Almost four decades have passed and the image of my father and step-grandfather violently breaking down the door and carrying out her naked body into the light has remained vivid in my memory. We never knew for sure what took her life.
As a kid, I learned to get used to my heart skipping a beat or speeding up for no apparent reason. I knew that if I would stop just for a moment and wait, the discomfort would go away. Palpitations were quite frequent and I assumed other kids had them too. As an adult, I often thought they were a sign of an unbalanced diet, or the result of too much caffeine and stress.
But then, at 37, I passed out after running up a flight of stairs to catch a commuter train. My heart had gone faster to keep up with my body’s demand for oxygen but had failed to slow down after I stopped running. It just continued to beat faster and faster. I fainted on the platform that day and missed my train.
This is where the scariest chapter of my life begins. After that syncope, and a year of misdiagnoses, I was finally told I suffered from a somewhat common type of genetic heart disease: Hypertrophic Cardiomyopathy.
HCM afflicts 1 in 500 people worldwide, and may cause the heart to develop a deadly arrhythmia, resulting in sudden death. The Hypertrophic Cardiomyopathy Association, HCMA, says on their Web site that nearly 50% of all cases on file are of patients who lived with improper diagnoses for many years.
My first cardiologist suspected mitral valve prolapse (MVP), and my second one never told me I was at risk of sudden death. Per the latter’s advice, I resumed my life as before, unaware of the serious risks. I had to suffer two additional syncopes before I decided that I needed to take matters into my own hands, educate myself about my condition, and seek the care of an HCM specialist. And in my quest, I turned to the Internet for help.
According to iCrossing, a global digital marketing company based in Arizona, 59% of adults use online resources to obtain health information, versus 55% who rely on their doctors. Their study “How America Searches: Health & Wellness” (January 2008) indicates that the Internet has for the first time, ranked ahead of doctors as the number one source of health- and wellness-related information.
But most importantly, the study revealed that social media are increasingly relevant to health and wellness, with 34% of health searchers using Wikipedia, online forums and message boards to delve into health-related topics.
It’s a radical finding: patients aren’t learning from their doctors or even from Web sites as much any more. Patients are learning from each other.
In my experience, as soon as I realized my doctors weren’t giving me the answers I sought, I joined the HCMA online community and got plenty of answers from a network of patients like me. It was the beginning of my transformation from patient to consumer of health care.
After changing doctors and receiving an implanted cardioverter defibrillator (ICD), I joined two other patients and created a local support group. The Bay Area ICD User Group's mission is to educate patients on ICDs and ICD therapy, address concerns and questions, facilitate improved communication with our doctors, and to serve as a network for sharing experiences.
Today, I no longer think of myself as a lonely patient. I have become an empowered medical consumer who finds comfort, validation, and knowledge in the experiences of others like me. I have also learned to embrace my heart disease. It has given me the opportunity to better myself and to meet many wonderful people along the way.
I now realize that my grandmother’s sudden death was likely due to an undiagnosed cardiomyopathy—perhaps HCM. All we knew back then was that Grandma Lourdes had an “unusually large heart.” But as a kid, I always knew that.
|Above, from right, grandma Lourdes, me (age 6), mom, and a friend.|