Heart Valve Disease Personal Stories

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Facing heart valve surgery can be a daunting task. You have every reason to be hopeful and positive about your recovery. You’re in good company: hear from other patients sharing their experience with heart valve surgery.

AHA's Heart Valve Ambassadors

This inaugural group of volunteer ambassadors includes seven heart valve disease survivors and one caregiver from across the country who represent the face of heart valve disease in America and show that it can affect people of different ages, backgrounds and lifestyles. These ambassadors will serve as leaders in the community and will work with us to raise awareness about heart valve disease and share available resources for patients and families. Learn more about them here and be sure to connect with them on our Support Network.

HV Ambassador badge Debra North

Meet Debra North, AHA Heart Valve Ambassador

Debra North is a cardiac disease survivor—she was born with myxomatous mitral valve prolapse, a degenerative form of valve disease. At birth, she survived a heart attack that caused a stroke; she wasn’t expected to survive. For years, her valvular heart disease did not affect her life—she even ran track in high school. Her pediatric cardiologist had even informed Debra that she would not need a valve replacement until her 60s. At age 30, Debra began having symptoms of valve failure which led to a repair. Her valve continued to degenerate, and she had a valve replacement ten years later in 2016. Due to complications from her replacement, Debra expects yet another valve surgery in the future. These experiences led her to become involved with the AHA and join the Heart Valve Ambassador program to help elevate awareness about valvular heart disease.

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Meet Mark Ridder, AHA Heart Valve Ambassador

Mark's journey with heart valve disease began in high school, when a heart murmur was detected in a routine physical exam. Later in life he was diagnosed with aortic valve stenosis, which ultimately turned severe enough to require valve replacement surgery. He's thankful for the care and treatment he received during and after his surgery, completing a 12-week cardiac rehab program and building back up to jogging 4 miles regularly. Mark maintains a passionate interest in researching the use of nutrition, exercise and lifestyle choices to reduce the risk of developing heart disease. Understanding the power of a community that can truly empathize, he decided to mentor others as an AHA Heart Valve Ambassador.

Contact Mark on the Support Network.

Christine Rekash HV Ambassador badge

Meet Christine Rekash, AHA Heart Valve Ambassador

At a routine physical, Christine's physician detected a heart murmur. Upon being referred to a specialist, she was told she had mitral valve prolapse. Upon close monitoring and a watchful eye of her cardiologist through routine testing, she developed a leaking mitral valve. The conditioned had worsened, causing her heart to become enlarged as it worked harder to pump blood between the chambers. She had her mitral valve repaired through traditional open heart surgery and later developed post surgical complications. Christine has made it her mission to "pay it forward" and provide comfort,  encouragement and inspiration to others facing heart surgery. She shares her tips and tricks in how she is "kicking" out heart disease on beat a time in the hopes of making someone else's journey a little easier.

Read My Journey: Operation Backward Blood Part 1  |  Part 2  |  Part 3

Contact Christine on the Support Network.

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Meet Susan Strong, AHA Heart Valve Ambassador

A hiker and healthy eater, Susan Strong was surprised to hear she needed heart surgery last year at age 49. But radiation therapy she had received more than three decades earlier to treat Hodgkin’s lymphoma had taken its toll: Strong had developed severe aortic stenosis and regurgitation. As an ambassador, Strong is sharing her story online and in person to support fellow patients — and even to inspire her students to dream up inventions like the one she credits with saving her life. "I want to take what I’ve been through and encourage people and give them hope that they can live a full life.”

Contact Susan on the Support Network.

Check out Susan's blog

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Meet Jen Hyde, AHA Heart Valve Ambassador

Jen, 31, from Brooklyn, NY, was born with a congenital heart condition called Tetralogy of Fallot and had her first heart surgery at age 3. While traveling through China before beginning her first semester of a creative writing graduate program at New York University, Jen began to experience symptoms associated with heart valve disease. She had her second open heart surgery to replace her pulmonary valve in 2010.

Contact Jen on the Support Network.

