Archive for February, 2011

Ahead of the Game

February 25th, 2011 | Author: Katelyn Turner

Robert Stoker, like most COPDers, was first told he had asthma before his COPD diagnosis.

“My internist treated it like asthma to see if it developed into something worse, and yes, it did get worse. I started doing PFTs and he realized it was more [than asthma]. So he sent me to an allergist, who had just read an article on Alpha-1 and COPD,” Stoker says. “He called me in and said, ‘Look. I think [what you have] is something called Alpha-1, that’s why you’re progressing the way you are.’ I asked what the upside was, and he said, ‘Well, at least we know what we’re dealing with.’”

Stoker says he went home to read up about Alpha-1 and COPD, and in the next week read everything he could get his hands on about them.

“At the time I had worked for a pharmaceutical company and I talked to people in charge of the medical department and I read that I had something perhaps a bit more serious than I thought,” he says.

Stoker says he had a “double whammy” with his Alpha-1 in that he grew up in Southern California during the worst of the smog years, and smoked for about 15 years, starting when he was in college. He quit smoking five years before he was diagnosed in 1995.

“At that point [of diagnosis] unfortunately my wife is a pharmacist and has access to the Internet and medical information, and she started to get nervous. I tried to reassure her, telling her it was a slow progressing disease, and we had plenty of time,” Stoker says. “But I knew this was not a great thing to have. I talked to my allergist who readily admitted he didn’t know much about it, but set up a pulmonologist appointment for me.”

Robert, his daughter and his wife

Unfortunately, Stoker’s first pulmonologist was not a proponent of Alpha-1 as a disease and didn’t believe in augmentation therapy, so Stoker switched to Lahey Clinic.

“I quite frankly couldn’t be happier with them [Lahey]. They were more empowering in terms of dealing with patients and getting patients to be a little more aggressive in their own treatment,” Stoker says. “The first day I went in, and they told me about exercising, eating right, and doing all the things to avoid exacerbations, treating infections early, all to have a higher quality of life.

“They encouraged me to know what kind of lungs I have, and to look at other alternatives. They gave me hope, and pretty much set me on the path of [the mindset of] ‘I have COPD, I have Alpha-1, and it’s not how I’m going to categorize myself going forward,’” Stoker says.

Stoker says he’s been able to instill an attitude along the lines of, “just go with it.”

“Some people tell me that I’m ‘whistling past the graveyard’ but I keep a really good attitude, and think, ‘Hey, I can beat this, and deal with this, and certainly be ahead of the game.’”

Stoker, 55, lives in Derry, New Hampshire with wife Margaret, and says she has been his biggest supporter.

“She has certainly done more than anybody should ever be expected to do. I can’t say enough good things about her. She’s been there with me right from the start,” he says.

Up until December of 2010 Stoker was a pharmaceutical sales representative for 35 years, and was in and out of doctor’s offices and hospitals all day long.

“What made me finally stop working was that I went active on the transplant list [for a double lung transplant]. I started my evaluation for a transplant five, six years ago, when I was healthier,” he says.

Stoker, who is on oxygen 24/7, says he started using it about 10 years ago just at night. He attributes being able to work as long as he did because he was using oxygen.

In general, Stoker says having an exacerbation or getting pneumonia is not acceptable and tries to stay as healthy as he can through exercise and pulmonary rehab. Those combined with support of his wife and daughter Madelaine, Stoker has many  motivating factors in his life.

Hotels, Motels, Going Smoke-Free

February 23rd, 2011 | Author: Katelyn Turner

According to this article in last week’s USA Today,  it’s saying that hotels, motels and other lodgings are banning smoking on their premises.

“Some are doing it voluntarily, as public awareness about the health dangers of secondhand smoke grows. Others are being forced by a growing number of state and local laws,” author Gary Stoller writes.

From the article:

“More than 12,900 lodgings serving the public in the USA are now smoke-free throughout, a USA TODAY analysis of data from AAA, the American Automobile Association, finds. That’s nearly 4,600 more than in November 2008, when USA TODAY first analyzed AAA data.”

Photo by Chris@APL

Americans for Nonsmokers’ Rights, or ANR,  is the “leading national lobbying organization (501 (c) 4), dedicated to nonsmokers’ rights, taking on the tobacco industry at all levels of government, protecting nonsmokers from exposure to secondhand smoke, and preventing tobacco addiction among youth. ANR pursues an action-oriented program of policy and legislation.”

