John Linnell, COPD State Advocacy Captain
Many of us, as individuals with COPD, wonder what the future holds; not for only ourselves, but more so for the future of COPD. Is the cure right around the corner? Is what I hear about stem cell therapy true? Is a new drug being tested? Is Congress doing anything to help us? Can I do something more? Can I get involved?
YES, you most certainly can, and in ways that could be as easy as sitting at your computer just as you are now!! The fact that you have taken the time to read this means you are already involved in learning more about COPD. Now is the perfect time to become involved in DOING.
The easiest way to start, and a very important one, is to join the COPD PPRN, the COPD Patient-Powered Research Network. This is already well underway, but needs more patients to enroll. Joining is easy and can be done from your computer. You are not committing to anything. You are just filling out a simple survey with some health information that is kept encrypted and secure. If you qualify for a future study, you can decide at that time if it is something you would be interested in helping with. Learn more here.
Another avenue is to explore existing clinical trials. Even if you are not interested in participating in a trial, you can see what research is actually being done today! While there are not nearly as many clinical trials for COPD as there are for other major diseases, there is much being done. If you are looking for trials in your geographical area, simply use the 'Advanced Search' feature. Some trials will pay you for your time. Learn more here.
At the time of publication, Chase Hinckley is embarking on a climb of K2, the second highest mountain in the world, as an act of solidarity with the COPD community this summer. Chase, 34, lives in Colorado and has a penchant for adventure. In 2015, he left behind the security of his engineering job to travel the world and climb it’s biggest mountains. To date, Chase has climbed mountains such as Denali, Rainier, and Kilimanjaro.
K2 – known as the “savage mountain” – is located on the China-Pakistan border and has an elevation of 28,251 feet. It is a notoriously difficult climb with extreme altitudes, lack of oxygen, and extreme storms. To date, only 306 people have stood on K2’s summit, compared to the more than 5,600 people who have reached the top of Mt. Everest.
Chase recognizes that climbing K2 will be a challenge, and he equates this struggle with the daily life of a COPD patient.
Chase is talking about COPD because for him, it’s personal.
“The women in my family have been plagued with the burden that is COPD. My aunt has only 40% lung function remaining. It leaves me awestruck how quietly she battles this illness. The struggle can be isolating and I want everyone to know that they don’t have to hide symptoms or compound the experience with guilt.”
He continued, “I am fortunate to have the opportunity to travel without a nebulizer and the freedom to push my own limits with regards to altitude. I believe that those with and those without COPD can work together to realize our full potential.”
As a mountaineer, Chase understands how it feels to struggle for air, which gives him a unique perspective as someone who is not a COPD patient. Chase decided to make his climb an opportunity to fundraise for COPD. He even created a webpage where you can follow his progress: http://copdf.co/K2Climb.
Helen Sorenson, MA, RRT, FAARC
Palliative care, hospice, end-of-life care… these are all the same thing, right? Simply put, no, they’re not. The fact is that most patients and healthcare professionals really do not understand palliative care.
Not long ago, a fourth-year medical student did some research then wrote an article titled; What’s in a name? Is palliative care too loaded? Stop and think for a minute (before you read any further)…what do you think palliative care is? If you answered end-of-life care, please read on…because it is a lot more than that. Palliative care is “physical, social, psychological and spiritual support given to patients with a life-limiting illness.” So, what’s a life-limiting illness? Let’s see… cancer, heart disease, COPD, pulmonary fibrosis, pulmonary hypertension, diabetes, pneumonia, liver disease, kidney disease…Is each of these diagnoses a “life-limiting” illness? Yes, no doubt about it. But do all these diagnoses require end-of-life care? No, not necessarily. However, all these diseases/conditions are certainly more manageable when patients are provided palliative care, because palliative care is bothersome symptom control.
As you know, COPD diagnosis rates are disturbingly low and as a result, the National Institutes of Health estimate that nearly half of the 30 million Americans with COPD are undiagnosed and unaware of their condition. You may also know the COPD Foundation fights tireless to increase screenings, raise public awareness, and most importantly, improve early diagnosis.
