You could argue that I began “living with heart disease” at age 14. It was warm summer day at the beach with my extended family. I remember it distinctly because my normally frugal grandfather “Poppy” bought all the grandchildren TWO ice cream bars. Later that day at about 8:00 p.m. I picked up the ringing phone. It was my cousin calling to say that Poppy had just died of a heart attack at age 65.
Roughly two decades later, I received another phone call. “Uncle Ray,” my mother’s brother (Poppy’s son) and a strapping firefighter, had just died of a heart attack at age 54. Then, one morning, 15 years later, a phone call at 3:00 a.m. woke me. It was my sister-in-law. My mother had just died of a heart attack at age 65, not two weeks after passing a complete physical. First my grandfather, then my uncle, and now my mother, all perfectly fine one moment and suddenly dead the next. Was I next? It was time to take control of the situation.
Family history and heart health
Given my family history, even before my mother’s death, I had always paid attention to my heart health. My family doctor routinely tested my cholesterol and pronounced I had nothing to worry about. My low LDL (bad) cholesterol of 114 mg/dL meant, according to my doctor, I had escaped whatever bad genetics might have contributed to all those heart attacks. As I go over my old medical records, I find that what he didn’t tell me was that my HDL (good) cholesterol was also low at 29 mg/dL (more on that later).
I also spoke with my doctor about having what was at the time a new test—a “heart scan.” My doctor dismissed the notion as a waste of time and money. I went home blissfully ignorant. Surely my doctor would prescribe any test or treatment that was appropriate.
Not necessarily, as I found out later.
I became a skeptic and a health consumer advocate shortly after my mother died. Three close blood relatives, all perfectly healthy one minute and dead the next of a heart attack? This had to be more than a coincidence. I decided to take matters into my own hands and have a heart scan, and there it was, despite my doctor’s assurances—the early stages of coronary artery disease (CAD). I now knew for certain I had heart disease—and I was terrified!
The next several days and weeks were miserable. I was afraid to do anything or go anywhere. I felt like there was a time bomb ticking in my chest waiting to kill me at any instant. Every muscle pain, stomach ache, or heart flutter created a sense of impending doom. I can’t tell you how many times I rushed to the emergency room thinking, “Is this the ‘BIG’ one?” Every doctor dismissed my heart scan and told me I was fine, but I knew I wasn’t. No one could tell me what to do. I felt alone, afraid, almost welcoming death as an alternative to living in fear. I had to do something!
I have always been a numbers guy—I'm an engineer, I have an MBA, and I'm a statistics junkie. In order for me to take control, I felt I needed to just get my hands on the “right” numbers and learn how to manipulate them. I called the heart scan center to ask if they knew any docs who understood how to interpret a heart scan score and prescribe proper follow-up treatment. They did. Here is some of what I learned from these cutting-edge doctors.
Over two decades ago, Dr. John Rumberger, former professor of cardiovascular disease at the Mayo Clinic, discovered that roughly 20 percent of all the heart plaque that results from atherosclerosis was made up of hardened calcium which can be detected by specialized CAT scans or “heart scans.” If your heart scan score is zero (no calcium), your likelihood of having a heart attack is close to zero (it is never completely zero) and it increases as your calcium score increases. This provided the first non-invasive way of detecting and tracking heart disease. Unlike other measures such as cholesterol which only determine your risk of heart disease, a heart scan can tell if you actually have heart disease.
I also found out that medical science has advanced well beyond simple lipid panels and cholesterol screens. New advanced lipoprotein testing could uncover additional root causes for heart disease like the presence of lipoprotein(a), the size and number of your LDL cholesterol particles (smaller sizes and higher particle number make even low cholesterol, as measured by earlier tests, more deadly), and numerous other factors.
Here was the data I needed to take control. I had high lipoprotein(a), low HDL cholesterol, and a high small LDL particle count. Based on this data, the best and most appropriate first-line treatment for me was not a statin drug as another traditional cardiologist prescribed, but a nutritional supplement—niacin (two grams per day, far more than in a multivitamin). With the advanced lipoprotein testing and a heart scan to tell me whether I was getting better or worse, I had all the numbers I needed to understand my unique and personal condition and take the appropriate steps to control it. It is a way of dealing with personal health issues that I have dubbed Informed, Self-directed Healthcare (ISH).
Within two years, my heart scan showed my plaque growth slowed to zero. As I have grown older and my body changes, I have to continue to test, track, and learn new things. For example, I am prediabetic now, so I simply added new numbers to track, like my A1c, to tell me whether my diet and exercise changes are sufficient to compensate for my condition. I recently learned of a new test that tells me what my “ApoE” genetic type is. Sure enough, ApoE2 people (like me) need to watch their carb intake while ApoE4 people have to watch fats more closely. This new knowledge helped me improve my diet (I look for ways to replace carbs with good fats).
It has been ten long years since I decided to take control of my heart disease, and it has certainly been worth it physically and mentally. I still think twice when I tweak a chest muscle exercising or my heart skips a beat, but the understanding of my body and feeling of control I now enjoy helped make dramatic improvements in my emotional and psychological well-being as well. What I am most grateful for are all the places on the internet I can go to for information or just some friendly and reassuring conversation with other people just like me. The ability to learn and share instantaneously and without limit is perhaps the most empowering factor of them all.