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When a New Diagnosis Takes Your Breath Away

Posted on June 24, 2021   |   

This article was written by Kristen Willard, MS


I’ll never forget it. Even though 25 years has passed, I remember the moment vividly.

"Don’s cousin has that disease Kristen’s father has," my grandfather said nonchalantly, as relatives talked in a seafoam-green living room.

The disease my father has? What was he talking about? I wasn’t sure I wanted to know. I asked anyway. "What does my dad have?"

My grandfather continued without hesitation. "Emphysema," he said flatly. I don’t remember much after that.

My world was changed with a verbal gut punch, a statement that I assumed meant the worst. Twenty years earlier, my father held a tiny me as he stood at his mother’s memorial service. She had passed in 1977 from emphysema. That was the year that Elvis died and Roots debuted on television. COPD was most certainly not a household name.

Twenty years later, when my father was diagnosed, we still didn’t call it COPD. We didn’t have a Foundation to support us or search engines that brought medical information to our fingertips. As was the case with many conditions, the world did not necessarily want to discuss them. No one jumped to pull up a chair to the kitchen table and talk through a loved one being diagnosed, what doctors had told them about prognosis, what words like chronic and hyperinflation meant. So we navigated on our own and heard many things second hand after completed doctors’ visits. I’m glad so much of this is changing.

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Categories: Personal Stories

I Have COPD, Now What?

Posted on June 17, 2021   |   

This article was written by Angie Brunkhardt, RRT.


So, you have COPD. These words scare even the strongest people. What does having COPD mean? How does your doctor know this is truly the problem? How will COPD affect your life, your future? You probably have a few questions. Let us start by talking about what to expect when it comes to testing.

There is only one diagnostic test that can really confirm if you have COPD. That test is called a pulmonary function test (PFT). One part of the PFT is called a spirometry test. When you schedule your PFT, the testing center will remind you not to take your respiratory medications the day of your test.

For this test, a respiratory therapist will guide you through a series of breathing/blowing exercises while you have a nose clip and your mouth on a large mouthpiece connected to a spirometer to measure air flow. You will take in very deep breaths through the mouthpiece and blow out very hard and fast for several seconds. You will feel that you are really pushing yourself, and that is exactly the kind of effort needed for this test. You will repeat this test several times to make sure the results are as accurate as possible. When you finish the first part of the test, the respiratory therapist will give you a bronchodilator either by using inhaler or nebulizer, and you will repeat the breathing test again. By repeating the test after using the medication, the doctor can determine if your lung disease reacts to the medication. A positive reaction will show an increase in your numbers and less difficulty with the breathing test exercises you repeat.

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Categories: Education, Resources and Studies Tips for Healthy Living

How Does COPD Affect Breathing?

Posted on June 03, 2021   |   

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


How Lungs Work

When people are newly diagnosed with chronic obstructive pulmonary disease (COPD), they have lots of questions about what COPD is, what it means, and how it affects the lungs. Let’s take a few minutes to explore what COPD means and the difference between chronic bronchitis and emphysema. As you read, it is important to remember that many people living with COPD have features of both chronic bronchitis and emphysema. That is why we prefer to use the umbrella term chronic obstructive pulmonary disease.

Here we see a cartoon illustration of the tiny, delicate lung tissue called alveoli. Each individual image shows two alveoli. In healthy lungs, there are hundreds of millions of these tiny air sacs, or alveoli. In this illustration, you can also see a small segment of airways leading into the alveoli. These segments of the lung are microscopic in size. The one on the left is normal tissue, bronchitis is in the middle, and emphysema is on the right.

When the lungs become exposed to irritants, pollution, smoke, etc., different parts of the lung can be injured. The main difference between chronic bronchitis and emphysema is the location of this injury or damage in the lung. Chronic bronchitis affects the airways (breathing tubes), and emphysema affects the alveoli.

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Categories: Education, Resources and Studies

Your Lungs and the Environment

Posted on May 26, 2021   |   

This article was written by MeiLan Han, MD, MS, COPD Foundation Board Member.


Many of us don’t stop to think about how our environment impacts our lungs. While tobacco smoke contributes to the development of COPD, there are many other environmental factors that contribute both to the development of lung disease and can also make respiratory symptoms worse for those who do have lung disease.

To begin, it is now believed that air pollution not only contributes to the development of COPD but can also make respiratory symptoms worse and trigger exacerbations (also known as flare-ups). Hotter temperatures and drought increase the amount of dust and particle pollution we are exposed to. Wildfires in particular have become a major source of extremely high particle levels, noticeable even hundreds of miles from the fires themselves. Since air pollution can vary significantly on a daily basis, websites such as airnow.gov allow you to look up the Air Quality Index in your area at any given time. On unhealthy air quality days, you may want to stay indoors if possible, while keeping doors, windows, and fireplace dampers shut. Air cleaning devices with high efficiency particulate air (HEPA) filters can provide additional protection. If you must spend time outside, ordinary masks are unfortunately not that helpful for filtering the smaller, more dangerous particles. In these cases, an N-95 type mask is most effective; however, as many now know, these can be uncomfortable to wear and breathe through. When driving on unhealthy air days, another tip is to roll up your windows and operate the recirculate setting for your vehicle’s ventilation system.