An early diagnosis can change patient’s lives as we at the COPDF have seen firsthand. Getting a diagnosis can be the motivation you needed to finally start using that treadmill or it could mean finally having a name for the symptoms you’ve been living with for years. It could connect you with a dynamite pulmonary rehab team or introduce you to your new best friends in your COPD support group. A COPD diagnosis changes lives and because of our commitment to early COPD diagnosis we were disappointed at the U.S. Preventative Services Task Force’s (USPSTF) recent report this spring recommending against screening for COPD in those who do not display symptoms.
This recent recommendation is shortsighted in its claim that neither early screenings nor available treatment options would alter the course of the disease. As many of you know, this is simply not true. This claim fails to treat a person instead of a disease. COPD treatments such as supplemental oxygen, bronchodilators and inhaled steroids can reduce the symptoms of COPD therefore allowing individuals to continue to live healthy, productive lives. An early diagnosis could mean the difference between continuing to work thanks to disease management strategies learned from your respiratory therapists or finally having the exacerbation that pushes you to file for disability rather than have another attack at work. A diagnosis encourages individuals and their families to become engaged with the patient’s health by learning more about living with COPD and options available to help them manage. Without a diagnosis, too many patients simply stop doing the activities they love in an effort simply to breathe. A diagnosis gives COPD patients the knowledge and tools to manage their disease.
Earlier this year, the COPD Foundation began working with Oregon Health & Sciences University (OHSU) and NTM Info & Research on a Patient-Centered Outcomes Research Institute (PCORI)-funded project designed to identify priorities and create a roadmap for bronchiectasis research.
There are no published U.S. guidelines for bronchiectasis treatment in patients without underlying cystic fibrosis, but in 2010 the British Thoracic Society produced guidelines summarizing current therapies. These guidelines revealed a lack of safety and effectiveness data to guide treatment of bronchiectasis, and highlighted the need for research in many aspects of this disease.
These guidelines did not take a patient-centered approach and to date there has been little or no patient input into the research of this often-devastating disease. There are a number of new therapies being tested, including ciprofloxacin and other inhaled or oral antibiotics. The goals of therapy involve maintaining quality of life and minimizing disease progression and it is believed that a number of untested therapies (e.g. antibiotics, steroids, bronchodilators, hypertonic saline, others) are routinely being used.
“COPD360social has been a lifeline for me. I don’t know anyone else with COPD (in my area). I have found needed info, made new friends (who understand) and I hope I’ve been in some way helpful to the other COPDers. I no longer feel alone....Thank you all.” -Bon Bon
Over 22,000 members from all over 100 countries have connected to form COPD360social.org- the one-of-a-kind social networking community dedicated to helping those affected by COPD. The social platform provides individuals with a chance to meet, connect, and share their experiences from the comfort of their homes. Your thoughts, concerns, fears, and inspiration are important to us. Become a part of our interactive, collaborative community to find friends, learn about events in your area, participate in research, chat with the experts, and learn how to take action – all on your time, at your pace. COPD360social provides our members with a break from the isolation that so many of us experience while living with COPD. We lean on each other during the time we are confined to our homes, and give each other the motivation to push forward.
Launched on World COPD Day, November 19, 2014, the site was developed in an effort to serve as a comprehensive platform for patients, caregivers, providers, and friends in the COPD community. It is a comfortable and secure place to meet people with COPD, their family members, caregivers and friends, as well as healthcare providers. Here you will find answers, access quality educational materials, participate in research, become an advocate, and connect with new friends. You can choose what you want to gain from the community – from sharing ideas and inspiration, to participating in research, or learning how to lobby on Capitol Hill. COPD360social is an invaluable resource for the 30 million of us touched by the third leading cause of death by serving as a one-stop shop for COPD. It is a part of the Foundation’s aim to utilize technology to better understand the patient experience from a holistic perspective.
As is usually the case, summer seems to have gone far too quickly, but in the case of many with COPD, fall cannot come quickly enough. While the changing of the seasons offers cooler temperatures, making it easier to breathe, it also offers challenges.
Allergies impact an estimated 35 million Americans, and can greatly affect those with COPD. There are three seasonal allergy periods throughout the year. In spring, pollen from trees can cause allergic responses, while in summer the culprit is often grass pollen. From late summer to late fall (however in warmer areas the season could last the entire winter), weeds pollinate and become a large producer of inhaled allergens along with mold spores.
The most notable contributor is the ragweed. Ragweed primarily grows east of the Rocky Mountains and is the largest contributor to fall allergy problems. A single plant may produce a billion grains of pollen, and that pollen can remain in the air for long periods of time and travel several hundred miles.
