COPD Foundation Blog

Find inspirational stories, tips from the COPD Coach, events, and current news on the COPD community blog. Have a question regarding COPD that you would like to share with our community? Contact our COPD Coach. Coaches Corner is aimed at providing information for individuals with COPD to take to your doctor, and is not in any way intended to be medical advice. If you would like to submit a question to the Coaches Corner email us at We would love to hear your questions and comments.

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Archive: December 2015

Are You Prepared for an Emergency?

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The extreme weather conditions that have affected so many across the country this week are particularly concerning to those who require electricity to power their supplemental oxygen. Are you prepared for an emergency? Download the COPD Foundation's free Disaster Preparedness Kit and take the following precautions:

  • Prior to an emergency, contact your power company and tell them you use supplemental oxygen. Ask the following: What kinds of services you can expect during an outage? Will your home receive priority service? Will you be informed frequently about repair progress? If the outage is long, will you be provided with a generator? What is the average frequency and length of power outages is in your area and what you should do to prepare for them?
  • Emergency Preparedness

  • Contact your oxygen provider and ask how much oxygen needs to be placed in your home so that oxygen flow is uninterrupted during a power outage. Your oxygen provider has an obligation to maintain your supply during emergencies. Your oxygen provider may set up one or more large compressed oxygen cylinders in your home for emergency use. Prepare the cylinder for quick use during an emergency and label it with its duration. If you receive regular deliveries of liquid oxygen, your provider may choose to set up additional reservoirs, topping them off periodically. Prepare your liquid tank for quick use during an emergency and label it with its duration. When the concentrator stops, you will need someone else to switch you over to the emergency oxygen. Train that person as soon as possible.
  • Consider installing a generator if you live in a remote area and/or you experience frequent power outages.
  • Develop an emergency preparedness plan with your neighbors and reach out to your local police department for emergency support information.
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    Tags: disaster emergency natural preparedness weather
    Categories: All About Oxygen

    Accessing Treatments in 2016 - What You Should Know

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    This blog entry was written by Jamie Sullivan, Sr. Director of Public Policy and Advocacy at the COPD Foundation

    The new year can often mean new policies on the medications that are covered for COPD patients, even when you are not switching insurance plans. As we approach January 1, the COPD Foundation wants to make sure you are prepared for any potential changes to what are referred to as formularies, the lists of drugs covered by your insurance company, and the costs you have to pay each month for those drugs. High copays, the set amount you pay at the pharmacy for each prescription you fill, have always been an issue patients struggle to keep up with. In the past, a new year would often mean higher copays for patients. Unfortunately in the last few years, some large insurance companies have excluded certain drugs from the formulary altogether. A few patients in our community have experienced this switch, so we suggest everyone take adequate measures to prepare. It is unlikely you will be affected, but it is important to plan just in case.

    Here is what you can do today:

    Drug Access
    • Call, email, or go online and ask your insurance company if there have been any major changes to the 2016 formulary. You can specifically tell them your medication and ask whether it will continue to be covered in 2016. Ask if there are any changes in your co-pays so you can budget accordingly.
    • If you are told that your medication will no longer be covered in 2016, ask whether they have an appeals process and send this information directly to your physician for help.
    • Tell us about your experience. Your insurance company is not your doctor and there should be no reason for what we call "non-medical switching", i.e. you and your doctor determine the best treatment, but the insurance company switches you for no medical reason at all. Fill out a quick survey and learn more about the issues today.

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    Tags: Copay Drug Access Formularies Insurance Non-medical switch
    Categories: Related COPD News

    Shame and Blame

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    The dreaded question for individuals living with COPD is, “Did you smoke?” So much is insinuated in three simple words, and so many in our community have to withstand the stigma associated with the disease. All too often, individuals living with COPD are afraid to reach out for help or seek treatment - let alone raise awareness - because they believe in the end they will be shamed and blamed for smoking.

    While smoking is a primary cause of COPD, 25% of COPD patients have never smoked. Environmental, occupational, and genetic factors are also causes of respiratory disease. If you did or do smoke, however, you should know you are not alone. What is important now is not to look at the past with regret and shame, but to the future with strength and hope. No one has the right to take that away from you.

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    Tags: blame COPD shame stigma
    Categories: Related COPD News

    Why Should I Wear My Oxygen?

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    This blog post was written by COPD State Captain "Uncle" Jim Nelson. He and his wife, Mary, are active COPD community advocates.

