Posts in the Community Category

The COPD Foundation Blog Has a NEW Home!

May 1st, 2015 | Author: Katelyn Turner

As you probably know, the COPD Foundation launched the COPD360social.org networking platform in November 2014. The site is an invaluable resource by serving as a one-stop-shop for COPD: access quality educational materials, participate in research, become an advocate, and connect with new friends. It allows us to meet, chat, collaborate and support one another- and now you can read the Faces of COPD blog posts on COPD360social.org! We want to hear from patients, caregivers, and professionals daily.  Your thoughts, concerns, fears, and inspiration- become a part of our interactive, collaborative community to friends, learn about events in your area,COPD360ourcommunityonline_AAcard chat with the experts, and learn how to take action- all on your time, at your pace. At COPD360social you can:

  • Create a personal profile describing yourself
  • Get to know others with COPD
  • Ask a question
  • Start a discussion
  • Share your story
  • Comment on a blog
  • Access educational materials
  • Find out about COPD events in your area and across the country
  • Find a pulmonary rehabilitation program near you
  • Find a breathing support group near you
  • Make a difference through research
  • Have a voice in policies and laws
  • Be inspired!

There is a lot of information on the internet. Sometimes it can be pretty overwhelming. It can be hard to know what’s true and what’s not, and which are proven treatments and those that don’t have scientific support. With COPD360social you can be confident you are getting quality information from a trusted source. Join COPD360social, because we are stronger when we work together. Visit www.COPD360social.org to create your profile and access future COPD Foundation blog entries.

Smoking and COPD – We Can Help

January 7th, 2015 | Author: Katelyn Turner

The Centers for Disease Control today reported that close to half of U.S. adults over 40 who live with asthma or COPD still continue to smoke. The information follows a recent CDC report which found that 15 percent of Americans between 40 and 79 years of age suffer from an obstruction of the lungs, such as COPD. The study concluded that 46 percent of adults between the ages of 40 and 79 with COPD currently smoked, with the statistic rising to 55 percent of individuals with “moderate or worse” levels of the disease.

[http://www.cdc.gov/nchs/data/databriefs/db181.htm]

[http://www.cdc.gov/nchs/data/databriefs/db181.htm]

Researchers found that rates of smoking for individuals with COPD and similar diseases more than doubled that of people who do not live with such illnesses.

“Cigarette smoking is the most important, but not the only, risk factor for COPD in the United States. The single most important intervention a smoker with COPD can do is to stop smoking. However, COPD often progresses in patients long after they have stopped smoking, and up to 25% of people with evidence of COPD have never smoked. The COPD Foundation continues to pursue better strategies to prevent, treat, and some day, cure, COPD,” said David M. Mannino, M.D., member of the COPD Foundation’s Board of Directors and Professor at the University of Kentucky College of Public Health.

The COPD Foundation is committed to assisting those who live with COPD and their efforts to quit smoking. The Foundation recognizes the various challenges our community members face and offers peer-to-peer support for those who wish to quit. If you live with COPD and would like to speak with someone directly about your options, please call our C.O.P.D. Information Line at 1-866-316-2673, Monday-Friday, 9 a.m. – 9 p.m. EST. You may also visit www.COPD360social.org for online peer support.

For more information about smoking cessation, please visit the COPD Foundation website here.

Read the full CDC report here.

Running for his Father and the COPD Community

January 5th, 2015 | Author: Katelyn Turner

Justin Daniels is a distance runner from Richmond, Indiana who is dedicated to honoring those who live with COPD by racing in all 50 states in 2015. He started his hobby when his father Leonard, 60, was diagnosed with COPD. “His lungs don’t work very well, so I am making it my mission to spread awareness about this disease,” Justin says. “I set up a booth at each event I am running with information that I am able to pass out to anyone wanting to know more about what I am doing. My mom helps pass out the information while I am running my races, but before and after I am at the booth or walking throughout the area asking people if they know someone living with COPD.”

