Life can be stressful, especially if you have a chronic disease. COPD, a chronic, incurable, progressive disease can bring on major compromises to your physical activities and to your emotional wellbeing. No wonder it is normal to feel stress when you have COPD! So what can you do? Let’s start by looking at some common causes of stress for anyone, with or without COPD.
- Common stressors
- The death of a loved one
- Loss of a job
- Financial problems
- Getting married
- Moving to a new home
- Taking care of an aging or sick family member
- Traumatic event such as a natural disaster, theft, or violence against you or a loved one
Most of these big stressors are unhappy events, but we also see that it’s possible to have “good” stress. Yet, sometimes doing something less monumental, such as attending a wedding or a graduation ceremony or visiting a new baby can still be stressful. Simply observing these life events can cause a change in your everyday routine - and maybe lead to a change in your life as a whole.
Lung transplant can be a wonderful thing. Certainly, as a transplant pulmonologist, I am potentially biased here! But a huge part of my job in evaluating patients for possible lung transplant consists of making sure this is the right thing for the individual patient. This includes remaining up to date in all aspects of managing lung disease, to making sure patients have tried – or been considered for – all of the wonderful new therapies that keep emerging for managing COPD (and other lung diseases). But it
also means making sure my patients are as best prepared as possible to undergo lung transplant.
I have always been curious whether things get lost in the shuffle from our patients’ perspective while we focus on making sure they are medically ready and fit for transplant. I recently asked some of my patients who have been transplanted for COPD what things stood out as important to them as they went through this process, and what they appreciated knowing beforehand as the progressed through their transplant journey.
The first comment a patient told me was actually one that I had told them during the early stages of their lung transplant evaluation – and no, they weren’t just trying to flatter me into thinking something I said resonated with them! “You are replacing one set of issues with another set of issues.” I think this is important for anybody with lung disease to remember going into transplant, not just people with COPD. Like any major surgery and certainly with the intensive immune suppression, we need to prevent rejection. Complications are always possible, albeit not insurmountable – sometimes you just need to have that mental grit to handle any setbacks along the way and overcome them successfully. As my patient succinctly put it, “You may have to go through quite a bit, but in the end you will get a substantial gain in your quality of life. You will be able to perform things you thought were no longer possible.” That is precisely why we do what we do.
I lost my grandmother from COPD (emphysema) when I was ten years old. I watched her progressively get worse over the years, and as a small child I didn’t understand why. My grandmother was in stage IV with a FEV1 of 27%. My last memory of her was in ICU on the ventilator. I held her hand and told her I would fight this disease so other families wouldn’t have to go through what our family did.
I dedicated my life from that day forward to bring COPD awareness to families and friends. I’ve developed many novel medical modalities over the years to help patients with COPD and I have participated in several clinical studies to understand the importance of exercise with COPD patients to improve their quality of life.
My greatest accomplishment has been being asked by the Wounded Warrior Foundation to take one of our country’s heroes, from the Vietnam era, to his class reunion at West Point. Our veteran was unable to walk greater than 10 feet at a time without becoming short of breath. Our veteran wanted to be able to walk across the stage at West Point and receive an award that was given to him by his classmates with dignity. At the time, I was with a company that created a one pound wearable ventilator that was uniquely designed to provide positive pressure that significantly increased patient’s tidal volumes and improved ventilation. Our war hero was able to walk across the stage and accept his award and give a short speech to the crowded room full of decorated soldiers, family, and friends.
Bill Clark, Senior Director of Community Outreach, COPD Foundation
The COPD Foundation is saddened to report that John W. Walsh, our founder and president, passed away on March 7, 2017 as a result of complications from an accident in 2016. How do you begin to memorialize a man who was a legend and hero to millions who suffer from chronic illness - not only in this country but around the world? A man who was a beacon of hope for those who once felt alone, a voice for those who felt no one cared, a man who gave a face to a disease that was once hidden, and a visionary who found solutions to problems no one could solve? How do you honor a man who reinvented how research is executed in the COPD space?
When diagnosed with Alpha-1 Antitrypsin Deficiency, a rare genetic form of COPD, along with his twin brother Fred, John did what he always did throughout his life- he looked for answers. A veteran and businessman, his search led him to walk away from his business and co-found the Alpha-1 Foundation, a patient organization dedicated to education and research. John’s efforts led to recognition of the disease across the world as other countries came to adopt the visionary guidelines established for the Alpha community.
Through national and regional conferences, along with dedicated support groups, John’s leadership and vision galvanized the Alpha community. It wasn’t long before recognition led to new and exciting research culminating in the development of the first effective therapy for Alpha-1. When John found that a shortage of the therapy was endangering the community, he co-founded AlphaNet, a groundbreaking non-profit disease management company whose “simple” goal was to improve the lives of those individuals affected by Alpha-1 while at the same time funding vital research for a cure, now totaling over 50 million dollars.
