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National Immunization Awareness Month

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Do you talk to your doctor every year about receiving your annual flu shot? How about asking your doctor if a pneumococcal pneumonia vaccine is right for you? According to the Centers for Disease Control, an estimated 40,000 to 50,000 adults in the United States die from vaccine preventable infectious diseases every year.

For patients with COPD, asthma, older adults, and those with weakened immune systems, it is especially important to protect themselves with annual vaccinations. For those living with COPD, the risk for contracting pneumococcal pneumonia is 7.7 times higher than their healthy counterparts. Even mild symptoms of the flu or pneumonia in COPD patients can quickly lead to exacerbations, inflammation of airways, and the development of other serious respiratory illnesses.

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Categories: Medications, Treatments and Therapies Tips for Healthy Living

Is COPD the Third or Fourth Leading Cause of Death?

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Have you noticed that in some places COPD is the third leading cause of death and some say it is the fourth? This may leave you wondering, which one is it? Early this year, The Centers for Disease Control (CDC) has released its “Mortality in the United States” data report, moving COPD from the third to the fourth leading cause of death based on early findings of death data for 2016. This report showed that preventable and accidental deaths are now the third leading cause of death, having risen 10% percent in 2016. Thus technically, it is correct to say that COPD is now the fourth leading cause of death as of 2016.

What is included in the category of accidental deaths? Deaths due to car accidents, falling, choking, and overdoses. An increase in accidental deaths has largely been because of a dramatic spike in motor vehicle accidents, and drug overdoses. With 37,814 individuals lives claimed from the opioid crisis in 2016 alone.

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Tags: COPD prevalence
Categories: Advocacy

Faces of COPD: Barry Wood is Staying in the Game

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Meet Barry Wood, a longtime United States Tennis Association (USTA) NorCal tennis player. In 2006, Barry was diagnosed with chronic obstructive pulmonary disease (COPD) and in 2015 was told he would need supplemental oxygen for any strenuous activity. An avid tennis player, the diagnosis was life-changing. However with an optimistic outlook and a little ingenuity, Barry has been able to manage his COPD and stay in the game.

Faces of COPD: Barry Wood is Staying in the Game. Click to watch the video.

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Tags: Barry Wood COPD portable oxygen tennis
Categories: Personal Stories

Portable Oxygen: What's Right For Me?

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Dear COPD Coach,

portable oxygen for COPD

I have had idiopathic pulmonary fibrosis (IPF) since 2009. I was an athlete. I did not smoke. I have been told I am de-saturated at night and have a concentrator for night use.

Based on my latest 6 minute walk test, my clinician’s impressions are the following: With treadmill titration, patient required 3L to maintain an oxygen saturation (SpO2) of 91% at a metabolic (MET) level of 4.8. Decrease in walk distance compared to January by over 350 feet. However, still with excellent effort on 6 minute walk test, but severe desaturation to 75% on 3 liters per minute of oxygen. With significant oxygen needs for higher exertion levels. Discussed paced activity, monitoring SpO2 with activity.

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Tags: portable oxygen
Categories: Coaches Corner

Faces of COPD: Justin Daniels is Running for COPD

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Justin Daniels runs for COPD Awareness

Justin Daniels is a seasoned marathon runner who has dedicated his journey to COPD awareness since 2013. He has met and spoken with hundreds of individuals across the United States and around the world to combat the stigma the remains with the disease.

“What started out as doing one marathon in the state of Indiana has now led me to 48 different states and working with great people living with COPD, their families, as well as people that have never heard of COPD. I have continued to make it my mission to be the voice for the people that can’t,” says Justin.

Justin runs and competes in honor of his father and the millions of individuals living with COPD worldwide. “I set up a booth at each event I am running with information that I am able to pass out to anyone wanting to know more about what I am doing. My mom helps pass out the information while I am running my races, but before and after I am at the booth or walking throughout the area asking people if they know someone living with COPD.”

In 2018, Justin is taking the next step in his running career and competing in his first Ironman competition. The race consists of a 2.4 mile swim, 112 mile bike and 26.2 mile run. He will attempt to qualify for the Ironman World Championship in Kona Hawaii in October 2018.

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Tags: Justin Daniels marathon runner
Categories: Personal Stories

What is the Congressional COPD Caucus?

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The COPD Caucus and advocacy

Tracie Sullivan, Grassroots Advocacy Manager at the COPD Foundation, manages the COPD State Advocacy Program. The grassroots initiative encourages everyone in the COPD community – patients, caregivers, health care providers, and students – to come together to lobby on behalf of the 30 million Americans living with the disease. Tracie talks about her experiences in community organizing and shares how you can become a COPD State Advocacy Captain.

In my first community organizing position, I would often walk around with a tiny notebook to write down unfamiliar vocabulary words. Words like “appropriations”, “omnibus”, “reauthorization”, and “majority whip leader” left me trying to figure out what on earth people were talking about.

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Tags: Congressional COPD Caucus
Categories: Advocacy

Playing with Fire – Staying Safe Using Home Oxygen Therapy

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Oxygen therapy can be very beneficial to people with COPD, but you have to be careful. Every year in the US there are over 180 home fires involving home oxygen therapy equipment. These fires result in more than 70 deaths and emergency departments treat over 1,000 people for burns. The good news is that you can take steps to minimize the risk. These include above all never smoking while using oxygen therapy and being careful to avoid naked flames or sparks.