According to their website:

“In 2006, the year of the landmark Surgeon General’s Report on secondhand smoke, Westin (a Starwood brand) announced the first national 100% smokefree hotel policy for all its properties in the U.S., Canada, and the Caribbean. This was a huge turning point for the industry. At the time, a Westin hotel’s restaurants and bars may have been one of the few smokefree eating or drinking options in an entire city (Charlotte, North Carolina comes to mind) before smokefree laws were in place.”

ANR reports that Westin’s policy created a domino effect and was expanded upon by Marriott, “which adopted a smokefree policy for all of its U.S. properties, as well as across all its entire portfolio of brands (including Marriott, J.W. Marriott, Renaissance Hotel, Ritz-Carlson, Fairfield Inn, Courtyard by Marriott, Residence Inn, and Spring Hill Suites.)”

I think this is great news – that more and more hotels are going smoke-free. I find it surprising when hospitals aren’t smoke-free. Dartmouth Hitchcock Hospital in Lebanon, NH has implemented a Smoke-Free/Tobacco-free campus.

What are your thoughts about these establishments going smoke-free?

A Miracle Every Day

February 18th, 2011 | Author: Katelyn Turner

For most 5-year-olds, celebrating a birthday is just one in a long line of happy, celebratory days. For Justin Truett, celebrating his fifth birthday in November 2010 was really nothing short of a miracle.

Justin has congenital CMV, which comes with the following challenges: cerebral palsy, profound brain damage and SUID (Sudden Unexplained Seizure Death), to name a few.

His mother Desiree, an Alpha, and husband Timothy adopted Justin in 2007. When they adopted him, Justin weighed only 14 pounds.

“Justin was 1, almost 2, and he couldn’t hold his head up. We were told he was blind and deaf and didn’t understand anything that was going on,” Desiree says. “So we focused on taking care of his basic needs. Long story short, he became a permanent placement [in our family].”

Desiree and Timothy married in 2006, each with a child from a previous marriage. They both knew they wanted a lot of kids, and while Desiree was expecting her first child, they began looking into foster care and adoption and found out about children, like Justin, who were considered “un-adoptable” because of their increased needs, and because they weren’t expected to live long lives.

“We focused on a girl named Jamie that was on this list. She was blind, and had 15 failed placements by the age of five. We really wanted to adopt her, and it took two years from the time we found her to the time she actually moved in,” Desiree says. “While working on Jamie, we got a call about two little boys that needed placement for a week or two, one was special needs and one wasn’t.”

One of these boys was Justin.

Although previously told Justin was deaf and blind, Desiree says after six weeks of regular food and a lot of stimulation, Justin started to make eye contact.

“[When we got him] he was in such a chronic state of starvation, that everything had shut down. But because he was so disabled, doctors told us he would only live to be three. At that time he was almost two. His third birthday was a huge celebration for us, and right after that, his adoption went through,” Desiree says. “He is doing great. All of his organs are doing perfect and right now his risks are pneumonia and seizures.”

Justin’s seizures are a major concern for the Truett’s. They can range from 1-2 a week up to 100 a day.

Desiree and Timothy with children (in back) Dakota, 9 Jamie, 8, (in front) Kaylee, 7, Justin, 5 and Abigail, 4.

“One day, out of the blue I walked past his room when he was about four-and-a-half, and he was completely unconscious, with one of his legs kicked to the right. It wasn’t anything like a normal seizure, and it wasn’t stopping, either,” Desiree says.

They took Justin to the ICU, and he was comatose for three days.

“He did wake up, and I was afraid he wouldn’t be Justin anymore. He has an amazing personality and the funniest sense of humor, so the first thing I did was tell him inside jokes we have, and he smiled, and I knew he was there,” Desiree says. “But he was paralyzed on his entire right side. That took over six weeks to come back through a lot of physical therapy.”

What concerned Desiree and Timothy about this episode was they were told even machines wouldn’t be able to detect the seizure Justin had. That’s when they were told about seizure alert dogs.

An assistance dog would make sure Justin got the help he needed at night and if Desiree and Timothy weren’t in sight. The Truetts are partnering with 4 Paws for Ability to acquire a dog that would allow Justin the security he needs to enjoy his life to the fullest.

The Truetts have raised the money needed to acquire this dog for Justin, and are now helping another family raise money for their son, Alex.

Desiree, who in addition to Jamie and Justin has three children with her husband, is a ZZ Alpha and has to take time to take care of herself and her condition. She was diagnosed in 2008, around the time she and husband Timothy were adopting a sixth child. They decided to stop the adoption and Desiree became very involved in the Alpha-1 community in her town of Maricopa, Arizona.