Mold spores develop in autumn and are found in the soil and in the leaves that fall to the ground. Mold spores are easily inhaled, and tend to rise in the morning and fall back to the ground as evening temperatures cool.
For people with already compromised lungs susceptible to seasonal allergies, breathing airborne allergens can greatly complicate their breathing and often require medical treatment.
The world lost a steadfast advocate and a warm-hearted man in the passing of Nick Jones of The Villages, Florida in October of last year. Nick was a trailblazer in the COPD field and he made his mark on the community as the president and co-founder of The Villages “Airheads” - the first COPD support group in his area. The innovative group became the model for other Airheads chapters across the country. Along with his wife Jan, he taught breathing and exercise classes through the Village’s recreational department and “Living Well with COPD” at the Lifelong Learning College. Those who knew Nick realized he spent little time dwelling on things he could not change, and instead devoted his efforts to staying positive and helping others.
His contribution provided individuals living with chronic obstructive pulmonary disease with a forum to learn about their medical issues, exchange ideas, strengthen minds and bodies through exercise, advise young people of the dangers of using tobacco, and make the general public aware of COPD. Among many of the gifts the group provided was the Annual Airheads Scholarship for outstanding high school students to attend college. Nick Jones proved that change was possible with the right attitude, and planted seeds of hope and inspiration- not only to his peers in The Villages Airheads but to the youth in his community as well.
On February 17, 2016, the Villages Airheads came together to honor the beloved founder of their group. The Nick Jones Breathe STRONG Rally commemorated Nick and celebrated his life, passions, and accomplishments. Cheerleaders, speakers, and entertainers spent the day expressing their gratitude to a man who not only helped change their attitude about living well with COPD, but their outlook on life. The education and guidance from The Village Airheads provided the support and encouragement for many individuals to seek early diagnosis and receive proper treatment of the disease.
By Jane Martin, BA, LRT, CRT, Associate Director, Education, COPD Foundation
The COPD Foundation education department has been on the go! Since last fall, the Pulmonary Education Program (PEP) co-hosted two COPD Community Education workshops in Missoula, Montana and Midland, Michigan.
On Saturday, September 19, 2015, over 80 people met at Providence Saint Patrick Hospital in beautiful Missoula, Montana to participate in a day of COPD education, information and support. Many thanks to our two PEP Pulmonary Rehab Centers in Missoula, led by Colleen Holmquist, BS, RRT at Community Medical Center and Susi Mathis, MS, RCEPCES, RN, at Providence Saint Patrick who helped make this event a success.
The day began with health care professionals attending a talk by Scott Cerreta, Director of Education for the COPD Foundation, on “Putting COPD Guidelines into Place.” Dr. Steven Gaskill from the University of Montana then discussed “COPD Co-Morbidities and Exercise, and “Dr. Robert “Sandy” Sandhaus from National Jewish Health presented “COPD or Asthma, Could it be Both?” Scott Cerreta rounded out the morning with “Understanding COPD – Recent Research and the Evolving Definition of COPD.”
The Community portion of a COPD Community Education Workshop is an especially exciting time with individuals impacted by COPD (those diagnosed with COPD, their family members and caregivers) coming together to hear, see and learn and meet others with many of the same concerns.
By John Schall, CEO, Caregiver Action Network
In 1991, two friends – one caring for her mother with Parkinson’s; one caring for her husband with MS – discovered similarities in their issues as caregivers. Realizing that others must be in the same situation, they made it their mission to provide support to others who may not know how to reach out for help and who did not even know the phrase “family caregiver.”
Since 1993, Washington, D.C.-based Caregiver Action Network (the National Family Caregivers Association) has been tirelessly working to advance resourcefulness and respect for family caregivers across the country. There is now so much more support for family caregivers than when CAN began, and much of the progress is due to the work of this organization.
Caregiver Action Network continues to be the nation’s leading family caregiver organization working to improve the quality of life and to promote resourcefulness and respect for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN serves a broad spectrum of family caregivers ranging from the parents of children with special needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. CAN is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.
Some of the major accomplishments during these many years include the huge rise in public awareness of family caregiving as measured by the enormous growth in media coverage; the passage of the National Family Caregivers Support Program; the acceptance of the term “family caregiver” by thought leaders; and the realization by government officials and others that family caregiving is a lifespan issue, not one just restricted to the aging community.
