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 coachescorner@copdfoundation.org. We would love to hear your questions and comments.

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Sarcoidosis: Seek Answers, Inspire Results

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The COPD Foundation is supporting the work of the CHEST Foundation of the American College of Chest Physicians' Seek Answers. Inspire Results campaign to encourage people living with sarcoidosis to take a proactive role in their treatment plan. The disease affects 200,000 Americans and we want our community to be aware of their risk.

Sarcoidosis and lungs Sarcoidosis is an inflammatory disease that can affect almost any organ in the body. It occurs when a person’s immune system overreacts resulting in the formation of granulomas, microscopic clumps of inflammatory cells. When too many of these clumps form in an organ they can interfere with how that organ functions. The cause of sarcoidosis is currently unknown, and a person may experience an array of unrelated symptoms, such as:

  • Fatigue
  • Weight Loss
  • Cough
  • Headache
  • Rash

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Tags: CHEST Foundation Sarcoidosis
Categories: Tips for Healthy Living

Two Years Later... Julie Nimoy Remembers Her Dad

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This blog post was written by Julie Nimoy, daughter of late actor and COPD advocate, Leonard Nimoy.

It’s hard to believe that two years have flown by since my Dad, Leonard Nimoy, passed away on February 27, 2015. I miss him every day, but he's always in my heart and on my mind. It’s definitely been tough at times, wishing he was here with me, as I always thought of dad as my “rock,” someone who always had “my back” and who I could always go to with anything that was happening in my life.

Producing our film "Remembering Leonard Nimoy" has kept him close to me throughout the past two years. The process of creating this film let me recount special memories and stories about my relationship with him as well as look at photographs, listen to the wonderful stories told by the family and hear his voice during his archive interviews.

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Tags: Leonard Nimoy
Categories: Personal Stories

Newly Diagnosed with COPD: How Will I Cope?

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As I was browsing the internet, I came across a blog posted on CNN. A woman who was recently diagnosed asked what COPD was, and what could she expect.

Their response:

“Chronic obstructive pulmonary disease, or COPD, is a disease that truly negatively affects quality of life. Patients with COPD are prone to asthma-like wheezing, breathlessness, chest tightness and coughing that can occur in episodes caused by chronic inflammation. They're also prone to viral and bacterial infections.

Newly Diagnosed with COPD It is the fourth most common cause of death in the United States, killing an estimated 120,000 people each year. While COPD is most noted for episodes of shortness of breath and wheezing, the disease is typically slowly progressive and persistent. Medical treatment can be successful in relieving symptoms and reducing the severity of exacerbations.

Treatment is with inhaled bronchodilators, steroids to reduce inflammation and other oral medications.”

Despite COPD actually being the THIRD leading cause of death in the U.S., this description is correct. But what's missing from it is describing what it's like emotionally about your COPD diagnosis.

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Tags: COPD COPD diagnosis newly diagnosed with COPD
Categories: Tips for Healthy Living

Giving To Support the COPD Community

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As COPD Awareness Month comes to a close, the COPD community reflects on the successes we have achieved in 2016.

Strides in research for improved therapies, creation of the National COPD Action Plan, advocacy for improved access to life-saving treatments, and support provided to more than 25,000 members on COPD360social.org - these are just a few ways we have striven to help you and millions affected by COPD.

"COPD360social has been a life-line for me. I have found needed info and made new friends who understand. I no longer feel alone. Thank you all," COPD360social member, Bon Bon.

Take Action for COPD Giving Tuesday Help us be a life-line to others.

Give the gift of better breathing. Your financial support will help us run our research and advocacy programs that will lift this silent epidemic out of the shadows and bring us closer to a cure. Most of all, your gift will allow us to provide our free education and community outreach services to those who currently live with COPD.

Donating is easier than ever before by using our new Apple Pay option! Learn more.

If you are online, leave us a comment or tweet us @COPDFoundation using hashtag #donate on Facebook or Twitter. Once posted, you will receive an auto-reply with a 60-second form to complete the process.

On behalf of the the global COPD community, thank you for helping us create pathways to a cure for COPD. Take action today to breathe better tomorrow.