    Okay, first, you deserve to know that I know what I am talking about. After a premature birth, a childhood of second and third-hand smoke, and personally smoking pretty heavily for 20 years, I was diagnosed with severe COPD in 1995. After learning everything I could about the disease, wearing oxygen at night and while exercising, and seemingly a million miles on the treadmill, I was blessed with a double lung transplant in 2011.

    Since the transplant, Mary and I have spoken to hundreds of patients and their caregivers and traveled to many conferences to present the viewpoints of the lung disease sufferer and the woman who helped to keep him alive for so many years. So, when it comes to using supplemental oxygen, I have been there! I initially went through the traditional hesitation to be seen wearing the cannula. That is a disturbingly common trait among oxygen users, especially those newly prescribed. So, my first question to you is this: What excuse are you using not to wear your oxygen when you know you should?

    Jim For me, it was the usual. I was 55 years old. Mary and I worked every day in our accounting office, and we were active with the Chamber of Commerce, with Rotary and Hospice, and with the Community Theater that we had helped to form. Every day, I met and talked to neighbors, friends, and clients. I was tall and athletic-looking, I had been hunting big game in the Colorado Mountains for some years, and I didn’t want to suddenly appear looking weak, sick, and vulnerable. (My vision…) Fortunately, in the early years, I only had to wear oxygen at night and when exercising, so I could successfully hide my frailty. I gradually backed off from hauling a rifle up and down hills, and did more boating, more fishing. No one noticed because it came upon me so very slowly.

    That all lasted until a bout of pneumonia resulted in orders from the doctor to use oxygen 24 hours a day, at least for a while. So, I showed up at the office, at Rotary meetings and Chamber functions in a cannula. It was a small town, and the word spread quickly. Interestingly, whatever embarrassment or hit to my ego that I had expected was overshadowed by an outpouring of love and support and concern that blew me away!

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    Tags: awareness breathing campaign concerns HIV/AIDS oxygen supplemental What is COPD
    Categories: All About Oxygen

    COPD Global: 1st Latin American COPD Patient Leadership Summit

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    On December 5, 2015, the 1st Latin American COPD Patient Leadership Summit, organized by the COPD Foundation and COPD Global, was held in Buenos Aires, Argentina. The Summit was attended by representatives of patient organizations, patients, caregivers, and leading physicians from 10 Latin American (LATAM) countries, all working in the area of COPD.

    Exacerbation Presentations focused on progress of scientific research and advising patients in matters of treatment, rehabilitation and practical aspects of everyday life. Speakers included: Drs. Alejandra Rey (Uruguay), Gabriel García (Argentina), Maria Montes de Oca (Venezuela) and José Jardim (Brazil). Patients Raul Arbiza (Uruguay) and Carlos Cambon (Argentina) gave personal testimonies, and John Walsh, president of the COPD Foundation in the USA, spoke about the importance and benefits of global cooperation in the areas of communication, resource sharing and COPD research. Attendees had opportunities to break out in groups and exchange experiences and discuss suggestions for COPD awareness in their countries.

    The following meeting objectives were addressed:

    • Specific COPD patient needs
    • Firsthand progress and the main avenues of research that are being developed
    • Creating awareness to require public and private policies for prevention, research and treatment
    • Benefits, organization and active participation of the patient community at the local, regional and global levels

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    Tags: advocacy COPD Global Latin America
    Categories: Related COPD News

    Exacerbations: What Do They Mean?

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    Dear COPD Coach,
    I’m confused about what having an exacerbation of my COPD really means. Are there any signs or symptoms which my family and I can see that indicate I am having an exacerbation or is this just the same as an infection?

    —COPD Exacerbations

    Dear Exacerbations,
    Knowing the early warning signs of an exacerbation is very important. As we have documented in previous letters, exacerbations are a problem with COPD, especially when you have not quite recovered from a previous exacerbation. And it’s easier to treat an exacerbation in the early stages versus when it is full blown.

    First of all, exacerbations are often the result of either a bacterial or viral infection. If you are exposed to harmful pollutants, this can also cause a worsening of your symptoms. The signs to look out for are:


