community, a peer-to-peer online platform, reached a milestone: 50,000 members. COPD360social is an integral part of the COPD Foundation’s revolutionary COPD360 technology platform that provides visitors with a "one-stop shop" experience in everything COPD including educational materials, blogs, research, and a large searchable database for questions relating to COPD.

John W. Walsh, founder of the COPD Foundation believed that patient voice and documenting patient experiences was vital to bringing awareness to a disease that has often been overlooked, underfunded and misunderstood. It was for these reasons COPD360social was born. Chief Information Officer Vincent Malanga was tasked with the development of a platform where patients, caregivers and medical professionals could interact freely and safely to share honest and factual information, thoughts and insights, even photos.

A team of staff members and patients was enlisted to design community guidelines and structure so that the new community would work seamlessly with the COPD Foundation website. What was not anticipated at the time was that we were giving birth to what evolved as a large vibrant growing community with membership from over 151 countries; a place where members share all aspects of their daily life, gain new friendships; where people living with COPD can connect with and support each other in the knowledge that they are never alone. COPD360social has become a model that other patient communities all over the world aspire to be.

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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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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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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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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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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?

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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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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