The COPD Foundation caught up Justin to learn more about his efforts:

Q: How long have you been a runner?

A: I started out running while I was in high school as a Junior and Senior where I was a member of the cross country team as well as the track team. I started getting serious about distance running in 2011 wfaces1hen I found out  my dad had COPD. I felt like I needed to do something not only for him but for everyone else living with the disease. I knew there wasn’t much I could really do besides make people more aware of what COPD actually is, as well try and raise money to help find a cure.

Q: How did you get involved in raising awareness for COPD?

A: I feel there are so many people living in the United States alone that know nothing or very little about what COPD is and how they can get treated to live a better life. I have worked at Reid Hospital in Richmond, Indiana for almost 2 years now and I see a lot of COPD patients in the ICU. I feel that with increased education they might be able to avoid a trip to the hospital and could have a better chance at living a more normal life.

Q: When you started your endeavor two years ago, what was your main goal?

A: When I first started doing the marathons 2 years ago, my main goal was to run a marathon in honor of my dad and everyone else living with COPD. After running that first marathon I felt like I couldn’t do another one because of the pain I was in, but after awhile I thought about how my dad and everyone with COPD endure a lot more pain, so I continued.

Q: What are your goals now?

A: My current goal is to run a marathon in all 50 states; I would like to do this as soon as I can. On November 1st, 2014 I completed my 4th marathon – my biggest and toughest race so far. I raced the Chicago marathon on October 12th, 2014 and I wanted to see how I would feel after only taking 2 weeks off. I actually felt really good, so now I know I can run races closer together. I feel running in every state will give me a chance to spread the word and pass out information to as many people as possible –  just in case they have symptoms so they are able to get checked out by their doctor. It also gives me the chance to meet COPD patients that live with the disease on a daily basis. I want the races to give patients hope and reassurance that there is someone out there taking action to give them a voice.

faces2Q: What inspires you to continue racing for COPD awareness?

A: My main inspiration to keep running to bring awareness to COPD is my dad and the millions of people living with COPD each day. My dad and I have a very close relationship with each other. Every other person with COPD has family that care about them as well. I feel this is the least I could do to honor them the best way I can. On days when the weather isn’t perfect or I’m too tired, I look around and think,  “My life’s not so bad,” which then inspires me to get out the door and go.

Q: What advice do you have for others who would like to take similar action?

A: My advice for anyone who would like to take action is to research as much information you can so you have knowledge of what the disease actually is. I also think whatever you choose to do to make people aware, make sure you give it 110% all the time, even when you think it may not be possible. You can achieve anything if you really want to – it just may take more time.

You can find Justin’s “Run for a Cure” Facebook page here.

Alpha-1 Awareness: #AreYou1?

November 24th, 2014 | Author: Katelyn Turner

At least 100,000 Americans live with Alpha-1 Antitrypsin Deficiency (Alpha-1), but fewer than 10% have been diagnosed. Alpha-1 is the most common known genetic risk factor for emphysema. Are you 1? That is the question the Alpha-1 Foundation is asking YOU for COPD/Alpha-1 Awareness Month.

Take part in the  Alpha-1 activities happening this month!

  • As part of the “I am 1. Are you?” awareness campaign, the Alpha-1 Foundation wants you to record a video of yourself or a loved one and post it on Facebook and/or other social media sites. Make sure to use the hashtag #AreYou1 and include a link to alpha-1foundation.org/awareness.

  • Participate in the Alpha-1 Art Auction! In November 2013, NASCAR drivers showed their artistic side for Alpha-1 Awareness when they created art alongside children living with Alpha-1. Now you have a chance to bid on their creations! Proceeds will benefit the Alpha-1 Foundation’s research programs.

Take a look at the artwork and participate in the auction here.

Spread the word about Alpha-1 by downloading the fact sheets below and sharing with friends and family. Don’t  forget to ask – #AreYou1?