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Tags: donate Giving Tuesday
Categories: Advocacy Education, Resources and Studies

TAKE ACTION: The Centers for Medicare and Medicaid Services (CMS) Plans to Cut Reimbursement Rates for Pulmonary Rehab in 2017

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The Centers for Medicare and Medicaid Services (CMS) recently announced plans to cut pulmonary rehabilitation reimbursements rates in 2017. The COPD Foundation, along with the greater COPD community and partners in the U.S. COPD Coalition, are joining together to prevent this from happening. Pulmonary rehabilitation is vital for individuals living with COPD- and we urge everyone in the community to take action today to breathe better tomorrow. You can send a comment to CMS by clicking here now. Below find a message from the chairman of the U.S. COPD Coalition, Sam Giordano, MBA, RRT:

According to the dictionary, the definition of a coalition is, "an alliance for combined action." Between now and the year's end, the U.S. COPD Coalition (USCC) has been given a chance to prove the definition accurate.

This is a call to action is to all members of USCC, regardless of whether you are COPD patients, loved ones, healthcare professionals, or friends. As we have known for some time, pulmonary Rehabilitation works and the scientific evidence proves it.

It is not news that too many COPD patients struggle to gain access to the few programs currently available. Due to an already too low reimbursement, there simply are not enough programs to meet the demand from our community. Many programs struggle to remain in operation because of the low reimbursement rates from the Centers for Medicare and Medicaid Services (CMS). Additionally, the low rate discourages development of new programs in areas where access is non-existent.

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Tags: Centers for Medicare and Medicaid Services CMS pulmonary rehabilitation reimbursement
Categories: Advocacy

Today is World COPD Day - Take Action!

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November 16, 2016 marks World COPD Day - a time for all of the stakeholders in our community to work together to educate the world about this silent epidemic. Let’s raise our voices for the 300 million individuals living with COPD worldwide. So few understand what it is like living with COPD- here is our chance to educate and inspire.

How can we take action?

  • Take the Global Disparities Survey - a short questionnaire that will help us paint a better picture of our global community.
  • Share your #GoOrange story by uploading a photo to the COPD360social activity feed. Don’t have an orange photo? Click here to create one!
  • Take Action for World COPD Day
  • Join the COPD community on Twitter for the #COPDChat from 3-4p ET. Hosts from the National Heart, Lung, and Blood Institute, Centers for Disease Control, American Lung Association, and American Association for Respiratory Therapists will be answering questions and prompting discussion around the topic of COPD. Use hashtag #COPDChat to join the conversation.
  • Help shape one of our upcoming studies by participating in a focus group. All participants will be compensated for their time. Click here to learn more.
  • Watch and share the “COPD360: Pathways to a Cure” video that describes how we are forming a community and working together to find a cure for COPD.
  • Watch and share a pre-recorded webinar hosted by the COPD Foundation, Caregiver Action Network, and the National Heart, Lung, and Blood Institute around the importance of COPD caregivers in our community.
  • Download and share any of our COPD awareness materials at copdf.co/Go-Orange.

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Tags: awareness GoOrange World COPD Day
Categories: Advocacy

Join Us In a Focus Group

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The COPD Foundation is hosting a series of focus groups by phone, online, and in person to discuss chronic obstructive pulmonary disease, obstructive sleep apnea and overlap syndrome. We would like to receive feedback from individuals on their therapy and disease management; more specifically, the goal of the focus groups is to outline common treatment barriers. By participating in a focus group you can help us shape future research and potentially influence future treatment options! There will be 4-10 people in each focus group.

Phone and online focus group will last approximately one hour. In person focus groups will last up to two hours. All participants will be compensated for their time.

If you or a family member or friend is living with obstructive pulmonary disease, obstructive sleep apnea or overlap syndrome please call a member of the COPD Foundation team at (866-731-2673 Ext. 210) or email at ebenkert@copdfoundation.org to learn more and sign up for one of the focus groups that will take place later this year!

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Categories: Education, Resources and Studies

Go Orange for COPD Awareness Month

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November marks COPD Awareness Month - a unique opportunity for our community to join together to educate the public about a disease that affects 300 million people worldwide. Orange is the official color of COPD awareness - Go Orange!

John Linnell Goes Orange for COPD Awareness

Join the COPD Foundation by celebrating COPD Awareness Month with our worldwide network of partner organizations, pulmonary support groups, families, friends - and most importantly - individuals living with COPD.

Excited to get involved? Here's how:

  • Take the #GoOrange Challenge by visiting copdf.co/Go-Orange. Submit a photo of you and your friends, family members, and pets wearing orange and share it with our COPD360social community. The photo with the most "Likes" will win a $250 Amazon giftcard;
  • Visit our Events Calendar to find a workshop, conference, Breathe Strong Rally, or Harmonicas 4 Health class in your area at copdf.co/COPDEvents;
  • Download and share our #GoOrange social media toolkit, which includes informative statistics and facts that you can use to educate your friends and family. Use the #GoOrange hashtag to share the messages online with your social network;
  • Tell your story and start a donor campaign to help the COPD Foundation find a cure for COPD! Learn how create a donor page by visiting: copdf.co/COPDdonation;
  • The COPD Digest can now be found online! Read the latest here.

