Deena Edwards LONG Mar 08Deena Edwards misses it every day, still craves how it made her feel.

The addiction took root during a trip to Cape Cod when she was 14. In high school, the grip tightened, then kept ratcheting up.

She was 29 when doctors said it might kill her. So she quit. Cold turkey.

Over the next eight years, Deena launched a successful career at the Discovery Channel, got married and had two sons. Eventually, her vow of abstinence weakened. Just a taste of her old joy couldn’t hurt … right?

Wrong.

Sitting on the floor in her home, her heart beating about four times every second, she waited for the ambulance. With her boys – ages 4 and 1½ – nestled in her lap, Deena thought, “Dear God, don’t let me die in front of my children.”

Such a horrible scene. All because she gave in and went for a brisk run.

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Running itself wasn’t to blame. Vigorous exercise simply triggered an underlying condition.

And at that point, doctors had yet to full identify the extent of the problem.

Deena had a degenerative heart condition known as arrhythmogenic right ventricular dysplasia, or ARVD. When you hear of young athletes who die suddenly, undetected ARVD often is to blame.

“Most of the time it is diagnosed on an autopsy,” she said.

Deena had enough scares over the years that she knew something serious was wrong. Yet it would take the full diagnosis to truly change her life.

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As a teen, Deena worked as a traveling babysitter for a family that liked going to Cape Cod. One summer, she entered a race there. She couldn’t finish.

She resolved to cross the finish line the next year. She did, and was hooked. She ran for her high school team, then her college team. Marathons and triathlons followed.

Running defined her. All her friends were runners. While she ran with her dad about once a week, her favorite time was alone each morning, getting up at 5:30 a.m. to hit the trails.

“I would describe it with the word ‘religious’ or ‘spiritual,’” she said. “That was my time with myself, to connect and think.”

In 1998, during a routine run, Deena suddenly became tired. Her heart rate soared with a feeling “like gears grinding in my chest. For about 1½ hours, she wondered if she was having a panic attack until stopped. When doctors ran basic tests, she checked out just fine. As a non-smoker and non-drinker in great shape, it was easy to dismiss anything serious.

A month later, one mile into a 3-mile run with her dad, she again felt that awful combination of fatigue and a racing heartbeat. She went to a hospital and a nurse used a blood pressure cuff to check her heart rate. It said 80.

“I think you need to check with a stethoscope,” Deena said. The rate was 240.

Out came medicines and the crash cart. Paddles were charging to give her a massive shock when the medicine kicked in, lowering her heart rate.

She underwent a procedure called a cardiac ablation to fix her heart’s rhythm and began taking medicine.

She also stopped running.

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In September 2006, Deena was still carrying some extra pounds from her second pregnancy. She knew jogging was a great way to slim down.

She also was lured by “candy out my back door” in the form of 20 miles of trails around a park and lake just behind her house.

So she decided to go out for some “really light trail running.” Within weeks, she upped her pace. Then – wham! – that awful combination returned.

She’d just passed some neighbors. Realizing the urgency, she thought, “You can either walk away or ask for help.”

She went back and told the neighbors: “I need you to get an ambulance right now. If I pass out, you’re going to need to do CPR because I’m in real trouble.”

This time, doctors discovered the real culprit. ARVD, prompting her to receive an implantable cardioverter defibrillator (ICD), a device that continuously monitors her heart’s electrical system and provides automatic correction in the event of an arrhythmia.

Deena has learned that exercise essentially speeds ARVD’s progress. Cruel as it seems, had she not been such a hardcore athlete, her condition may not have manifested for many more years.

“I actually was given a gift to have it discovered,” she said. “Of course, it took me about nine months to realize it.”

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Deena initially considered her diagnosis a death sentence. She thought she’d never enjoy another day.Deena puppy

Then a friend called and told her to snap out of it. He reminded her she was lucky to know this evil lurked and to be treated at Johns Hopkins Hospital and George Washington University Hospital, two of the nation’s best facilities. She also had her boys, her career and more.

That message sunk in. Soon, another thought washed over her: Just like she’d turned around and asked for help on that fateful day, Deena wanted to turn around and start giving help to others in need.

Now 46 and living in Maryland, Deena is in stable health and good spirits. She’s divorced but soon to be remarried. Her boys are growing up nicely, and get their hearts checked annually.

Deena family LondonDeena is looking forward to sharing her story on behalf of the American Heart Association. She is a certified CPR instructor, and teaches at offices throughout her work while traveling for her job as Senior Vice President of Global Branded Solutions for Discovery Networks International.

She helps in her community, too. Her youngest son plays football, so she bought an AED for the league.

“It’s not just for my son – I bought it for all these sons who are playing, and for all the parents who are at all the practices and games,” she said.

Deena also is involved at Johns Hopkins, taking part in research studies, writing letters for grants and always eager to help fellow ARVD patients.

“If you can get one person to the next day, the next moment, that’s a wonderful thing,” she said. “I’m not perfect. But I’m certainly going through this at the best pace I can.”

Spoken like a true runner.

Deena Key West

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Photos courtesy of Deena Edwards

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Do you know a “Story from the Heart” we should tell?

Send an email to stories@heart.org that’s as brief or as detailed as you’d like.

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