If you had a penny for every time someone asked you to explain COPD - would you be a millionaire yet? COPD, despite affecting millions, is not a household term. In addition to fighting for breath, our community fights for awareness, research funding, and access to life-saving therapies. But we are fighting.
Join the COPD Foundation as a State Captain to make COPD world-known. Help raise awareness by participating in social media challenges or write your elected officials to protect access to respiratory therapists. Looking to do even more? Some of our Captains serve on data safety monitoring boards for clinical trials and others even traveled to the nation’s capital to be a patient voice for the National COPD Action Plan. State Captains are needed in all 50 states, and whether you have a little or a lot of time, are homebound or a rolling stone, we have an activity for you!
State Captains help us organize locally so we can make change nationally, and this year there is much work to be done. We will be working with Congress, the National Heart, Lung, and Blood Institute (NHLBI) and the Centers of Disease Control (CDC) on the new National COPD Action Plan. For the first time ever, we will have a plan that maps out a path to address COPD by growing awareness, diagnosing it earlier and improving treatments, research and policies. We will need State Captains throughout the country to share the plan with their local officials, ask their members of Congress for implementation funds, and ask their members of Congress to support implementation of the plan and work with the community to help put the plan in motion.
Receiving a diagnosis of a chronic
disease can be a scary and confusing
time; and the impact on family
members and children is often overlooked.
While the prevalence of COPD is seen
in an older generation, educating of
loved ones is key factor to promote
understanding and support. This is why
the COPD Foundation is proud to have
partnered with Novartis and Medikidz
to develop a comic book that provides a
creative and innovative way to help those
with COPD explain their condition to
friends and family, specifically children
Medikidz is a children’s medical education
organization that works closely with
healthcare professionals, families, children,
and patients to produce unique learning
materials in an interactive, powerfully-visual
comic book format, thereby helping to
educate children about their health as well
as the health of those around them.
The comic follows the story of Andrew and
Hannah, who are guided by the Medikidz
‘superhero’ team to help them understand
COPD and ways in which they can help their
“When organizations educate the public
about COPD, oftentimes we overlook the
impact the disease has on entire families
and communities. COPD not only affects
those who are diagnosed, but their family
members and loves ones as well, including
children,” explains Fabiana Talbot,
director of communications at the COPD Foundation.
“The MediKidz comic can
therefore have two tiers of effectiveness; not
only as a preventative measure, by showing
children the repercussions of smoking, but
also from an awareness standpoint. We
hope this graphic novel will inspire younger
generations to become future advocates by
working to remove the stigma surrounding
You can find the MediKidz comic online, here.
The COPD Foundation’s Pulmonary
Education Program (PEP) is proud to
offer Harmonicas 4 Health (H4H), the
first nationwide harmonica program created
especially for individuals with COPD and
other chronic lung diseases. This program
was developed and launched due to the
generous support of ACM Lifting Lives, the
charitable arm of the Academy of Country
Duff Maynard, 66 years old, can attest to the
benefits of H4H. Originally from New York, Duff
moved to Tennessee, a state with the highest
rates of COPD in the country, 11 years ago. He is
a former smoker and also lives with asbestosis.
Duff first learned he had COPD about 10 years
ago and has been using a variety of medications
ever since. He has been through pulmonary
rehab for a year and a half ago and is an
active member of the Better Breathers Club in
Duff’s life after his diagnosis didn’t change
much initially, until 3 years ago when he
experienced his first exacerbation. Then
“I couldn’t golf of anymore,” he explained, “...
could barely walk in the stores. Most of my
regular activities (mowing the lawn, working in
the yard, painting, working on my car) ceased. I
just didn’t have the breath to do them.”
Then in early 2016, during one of the Better
Breathing Club meetings, H4H was presented
by Stephanie Williams of the COPD Foundation
who asked for volunteers for the pilot program.
Duff immediately joined as did many in his club.
“I’ve never played the harmonica before. I always
wanted to play a musical instrument and this
was a chance to do it. My wife joined also which
is great because we get to practice together and
support one another,” he said.
Duff has seen the positive impact of the
H4H program ever since. He knows the story
will continue, but shared several impressive
milestones that he has reached since joining
Since its passage in 2008, the COPD Foundation has been committed to monitoring the implementation of Competitive Bidding throughout the country. We believe it is a failed piece of legislation that harms patients. Since its rollout, oxygen
access has become less certain for many patients. The COPD Foundation’s policy team has been working diligently with the Centers for Medicare and Medicaid (CMS),
along with DME partners and concerned community members to limit the effects of
this detrimental policy.