    • Your breathing becomes harder than what is considered normal for you. During an exacerbation you may experience unusual breathing sounds like wheezing. This would indicate that your airways may be partially blocked.
    • Coughing that is more severe than normal. Your cough may be dry (also referred to as non-productive) or you may be bringing up more mucus than normal. If you are bringing up mucus, it will be yellow, green or bloody if an infection is present. You may also experience increased difficulty when lying down.
    • Changes in skin or nail color. A blue tint on your nails or around your lips indicate that you may not be getting enough oxygen. If this happens you should seek help right away! A change in your response to regular breathing medications. For example, if you take a fast-acting reliever medication by inhaler or nebulizer and it always helps you feel “opened up,” but one day it doesn’t seem to help, that is an early warning sign of possible exacerbation.
    • Headaches are often a sign of poor oxygen processing. If you wake up in the morning with a headache, and this is a new symptom for you, it could be a sign that you may be experiencing an exacerbation.
    • Swelling in your ankles and feeling of pressure on your diaphragm or ribs, are common COPD symptoms and are associated with heart complications or results of lung damage. If these symptoms are new to you or appear to be increasing suddenly, it may be a sign of an exacerbation. Note: Talk with your doctor about chest pain and ask when you should seek immediate medical attention, or when the discomfort is not urgent but may be caused by changes in your ribs or chest wall due to COPD.
    • If you feel yourself breathing more from the chest, shoulders, or neck than your abdomen, this can also be a sign of an exacerbation.
    • Increased difficulty sleeping or no desire to eat could also signal an exacerbation.

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    Tags: breathing techniques COPD exacerbation pollutants support symptoms tips triggers worsening
    Categories: Coaches Corner

    COPD in Tennessee

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    In a recent piece published by the Knoxville News Sentinel, COPD Suffocating Tennessee’s Health, Mike Leventhal, executive director of Tennessee’s Men’s Health Network and Stephanie Williams of the COPD Foundation, described the high prevalence rates of COPD in Tennessee. Nearly 9 percent of Tennesseans live with this progressive lung disease, causing the state to have the third highest rate nationwide. Of the 500,000 individuals in Tennessee living with COPD, most will not seek treatment or even realize they have the disease until they have lost more than half of their lung function.

    Leventhal and Williams explained that many Tennesseans ignore the warning signs - breathlessness and coughing - as many associate those symptoms with aging. Medical professionals also experience challenges in identifying COPD in symptomatic individuals. They pointed out that treatments do exist to slow the decline in lung function and improve patients’ quality of life. Medication, pulmonary rehabilitation, and supplemental oxygen are just some of the ways individuals can prevent their symptoms from getting worse. While there is no cure for COPD, there were more than 40 new medications in development to treat the disease as recently as last summer.

    The authors stressed the importance of getting screened for COPD early, and noted that the Men’s Health Network has partnered with the COPD Foundation in its outreach efforts, as men are less likely than women to visit a physician. They explained that the top three risk factors for developing the disease include smoking, environmental factors, and genetics. COPD most often occurs in people 40 years of age and older who have a history of smoking.

    While not everyone who smokes will develop COPD, and not everyone with COPD is a smoker, many of the individuals diagnosed with the disease have smoked in their lifetime. Individuals who have had long-term contact with harmful pollutants in the workplace including certain chemicals, dust, or fumes can also develop COPD. Even if an individual has never smoked or been exposed to environmental toxins, they can still develop the disease through genetic factors.

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    Tags: COPD prevalence screening symptoms Tennessee treatment
    Categories: Related COPD News

    Introducing the StopCOPD App!

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    It is estimated that 30 million Americans have COPD - so why isn’t there more research around finding better treatments or a cure? As you probably know, COPD is a severely under-studied disease. Despite being the third leading cause of death, there are only 780 ongoing trials for COPD - which pales in comparison to the over 41,000 trials taking place in cancer research. The COPD Foundation is dedicated to changing this statistic. As a result, we have been tirelessly recruiting patients to the COPD Patient-Powered Research Network (COPD PPRN) to provide doctors and scientists with the information they need. Thousands of patients have already joined us by completing a simple survey at

    StopCOPD app Have an iPhone? Joining the network just got easier. The COPD Foundation has developed the StopCOPD app that is specifically designed to help medical researchers gather data more frequently and accurately from participants. World-class research institutions have already developed similar apps for studies on asthma, breast cancer, diabetes, and Parkinson’s disease. Now we can do the same to support COPD research for a cure! Click here to download the app .

    Features of the StopCOPD app StopCOPD app include:

    • Informed consent: users are able to read the informed consent document which is displayed in a clear and easily maneuverable fashion
    • Surveys: participants are able to complete COPD PPRN surveys through the app as well as access additional educational information
    • Active tasks: participants are also able to share additional information about themselves by performing activities that generate data using iPhone’s advanced sensors. Initial tasks include motor activities, fitness, cognition and voice
    • Comparative data: future features of the app will allow participants to see how their personal data compares to others in an aggregate fashion

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    Tags: health research solutions survey Technology trials
    Categories: Related COPD News

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