Fact Sheets:

The Portable Oxygen Concentrator Dilemma

November 21st, 2014 | Author: Katelyn Turner

This opinion piece was written and submitted by COPD community member, Tony St. Amant of Chico, California.

The other day I received an email announcing a portable oxygen concentrator (POC) weighing less than two pounds with a battery life of three hours, and even longer with supplemental batteries. Wow! A two pound oxygen source that could operate for three hours or more! Absolutely dazzling to anyone who has been tethered by supplemental oxygen for any length of time–except, the devil is in the details.

I scanned the manufacturer’s product webpage to find out how much oxygen this little dynamo can provide, but it’s not there. There is only an indirect reference to a “2 pulse setting.” What in heaven’s name does that mean? Is it a shadowy implication that this little baby can output 2 liters per minute (LPM)? If not, what does the “2” mean? I need to know, so I start digging through the support literature. The cut sheet is no help. It contains substantially the same info as the web page.

port

[lublockonline.com]

Finally, I find the Patient Manual—you know, the document you normally read after the unit is bought, paid for, and delivered. And there it is, on page 30 of the 40 page manual, almost an answer. Each pulse delivers 17.25 milliliters (ml) ± 10%. But, unlike most pulse dose specifications I’ve seen over the years, this one doesn’t specify a respiration rate. Will it deliver that pulse dose at 10 breaths a minute, 15, 20, more? There can be a world of difference in the unit’s therapeutic value.

So let’s take a look at what I will call best case oxygen output. Let’s assume the machine is operating at the upper boundary of output: 17.25ml + 10%. That would be 18.975ml per pulse. If it will provide that output at a fairly normal resting rate of 15 breaths per minute, its total output would be about 285ml per minute or about .3 liters per minute. If it will provide that output at a somewhat elevated respiration rate of 20 breaths per minute, its total output would be about 380ml per minute or about .38 liters per minute. But who knows? That information is not disclosed. And what’s the real value of a two-pound $2,000+ POC that might be insufficient under mild exertion?

Of course, it’s not as simple as that. A person who has a prescription for 2 LPM continuous doesn’t actually inhale two liters of output from any oxygen source. The actual amount inhaled is dependent on respiration rate and other factors. But there is no industry or government standard for comparing pulse to continuous flows. Additionally, a POC that delivers a nominal continuous flow of 2 LPM doesn’t actually deliver 2 LPM of oxygen. For POCs, oxygen is normally somewhere between 87 and 95 percent of the flow. Therefore, the oxygen delivered at 2 LPM continuous flow is typically between 1.74 and 1.9 LPM.

So if you have an oxygen prescription for as little as 2 LPM, will this hyped up pulse-flow mini-POC meet that requirement? It’s not clear at all that it will, nor is the real pulse flow equivalency clear for any other POC. And even if the POC will deliver 2 LPM of oxygen at rest, will it deliver it at an elevated respiration rate during physical activity? The only information available to the potential POC buyer is that published by each manufacturer, with no assurance that the basis for the information is consistent between manufacturers.

If “buyer beware” ever applied to any market, it applies to the POC market. If you’re shopping for a POC, good luck. Please hope with me that the U.S. Food and Drug Administration or the industry will come up with standards that will help individuals with COPD accurately match their needs with POC oxygen output.

-Tony St. Amant
Chico, CA

COPD Awareness Month – Still Going Strong

November 20th, 2014 | Author: Katelyn Turner

It has been a busy month for us at the COPD Foundation. As you probably know, November is National COPD/Alpha-1 Awareness Month! How have you been raising awareness of COPD to your friends, family, and community?

We still have more than a week of COPD Awareness Month left! Don’t forget to wear ORANGE, the official color of COPD, and take part in COPD Foundation activities: COPD360ourcommunityonline_AAcard

Use #Tell10 to encourage your friends and family to tell at least 10 people every day about this devastating disease.
#Tell10 people about COPD every day for COPD Awareness Month. Strength in numbers: because we are stronger when we work together.