Bronchiectasis is a form of progressive, chronic pulmonary obstructive disease in which the walls of the bronchial airways to one or both lungs become enlarged, infected and permanently damaged. While some causes of bronchiectasis are either congenital - due to a genetic defect, like Cystic Fibrosis or Primary Ciliary Dyskinesia and may already arise during fetal development or in infants and young children - far more common are cases acquired by older children or adults after recurrent infections of the lung or heavy smoking. Damaged lungs are less able to clear mucosal secretions, so mucus may congest in airways, allowing bacteria to thrive there, and in turn causing additional problems. Symptoms of Non-cystic Fibrosis Bronchiectasis (NCFB) include: shortness of breath and persistent coughing. At present, there is no known cure for this condition, but research is underway to help better understand their causes and identify more effective treatments.
Nontuberculous mycobacteria, or NTM, can cause devastating chronic lung infections. NTMs are naturally occurring pathogens which impact tens of thousands of people every year in the United States alone. The bacteria are widely found in the environment, including soil and tap water. Underlying pulmonary problems and prior pneumonia are but a few risk factors. COPD and bronchiectasis as well as a number of genetic diseases including Cystic Fibrosis and Alpha-1 Antitrypsin Deficiency have a statistically demonstrable link with NTM. Immunosuppressive medications such as chemotherapy, prednisone, or drugs used to treat conditions such as Rheumatoid Arthritis, psoriasis and Crohn’s Disease, may increase the risk of NTM infection.
Treatment for NTM lung infections is lengthy and difficult, involving a minimum of three antibiotics for at least 18 months. These antibiotics can be taken in oral, inhaled or injectable/intravenous form.
By Joe Baker, President, Medicare Rights Center
Understanding everything about Medicare, from when you should enroll to what Medicare covers – and doesn’t, to what you will pay and how to lower your costs, just became a whole lot easier for people with COPD and their families, caregivers, and health professionals.
The COPD Foundation is pleased to be working with the Medicare Rights Center, the largest and most reliable independent source of Medicare Information and assistance in the United States, to promote its newest tool, Medicare Interactive.
Medicare Interactive is a free online resource packed with hundreds of answers to Medicare questions to help you navigate the complexities of Medicare coverage. The site’s new design and features ensure that its users can quickly find the Medicare answers they need through smart links to relevant Medicare Interactive pages and case examples, a roll-over glossary, and other helpful resources.
You can create a free profile to bookmark your favorite pages, manage Medicare Right’s newsletter subscriptions, access free exclusive links/downloads, and receive notices about key Medicare dates. As an initial thank you for registering, you will receive a welcome e-packet from the Medicare Rights Center, complete with the exclusive New to Medicare Guide.
Judy Benefiel is a self-proclaimed fighter. She has survived malignant melanoma, a severe subarachnoid hemorrhage, breast cancer, and in 2001, she was diagnosed with chronic obstructive pulmonary disease. When she initially learned about her disease, she hadn’t even heard of the term let alone how to live with it. Soon after her diagnosis Judy found herself in and out of the hospital with lung infections, unable to complete simple tasks, and using oxygen along with several medications just to get through the day.
Ten years later, Judy was accompanied by her best friend Courtney to a routine visit with her pulmonary specialist. Courtney asked the specialist if he would recommend Judy for a lung transplant, and to their surprise, he did. When the Tampa General Hospital stated they would like to see Judy for pre-testing, she was determined to take her life back.
“At this point I knew it was the time to put on my armor and start the fight of my life,” Judy said.
A year and a half later in December 2012, Judy was placed on the list for a double lung transplant. She was visited her doctors regularly and received hundreds of tests during the time she desperately waited. As if she had not been through enough, one of the many tests determined Judy had breast cancer and she would therefore have to be taken off of the transplant list. Judy was devastated.
“It was a very sad time and a lot of tears were shed as they told me I would have to be temporarily taken off the transplant list and they didn’t know if I would be put back on,” she explained.
Judy completed her cancer treatments by June 2013, all the while living with the challenges of COPD and waiting for any good news from Tampa General Hospital. On a typical afternoon she quietly read her COPD Digest and came across an article: Lung Volume Reduction Surgery: Is It For You?