Desiree says it’s a true team effort with Timothy, who is a Police Sergeant.

“We get to witness a miracle every day. Every single day, Jamie or Justin do something medically impossible. And it’s so fulfilling and I feel so honored that I’ve been chosen for this challenge,” Desiree says. “It helps with my Alpha status because it gives me no time to dwell on it. Nobody in the community looks at me as somebody who’s struggling with an illness, more, they come to talk to me about how to get into adoption.”

My Journey to the Center of the Lungs

February 16th, 2011 | Author: Katelyn Turner

This blog was written by Karen Thurston Chavez, who rode the COPD Shuttle: Journey to the Center of the Lung February 9th in Tallahasee, FL.

I’m such a nerd. Who else gets all hyped up about climbing into a virtual ride called the “COPD Shuttle”? Well, truth is, we all should!

In fewer than 10 minutes, I learned a lot about chronic obstructive pulmonary disease — the term used to describe progressive lung diseases that include emphysema, chronic bronchitis, refractory (irreversible) asthma, and severe bronchiectasis. A term I’m all too familiar with.

When I heard the Shuttle was coming to Tallahassee, Florida, I expected to take a walk-through tour inside a converted charter bus. I was not expecting to hop into a metal box that would gently toss me around like a virtual kiddy coaster. Mind you, I get motion sick on playground swings! I was a little nervous when the hatch-like doors dropped down and closed with a hydraulic hiss.

But I took a deep breath – no pun intended – and was determined to learn more about the disease that claimed my father’s life 10 years ago (March 20), and the disease my mother battles every day. I need to learn more about the condition that my younger son may eventually face because of his asthma, persistent respiratory infections, and his congenital heart defect (scimitar syndrome).

Karen's husband and older son (who is now 15), and mother and father in 1998, before they had ever heard the phrase COPD.

As promised, the COPD Shuttle took me on a journey to the center of the lungs – right smack into the middle of the alveoli, those tiny, critically important sacs deep inside in the lungs that perform gas exchange. Alveoli help our bodies get rid of carbon dioxide and pick up oxygen.

As I drifted through bronchial tubes, the narrator described healthy lungs while the Shuttle gently rocked in rhythm with normal breathing. Then the narrator talked about what smoking and pollutants can do to the delicate interiors of our lungs. Slowly, the airways on the screen began narrowing, darkening and filling with mucous. The Shuttle bumps a little as the normal breathing turns raspy and fast. Suddenly, there’s a loud COUGH! The Shuttle jolts and thumps as I’m “expelled” from the lung through an acute, congested, diseased-induced cough.

As I re-enter the outside world, I learn more about the COPD Foundation, COPD and how symptoms can be treated.

Until the Shuttle, I did not realize that COPD is the third leading cause of death in the United States, with heart disease first and cancer second. (That’s very interesting for me because in addition to COPD, my father also had heart disease and cancer.)

If you think you might be at risk for developing COPD, learn more about it and get a simple breathing test (spirometry) done to measure your lung function. Early diagnosis and treatment can slow the progression of the disease and improve quality of life.

I wish my parents were diagnosed earlier so they could have begun treatment and disease management sooner in their lives. Since my Shuttle experience, I’ve been talking with friends and family about their risk for the disease and the importance of early diagnosis. It reaffirmed my belief that I not only need to continue watching and asking about my son’s pulmonary health, but I need to teach him that taking care of his lungs is equally important as taking care of his mended heart.

I was counting on that COPD Shuttle to give me a good look at the inside of human lungs, and help me understand better a disease that has affected my life. And it did. Thank you, COPD Foundation!

COPD and Stubbornness

February 11th, 2011 | Author: Katelyn Turner

This blog post was written by Joanna Murray, who lost her mother to COPD last year.

When you talk about my mom and COPD, the first thing that comes to mind for me is her stubbornness.  Sometimes we forget how much control we have in our own lives.  All those little things tend to be a huge component of who we are.  As the years went by and my mom had been diagnosed with COPD – and although our family knew – my Mom only told us what she wanted us to know. I think as a child we don’t want to think about a parent being sick and we only ask what we really want to know.  My mom took such good care of me, I thought, “Why would I second-guess that she would not take good care of herself?”

Growing up, my Mom was always in control and always made the decisions.  Like most kids, I never questioned her.  She was strong-willed, controlling, and the older she got the more control she sought- sometimes to the point of annoyance.  My brother and sisters and I learned to tolerate it.  My mom was her own person and she did not have a problem letting everyone know that.