Running with Wings

June 24th, 2014 | Author: Fabiana Talbot

DSC00280

Bryne family “Running with Wings” staff.

Mary Jo Byrne was a loving mother, wife, and grandmother. Her family described her as “strict but passionate,” and all four of her daughters very much knew they were loved. Most of all, she taught her family to work hard, set a positive example, and take care of their own. Mary Jo lived with COPD for 20 years. The disease slowed her down and would try very hard to keep up with her family as best she could. She was a social person and loved shopping, but outings became increasingly difficult over time. The family said COPD was “cruel and debilitating.”

When the Byrne family lost Mary Jo to the disease, they decided to take action to raise awareness and funds. Now, they plan an annual race called the MK4MJ, which raises money for individuals who cannot afford rehabilitation and medication. We reached out to the Byrne family to learn more about their efforts:

Q: Tell us about your event.

A: A portion of the proceeds from the race goes to a scholarship fund that assists patients who can’t afford medication or rehab services. The scholarship fund pays for those services. The scholarship fund is in mom’s name.

Q: Organizing a race is a lot of work. How do you ensure success?

A: Our family and friends promote, promote, and promote the race. A lot of marketing and networking goes into the planning of the race. We are blessed with a lot of family and friends who are big supporters of the race. We have no payroll, and we shop and get the lowest price on everything we buy. Our biggest expense is the timing company and t-shirts. We also pray a lot!

Q: How do you get everything done?

A:

1. The first thing we did was to organize our staff and apply for the 501c3.

2. We chose a date, location, a timing company, registration company and set a budget. (Many requirements must be met at this stage.)

3. Set up the website, Facebook and Twitter page.

4. Created advertisement literature, sponsorship tiers, promoted as much as possible (Press Release, Local Event Websites, Email Blasts, Facebook Campaigns, Twitter, Newsletters, Health Fairs, Church Bulletins and etc.).

5. Had fundraisers (pizza night, bingo and etc.) to raise money to promote the race.

6. Organized volunteers for packet pick-up and event day, ordered t-shirts, and reviewed race day event.

7. Race Day, set-up, day of registration, 5k race, kids fun run and COPD Honoree Walk, clean up, and Prayed a lot!!! We could not do this by ourselves. It takes many volunteers, especially day of race.

Q: Is it hard to get involved with fundraising?

A: It is easy to get involved. The first year it was not hard to ask for money and people were quite generous, but the second year and years later, it becomes harder, especially during hard times. We are always trying to find other sources of income to support the race.

Q: Who are your supporters?

A: Local people that mother knew personally in the community. Business associates, Doctors, church members, family and friends.

 
We applaud the Byrne family for their great work with the MK4MJ, Running with Wings 5k race in honor of their mother. If you live in Shawnee, KS, tell your friends and family to register in support!

Want to take action to help others living with COPD? Visit the COPD Foundation’s Firstgiving page or join our Action Network today.

National Women’s Health Week–Celebrate the Women in Your Life

May 12th, 2014 | Author: Katelyn Turner

In honor of National Women’s Health Week, we want to celebrate all of the women in our lives, and encourage them to assess their health.

The U.S. Department of Health and Human Services says, “We know that women are often the ones who make sure everyone – everyone else, that is – in our families are cared for. But too often, we put our own health last. women-and-smoking

But the reality is unless you take care of yourself, you cannot really take care of your family. That means eating right, exercising, quitting smoking, and getting the care necessary to stay healthy.”

COPD is the third leading cause of death in the U.S. More than 24 million Americans are living with the disease, and over half of these people don’t even know they have it. That’s because as people grow older, they mistake symptoms of COPD for regular signs of aging.

What are the symptoms? Increased breathlessness, frequent coughing (with and without sputum), wheezing, and tightness in your chest.

For women, COPD has begun to be an increasing problem.

