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.