Posts in the Faces of COPD 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.

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.

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.

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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.

Our Veterans: an At-Risk Population for COPD

November 11th, 2014 | Author: Katelyn Turner

Happy Veterans Day from the COPD Foundation!

We are deeply grateful to those who have sacrified for our country to protect and uphold American ideals and freedom. We honor all military veterans today and extend a heartfelt “Thank You” for their service.

Did you know veterans face a higher risk of developing COPD?

You might be surprised to learn that:

  • Veterans are 3x more likely to develop COPD than the civilian populationimages-of-veterans-day
  • COPD is the fifth most prevalent disease in the veteran population
  • COPD affects approximately 15% of Department of Veterans Affairs healthcare users

In the article, “Fighting for Air: Veterans Face Higher Risk for Developing Lung Diseases,” the author, COPD Foundation president John W. Walsh, states that COPD is a growing health concern for military veterans. He says that some soldiers have faced, “… a barrage of respiratory exposure,” such as:

  • Smoke from burn pits
  • Aerosolized metals and chemicals
  • Outdoor aeroallergens like date pollen
  • Indoor aeroallergens like mold aspergillus

With these environmental hazards in mind, we urge veterans who are symptomatic of COPD to get an annual “spirometry” or breathing test.

We want to help those who have given up so much for us, and hope all veterans will take action during November’s COPD Awareness Month by getting screened for COPD.

Pam DeNardo: A Decade of Helping Individuals with COPD

August 11th, 2014 | Author: Fabiana Talbot

This excerpt was drawn from the Spring 2014 issue of the COPD Digest.

When Pam DeNardo was diagnosed with COPD in 1999, there were scant resources available. She had to do her own research—teaching herself about medications, inhalers, and pulmonary rehabilitation, a task she said was daunting and scary without guidance or any references.

“I was terrified. Mpamdenardoy doctor said that at best I had three to five years to live,” DeNardo says. “’Incurable’— that’s all I could think of. Except, I couldn’t die. I was a single mother of two, I had a mother in her 90s who needed me, and a small insurance business that had just turned the corner and was making money. I simply could not be sick, and I could not die.”

Today, DeNardo is one of 35 associates who work on the COPD Foundation’s C.O.P.D. Information Line. When it was created in 2007, they averaged 300 inbound calls every month. Today, the associates field anywhere between 5,000-6,000 contacts each month. DeNardo was one of the driving forces behind the creation of the Information Line.

“Today, patients are still scared. You can hear that when they call the Info Line. The best thing is when I get a call from a newly diagnosed patient, because I can tell them I’ve had the diagnosis for 15 years, and you can hear the relief in their voices,” she says. “The Information Line, to me, is the culmination of everything I believed in.”

phoneIn 2007, she met with Bill Clark, director of outreach programs at the COPD Foundation, and John and Diane Walsh, and together, they recruited patients, set up the toll-free line for support and information, and the Information Line was born.

“The Foundation will continue to grow, and I believe it [a cure] will happen. And I hope to be there. I’m working hard to be there,” DeNardo says.

Read on about Pam’s journey on the COPD Digest website.

Running with Wings

June 24th, 2014 | Author: Fabiana Talbot

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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.

Make Your Ripple

March 24th, 2014 | Author: Katelyn Turner

Despite being the third leading cause of death in the U.S., COPD is still unknown to many people. Bhavya Malladi and her grandfather, Evani RJ Rao, were among those people when he was diagnosed with COPD in October 2012. Upon his diagnosis, the lack of awareness and knowledge of such a devastating disease shocked Bhavya. She has since made it her mission to educate people around her so that no one else she loved would have to suffer the way her grandfather is.

Evani, 70, spent his life working as a hydro-geologist in India, and was exposed to dust from open field drilling. Although he quit smoking at the age of 53, Bhavya attributes the toxic fumes from his job and 20 years of smoking to her grandfather’s diagnosis. Within a year of being diagnosed, his condition drastically worsened. As she lives in California, and her grandfather lives in India, long phone calls with him have unfortunately become a thing of the past, because simply talking for a long period of time is too exhausting for him.54294429-58e7-4663-a573-6dd5ac829dd3

A fond memory she holds of Evani are long walks with him and her brother to a local candy store in India where they would buy their favorite chocolates and candies. They would walk back home while listening to him tell stories of India. As the years have progressed, this tradition has become impossible for Evani.

Seeing this debilitating disease progress so rapidly, Bhavya began to ask herself, “Why is it still so unfamiliar to people?” Bhavya has decided to honor her grandfather by making a difference.

“Never underestimate the difference you can make. Remember, even a tiny drop can make ripples,” she says.

When her Rangapravesam, an Indian classical solo dance debut, approached, she decided to make a ripple. (Bhavya has been learning an Indian Classical dance form called Kuchipudi since she’s been five. Rangapravesam is an event when the teacher introduces the student to a bigger audience. This event is a student’s solo repertoire two hours long, with a live orchestra.)

In lieu of flowers and gifts for her performance, she asked her guests to donate to the COPD Foundation through her online fundraising page on FirstGiving. She included a small pamphlet in her invitations, and also set up an information booth with COPD brochures for the 500+ attendees. This was her opportunity to spread awareness in her own way.

Bhavya’s ultimate goal is “to spread the word about this disease, so people know about it and take care of it in its early stages,” something they could not do for her grandfather.

To date, she has raised $3,428 for the COPD Foundation’s efforts to spread awareness, educate members of the community, and to one day find a cure.

You too can do your part and make your ripple. Contact the COPD Foundation to find out how you can set up your own Firstgiving fundraising page and make a difference just like Bhavya continues to do.

Please call 1-866-316-2673 or visit: www.COPDFoundation.org for more information.

What is COPD? Share Your COPD Knowledge

March 17th, 2014 | Author: Katelyn Turner

You know the stats:

  • COPD is the third leading cause of death in the U.S.
  • 24 million Americans have COPD
  • 12 million Americans remain undiagnosed
  • COPD takes 1 life every 4 minutes

We’ve taken the stats you know about COPD, and put them into an easy-to-understand video, intended to encourage individuals to get their lung health tested through our 5-question Risk Screener.

We ask that you share this video with your colleagues, friends, caregivers, spouses, family members, neighbors–anyone you think it would help. Education is key to the management and treatment of COPD.

To learn more, please visit the COPD Foundation website, or call the C.O.P.D. Information Line at (866) 316-COPD (2673).

Leonard Nimoy of Star Trek Diagnosed with COPD

February 10th, 2014 | Author: Fabiana Talbot

Leonard Nimoy, famously known for his role on Star Trek as Spock, announced last week that he has COPD.

“I quit smoking 30 yrs ago. Not soon enough. I have COPD. Grandpa says, quit now!! LLAP,” Mr. Nimoy tweeted.  His announcement sparked a  conversation about COPD online with many asking, “but how do you have lung disease if you quit so long ago?”

It is so important to share with our loved ones that even if a smoker has quit, s/he can still develop COPD. Lung damage is irreversible and progressive (gets worse over time) and often goes undetected and undiagnosed until 50% of lung function has been lost.

12 million Americans have COPD and don’t know it.

That said, progression slows dramatically the earlier someone quits smoking. Tell your friends and family to quit today!

May Mr. Nimoy LLAP (live long and prosper) and continue to educate others to raise awareness about COPD.

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