During February each year, we recognize several health-related causes that are near and dear to my heart and yours, literally. After all, February is American Heart Month – a month-long celebration of heart health. Later this month, on February 22nd to be exact, we will recognize the first ever Heart Valve Disease Awareness Day in the U.S. Heart Valve Disease doesn’t get as much attention as many other diseases of the heart, which is why some refer to it as a “silent killer.”
My awareness of heart valve disease began rather abrubtly with an unexpected diagnosis of severe aortic stenosis and regurgitation at age 49. As a long-term survivor of Hodgkin’s lymphoma, I learned that the radiation that saved my life from cancer when I was only 17 also left my aortic heart valve damaged. Ultimately, my valve had to be replaced.
It’s been more than two years since my valve replacement surgery. In addition to doing the things I’ve always enjoyed – like hiking and teaching middle school – I’m committed to helping others by sharing my story and advocating for better health for those living with heart valve disease. As the first President of the patient advocacy group Heart Valve Voice-U.S., I encourage you, too, to lend your voice to help, to share how heart valve disease has touched you, and to help us this month and year-round by volunteering to raise awareness and make a difference.
At least five million Americans have been diagnosed with heart valve disease in the U.S., and, I fear, many others have the disease but aren’t aware of it. You see, the disease can have symptoms you don’t notice or don’t recognize. Even when symptoms aren’t obvious, heart valve disease can be serious and fatal if left untreated.
Research shows that heart valve disease is both under-diagnosed and under-treated in America, which is our rallying cry to do more. Although men and women develop heart valve disease at the same rate, women are less often diagnosed and treated – another important motivator for us to get involved and make a difference. Greater awareness of who is at risk, what to look for, and better access to screening, diagnosis, and treatment are critically important to reaching more people with heart valve disease and saving lives.
Understanding what your heart valves are and do is a good place to start. Your heart has four heart valves that keep blood flowing through your heart in one direction. Think of the valves as gates, opening to let blood flow through the heart and closing to prevent blood from flowing backward. When those gates don’t work properly, the heart has to work extra hard and serious problems can develop. The heartbeat itself is your heart valves opening and closing, so a doctor listening to the heart with a stethoscope is often the first screen for problems.
Some people are born with a heart valve problem. In fact, about 40,000 babies each year in the U.S. are born with a congenital heart defect, many of them involving the heart valves. Some face surgery within the first two years of their lives and typically need lifelong cardiac checkups to maintain their health. Medical advances in treating congenital heart defects means more babies born today, even those with complex heart defects, are more likely than ever to live into adulthood.
For others, heart valve disease develops over time and can take different forms. Remember the analogy of heart valves being like gates in your heart? Over time, those “gates” can get “rusty” with calcium deposits and stop opening all the way. This lets less blood flow through and causes the heart to work harder. With less blood flowing through, the person can feel tired more often and feel out of breath. This can come on so gradually that people don’t notice it right away or, mistakenly, assume they are “just slowing down” as a “normal part of aging.” This hardening or “rusting” of the gate is called stenosis and typically affects the aortic and/or mitral valves in the heart. Age is a major risk factor for developing stenosis. Stenosis can range from mild to severe, and even when severe, someone may not have symptoms that are noticeable.
Another common problem occurs when the heart valves don’t close all the way. Without the valve closing completely, blood can flow backward in the heart. This condition is often called a “leaky valve” or “regurgitation.” Often, the person with a leaky heart valve may be unaware of the problem. Leaky valves can lead to congestive heart failure and other serious complications.
Heart valve disease can be treated successfully. I’m living proof. Depending on how serious the heart valve problem is, treatment options can range from regular monitoring of the heart valve, medication to manage symptoms, and/or surgery to repair or replace the valve. Facing any surgery can be frightening, but heart surgery can be particularly scary. I encourage you to learn all you can about your treatment options and to reach out to others, like me, who’ve faced what you’re facing and are willing to help. As a community, we can help each other.
And, people living with heart valve disease – both the diagnosed and undiagnosed—need our help. Heart Valve Voice-U.S. is a community of volunteers advocating for better health for people living with heart valve disease by raising awareness of the challenges people with valve disease face and encouraging better access to prevention, diagnosis, treatment, and ongoing care. Together, we can make a difference.