The last few years of her life were the years that stood out for me the most.  I had grown up and I came to accept her and all her quirks.  I realized for the first time she was her own person and she had always lived her life by her own specific desires.  Sometimes I sat shaking my head in disbelief. She would look right at me and say, “Because I can and do not question me.”

Joanna and her mother

The last years of her life – I remember as if it was yesterday – it became very difficult.  She would clean my house or take care of my kids to be helpful.  I started noticing her slowing down and the difficulties in her breathing started to happen more frequently.   Every time I started to question her, she would brush my concerns aside.  As time passed, it became more of a challenge for her to climb up my stairs.  Whenever we went shopping, she would need to push the shopping cart and stop periodically to catch her breath.  She needed to be leaning on something so she could she gasp for her breath.

I always saw my mom as this tough, old woman who at times could be such a bear to be around.  When she was with my kids I saw her for who she truly was.  She had such a way with my children she touched their hearts.  In those last years, I had gained such a respect for her.

When she moved in with me that last month of her life I didn’t know what to expect, and didn’t want to lose what I had recently built with her.  It took so long for both us to have this new relationship.  She saw me in a different light and I saw her differently as well.  That last month was so hard at times.  The first few weeks she fought me on everything.

It’s hard to know what exactly was going through her mind during this time, but I know that we became very close and I cherished the new friendship that we had forged. All I can do is speak for myself, and I can say as a grandmother goes, she was amazing.  My children and I miss that special time they shared with her.

DRIVE4COPD Encouraged Dancing For COPD

February 9th, 2011 | Author: Katelyn Turner

“We didn’t choose COPD…COPD chose ‘Full Tilt Boogie,’” says Donna Lee.

The song and video that Lee is referring to is known internationally for its part in spreading awareness about COPD.

Donna Lee says “Full Tilt Boogie” is a term originating out of Texas, brought to the song-writing table from Texas A&M University.

“The title, ‘Full Tilt Boogie’ invites folks to get up and move. We thought that the video would make a fantastic COPD pulmonary rehabilitation and awareness video for folks of all ages,” Donna Lee says. “Watch the video closely. As the camera scans the floor, you are witnessing over 75 active citizens from all walks of life and all ages participating in pulmonary rehabilitation. Can you tell me which dancers are living with COPD?”

“Full Tilt Boogie” continues to excited and invite many dancers to get up and get motivated, according to Donna Lee.

“Hopefully people will continue to dance, exercise and participate. It just so happens that our lifestyles have left so many with COPD, but COPD doesn’t have to be a death sentence,” she says. “Though limited, once diagnosed and with your doctor’s care and encouragement we can continue to live active lives.”

The group is a social line dance group comprised of seniors from all over the Vegas Valley as well as Mesquite, Nevada and different cities in Utah, who meet once a month. They filmed the video in East Las Vegas, with dancers’ ages ranging from 55 to 85.

“Many people who attended this Full Tilt Boogie session danced for three hours with just two short breaks, most of the seniors having a variety of health issues,” Donna Lee says.

Full Tilt Boogie

“One lady with COPD brought her nebulizer and sat out when she became too winded. Others dealt with double knee replacements, arthroscopic surgeries, back problems, high blood pressure, heart bypass surgery and various types of cancer,” she says. “Senior line dancers are a resilient breed of people. A lot of that resilience can be attributed to the exercise they are exposed to when they attend line dance class.”

Donna Lee says line dancing not only offers physical exercise, but also mental exercise.

“’Full Tilt Boogie’ line dance increases the blood flow to your brain and to the important organs in your body. The steps are simple enough that everyone can do them and it is up tempo so everyone gets a good workout when they do it,” she says.

Donna Lee says the video, which has over 3,000 views on Youtube, is being added to playlists at radio stations worldwide, and won second place at the 2011 Las Vegas Line Dance competition. She also says it was submitted to the 2011 CMA festival (a supporter of the DRIVE4COPD campaign).

The “Full Tilt Boogie” would not be possible without these people:

  • Singer/songwriter L J Coon, L J Coon Music Publishing BMI
  • Award-winning Line Dance Instructor Sheri Hurley
  • Videographer Annie Lynn
  • All of the 75 plus Line Dancers at the East Las Vegas Community Center
  • All of the Line Dance folks worldwide that have started their own “Full Tilt Boogie” Grass Roots effort to raise COPD awareness.
  • Radio stations worldwide for adding “Full Tilt Boogie” to their playlist in an effort to get the word out and invite folks to be tested.
  • All of the folks in the Drive4COPD Campaign, Tune Up for COPD, and The 2011 CMA festival, for their very favorable acceptance of the song/video submission of “Full Tilt Boogie” for COPD awareness.