The Competitive Bidding program means companies that provide your oxygen equipment will have to submit bids to Medicare reflecting the lowest price they can provide for the supplies. Medicare will then choose approved companies (called contract suppliers) and set the price based on the bids that were submitted. The supplies impacted by Competitive Bidding, called durable medical equipment (DME),
include oxygen concentrators, walkers, wheel chairs, prosthetic limbs, hospital beds, and mail order diabetes products, among many others. The intention of the bill was to increase competition among DME suppliers and save the government and taxpayers money. However since implementation, there has been an alarming reduction in liquid oxygen access, a more portable and lighter option preferred by many patients which enables them to continue their every day activities. Additionally, we have seen nationwide cuts to service and delivery options.
Our most recent efforts are around lobbying for the passage of S.2736 and H.R. 5210, the Patient Access to Durable Medical Equipment Act (PADME). The PADME Act’s main purpose is to delay the next phase of reimbursement cuts for rural areas by 15 months (October 1, 2017). In addition, it addressed a number of technical issues related to competitive bidding and required a monthly report by CMS to monitor the impact of the cuts on Medicare beneficiary access-access that is critical to millions of COPD patients across the nation.
The Journal of the COPD Foundation
has published new clinical
guidelines designed to assist
healthcare providers in properly
diagnosing and treating Alpha-1
Antitrypsin Deficiency (Alpha-1) in
Alpha-1 is the most common known genetic
risk factor for emphysema, and is often
referred to as “genetic COPD.” Experts
estimate that less than 10% of people with
Alpha-1 have been properly diagnosed.
The guidelines recommend that everyone
with COPD should be tested for Alpha-1,
regardless of age or ethnicity; that anyone
with unexplained chronic liver disease
should be tested for Alpha-1; and that
parents, siblings and children as well as
extended family members of Alphas or
others with an abnormal alpha-1 gene
should receive genetic counseling and be
offered testing for Alpha-1.
Jean Rommes, COPD State Captain and Advocate
As a member of the ATS Public Advisory Roundtable (ATS PAR), I was invited to attend the ATS annual conference in San Francisco. I represented EFFORTS (Emphysema Foundation For Our Right To Survive), an on-line advocacy and support group for people with COPD on PAR. EFFORTS has been sending people to the
ATS conference for many years, so I have been
attending for nearly 10 years- this year with some
As an ATS PAR member, I had responsibilities to
attend and help with the PAR events, especially
the Patient Day which is always held, the day the
conference officially opens. The day began with
the PAR business meeting and continued as PAR
members welcomed patients, made sure they got to
the right rooms and knew where the oxygen refill
stations were located. The day included lunch for
everyone and time to sit at tables with experts in the
field. It was a long day and required a lot of moving
from place to place, something that is made more
difficult when you’re juggling your O2 tank, your
laptop and your conference materials.
Bill Clark, Senior Director of Community Outreach
Today, I write a different kind of memorial
tribute. It is not for someone who had
COPD, but instead for a pioneering
caregiver. What makes this different is that
this particular caregiver only weighed around
30 pounds and traveled our world on four
legs. You might have guessed, Elwood was
a dog, but just not any dog. Elwood, like his
master, was a true inspiration in the early
days of COPD awareness; who brought COPD
awareness and his amazing master national
attention while bringing hope, joy and love to
patients all across the country.
This morning I
received the following
heavy hearts we said
goodbye to our faithful
friend, Elwood Borger
last night. He has
helped our family
forage through some
of the hardest times
in our lives. Farewell
to a dog who had no
For those with COPD, living with lung
impairment can make even simple
tasks seem overwhelming. While
some more elaborate tasks may seem out
of reach, we can still be productive and
save precious energy by simplifying how
we do things.
For example, if your task is as simple as
bathing, you can simplify by purchasing
a large handled bath brush so you don’t
have to reach, using a terry cloth robe to
dry yourself, or maybe even have a shower
or bath chair so you can sit while bathing.
When cooking, it doesn’t take any extra
time to make larger portions so you can
freeze leftovers for times when you don’t
Whether the task is big or small, the steps
are the same:
- Assess the task. Figure out what you
want to accomplish. Decide if all or
part of the task is physically possible or
if you will need assistance, and if the
assistance is available.
- Plan it all out: Make a list of each
step involved, what materials you
will require, what you feel you can
still do yourself and each step that
might require assistance from others.
Establish how each step will be
accomplished. It is important to be
realistic as to what you are capable of
doing at a given time.
- Schedule when you want to begin
and end. Remember, it is not always
advisable to tie yourself to a strict
time table, and that you may need to
adjust the schedule based on how your
capabilities at a particular time or the
schedules of those who might need to
assist you. If possible try to put simpler
steps first and then gradually build as
your stamina increases.
- Assemble beforehand all materials and
tools you plan to use to have at hand.
Let’s look at some real life examples how
people were able to achieve both little and
big accomplishments despite their lung
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?