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Posts Tagged COPD

Air Quality from a User’s Viewpoint

April 26th, 2013 | Author: Jim Nelson

This is a guest blog post from Jim Nelson, an individual living with COPD.

Prior to the major miracle of a lung transplant, I had emphysema and chronic bronchitis, also known as Chronic Obstructive Pulmonary Disease, or COPD. That means that my lung capacity was only a fraction of what it should have been, given my age, weight, etc. The measure of lung function is a major factor in the diagnosis of COPD. I should have been able to expel about three liters of air in a second. My tests revealed that I was only blowing out about 6/10 of liter, or 21% of normal.

from google.com

It also meant that my respiratory system was super-sensitive to air pollution in any form. That included things such as particulate matter–dust, carbon monoxide, and ground level ozone. Ozone at ground level can be a very bad thing, especially for those of us who have enough trouble breathing without any outside interference! Sunlight and hot weather combine with auto exhaust, gasoline vapors, industrial emissions, and chemical solvents to form harmful levels of ozone.

Many urban areas tend to have high levels of “bad” ozone, but even rural areas are subject to increased ozone levels because wind carries ozone and the pollutants that form it hundreds of miles away from their original sources. As our population ages and the effects of tobacco use damage more and more lungs, it will become even more important to concentrate on improving the quality of our air.

Despite our best efforts, bad air will tend to find us. We owe it to ourselves to shy away from smokers, to stay indoors on bad air days, to wear a surgical mask if we are exposed to pollutants. Roll up the car windows and use the air conditioner if the outside air is loaded with dust or smog. If you are exposed to dust or pollen or the like, a shower before bed is a good idea.

What advice can you offer to others living with COPD when it comes to managing bad air quality? What are some things you do?

Tags: air-quality, bad air quality, breathing, clean air, COPD, lung capacity, lung transplant, smog | Category: Community, Faces of COPD, General, Personal Stories | 1 Comment » | » Share

Script Your Future Provides Patients with Tools for Medication Adherence

April 25th, 2013 | Author: Katelyn Turner

With three out of four patients in the United States not taking their medications as directed, the COPD Foundation has joined the National Consumers League (NCL) Script Your Future campaign to help raise awareness among patients about the health consequences of not taking medication as directed. More than one-third of medicine-related hospitalizations and almost 125,000 deaths in the United States each year are due to people not taking their medicine as directed.

“Medication non-adherence is a complex and widespread, national problem” said Scott Cerreta, BS, RRT, Director of Education for the COPD Foundation. “Educating the public and encouraging dialogue with their health care professionals are important steps toward improving medication adherence in our country. Script Your Future shines a spotlight on this public health issue and provides consumers with the tools they need to adhere to their medication and ultimately live healthier lives.”

http://scriptyourfuture.org/tools/

The three-year campaign, focused on increasing awareness of the importance of medication adherence among patients in general, and specifically those who suffer from three chronic conditions: cardiovascular, diabetes, and respiratory disease, has relied on partners like the COPD Foundation to reach millions of patients throughout the United States. Script Your Future, launched in May 2011, is a national campaign that includes targeted outreach in six cities around the nation – Birmingham, AL; Cincinnati, OH; Baltimore, MD; Raleigh-Durham, NC; Sacramento, CA; and Providence, RI.

Script Your Future is supported by a coalition of more than 130 public and private partners, including the COPD Foundation as well as other chronic disease groups, health care professional groups, health insurance plans, pharmaceutical companies, business organizations, consumer groups, researchers, and government agencies. The U.S. Surgeon General Dr. Regina Benjamin has also supported the campaign’s efforts.

The campaign offers tools to the public at its website, www.ScriptYourFuture.org. Tools include free text message reminders, interactive videos, sample questions, medication lists, charts to keep track of medicines, and fact sheets on common chronic conditions such as diabetes, asthma and high blood pressure.

