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Today on The Pulse View All

Advocate Testifies about the Personal Toll of Chronic Diseases

You're the Cure advocate Stephanie Dempsey of Blairsville, Georgia, testified Tuesday in Washington about the impact of chronic disease.

The hearing was to begin a conversation on chronic care, according to Senate Finance Committee Chairman Sen. Ron Wyden, D- Oregon.

Dempsey, age 44, said she has suffered from multiple chronic conditions for most of her life.  She has coronary artery disease, lupus, a seizure disorder and arthritis. She told the committee that her chronic conditions have led to a loss of independence, financial security and family.

“I have always considered myself a middle class American. I had a well-paying job. I owned my own home and was happily married,” Dempsey said.  “Unfortunately, this is not the case today.”

Dempsey was diagnosed with hereditary coronary artery disease at age 21, which has affected all the women in her family. Her only sister died from it at 28.  At age 48, her mother had quadruple bypass surgery.  Dempsey herself had quadruple bypass surgery at 30 and since then has had another bypass surgery and received 27 stents.

She takes 19 medications a day, in addition to doctor-recommended supplements.

Due to her debilitating conditions, she lost her job and her home.  Fighting tears, Dempsey said that the strain caused by her chronic health conditions also ruined her marriage and that she had no choice but to move in with her parents, who take care of her. Her specialists are more than two hours away and due to her seizure disorder, she is unable to drive and her parents must take her to appointments.

The lack of coordination between her specialists caused one to prescribe a medication for lupus that can cause seizures.  He did not remember that she had a seizure disorder.  It took several days and “much persistence” to adjust her treatment.

Dempsey said she’s her own healthcare coordinator.  “Although I consider myself an educated person, navigating this maze is very difficult and very exhausting. But it is my life at stake, so I have no choice except to remain engaged,” she said.

It took two years, but she is now covered by Medicare. Yet, she said she still struggles to pay her medical bills.

Despite her struggles, Dempsey said she felt fortunate to be at the hearing to present her testimony.

“I am confident that you will not forget me and countless other people when you develop policies that will help all of us,” Dempsey said. “Our goals are all the same – to live long, healthy and productive lives.”

Sen. Wyden said at the end of the hearing that it was overwhelming to hear Dempsey’s story.

“My own judgment is that chronic disease has really gotten short shrift in the big debates. I don’t think it happened deliberately,” said Wyden. “What you heard today from Senators again on both sides of the aisle is that those days are over — when chronic diseases get short shrift.”

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Watch Out for Sneaky Salt!

Did you know that most Americans eat more than twice the American Heart Association’s recommended amount of sodium? Chances are, that includes you—even if you rarely pick up the salt shaker. The worst part is, most of us don’t even realize how much salt we’re taking in. But sure enough, Salt is sneaking up on us—mostly when we go out to restaurants or eat packaged foods.

Check out this new 1-minute video to see for yourself:

(Please visit the site to view this video)

It’s true; many of us love salt. In fact, sodium is an essential nutrient! But the excess amounts we’re eating put us at risk for elevated blood pressure which means an increased risk of heart disease and stroke. As much as we might have an affinity for salt, it’s just not worth the cost to our hearts. There are plenty of other ways to enjoy tasty food with less salt. Check out our new website to get the 411 on sodium, including our blog, quiz, infographics, links to lower-sodium recipes and more. 

That’s why the American Heart Association is kicking off a new campaign, “I love you salt, but you’re breaking my heart.”  Click the image below to pledge to reduce your sodium intake today!


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Advocate Stories View All

Ariel Walker Ohio

At 19, my life was totally normal for a college student.  Eat, sleep, class, repeat.  And then one day, my heart quit beating.  I was giving a final presentation in front of a class full of people when everything went dark.  When I woke up, I was on the floor with a paramedic looking at me.

It took almost 4 years to diagnose what had caused me to pass out.  I was lucky.  I had a mother who had worked in a hospital for 25 years, and a supportive partner who drove me four hours each direction every couple of weeks for tests.  For such a dramatic event, it was extremely difficult to convince doctors that anything was wrong with me.  I passed every test.  Most appointments ended with the explanation that I was probably passing out because I was thin and therefore probably not eating enough. 

However, with my mom’s stubbornness and understanding of the heath care system, I was able to get an appointment with a cardiologist who was willing to send me for a tilt-table test.  I laid strapped flat to a table for an hour and then they flipped me vertically to see what would happen.   As everyone waited to see if I would pass out, the surgeon suggested that if I switched my snacks to salted peanuts and Gatorade, I would probably be fine.  I don’t remember much after that because I did pass out, and my heart stopped beating. 

I had cardio-inhibitory vasovagal syncope and I would need a pacemaker to keep me from passing out in the future.  A million things raced through my mind, the first of which was relief… I finally had a diagnosis.  The second was, would I ever look good in a bikini with a pacemaker implanted in my chest.  A month later, I was in surgery: the only 24 year-old on the cardiology schedule. 

My surgery was not easy.  It was supposed to be less than 24 hours in the hospital and I ended up there for three days.  My body was going into shock every time the pacemaker tried to pace my heart.  I was sent for x-rays in a wheelchair and brought back in a gurney because I kept losing consciousness.  It was terrifying.  Not for me so much, I was just exhausted. But for my family who had to watch helplessly, it was a nightmare. 

What I didn’t realize at the time, and what is impossible to explain to someone who has never been in such a situation, is that I not only became aware of a problem that day, I also lost the ability to trust that my heart would ever beat the way it was supposed to.  We don’t think about our lungs allowing us to breathe or our heart pumping our blood. It just happens.  I can’t explain the sense of loss, or the fear that develops of your own body, but I can encourage people not to take it for granted. 

I am now on my second pacemaker and, although that surgery wasn’t easy either, I live a healthy and active life with my amazing husband and two dogs.  To give back, I also joined the Board of Directors for my local American Heart Association so that I can encourage others to live well and take care of their hearts.  A coronary event can happen to anyone, at any stage of life.  It is important to pay attention to what your body is telling you and seek a doctor’s care whenever your heath circumstances change.  Treat your heart with care and never take it for granted.

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