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Tags: #GoOrange advocacy COPD Awareness Month Go Orange November
Categories: COPD Foundation Initiatives and Activities

The Long-Term Oxygen Treatment Trial

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The National Heart, Lung and Blood Institute (NHLBI) and the Centers for Medicare and Medicaid Services (CMS) today, announced the publication of the long awaited results from the Long-Term Oxygen Treatment Trial (LOTT) in the New England Journal of Medicine.

Long-term oxygen treatment has already been shown to improve survival and reduce hospitalizations in those with COPD and severely low levels of blood oxygen (i.e. if your saturation rate is equal to or less than 88 percent at rest). Oxygen treatment may also be prescribed if COPD patients have a “moderately low” oxygen saturation rest that falls below 90% with activity or when sleeping. Until now, there was little research that told us whether or not oxygen for this moderate group with moderately low saturation levels at rest (between 89-93 percent) and below 90 percent with activity was beneficial.

LOTT enrolled 738 people with COPD who had moderately low oxygen saturation levels at rest or during activity in a randomized clinical trial where half of the group was prescribed oxygen treatment and half was not. The study found that on average, the patients who were prescribed oxygen treatment received no additional benefit to survival, hospitalizations, worsening symptoms or to quality of life. That means that based on this study, for most COPD patients with moderately low levels of oxygen saturation, oxygen use is not beneficial. At first glance it is easy to be surprised by these results, especially as it relates to those patients who use oxygen during activity. You may fall into this group and find it hard to imagine getting on that treadmill in the morning to get in your steps without sliding on your oxygen.

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Tags: Long-term oxygen treatment trial
Categories: All About Oxygen

We Need Your Comments for the National COPD Action Plan

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The COPD Foundation has long advocated for the need to create a coordinated, comprehensive national plan to tackle the COPD epidemic in the U.S. Earlier in the year, the National Heart, Lung and Blood Institute (NHLBI) hosted the COPD Town Hall meeting to gather input on what should be included in the first ever National COPD Action Plan.

We are pleased to report that the first draft of the National Action Plan has been published!

The NHLBI team has brought together the input from all those at the Town Hall but now YOUR voice is critical. In order for the plan to address the problems faced by patients, caregivers, providers, researchers and more, they MUST hear from you directly about what those problems are and what types of solutions you would suggest.

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Tags: National COPD Action Plan
Categories: Advocacy

5 Things You Should Know About Pneumococcal Disease

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Kip Adams, Chief Corporate Relations Officer, COPD Foundation

Patients living with COPD work hard every day at something most of us take for granted—breathing. As fundamental as life itself, the effort it takes for some of our patients to take their next breath can be hard to watch. One of the greatest risks for patients with COPD is contracting a disease that impacts the lungs, such as pneumococcal disease.

5 things you should know about pneumococcal disease Some estimates show that as many of 1/3 of adults aged 18-64 have a chronic medical condition that increases their risk for contracting pneumococcal disease. That is why it is critical that we educate patients about prevention and ways to keep their disease from worsening.

We are working hard to educate our members about the risks of contracting pneumococcal disease—and why and how they must do everything they can to avoid contracting it. The number one way for anyone at risk for the disease to avoid it is to be vaccinated. Older adults living with COPD and other chronic conditions need to talk to their health care provider in order to ensure they are protected.

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Tags: pneumococcal disease vaccinations
Categories: Tips for Healthy Living

Will Exercise Improve My O2 Saturation?

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Dear COPD Coach,
I know it is important to have a regular exercise program to improve breathing, and that pulmonary rehabilitation is a great way of exercising. Will my exercising also improve my oxygen saturation for daily activities I do without using O2, and will it keep my oxygen saturations higher while doing the 6 minute walk at my doctors?

Thank you,
Into Exercise

Dear Into Exercise,
It is known that muscles that are in better condition do a better job of utilizing oxygen. When you’re in better shape, you can do more, even if your lung condition itself does not change. However, if a person with COPD increases their fitness level through exercise, it cannot be assumed that they will require less oxygen, or no longer need their supplemental oxygen. Again, your lungs are damaged and that cannot be reversed.

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Tags: exercise and COPD O2 saturation
Categories: Coaches Corner

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