By Stephanie Williams, BS, RRT, Community Programs Manager, COPD Foundation
In January 2016, the COPD Foundation, with a grant from the Academy of Country Music’s Lifting Lives Foundation, partnered with Saint Thomas Rutherford Hospital in Murfreesboro, Tennessee to offer “Harmonicas for Health” through their pulmonary rehabilitation program. The initiative focused on the use of harmonicas to help their patients feel better and breathe better.
The idea was a simple one: encourage people to practice the Pursed Lip Breathing (PLB) technique, and exercise their ‘breathing muscles.’ When PLB is done regularly, it helps to remove carbon dioxide from the lungs and it also helps to create more space in the lung for bigger, fuller breaths.
Playing a harmonica is the perfect way to get people to practice PLB without realizing it. By blowing out into the tiny holes in the mouthpiece, COPD patients are practicing the PLB technique and getting the benefit while having fun. By breathing in through those same tiny holes, the person begins to exercise and strengthen their breathing muscles. And the best part is they don’t have to read music or have any musical experience to practice.
As our planning group prepared for the program, we anticipated having around 6-8 people attend the first meeting. We were pleasantly surprised when we had 24 individuals present at the first class. The group met once a week, for an hour each session and practiced the material in the Player Handbook we provided. The handbook came with instructions on how to play, how to ‘read’ the music, and information to help a person with COPD understand how this program is designed to help.
The National Heart, Lung, and Blood Institute (NHLBI) hosted the first-ever COPD Town Hall meeting at the National Institutes of Health on February 29-March 1, 2016. This meeting was a critical first step in the development of a National COPD Action Plan to tackle the COPD epidemic in the United States.
The COPD Foundation worked with NHLBI to bring together patients, caregivers, government representatives, medical professionals, and others to address the disparities in government funding of prevention, treatment, and research around COPD. On day one, attendees were assigned to working groups that developed objectives and tactics around one of six goals. The multi-disciplinary teams presented the results of their brainstorming sessions to the broader group on day two. The discussions were broadcasted in real-time to online viewers who contributed to the conversation from their homes.
The U.S. Centers for Disease Control and Prevention (CDC) marks its fifth year of ads featuring real people who are living with the effects of smoking-related diseases. The newest ads in the Tips from Former Smokers campaign tell the story of how real people’s lives were changed forever due to their smoking.
Over 30 people have offered their voice and story to the Tips campaign since 2012. Each real story represents millions of Americans suffering from similar illnesses caused by smoking. One such story highlights Becky, 54, who lives with COPD.
Becky started smoking as a teenager in 1976 to fit in with her peers. After attending college in Ohio, Becky attended law school to pursue her dream of working as a public defender. For the next several years, Becky experienced spells of bronchitis and a persistent cough. Despite warnings from her doctors, she could not quit smoking. "I just didn't want to hear it," said Becky. At age 45, she was diagnosed with COPD.
One day in 2012 Becky found herself completely breathless. She called 911 in a panic and was immediately given oxygen when the ambulance arrived. Becky soon learned that she would require a lung transplant and have to quit her job.
“I wasn’t expecting any of this. That absolutely floored me. I just didn’t see it coming,” Becky said. “I finally put cigarettes down for good when it became obvious to me that the dang things were really going to kill me. They had already stolen so much from me; I was not going to let them kill me outright,” she said.
Ever since Caridad, or Cary, was young she knew she wanted to help others. In high school, Cary took a tour at a local hospital with a respiratory therapist and saw him work closely with a nurse. He and the nurse make all the patients they encountered feel more comfortable and Cary was inspired. In 1994, she found herself working as a respiratory therapist at South Miami Hospital.
For six years Cary worked twelve hour night shifts, three days a week in ICU and SICU with critical care patients on ventilators. “I enjoyed being part of a team that would help heal someone back to good health,” Cary said. Two and a half years later, Cary started working a dayshift position at the South Miami Hospital pulmonary rehabilitation center. “It was a dream come true because I always wanted to be involved in education.”
For the past 14 years Cary has been working in South Miami Hospital’s pulmonary rehabilitation center and loves it. We followed up with Cary to learn more about the benefits of pulmonary rehab, as well as the free workshops offered at South Miami Hospital.
What is pulmonary rehabilitation and why is it important for individuals living with COPD?