  • 6.7 percent of adult women have COPD, compared to 5.2 percent of men
  • COPD kills more women every year than breast cancer and diabetes combined
  • Women who smoke are 13 times as likely to die from COPD
  • In 2011, there were over 492,000 hospitalizations for women with COPD

These are all reasons why it is important that you talk to your doctor as soon as you notice any of these symptoms. If you think you may be at risk, you can take our 5-question Risk Screener.

AARC’s Capitol Hill Advocacy Day–A Firsthand Account

April 14th, 2014 | Author: Aimee Bulthuis

Earlier this month, the American Association for Respiratory Care (AARC) hosted its annual Capitol Hill Advocacy Day. Over 100 respiratory therapists and patient advocates hit the Hill asking their legislators to support HR 2619, The Medicare Respiratory Therapist Access Act.  These tenacious advocates arranged over 325 congressional meetings to discuss the importance of patient access to RTs and the necessity of education for disease management.

Tabatha Dragonberry, a respiratory therapist from Virginia, attended the event and provides her first-hand account below:

Tabatha Dragonberry, RT

Tabatha Dragonberry, RT

“This is the first year that I have gone and the state of Virginia had patients join us. This bill is about the patients and getting them access to respiratory therapists in doctors’ offices and clinics. These amazing patients spoke on why they feel it is important to have access to RTs. They discussed how RTs can assist them in learning more about self-management and taking control of their disease. It was great to have them join us because in the end this bill is all about them and getting them access to RTs.

I learned that one of the patients had used his inhaler improperly for five years because in his care he was never taught the correct use. It is amazing that this happens. If you go to an orthopedic surgeon, it is a given you will see a physical therapist, but for patients with pulmonary disease they do not have access to RTs on the outpatient side. I am sure that if this patient had seen a respiratory therapist at his doctor’s office, he would have learned the proper way to use his inhaler much sooner.

Another difference this year was that I felt was that there were more positive responses from the congressional offices.  They know that healthcare is a hot topic and placing a patch here and a patch there is not going to fix the system.”

We thank Tabatha and all of the patients and RTs who spoke out on HR 2619.  To lend your voice to increase patient access to respiratory therapist visit the AARC’s Capitol Connection page.

E-Cig Poisonings are on the Rise

April 7th, 2014 | Author: Fabiana Talbot

There is a lot of debate surrounding  the use of electronic cigarettes. In 2007, the electronic cigarette or “e-cig” was introduced and has since been celebrated by smokers as a safer alternative to conventional cigarettes. Unlike traditional tobacco, e-cigs vaporize liquid nicotine, which eliminates the inhalation of tar and other carcinogens.

p0403-e-cigarette-poison

(taken from cdc.gov)

Sound like a healthier option? Many say ‘yes,’ but health experts disagree. Officials believe e-cigarettes not only pose serious risks to smokers, but others in their homes as well – particularly children. This week, the Centers for Disease Control (CDC)  reported a dramatic increase in e-cig poisonings. According to the report, calls to poison control centers have sky-rocketed from one call in September 2010, to over 200 calls in February 2014.  Approximately half of the calls involved children under 5, and about 40 percent were in adults over 20 years of age.

calls for e-cigarettes have been steadily increasing – from one call in September 2010 to over 200 in February 2014. The study found that calls to poison control centers about e-cigarette exposures were more likely to result in “an adverse health effect” compared to cigarette exposure calls – highlighting the toxic potency of these e-liquids. – See more at: http://www.copdfoundation.org/About-Us/Press-Room/Press-Releases/ID/245/E-Cigarette-Poisoning-Cases-on-the-Rise.aspx#sthash.UnSzufbR.dpuf

Experts hold that these statistics indicate an emerging public health concern caused by a product that is not regulated by the FDA.

“The e-cigarette industry specifically targets children and teens with appealing flavors like cotton candy and gummy bear, and neither these products nor their liquid nicotine refills are currently regulated by the federal government,” American Academy of Pediatrics president James M. Perrin, MD.

Do you think electronic cigarettes should be regulated? Are they generally helpful or harmful? Share with us below.