Fire prevention with oxygen equipment and firebreaks

Another precaution is fitting firebreaks (also called thermal fuses, fire safety valves or fire stop valves), into the tubing from your oxygen supply. These don’t stop the fire from starting, but they can stop fire from spreading and save your life and other peoples’ lives. In Europe, firebreaks must be fitted to all oxygen installations. In the US, the Veteran’s Health Administration (VA) also takes the issue seriously. It has just made thermal fuses compulsory for all its 85,000 home oxygen users.

Here are a few of the commonly asked questions around oxygen and fire safety:

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Tags: Firebreaks oxygen equipment
Categories: All About Oxygen

Respiratory Therapists, Telehealth and You

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Telehealth policy for respiratory therapists and COPD patientsIf you or a loved one have been admitted to the hospital for COPD, chances are you have been cared for by a respiratory therapist (RT). But if you have COPD and are NOT in a hospital, you likely do not have access to a respiratory therapist. This is wrong, and it needs to change. You can help bring about that change!

Respiratory therapists are an important part of your healthcare team. RTs have specialized training and skills that make them uniquely qualified to help you understand your disease and treatment options. However, the respiratory therapy profession is a much newer profession than doctors, nurses, and physical therapists, and we were not around in the early 1960s when Congress created Medicare. Because of that, RTs were not written into the original Medicare laws, and it has been a struggle ever since to get Medicare to recognize the role of the RT, especially outside the hospital setting.

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Tags: telehealth and COPD
Categories: Advocacy

My First Memory of Advocacy

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Advocating for COPD research and policy

Tracie Sullivan, Advocacy Coordinator at the COPD Foundation manages the COPD State Advocacy Program, a grassroots initiative that encourages everyone in the COPD community – patients, caregivers, health care providers, and students – to come together to lobby on behalf of the 30 million Americans living with the disease. Tracie talks about her experiences in community organizing and shares how you can become a COPD State Advocacy Captain.

My first memory of advocacy was going to a rally with my father when I was ten. I remember sitting on his shoulders and watching a presidential candidate speak outside the town hall on a snowy evening in October, surrounded by hundreds of people cheering and holding signs.

As a grew up, I realized how unique my experience was living in New Hampshire and my exposure to politics at a young age through the primaries. With the largest amount of local elected officials in New Hampshire, combined with national presidential attention, it was not uncommon to bump into representatives at a local restaurant and have a conversation with them about an issue you cared about.

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Tags: COPD State Advocacy Captain grassroots advocacy
Categories: Advocacy

What is Smart Inhaler Technology?

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A recent survey conducted by the COPD Foundation observed adoption of mobile app technology and overall digital behaviors of patients. 291 individuals shared information about mobile use as well as their interest in smart inhaler technology. A smart inhaler integrates with your mobile phone using sensors and Bluetooth technology to track you daily usage and alerts you when you have missed a dosage. The mobile app may also provide insights into your health that may be shared with your doctor. The technology is believed to increase medication adherence which in turn decreases severe flare-ups and emergency hospitalizations.

Our survey found that:

  • 58% of respondents used mobile apps on a regular basis, however nearly 70% were unfamiliar with smart inhaler technology;
  • 66% would like a tool to help track medications;
  • 71% would like information on tips for living well with COPD included in a mobile app.

Smart Inhalers to treat COPD and track manage

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Tags: app COPD mobile Smart inhaler
Categories: Tips for Healthy Living

Taking the First Step

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Tracie Sullivan for COPD advocacy

Tracie Sullivan, Advocacy Coordinator at the COPD Foundation manages the COPD State Advocacy Program, a grassroots initiative that encourages everyone in the COPD community -- patients, caregivers, health care providers, and students -- to come together to lobby on behalf of the 30 million Americans living with the disease. Tracie talks about her experiences in community organizing and shares how you can become a COPD State Advocacy Captain.

I remember in my first advocacy job, my supervisor handing me a list of 50 state representatives, “Can you call all these elected officials today and ask them if they are going to vote for the Childcare Scholarship Bill and what their opinions are on this year’s state budget?” As I looked at the list, I could feel the sweat in my palms and my heart beat faster. I had never called an elected official before. I didn’t know what to expect- Would they be polite? Would they want to talk to me? What would they say?

I started by building a script. I wrote down an introductory sentence of what I was going to say and put a few bullet points of discussion topics I wanted to remember to talk about. As I dialed that first number and continued my calls throughout the day, I started to feel at ease. All 50 state representatives were polite and interested in hearing what I had to say about the topic at hand. We had great conversations, they asked questions, and it started my relationship with engaging with my elected officials.

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Tags: grassroots COPD state captain
Categories: Advocacy

Clinical Trials – What They Are, Why They’re Important and How You Can Participate

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Clinical Trials with COPD Research is critical to learning more about disease and potential treatments. While research is important, the different types of research can be confusing and even overwhelming. In the coming months, we will be writing a series of blogs to provide you with more information about research – if you have any questions or would like us to cover a specific topic, please post in the comments section at the end of this blog.

What are clinical trials?

Clinical trials are research studies that investigate the safety and effectiveness of a medical treatment, strategy or device. A clinical trial is often used to determine if a new medical treatment is more effective or has less dangerous side effects than the standard treatment used. The main types of clinical trials are interventional (testing the safety of a drug, device or new treatment) and observational (observing participants over time). Clinical trials also consist of different phases which first test the safety of a potential new treatment and then progress to larger scale research.

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Tags: clinical trials COPD patient recruitment
Categories: Education, Resources and Studies

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