My Dancing Heart: Susan’s Story

My assistant looked up as I walked past her desk. “Are you having trouble breathing?” she asked. “Shouldn’t you call your doctor?”

“I tried – they’re gone for the day.” I shrugged my shoulders, said, “goodbye,” and headed out to my car. It was a rainy September evening. I felt a strange sense of defeat as I drove home. I tried to process what I was experiencing. I only felt shortness of breath when I got up from a chair and started walking. The other odd thing that I noticed the night before was that I couldn’t lay flat in bed – I felt like I was being strangled.

When I got home, I changed into sweats and asked my husband to take me to urgent care. It was late and they were about to close so we drove to the hospital. When I walked into the Emergency Department I said, “I think I have walking pneumonia.”

After a chest X-ray and a CT-Angiogram, they diagnosed me with pericarditis – inflammation of the lining around my heart. As I lay there in the early hours of the morning, with more than 400 ccs of fluid compressing my heart, I experienced a cardiac tamponade. The pressure from the fluid caused my left ventricle to collapse. I felt as if I might void and vomit. I turned to look at the monitor and saw that my blood pressure had plummeted, so I pressed the call button. “I’m crashing,” I said.

In seconds, I was surrounded by members of the ED team. The doctor probed me, thinking he needed to do a pericardiocentesis, an emergency procedure to drain the fluid around my heart. But the cardiologist on call recommended they stabilize me and later perform a safer procedure, pericardial window surgery. In the moment, I trusted that I was in the right place at the right time. I had no control. I was in their hands.

Later that morning, while the cardiologist discussed my case with a colleague, I watched my heart in technicolor on the HD screen, bouncing like a fetus in amniotic fluid. I told the doctor, “I can see why you wanted to wait to do the other surgery.” Later, speaking with a resident, I referred to My Dancing Heart, and he told me that’s exactly what they call it: The Dancing or Swinging Heart.

The window surgery was successful, the fluid was drained. I spent six days on oxygen because of the pleural effusions. All the tests were negative for cancer, lupus, and other causes. It was acute idiopathic pericarditis and I went home on ibuprofen, metoprolol, colchicine, and spironolactone. After three weeks I could walk around the block. I recovered and never had a recurrence. But the episode remained a mystery to me.

And not one of my doctors ever mentioned my cholesterol.

Discovery

It wasn’t until five years later, terrified after receiving an A1C test result of 5.7, that I decided to transform my weight and explore my body’s insulin response to food. Type 2 Diabetes ran in my mother’s family. This wasn’t my first rodeo, but this time, I studied as I lost seventy pounds. I tracked everything – exercise, fluids, macros, and calories. Intermittent and therapeutic fasting, a low-carbohydrate diet, and a continuous glucose monitor were the methods and tools I used to reverse my insulin resistance. My fasting coach noticed my homocysteine and CRP numbers were out of range.

Through an advanced lipid panel, I found out that my ApoB-100 was 134 and my lipoprotein(a) was 229 nmol/L. Both were out of range and in the red zone on the chart. Like most people, I had no idea what these numbers meant at first. I started researching ApoB-100 and learned that it could be atherogenic and was a primary cause of cardiovascular disease. I was totally focused on reading about ApoB until I came across a research paper that associated aortic valve stenosis with elevated lipoprotein(a). It was my Eureka moment: my mother had aortic valve stenosis! I turned my attention to Lp(a) and learned that it was a hereditary biomarker.

I showed my results to my primary care physician. “We don’t know what to do with those numbers,” he said. In other words, why test if there’s no treatment? That’s when my eyes were opened to a different paradigm of test to treat.

Not satisfied with these answers, I found my way to the Family Heart Foundation. I applied to train as an advocate for awareness and became a Family Heart Ambassador for the organization. I educated myself about cholesterol.

My PCP offered to prescribe a statin, but I first wanted to know the nuances of how my body produced cholesterol. I ordered a specialized cholesterol balance test and discovered that I am a hyper-absorber of plant sterols, particularly, sitosterol. My lab results even suggested that ezetimibe could be the treatment I needed.

I found a cardiologist-lipidologist near me and went to see him. He ordered an echocardiogram and genetic testing for ASCVD Risks. The most amazing thing about the genetic testing was that I had four different genes that coded for obesity – the FTO was homozygous, meaning that I got it from both parents. Finally, after reviewing these tests, my new cardiologist and I agreed that I would start ezetimibe.

But there was one more test I wanted, a CCTA to see if I had hard and soft plaque. When I learned that my calcium score was zero, I was finally able to sleep at night and turn off the high-anxiety switch. I am one of the lucky ones. I have elevated Lp(a), a triple-threat for coronary artery disease, but some of my other genes – PCSK9, ApoB, and LDLR are protective in my case. Although this is not the end of my health journey, curiosity is the strength that drives me to learn. My discovery phase took more than 10 months. But, as one of my favorite poets, Ralph Waldo Emerson said, “Knowledge is the antidote to fear.”

Advocacy

The Family Heart Foundation has provided me a platform and opportunity through its Empower Lp(a) support group network. With the unwavering support of Jen Farnell, Community Activation Manager, and Eric Tricou, Care Navigator, I have co-hosted many meetings with expert speakers on topics such as diagnostic tools – serum blood tests, genetic testing, and radiographic tests. We have focused on dietary considerations and science from sterols to Lp(a) structure to current treatments and potential therapeutics.

Family Heart has provided fellow Ambassador Roger Zellner and I to host a program, Dealing with a Diagnosis of Elevated Lipoprotein(a), for the newly diagnosed. We took 32 people through a process of 5-stages, from Discovery and Reaction, to Efficacy, Acceptance and Drive for self-care, family testing, and community advocacy. More than anything, we want to guide people who have recently tested – the 1 in 5 who have inherited elevated Lp(a) and the 1 in 250 who were born with Familial Hypercholesterolemia to a place where they can become educated, feel supported on their health journey, and learn how to advocate for themselves and others. Most of all, we want them to know they are not alone on their journey.

When I think back on that September evening a few years ago, I know that I survived a terrifying ordeal to find a greater purpose. Today, I work with clients on weight transformation and metabolic health. A genetic blueprint may show you the cards you were dealt with genotype and SNPs, but lifestyle can truly make a difference. Healthy habits can mitigate the manifestation of chronic disease and conditions such as obesity and pre-diabetes.

You can work on eating whole and unprocessed foods and exercise for resistance, endurance, flexibility and balance at any age. You can be treated for high blood pressure, and you really can stop smoking. Some habits may seem harder than others to change, but we can grow our mindsets and believe in our innate capacity to succeed – one intention at a time, one day at a time.

We can get busy living and put our hopes in the development of future treatments and the ongoing good science that top researchers are still discovering. We can use our courage and our signature strengths to help us develop our vision of success and live our best and healthiest lives. As Dr. Atul Gawande wrote in his seminal book, Being Moral: Medicine and What Matters in the End: “One has to decide whether one’s fears or one’s hopes are what should matter most.”

Be brave. Be curious. Be determined. Science evolves, and so do we.