Since last summer, I have been volunteering for the American Heart Association as a Heart Valve Ambassador, alongside 8 other valve patients. We come in different shapes, sizes, ages, genders, and from all over the country. The AHA originally found me through my blog. Since becoming a volunteer, the AHA has featured me in their own blog, and connected me with the Wall Street Journal for an article about on heart surgery recovery.
The role of the Heart Valve Ambassadors is to tell their story and to support new heart valve patients, especially through the American Heart Association’s Support Network; a social media platform in their website that allows patients to communicate and support each other. The Ambassadors are responsible for facilitating conversations on the Support Network.
When people go through something like heart surgery, they often look for others who are similar to them who have already been through it. I get lots of emails from people, especially those that are my age. If you are a heart valve patient, please check out the AHA Support Network (create an account) and also feel free to message any of the Heart Valve Ambassadors directly. Read their stories and if they seem like they may be able to help you, please message them. That is our job as ambassadors.
Click on any of the Ambassador’s names to read their full story.
Or click here to meet the Ambassadors on the AHA Support Network
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. Ann was 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.
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.”
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.
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.
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.
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.
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.
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.”