These resources, coupled with many COPD Foundation educational materials, aim to help patients better understand the importance of medication adherence. In addition, the COPD Information Line (1-866-316-COPD) is staffed with individuals living with COPD and caregivers who can talk with patients about the importance of taking their medications as prescribed. Associates can also provide resources to assist patients with lowering out-of-pocket costs and other materials like the booklet: Optimal Care for COPD, Including Using Your COPD Medications for Maximum Effectiveness.

Tags: COPD, COPD medications, medication adherence, Script Your Future | Category: General | No Comments » | » Share

Perplexed about Pulse-Oximeters?

April 24th, 2013 | Author: COPD Coach

Dear COPD Coach,

I would like to get a pulse-oximeter to keep tabs on my breathing. On checking prices I found that there are several for as little as $20 dollars and some that cost over $200. I am really confused. I don’t have a lot of money to spend. What should I do?

-Perplexed

Dear Perplexed,

For a number of years in this country, pulse oximeters were very expensive and considered a prescription item. In the last few years we have seen a number of imported meters come on the market at a very low price point. While this may seem like a great deal, for most, if not all, it basically is a monumental waste of money and can lead to serious consequences.

(boston.com)

If used correctly, a pulse-oximeter can be a very useful tool for a lung compromised individual. It can tell us when our oxygen levels are dropping, if we are being properly saturated with our supplemental oxygen, and in many cases give us advanced warning of an impending exacerbation (times when our COPD symptoms flare up. If the meter is inaccurate, or gives false readings it will result in either a false sense of security or send us running to the doctor when there really isn’t anything wrong.

As I mentioned in a previous letter, I recently went to a trade show where several importers were selling pulse-oximeters. I tried 10 different models and never could get a reading. To eliminate the possibility that it might possibly be a problem with me, I went right over to a booth of a well established company and tried their lowest cost model and immediately got a reading.

If you feel you need a pulse-oximeter, my best advice is the following:

1. Buy as good of a device as you can afford. If you need to wait to save enough money you are still better off than purchasing a device that will not function correctly, if at all.

2. Make sure whatever device you select is fully returnable if it does not work correctly.

3. Purchase a unit that is powered by either AA or AAA batteries, and not expensive medical grade batteries.

4. Take the unit with you to your doctor’s office or pulmonary rehab session and see how the readings compare with his calibrated unit. If readings between the two are not very similar, return the unit.

5. Speak with a professional as to how to understand your readings, and what readings would be concerning.

Lastly, remember that pulse-oximeters do not function well with all people and situations. Cold fingers, finger nail color or skin pigmentation can all effect readings. Also, never base results on one reading, but instead a number or readings – a trend — over a period of time. Pulse-oximeters are not a diagnostic tool in of themselves, but instead should only be considered a “snap shot” of your breathing at the time the reading is taken. Pulse oximetry cannot, and does not, replace more elaborate medical tests available to the medical professional.

-The COPD Coach

Ask the Expert 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. You can address your emails to any of the following: COPD Coach, Caregiver Coach, COPD Doctor or COPD RT.

Tags: Ask the Expert, COPD, pulse oximeters, supplemental oxygen | Category: Ask the Expert, Community, Healthy Living, Management, Personal Stories | No Comments » | » Share

Why Support Medical Research?

April 8th, 2013 | Author: Fabiana Talbot

You have probably heard about the potentially devastating affects of the government sequestration — the automatic spending cuts implemented by Congress to reduce the federal deficit. The 5.1% across-the-board cuts went into effect March 1, 2013, and the country is beginning to experience the consequences.

Medical research programs are not excluded from the policy, which has raised quite a bit of concern in the health community. It has been estimated that the National Institutes of Health (NIH) medical research budget will now be cut by $1.5 billion, resulting in 1,380 fewer research grants being funded this year.

Advocates at the Rally for Medical Research, April 8, 2013

In response, 200 partnering organizations and thousands of individuals gathered in Washington, DC today as a part of the Rally for Medical Research. The program was moderated by journalist Cokie Roberts, and featured actress Maura Tierney, Members of Congress, patients, and their families.