We know that air pollution can also come from inside the home. Sources of indoor air pollution include asbestos, paint and cleaning supplies, as well as mold and radon. Strategies to reduce air pollution in the home include trying to use safer products. For instance, “low-VOC” (volatile organic compound) paints are now readily available. Cleaning products unfortunately often contain chemicals harmful to the lungs. Ammonia and bleach can irritate the airways. It is important to never mix bleach or any bleach-containing product with any product containing ammonia. This combination can create a gas which can cause significant breathing problems and even death. The Environmental Protection Agency (EPA) has a list of cleaning products that meet their new "Safer Choice" requirements.

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Categories: Education, Resources and Studies Tips for Healthy Living

Healthy Lungs from a Global Perspective: An Interview with Made Pramana

Posted on May 21, 2021   |   

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


Recently, the COPD Foundation’s Stephanie Williams spoke with Made Pramana, an individual from Indonesia who has been diagnosed with bronchiectasis. Read on to learn more about Pramana, his life in Indonesia, and how he helps people learn more about lung diseases.


If you could describe where you live in 100 words or less, how would you describe it? What is an average day like?

I live in Denpasar, which is the capital city of the island of Bali, Indonesia. Denpasar is a busy place, with lots of street vendors. People usually drive motorcycles or cars to commute. There is also public transportation, such as buses or taxis. There are some public places such as beaches, rice fields, parks, and a mangrove forest. Denpasar also has traditional markets, amusement parks, museum, hotels and pools. The housing in Denpasar is quite crowded since many people choose to live and work here.

People usually start the day by buying groceries at 5.30 AM in the morning. If they don’t have time to prepare a meal, the street vendors also sell breakfast. People also can buy foods for breakfast from the street vendor when they don’t have time to cook. Students used to go to school at 7 AM and many people go to work at 7-8 AM. For those that have time, they use the morning for exercise in the park, including yoga, walking, or jogging.

How are things different for you and your community now compared to before COVID?

The schools are still closed because of the COVID-19 pandemic and students have to learn online. There are fewer tourists in Bali since the start of the pandemic. Most people are still going to work; some wear masks and others do not. The same is true for recreational activities. I was at the beach the other day and saw many people swimming, biking, running, and walking. Many people were not wearing masks.

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Categories: Advocacy Personal Stories

Plain Language Summaries for Chronic Obstructive Pulmonary Diseases: Journal of the COPD Foundation Articles

Posted on May 03, 2021   |   

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


Several of the articles recently published in Volume 8, Issue 2 of Chronic Obstructive Pulmonary Diseases: Journal of the COPD Foundation have corresponding plain language summaries. 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 articles (and their short summaries) cover a variety of COPD-related research topics including screening, disease progression, COVID-19, sleep quality, and more.

Plain language summaries are available for each of the following articles:

Screening for Alpha-1 Antitrypsin Deficiency

In the article, "Improving Screening for Alpha-1 Antitrypsin with Direct Testing in the Pulmonary Function Test Laboratory" researchers offered patients whose pulmonary function tests indicated possible COPD, the opportunity to be tested for the genetic form of COPD—alpha-1 antitrypsin deficiency. Several different testing options were offered, and some were more successful than others. For the complete plain language summary click here and scroll down.

COPD Progression

Researchers look at why COPD progresses to severe disease in some smokers but remains stable for years in others, in "Progression of Emphysema and Small Airways Disease in Cigarette Smokers." For the complete plain language summary click here and scroll down.

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Categories: Journal of the COPD Foundation

Harmonicas for Health: A Player’s Perspective

Posted on April 22, 2021   |   

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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Categories: Education, Resources and Studies Personal Stories Tips for Healthy Living

COVID-19 Vaccines for those with Lung Impairment

Posted on April 14, 2021   |   

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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Categories: COPD360coach

Advocacy: You Can Be the Voice of Change

Posted on March 29, 2021   |   

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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Categories: Advocacy

Eating Well: From Debbie B’s Kitchen to Yours

Posted on March 11, 2021   |   

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


Debbie B. - Connecticut State Captain 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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Categories: Education, Resources and Studies Tips for Healthy Living

Do Eating Habits Impact COPD?

Posted on March 09, 2021   |   

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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Categories: COPD360coach Tips for Healthy Living

The heart and soul of the COPD Foundation, COPD360social, reaches 50,000 members

Posted on March 08, 2021   |   

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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Categories: Community Announcements COPD Foundation Initiatives and Activities Related COPD News

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