Commemorations and special recognitions, like the American Heart Month we observed in February, are wonderful things. They help to call attention to a major issue or societal problem, as we did with the first-ever Heart Valve Disease Awareness Day during this special month.
However, while commemorative months help to shine a necessary spotlight on matters of great concern, they don’t solve them. And when the month ends, we’re still faced with the fact that many Americans have heart valve disease, in addition to the five million who have been diagnosed, but aren’t aware they are carrying a health condition that can diminish and shorten their life.
That’s why we need more than just a 28-day focus on heart valve disease. This requires a year-round effort to make people more aware of the need for and importance of prevention, diagnosis, effective treatment and ongoing care. Throughout this year and every year, I want to encourage more people to share their stories that are similar to mine, that of a survivor of Hodgkin’s lymphoma who experienced heart damage as an unintended consequence of the radiation treatments that saved my life. Those cancer treatments happened when I was only 17, but my heart valve disease appeared decades later and wasn’t diagnosed until I was 47.
Our organization, Heart Valve Voice – U.S., is essential because heart valve disease is both under-diagnosed and under-treated in this country, and most people don’t have the same knowledge about this illness that they do about cancer or diabetes, for example. A survey conducted last year by the Alliance for Aging Research found that less than one of every four Americans have a significant amount of knowledge about heart valve disease and approximately 60 percent of those with the condition only found out about it because they went to a doctor for a regular checkup.
This isn’t particularly surprising. The two major types of heart valve disease don’t generate the kind of conditions that make a person immediately aware of what may be wrong with them. Stenosis, when calcium deposits keep the heart valve from opening all the way, leads to the kind of symptoms – gradual escalation of fatigue and breathlessness – that many associated with the natural aging process. And another form of the disease, regurgitation (when the valve doesn’t close completely and blood “leaks” backward into the heart) can have indiscernible symptoms but can lead to congestive heart failure.
So what do we do to keep this “silent killer” from claiming more lives? My message to everyone within reach of these words is comprised of multiple parts:
- Be aware of the signs and symptoms that may indicate heart valve disease. If you have a lack of energy, shortness of breath whenever you exert yourself, or tightness in your chest, it would be a good idea to get yourself checked out. In fact, you should ask your doctor to refer you to a cardiologist regularly for an echocardiogram, a simple, non-invasive test that uses ultrasound to let the physician see an image of your heart. This is particularly important for our more vulnerable citizens. Minority populations have a greater propensity for heart disease and have less awareness of heart valve disease than their white counterparts. Women are also less often diagnosed and treated for heart valve disease than men, even though heart disease writ large is the leading cause of death for women in the United States.
- The health care community as a whole needs to shed more light on the linkage between cancer and heart disease, especially heart valve disease. There are more cases like mine, in which radiation treatments to the chest can damage the heart valve. It’s been found, in fact, that chemotherapy agents like adriamycin can have harmful effects on the heart years, even decades, after treatment. It is very promising that leading healthcare providers, like the Mayo Clinic and Cleveland Clinic are creating dedicated cardio-oncology units to specifically address the connection between cancer treatments, survivorship, and long-term heart health.
- And, for everyone, we need to continue emphasizing the need for healthy lifestyle habits. Don’t smoke (and, if you do smoke, find a good smoking cessation program). Eat more fruits and vegetables, less sugar, and fewer processed foods. Get more sleep. Manage your stress levels. Exchange the sedentary lifestyle for more motion. Your heart will thank you.
And for those who do have heart valve disease, it is vital to keep an optimistic outlook. Surgery isn’t always necessary (and it’s worth noting that valve replacement-via-catheter (TAVR)), a much less invasive surgical option, is in clinical trials for low risk patients. It is available today for high and moderate risk patients. It is important to know that previous radiation to the chest qualifies most patients as high risk, and therefore eligible today for TAVR). Treatment options can include medication to manage symptoms or even regular monitoring of the heart valve. But, even if surgery is required, it can be scary but it is definitely manageable. It’s been two years since my heart valve replacement and I have no restrictions in the way I want to live my life, whether it’s taking a long hike or corralling a classroom full of middle-schoolers!
Getting treatment, in whatever form, for heart valve disease is an extraordinary gift that can’t be matched. It gives you your life, and the ability to live your life to the fullest.
I have a sign in my bedroom that is the first thing I see when I wake up every morning. It says, “Do one thing everyday that makes you happy.” Being part of Heart Valve Voice – U.S. makes it easy for me to fulfill that mission. We’re a community of volunteers telling our stories and raising awareness to help those living with heart valve disease as well as those who don’t even know they have it. We are, I firmly believe, making a difference, and we can make an even greater one if you sign up to add your voice.
American Heart Month may have ended on February 28th. I saw that date not as a finish, but rather as a springboard to intensify and amplify the heart health message in each day to come.
President, Heart Valve Voice-U.S.