Click here to see video coverage of the Rally for Medical Research!

Not only does NIH funding mean support of life-saving research and discoveries, but promotes economic growth as well. “Funding medical research means more jobs and a more competitive US in the global economy,” said Representative Chris Van Hollen of Maryland. Representative Rosa De Lauro added, “NIH research supports jobs, $1 of investment leads to $2 in economic development.”

The COPD Foundation and its membership advocated alongside other health organizations at the rally. 80 COPD advocates participated online, and sent 240 messages to their Congressional representatives in support of NIH. We in the COPD community know how critically important medical research is in developing new treatments, and ultimately a cure, for COPD. We were proud to stand by NIH today, and we will continue to support sustained investment to improve health and save lives.

Tags: COPD, COPD research, Medical Research, NIH, Rally for Medical Research, sequestration | Category: General | No Comments » | » Share

Jamie Sullivan to serve on PCORI’s First Multi-Stakeholder Advisory Panel

April 3rd, 2013 | Author: Katelyn Turner

Jamie Sullivan, director of public policy and advocacy at the COPD Foundation, will serve on one of the Patient-Centered Outcomes Research Institute‘s (PCORI) first multi-stakeholder advisory panels, “Improving Healthcare Systems.”

Jamie Sullivan

“Improving Healthcare Systems” is one of four panels which will be instrumental in helping to refine and prioritize research questions, provide needed scientific and technical expertise, and offer input on other relevant issues.

PCORI helps people make informed health care decisions, and improves health care and delivery and outcomes by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader healthcare community.

Jamie will guide PCORI on critical research questions for possible funding, and ensure its work remains patient-centered.

“Too often, COPD patients fall through the cracks because they are not diagnosed or shown how to properly manage their conditions. The PCORI works to improve issues such as care coordination, transitions in care, and many other issues that challenge those living with COPD. I look forward to ensuring that the voice of the COPD community will be heard,” she says.

Tags: care coordination, COPD, COPD Advocacy, copd community, COPD management, COPD research, Improving Healthcare Systems, Patient-Centered Outcomes Research Institute, PCORI, transitions in care | Category: Community, News | 2 Comments » | » Share

First-Time Inclusion of COPD in Hard-Hitting Anti-Smoking Ad Campaign

March 29th, 2013 | Author: Katelyn Turner

The Centers for Disease Control and Prevention (CDC) has, for the first time, depicted the impact of COPD in its national ad campaign, Tips From Former Smokers. The campaign highlights the overwhelming human and financial toll on the nation caused by smoking.

“The influence of the CDC ads, showing people living with the very real and painful consequences from smoking, will have a far-reaching impact and fuel our efforts to build public awareness, involve community leaders, and expand our out-reach to state officials and employers,” says John W. Walsh, president and co-founder of the COPD Foundation. “There is good evidence that supports the use of hard-hitting images and messages to encourage smokers to quit, to keep children from ever beginning to smoke, and to drastically reduce the harm caused by tobacco.”

Michael, photo taken from cdc.gov

The ad depicts Michael, an Alaskan native who was diagnosed with COPD at age 44. A smoker since he was nine-years-old, Michael ignored the symptoms until age 52, when he awoke gasping for air. He quit smoking that day and has since had to have part of his lungs removed. Living with COPD means that Michael now needs a lung transplant. Michael offers this advice, “If your doctor gives you five years to live, spend it sharing your wisdom and love with your children and grandchildren so they have something to remember you by.”

The campaign’s key messages include:

For every person who dies from a smoking-related illness, 20 more Americans live with an illness caused by smoking.
30 percent of people have been diagnosed with COPD continue to smoke.
Individuals who need help quitting smoking can log on to www.cdc.gov/tips.

