Familial Hypercholesterolemia: When High Cholesterol & Early Heart Disease Runs in the Family

Posted On Thursday, 30 March 2017
Familial Hypercholesterolemia: When High Cholesterol & Early Heart Disease Runs in the Family

I grew up in a house that was always active, either in sports or outdoors.

So, you might wonder how someone like me, now 48 years old, has already had double bypass, six stents, and a heart attack.

I learned I had high cholesterol when I was 13, right after my dad had quadruple bypass surgery. He was 39. We didn’t know then it was a common genetic disorder called Familial Hypercholesterolemia (FH), passed on from parent to child. We were told it was just unusually high cholesterol and that my dad and I would need to be on a statin for the rest of our lives.

I don’t remember my dad taking his statin… ever. I’m sure he did, but I just didn’t see him take it. I can tell you that he complained a lot about muscle aches, and so I have a feeling he quit and just tried to combat the high numbers with diet and exercise.

Dinner at the Sayers house used to be a fun time. We all sat together, in the kitchen, eating and talking.

That all changed after my dad’s surgery. My mother was a great cook and my dad loved to eat. After his surgery, my mom and he became enemies, so to speak. She would not cook the same food for him as she did for the rest of us, because she wanted him to be healthy. My dad would always say he was "starving to death." He’d grown up poor and didn’t usually have enough to eat when he was young, so food was a luxury to him. Now, he couldn’t enjoy eating like he used to because of his high cholesterol.

I never thought I would be on the same path as my dad, because our lives were so different. I was an athlete and played all sports growing up in Garland, Texas… soccer, baseball, basketball, football, even summer track and field. I was healthy and always active, and I even went on to play college Division 1 soccer. But, in spite of all that, because I have FH, my total cholesterol was over 500 mg/dL and my LDL (“bad”) cholesterol was over 350 mg/dL; over three times what it should be.

After graduation, I went into the Dallas Police Department Academy and became an officer. I was one of the top three most physically fit in my class.

I thought the path I had chosen would save me from my dad’s fate.

In 1995, while I was still in the Academy, my dad died of a massive heart attack after playing tennis one day. He was 51 years old.

My dad’s death hit me hard. I swore that I would not be him; I would do things better. I found a cardiologist and got back on my statins. I took my medication religiously for the first few years on the police force. My cholesterol level was still more than twice what it should be, but it was better.

Eventually I became frustrated with the high cost of the drug. My insurance would not cover the cost, and I didn’t like spending so much of my hard earned money on a drug when I couldn’t really tell if it was working. So, I quit taking it.

In the summer of 2008 I was playing in a soccer game and realized I was having problems breathing. My cardiologist scheduled a Stress Test. I didn’t think anything of it, because just two years prior I had a Stress Test and my cardiologist said I was fine.

I knew something was wrong when I asked the technician how it went, and he said he needed to get my cardiologist to come talk to me.

That’s when I received the bad news. I had eight arteries that were all 90% or more blocked. She admitted me into the hospital and the next morning I had five of the blockages stented. I was told to take it easy and come back two weeks later to get the other three fixed.

Upon my return visit, I heard the surgeon talking to his partner about how he was having problems getting to the blockages. The surgeon stopped and explained to me that it was too blocked and I would need to have bypass surgery. The next day, my chest was cracked open and I had double bypass at age 39; the same age my dad was when he had his bypass.

Emotionally, I was a wreck. I remember crying in my hospital bed after my wife and mother left the room, because I knew I was on the same path as my dad. I felt like I was destined to die young, just like him, no matter what I did. Fortunately, my cardiologist talked me off the ledge. She explained to me that there were more options now; options that were never available for my dad.

I started taking my meds again, and I felt great for the next six years. My LDL cholesterol was still too high, so my doctor recommended I add a new medication to try to get my numbers under control. My insurance did not want to cover my new treatment, an injectable drug called mipomersen. They said I needed to show that my numbers were high enough to justify it, but since I was taking a statin, my numbers did not meet their criteria. I stopped taking my medications to demonstrate to the insurance company how high my LDL cholesterol was without treatment.

On January 28, 2014, I was playing indoor soccer. After the game, I came home and started having chest pains that wouldn’t go away. I told my wife to take me to the hospital. Sure enough, I had a heart attack and needed another stent; number six, if you are counting.

I was 45 years old and feeling again like I was on the same path as my dad. At that time, I had a seven-year-old boy and a 10-year-old girl. I didn’t want to leave them without a dad, or leave my amazing wife to raise them without me. My cardiologist told me about another new drug just approved by the FDA, a PCSK9 inhibitor. I got started on it, along with a statin. I can now say that my cholesterol numbers are where my cardiologist wants them to be: 150 mg/dL total cholesterol, with an LDL cholesterol of 60 mg/dL. Those are numbers I never dreamed of.

For the first time in my life I don’t feel like I’m going to die at 51. I can see the future. I volunteer my time with the FH Foundation to help raise awareness and save other families from experiencing what my family has gone through. I still battle with insurance. They stop sending the medication every few months, saying I need a new prior authorization or I have “reached my limits.”

What does that mean, “you have reached your limits”? It’s like saying they are tired of paying, so they’d rather I die, because that would be cheaper.

But, I will keep fighting. We had our children’s cholesterol checked, because FH is genetic. My daughter inherited FH from me, and she has already started to treat her high cholesterol. I am on a different path from my father, but with early diagnosis and treatment, I hope for a clear path for my daughter; one that is free from heart disease.

*To learn more about Familial Hypercholesterolemia, visit the FH Foundation website.

Scott Sayers

Scott Sayers is a Dallas Police Homicide Detective and an FH Foundation volunteer Advocate for Awareness. He lives in Texas with his wife and two children, where he still loves to play soccer.

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