Last year, at 54, my life dramatically changed. While on a walk with my dog, I had the sense of something being not quite right. I had a prickly feeling in my chest and an unusual sensation shot up my neck. It was not painful, but it got my attention. An unusual sense of fear motivated me to go to the emergency room. The ER doctor reviewing my family history of familial hypercholesterolemia (FH) suggested I stay overnight for observation. I am so grateful for his attention to detail because, over the next several hours, it became clear that I had experienced a mild heart attack. A few days later, I would have quadruple bypass surgery. My blockages were many and severe, which was incredibly distressing for me, my husband and my two daughters.
My mom lost her father when she was only 5 years old. He was just 30 when he died of a heart attack. As a nurse, she knew her own extremely high cholesterol numbers indicated that she had hereditary high cholesterol. I remember my mom taking me to have my blood drawn at age 5. I was too young to understand why, but I would later find out that it was to identify that I had inherited familial hypercholesterolemia.
Our family history told a sad and deadly story. Yet, my mom is 78 years old and has not had a heart attack — much to the surprise of her doctors. Even though I was treated throughout my life with various cholesterol-lowering medications, I mistakenly assumed I would do as well as she did in terms of my cardiac health. This did not turn out to be true. Our cholesterol numbers were very similar, but our outcomes have been completely different. I thought I had been doing enough, my doctors thought they were doing enough, but clearly, we had not done enough. The most important lesson that can be learned from my story is that even though other direct family members have not had heart attacks, or any heart procedures, it does not mean that you will be spared if you have FH.
While recovering from bypass surgery, I searched for others who had similar experiences. The FH Foundation website was a lifeline for me. I found people like me, living with heart disease who discussed and shared their experiences. The knowledge I gained there allowed me to advocate for my own best care.
I am currently undergoing bi-monthly LDL apheresis while staying on a PCSK9 inhibitor and taking a bile acid sequestrant. The results of this treatment are amazing and will hopefully extend my life. There is hope for those of us with heart disease, and there is strength to be found in connecting with others who share similar experiences. Reach out to others to help stay positive when you are facing cardiac challenges.