In 2012, the CDC revealed the world’s largest telephone health survey, demonstrating the severe impact of COPD in its Behavioral Risk Factor Surveillance System (BRFSS). Currently, an estimated 15 million U.S. residents are diagnosed with COPD. The data shows that 24.9 percent were never smokers, 38.2 percent were former smokers and 36.9 percent were current smokers.

For more information on Tips from Former Smokers, please click here.

Tags: anti-smoking, CDC, COPD, quit smoking, Smoking Cessation, Tips from Former Smokers | Category: Community, News, Personal Stories | 1 Comment » | » Share

Can COPD be inherited?

March 27th, 2013 | Author: COPD Coach

Dear COPD Coach,

I am 40 years old and have noticed recently that I have been getting out of breath more easily than I used to. I do not exercise like I should, so maybe I am just out of shape. What worries me is that I have a history of COPD in my family. A grandparent on each side of my family died of lung problems, and my mother was diagnosed a few years ago as having COPD. I am really afraid to seek some help because I know what they are going to say. Here is my question. Can COPD be inherited?

–Looking for answers

Dear Looking,

We know one inherited form of COPD. It is called Alpha-1 Antitrypsin Deficiency. It is inherited from both your parents, however if only one parent is a carrier, you could well be a carrier also. Alpha-1 was discovered 50 years ago, and because it is indeed inherited, it is a prime candidate to test for especially if there is a history of lung disease in the family.

Alpha-1 is the lack of a protein in the blood called Alpha-1 Antitrypsin. This is a protein that is produced in the liver and is used by the body to protect the lungs from inflammation caused by an infection or irritants like tobacco or pollution. If you have low levels of this protein, or the protein you make is abnormal and cannot get out of the liver, lung disease can occur. Interestingly enough, it has been documented that cigarette smoke has a tendency to render the protein inactive, so smokers who actually do not have Alpha-1 simulate the disorder through cigarette smoke.

Source: www.alpha-1foundation.org

The test for Alpha-1 is a simple, free blood test that you can actually do at home. For information on how to obtain a home test kit call our information line at 866-316-COPD (2673). Here is the important thing to remember: If you are an Alpha-1, then you also carry the gene which can then be passed on to your children. It is our firm belief that ALL people with COPD as well as those who have a history of lung disease in their family should be tested for Alpha-1!

As to whether other forms of COPD are inherited, we believe the answer is probably yes, we just do not have the clinical proof as of right now. We have recently completed enrollment in a COPDGene® Study, which we hope will begin to answer that exact question. The thought is that if we can find the genetic link or cause, new targeted treatments can be developed and ultimately a cure! In fact, there is a treatment for Alpha-1 that has been shown to slow the progression lung damage, but it is not a cure.

As for being afraid to find out if you indeed have COPD, my advice would be that it would be much worse if you didn’t find out. COPD is now the 3rd leading cause of death in the United States, and most people with COPD are not identified until their symptoms are so bad that they can no longer be ignored. While COPD is not curable, if diagnosed early, with proper treatment and lifestyle changes (avoiding tobacco and irritants) you prognosis is greatly improved and the decline can in most cases be drastically slowed down.

The most immediate step you can and should take is if you smoke, stop smoking and avoid second hand smoke. If you are exposed to other irritants such as strong chemicals or pollution, stop or limit your exposure. Speak with your doctor about your symptoms and get appropriate medication if required. Lastly, stay active and establish a regular exercise routine (speak with your doctor about what exercises would be safe and beneficial).

COPD is not necessarily a death sentence, but it is for many a call for a lifestyle change. The steps you take now, can greatly extend your life and allow you to remain active much longer!

Hope this helps, and keep us posted.

–The COPD Coach

Ask the Expert 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.

Tags: Alpha-1, alpha-1 antitrypsin deficiency, COPD, genetic COPD, inherited COPD | Category: Ask the Expert, Community | 2 Comments » | » Share

Advocacy Day on Capitol Hill–A success because of YOU!

