I was diagnosed with valve disease just two weeks after my wife and I learned that she was pregnant with our second child. Having been through one pregnancy I knew there would be countless doctor’s appointments in the months to follow.
I could never have guessed, however, that most of these visits would involve a cardiologist instead of an obstetrician.
It all started during a routine physical check-up, when my doctor stumbled upon the first clues of my disease. An unusual spike in my blood pressure and a heart murmur sent up red flags.
One test quickly led to another, and soon I was officially diagnosed with bicuspid aortic valve disease—a condition I knew nothing about.
The doctor explained that normally, the aortic valve—the heart’s main artery—has three flaps, which open wide and close firmly to regulate blood flow. I learned that my valve only had two flaps, a birth disorder that overworked the artery and impaired my circulation.
For many people with valve disease, disrupted blood flow causes discomfort, shortness of breath and lethargy. That wasn’t the case for me. My only symptom was high blood pressure, which made the diagnosis feel all the more startling.
A shared sense of disbelief drove us to seek a second medical opinion, followed by a third. The consensus among my doctors was clear: I needed to undergo open heart surgery to replace my faulty aortic valve within six months.
“I found enormous comfort in online forums and websites designed for patients of valve disease.”
With our daughter on the way, the potential risks associated with valve replacement surgery—or with any surgical procedure, for that matter—felt especially scary.
Two nervous months later, surgeons successfully replaced my bicuspid aortic valve with a mechanic device.
Post-operation recovery was slow—my medical leave from work lasted nearly five weeks—but eventually, life became normal again.
Today, I continue to take daily medication to regulate my blood from clotting. And when someone stands near me and listens closely—or when my three-year-old daughter sits on my knee—the faint ticking of my mechanic valve is just barely audible.
When I notice this sound, it’s hard to believe that there was a time when I had hardly heard of bicuspid aortic valve disease. Now, I can’t go a day without hearing my artery mechanically open and shut.
Upon my diagnosis, it was this early sense of unfamiliarity—I had never met anyone with valve disease, and knew nothing about the condition—that was one of the most challenging parts of my experience. I felt lost and isolated navigating an unfamiliar territory, one which required learning a whole new medical vocabulary to talk about my disease.
As I grappled to comprehend my diagnosis, explored my treatment options and ultimately recovered from surgery, I found enormous comfort in online forums and websites designed for patients of valve disease.
These resources provided platforms for me to read the personal stories of past and present patients, and to connect with others living with valve disease. This sense of solidarity and support is why I’m sharing my story today.
Because after the deep confusion and fear leading up to my valve replacement surgery, I emerged from the hospital healthy and strong—and just in time to welcome my wife and newborn daughter when they did the same.
By lending my voice to the conversation about valve disease, I hope my experiences can help other patients who feel as overwhelmed and intimidated as I first did, even in just a small way.