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Meet Kimberly Goodloe, AHA Heart Valve Ambassador

Kimberly, 48, from Atlanta, GA has experienced heart valve disease firsthand. Kimberly was born with an abnormal valve, but didn’t begin to develop symptoms until her 40s. She learned she needed an aortic valve replacement in 2009 and underwent open heart surgery, receiving a mechanical valve to replace her damaged aortic valve. Four days after her surgery, she developed a blockage and during a second surgery, she received a pacemaker.

Contact Kimberly on the Support Network.

Check out Kimberly's blog.

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Meet Bernie Oakes, AHA Heart Valve Ambassador

Bernie, 87, from Traverse City, MI, has experienced heart valve disease firsthand. Bernie was diagnosed with high blood pressure in his 20s, and had triple bypass open heart surgery in 2005. In March 2014, Bernie began to experience symptoms that indicated he had a problem with his aortic valve. Bernie underwent a minimally invasive surgical procedure called transcatheter aortic valve replacement (TAVR), which uses a catheter to replace the heart valve instead of opening up the chest and completely removing the old, damaged valve.

Contact Bernie on the Support Network.

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Meet Dennis Dobkowski, AHA Heart Valve Ambassador

Dennis, 69, from Orange County, CA, was diagnosed with a heart murmur in 2012. Over time, Dennis’s symptoms progressed, and his cardiologist decided he needed an aortic valve replacement. Dennis had open heart surgery in January 2015 at St. Joseph’s Hospital in Orange County, where his wife Ann worked as a nurse.

Contact Dennis on the Support Network.

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Meet Ann Dobkowski, AHA Heart Valve Ambassador

Ann was her husband Dennis’s primary caregiver and support system during his heart valve replacement experience. Ann’s healthcare background helped him through surgery, cardiac rehab and recovery.

Contact Ann on the Support Network.

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Meet Robert Epps, Former AHA Heart Valve Ambassador and Founding Member

Robert, 54, from Norfolk, VA has experienced heart valve disease firsthand. After many years of active duty in the U.S. Coast Guard, Robert noticed a concerning drop off in his energy and stamina. His cardiologist performed tests that revealed he had an aortic aneurysm, a leaky aortic valve (called aortic regurgitation) and a dilated left ventricle. Robert then underwent open heart surgery to replace his aortic valve with a mechanical valve. Later, Robert learned he had an aortic dissection, and has since had two additional surgeries to repair his heart. Hear about Robert's wake-up call, his valve replacement, and the gratitude that fuels his life and his mission today.

Anthony DiLemme

Meet Anthony DiLemme, Former AHA Heart Valve Ambassador and Founding Member

The list describing Anthony DiLemme is long but life-changing. He’s a 32-year-old New Jersey-to-Southern California transplant, a rock climber, a cyclist, a blogger, an avid volunteer and an enthusiastic high school science teacher. He also is a two-time veteran of open heart valve replacement surgery. He says his life — his active lifestyle, growing up with a congenital heart defect, and even his summers working as a camp counselor — has been leading up to his newfound mission. “I feel as if I have been mentally preparing my whole life for this.” 

Check out Anthony's blog.

Allison shares her story of being diagnosed with a childhood heart murmur and eventually needing heart valve repair surgery. She blamed her noticeable fatigue on work. When she was told she needed surgery, she was scared but realized her life depended on it.

Ambassador Ray Rivera’s journey with heart valve disease

Allison: From My Heart to Yours: Valve Surgery Recovery Part 2

Allison shares her journey of recovering from heart valve repair surgery. “I was ready to invest in recovery”. Almost immediately after surgery, her symptoms diminished. Support from friends and family was key to her recovery. She urges everyone to know the symptoms of heart disease and take action.

Diane Graf

Diane Graf: Heart disease and stroke survivor

Not only did Diane Graf have double heart valve replacement surgery, further testing determined that she had suffered a stroke in the process.

Karen Griffith

Karen Griffith: Aortic valve replacement

Facing aortic valve replacement at the age of 85, Karen was naturally anxious about the surgery. Her positive attitude and sense of humor helped speed her recovery, and she continues to travel and enjoy life.


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Sponsor

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The Edwards Lifesciences Foundation sponsors the AHA’s Heart Valve Education Center and Ambassador Program: Heart Valve Disease.

Heart Valve Disease Resources

Find out more about your heart valves and how to manage heart valve disease.