March 18th, 2013 | Author: Aimee Bulthuis

On March 12, advocates from both the COPD Foundation (COPDF) and the American Association for Respiratory Care (AARC) convened on Capitol Hill to discuss increased Medicare patient access to respiratory therapists, and asked our members of Congress to join the Congressional COPD Caucus to show their support for the COPD community.

Despite the rainy conditions in Washington, over 100 RTs and a dozen patient advocates visited over 300 congressional offices!

Advocates spoke to both Democrats and Republicans, Senators and Representatives, asking for their support for the Medicare Respiratory Therapist Access Act of 2013, which would amend Medicare Part B to add coverage of pulmonary self-management education and training

From left to right: Jim and Mary Nelson, Joe Morrison, his dad Chuck (seated, left), Marshall Swanson, (seated, right) and RTs Dave and Joanne (back row, standing) on Capitol Hill!

From left to right: Jim and Mary Nelson, Joe Morrison, his dad Chuck (seated, left), Marshall Swanson, (seated, right) and RTs David Allain and Joan Misustin (back row, standing) on Capitol Hill!

services when furnished by qualified respiratory therapists in the physician practice setting to Medicare patients who have been diagnosed with COPD, asthma, pulmonary hypertension, pulmonary fibrosis and cystic fibrosis. If enacted, this new benefit will not only enhance patient access to respiratory therapists, it will also provide Medicare pulmonary patients with the tools they need to lead healthier lives through self-management of their disease. With greater access to respiratory therapists, patients will have more sufficient disease management training, which in turn will result in lower mortality rates and an improved quality of life for COPD patients.

Advocates also asked their members of Congress to join the Congressional COPD Caucus, which is a bipartisan caucus that works to progress positive COPD policy.

In addition to the physical meetings on Tuesday, March 12, last week was also Virtual Lobby Week, and together, patient advocates across the country stepped up and almost 1,500 letters have been sent supporting the Medicare Respiratory Therapist Access Act of 2013!

But we are not done yet! Please continue to take action and help us reach 2,000 patient letters sent. Help the COPDF and the AARC change policy to benefit the entire COPD community and take action today!

Click here to access the COPD Foundation Action Letter

Click here to access the AARC Action Letter

Tags: AARC, access to respiratory therapists, access to RTs, advocacy, American Association for Respiratory Care, capitol hill, COPD, COPD Advocacy, COPD legislative issues, lobbying, respiratory therapists, RTs | Category: Community, News | No Comments » | » Share

Pulmonary Rehabilitation Week–How are you celebrating?

March 13th, 2013 | Author: Katelyn Turner

Did you know that this week, March 10-16 is Pulmonary Rehabilitation Week? Pulmonary rehabilitation (Pulmonary rehab) does not improve lung function, not even a little bit. It works with the patient to improve overall physical ability, health management and emotional function. When lungs are damaged, they’re damaged for good. That’s what makes Pulmonary Rehab such a challenge compared to Cardiac rehab in which case you can repair and strengthen the heart.

Your regimen can consist of exercising, nutrition counseling, and education about your disease. Instead of just dealing with one physician, you may be working with a team—specialists in the different areas that make part of your rehab program, such as doctors, nurses, respiratory therapists, dietitians, and exercise specialists.

Education about your disease is a very important step in improving your health, and this may be part of your rehab program. You may learn about your symptoms, available treatments, and techniques to manage your symptoms including what to do in an exacerbation.

Knowing the importance of pulmonary rehab, the COPD Foundation has created the Pulmonary Education Program (PEP).

What is PEP?

The COPD Foundation recognizes the challenges and high costs confronted by pulmonary rehabilitation facilities in providing individuals impacted by COPD, as well as their caregivers, with current, credible, and quality educational materials. Individuals with COPD who participate in pulmonary rehabilitation are actively working to improve their lives through education and self management programs. The COPD Foundation wants to assist in these efforts by providing educational materials for pulmonary rehabilitation centers and their staff, free of charge.