Push Yourself to do a Little More

February 4th, 2011 | Author: Katelyn Turner

I was able to catch Jack Hollenbach while he was on his daily early morning stroll with his 3-year-old German Shepard, Hula.

“We walk 3.5 miles every morning. It’s something I never dreamed I’d be able to do a little while ago,” Hollenbach says.

Hollenbach says he first noticed something was wrong while on a fishing trip at Apache Lake, outside of Phoenix, AZ. Climbing up an embankment Hollenbach found himself out of breath. Between that time and being officially diagnosed with COPD, Hollenbach received a Bachelor’s Degree from DeVry University and began a new job working for W.W. Smith Construction in December 2005, which required him to get an annual physical.

In November 2006, Hollenbach went to the doctor for his annual physical. That’s when he was diagnosed with COPD.

Jack and Hula

“I kept thinking I was just getting older, and unfortunately, that’s what my mother thought, too. She died from COPD,” Hollenbach says. “She smoked for a couple years but nothing heavy. She had scarlet fever when she was younger and they attributed [her breathing problems] to that, rather than smoking. She quit 20 years before she was diagnosed. And I quit, but I didn’t show signs of COPD until after I quit smoking.”

Hollenbach says he went to work the next day with an oxygen tank in tow, which surprised his co-workers.

He says it was an immediate change and adjustment – going from feeling winded all the time to carrying oxygen all the time.

A year later, he suffered an exacerbation and was hospitalized. During his two-week stay, he lost 40 pounds and says he was so weak he couldn’t walk across a room without having to stop to catch his breath. It was at this time his doctor suggested a lung transplant for him.

Making a trip to the University of California, San Diego, Hollenbach became familiar with the transplant program, where he got evaluated.

“I still remember meeting Dr. [Gordon] Yung for the first time. Dr. Yung told me that the transplant was not a cure for my COPD, rather, we would be swapping one disease for another. If successful, I would be on medications for the rest of my life,” Hollenbach recalls.

On August 2, 2007, Hollenbach got the call from the hospital. Post-surgery, Hollenbach recalls waking up and taking his first breath with new lungs. He had received two operations in a 24-hour period.

Hollenbach says he wants to share his COPD story because he believes there is always hope for COPDers.

“All of a sudden with COPD you can’t do the simplest tasks that you thought you could do. It’s amazing how people take breathing for granted. It’s just something you do all the time,” Hollenbach says. “All of a sudden one morning you wake up and you can’t breathe, but there’s hope because there’s things that can be done.

Encountering a few bumps in the road since transplantation – he’s been hospitalized twice – Hollenbach says, “Life is good!”

“Always push yourself and try to do a little more everyday. Even when I was sick and feeling sorry for myself – it didn’t do me any good,” he says. “Really, it’s a matter of choice. You can lay down and let the disease beat you, or you can try to beat it by fighting back.”

Pursed Lip Breathing

February 2nd, 2011 | Author: Katelyn Turner

A lot of COPDers I’ve interviewed talk about many things they do to make it easier for them to breathe. One method that always comes up is pursed lip breathing

According to the COPDF BFRG, pursed lip breathing, or PLB is a “simple way to control shortness of breath. It helps you slow your pace of breathing. This makes each breath more effective. It involves breathing in slowly through the nose, like you are smelling a rose. Then purse your lips like to whistle or like blowing out a candle. You then breathe out slowly through the small hole between your lips.”

How does pursed lip breathing help?

  • Improves ventilation
  • Releases trapped air in the lungs
  • Keeps the airways open longer and decreases the work of breathing
  • Prolongs exhalation to slow the breathing rate
  • Improves breathing patterns by moving old air out of the lungs and allowing for new air to enter the lungs
  • Relieves shortness of breath
  • Causes general relaxation

Here is a video that goes more in depth about pursed lip breathing and its benefits from Michael Riser.

Photo by

Riser also says to use pursed lip breathing helps managing shortness of breath while doing activities such as exercise. It helps move more carbon dioxide out of lung, allowing more oxygen to enter.

He advises people that when short of breath, try your best not to panic, but to use methods such pursed lip breathing to get your breathing back to a steady pace.

What about you? Do you use pursed lip breathing? Does it work for you? What are some other methods you use to help you breath better?