It was 2010 and I was 36 years old. I was living in Texas at the time, enjoying my career at Motorola. When I wasn’t working, I was bass fishing on Lake Austin, recording music and having cook-outs with our neighbors. Most of all, I was enjoying spending time with my two active young boys. Life was about to change.
Early that year, I started noticing differences. I could no longer sleep on my side without my arm falling asleep. Knowing that my maternal grandfather had died suddenly of a massive heart attack at the young age of 44, I was concerned enough about my circulation that I visited my family doctor. That doctor had the foresight to suggest that I have my Lipoprotein(a) tested, in addition to a regular cholesterol panel, and this was when I first discovered that I had elevated Lipoprotein(a), also called Lp(a).
"That doctor had the foresight to suggest that I have my Lipoprotein(a) tested, in addition to a regular cholesterol panel, and this was when I first discovered that I had elevated Lipoprotein(a)."
The engineer in me immediately started researching whatever I could about protecting myself from heart disease. I drastically changed my diet. I went from being the resident rib-cooking expert on my block to someone who ate a completely whole-foods, plant-based diet. My results were encouraging - within a few weeks, I had cut my cholesterol measurements considerably, along with readings for other risk factors. My results even convinced my family doctor to change his diet! I found a cardiologist I could trust and monitored myself closely. My lipid results remained well below the recommended levels and this gave me a sense of security. I thought I was heart attack proof.
Knowing that exercise is a key component for heart health, I also started running. Having moved back to California, I took advantage of the mountains and spent long days doing 20+ mile runs up and down summits throughout southern California. In April of 2017, I completed my first 100-mile ultramarathon.
In 2016, during a descent on one of those training runs, I took a fall and my knee landed on a boulder embedded in the trail. Upon looking at the results of the MRI of my knee, the doctor sat me down. She didn’t want to discuss my knee. She honed-in on the calcified deposits she could see in the arteries of my legs. She told me that there was no way someone my age should have this and that I needed to see my cardiologist sooner rather than later. I took her advice and visited my cardiologist. Without much consideration, she told me I didn’t have peripheral artery disease and sent me on my way. This increased what I now know was a false sense of security.
Starting in March 2018, I began to experience extreme fatigue and I noticed my ankles were always swollen at the end of the day. I wrote these symptoms off as stress and running too many miles combined with a grueling commute, a high-stress job and a divorce after sixteen years of marriage. By June, I had quit running all together. I was finding it extremely difficult to stay awake during the day no matter how many hours I slept at night. Soon, I started experiencing chest tightness along with arm and jaw pain. Again, I blamed stress for the chest tightness. I started sleeping with a mouth guard thinking the jaw pain was a result of me grinding my teeth at night.
In November of that year, I had a very sharp pain go through my chest and radiate to my back followed by dizziness. Fearing a heart attack, I rushed to the emergency room. They did an EKG and called my cardiologist. She assured the doctor on duty that it was most likely anxiety and they sent me home without further testing.
I continued to get weaker and even more fatigued over the holidays and on January 12, 2019, my new wife and I were on a run together in the Santa Cruz Mountains. We were on our last climb back to the beginning of the trailhead when I began to get tunnel vision. This continued to worsen, and I eventually lost clear vision out of my left eye. I had an overwhelming sense of doom and the need to keep moving, so I did. Once we got to the top, I glanced at my watch and saw that my heart rate had dropped to less than 60 beats per minute. I checked the data and my heart rate had suddenly plummeted from the mid-140s, which is normal for me on a climb, to the mid-50s. This was my wakeup call that something was very seriously wrong.
"I called and tried to get the test done sooner, but my case was listed not as ‘priority,’ but as ‘routine.’ I asked my doctor to change my status to priority, but she never did."
I scheduled an appointment with my cardiologist for February 1, 2019. After my experience on that run with elevation and heart rate data that supported the very scary symptoms I felt, I expected her to be concerned. Instead, she questioned why I was even there. I explained everything that had been happening to me and finally, after some debate, she scheduled a CT Angiogram nineteen days later. I called and tried to get the test done sooner, but my case was listed not as ‘priority,’ but as ‘routine.’ I asked my doctor to change my status to priority, but she never did.
Once the CTA was completed it took several days to get the results and by this time I was very sick. I couldn't walk even a few blocks without experiencing dizziness. In addition, that overwhelming sense of doom and pending death I felt on that climb in January was now constant and grew more intense.
I started diving into as much information as I could about Lp(a). I found a doctor at University of California, San Diego who is considered the world-leader in Lp(a) research and I scheduled an appointment with one of his team members for early March. At this point, I desperately wanted and needed a second opinion.
After reviewing my record and a brief discussion with me on what I was experiencing, my new cardiologist sent me straight to the Emergency Department for a cardiac catheterization and angiogram. Going into the procedure I was more scared than I had ever felt in my life before. I was nervous about the procedure itself and I know part of me was scared to potentially learn I had advanced heart disease. I had changed so much about my life so I would never have to be in that position, yet there I was. I was facing my biggest fears I’d ever had about my health and well-being.
"Luckily, I had symptoms, listened to that voice inside and advocated for myself. Otherwise, I do not think I would be here today."
I recall during the procedure the doctor indicating that the right side of my heart looked good. The relief I felt quickly turned to concern when I could sense his mood changing upon examination of the left side. It turns out he discovered four back-to-back lesions in my proximal left anterior descending artery requiring a long 4mm x 38mm stent to open it back up. I was about as close as you could get to a “widow maker” heart attack without actually having one. Luckily, I had symptoms, listened to that voice inside and advocated for myself. Otherwise, I do not think I would be here today. I knew about Lp(a) but what I didn't know was the severity of it. I am one of the few lucky ones to come out on the other side of a massive proximal LAD blockage.
My message to others is to get tested for Lp(a) so you know if yours is high and listen to your own body. Learn all you can, advocate for yourself, and find a doctor who will listen. It could save your life.
Advocate for Awareness
Family Heart Foundation