In addition, this program offers a unique opportunity to reach individuals diagnosed with COPD and ensure that they receive ongoing support, resources, and the necessary tools for proper disease management to promote long-term benefits after rehabilitation. Participating pulmonary rehabilitation centers will be asked to assist in outcome measurements. In addition, pulmonary rehabilitation centers will allow individuals with COPD opportunities to provide feedback regarding PEP.

What do you get?

Three Kits:

Pulmonary Rehabilitation Centers, materials and information designed specifically for the pulmonary rehabilitation staff.

Participant Welcome Packets: This packet is provided to every COPD individual who enrolls in the Pulmonary Education Program. The packets will include essential materials beneficial for them, as well as caregivers.

Participant Graduation Packets: This packet will be provided to individuals with COPD who complete their pulmonary rehabilitation program, offering them a connection for successful continuation of self-management.

Other Benefits

Education Days: The COPD Foundation will provide pulmonary rehabilitation centers with the opportunity to host education days in their communities. A COPD Foundation Education Day is a full-day event featuring expert speakers for both patients/caregivers (4 hours) and health care professionals (4 hours CEU/CME). A wide range of topics including but not limited to: pathology, treatment, self-management, nutrition, exercise, health care reform, lung transplant, etcetera will be presented.

All materials and shipping, free of charge, including COPD educational materials for health fairs, in-patient education and more!

Ongoing support after graduation

We know you work hard in pulmonary rehab to help your patients breathe better and improve their health and well being! However, too often after graduation they fall back to old ways and into a downward spiral, slipping back into inactivity and repeated exacerbations, with or without hospital readmissions. The COPD Foundation’s PEP (Pulmonary Education Program) On Track with COPD Ongoing Support Program is designed to provide ongoing information, support, motivation and accountability to Pulmonary Rehab graduates in order that they continue, long-term, with the gains they made in Pulmonary Rehab. Even for patients who participate in Phase III, On Track may be of benefit by providing this additional layer of connection and support.

For more information, contact Jane Martin: jmartin@copdfoundation.org.

Tags: COPD, exercising, nutrition, pulmonary rehab, pulmonary rehabilitation | Category: Community, Healthy Living, Management | No Comments » | » Share

Women & COPD

March 8th, 2013 | Author: Sheela Cao

Today we celebrate women around the world. Today we encourage women with COPD to take care of themselves, as always. Today is International Women’s Day.

Many people think COPD affects men more than women. But according to recent data from the Behavioral Risk Factor Surveillance System (BRFSS) released by the Centers for Disease Control and Prevention (CDC), women were more likely to report COPD than men (6.7% compared with 5.2%).

(taken from www.lifescript.com)

“Recognizing symptoms early and acting on them are vital for a brighter COPD prognosis. Women with COPD are more likely than men with COPD to experience shortness of breath and reduced airway sensitivity, and to have coexisting conditions such as anxiety and depression. Women are more likely to experience anxiety than men because of the shortness of breath and also the fact that women tend to be more connected with their body and emotions,” according to an article from EverydayHealth.com.

So we encourage women to take more proactive measures to work with their doctors.

Don’t downplay symptoms. A cough and shortness of breath may not just be signs of aging. Call your doctor and ask them any questions you have, or call our C.O.P.D. Information Line at 866-316-2673 and talk to them about what you’re experiencing.
Request lung function testing. Spirometry can provide a COPD diagnosis, but because it’s not currently recommended as a screening test, you’ll have to ask for it.
Quit smoking. Quitting smoking is hard, but pulmonologist MeiLan Han, MD, an assistant professor of internal medicine at the University of Michigan says that a woman’s lungs might actually see a greater benefit from quitting than men’s do.
Enroll in pulmonary rehabilitation. You can learn how to be active, how to eat right, and manage your daily activities with COPD.

Tags: BRFSS, CDC, COPD, COPD and women, COPD statistics | Category: Community, General | 2 Comments » | » Share