The Healthy Man’s Heart Disease

 Christian Jacobs lives in fear that he could die of a heart attack at any time. And he’s just 21 years old.

Sometimes I envy some of my peers whose biggest concern is flunking a final exam or midterm. While I do worry about those things, I also I live with the constant fear that I could die of a heart attack or stroke at any time. This fear might sound premature coming from a seemingly healthy 21-year-old like myself. After all, heart attacks and strokes typically occur in people who are middle-aged or older.

Unfortunately, I am an exception to the rule.

At the age of 2, I was diagnosed with familial hypercholesterolemia (FH), a common genetic disorder that can lead to premature heart disease. FH causes unusually high cholesterol levels to build up early in life – even during childhood. It occurs in about 1 in 500 people and often goes undiagnosed. As cholesterol builds up, people with FH are more likely to have early heart disease that can lead to heart attack or stroke. I have a rare form of FH called homozygous FH (HoFH), which is more difficult to treat.

Growing up with FH was a struggle. By the time I was nine years old I had already endured three heart catheterizations and was taking 15 pills each day to manage my cholesterol. According to the American Heart Association, a person with cholesterol level of more than 240 mg/dL has more than twice the risk of coronary heart disease as someone whose cholesterol is below 200 mg/dL (a healthy cholesterol level).  My cholesterol level at its peak was more than 900 mg/dl.

As a child with FH, this disease affected me on the inside and the outside. I was constantly teased by kids in school because my body was covered with orange bumps caused by the disease. At the time I knew I was sick, but I was too young to really understand FH; so it was hard for me to explain why I looked the way I did to my classmates. Today I know that the orange bumps are called xanthomas, small deposits of cholesterol under the skin that occur in people with dangerously high levels of cholesterol. Sometimes the bumps would get irritated and infected from doing simple things like putting on my shoes or running in gym class. I remember keeping my hands in my pockets whenever I could and wearing long-sleeved shirts and pants, even on hot summer days, to conceal my bumps.

Years later the physical scars from my condition are mostly gone, but I still face many challenges. Currently, I am on seven different medications and take 19 pills per day to try to lower my cholesterol. Last year was one of the most difficult times for me because I was diagnosed with severe heart disease. Four of my arteries were blocked at 75 percent—a health problem that usually only affects people who are 50 years old or older. Two weeks ago I had my fifth heart catheterization; I had four new stents put in my heart. In just a year’s time, I went from having four blockages to seven, plus a failing artery. To prevent more blockage from forming, I receive a treatment every other Thursday called LDL apheresis at the Case Western University in Cleveland, Ohio.

The treatment is similar to dialysis. Two large needles are placed into my arms with IV tubing attached that connects to the apheresis machine. This is the worst part of the treatment process because it’s very painful. After the needles are in, I lay down as the machine takes blood out of a vein in my left arm, filters out the bad cholesterol particles, and then allows the blood to flow back into my body through a vein in the right arm. For most people, the procedure lasts about two hours. But my cholesterol is so high that I have to undergo the procedure for four hours. About 4,000 ML of my blood is filtered each time, which is a bit more than a gallon. The treatment lowers my cholesterol level to 100, but the benefit is only temporary. My cholesterol levels usually rise back up into the mid-400s after a few days.  After each treatment, I feel completely drained and weak, as if I just finished running a marathon.  I’m looking forward to the day when a new treatment for FH might be available to help lower my cholesterol and eliminate my hospital visits for LDL apheresis.

Like many people who suffer from a chronic illness, I have good days and bad days, but for the most part I try to stay optimistic and live a normal life.  I’m currently a junior in college studying nursing and I enjoy spending time with my family and friends. There was a time when I thought keeping up with my classes would be impossible because of my disease. But I’m hanging in there. I have to. After all, I’ve made it this far.

 

photo: ell-r-brown / flickr

Premium Membership, The Good Men Project

Comments

  1. I have the same disease, spent my 20′s with daily angina, while being told by assorted DRs & nurses that I looked too healthy and it had to be all in my head……cardiologist that denied test results that didn’t fit his expectations….nurse that told me I’d become a cardiac cripple if I didn’t man up. of 5 siblings one died at 30, I was told at 30 I was to far gone for any effective surgical intervention arteries were 90/100/90 at 30… experts were shocked I was alive… other 3 all have had multiple surgeries……Thankfully I have only daughters and girls are somewhat protected from the worst effects…..their #’s are low / mid 200′s compared to my 600′s.

    • By the way over the last 10 years Lipitor 80 / Niaspan 1500 / Zetia 10 .. managed to lower my #’s to the 150 – 170 range…. There are side effects at those drug dosage levels …. leg/muscle pain / terrible niacin flush…..I wake up feeling as if I was sprayed with light fluid and set on fire. / intestinal distress.

      • Niaspan is the only pill I really just hate taking. It causes sever flushing for me. Doctors didn’t explain to me the side effects when I was younger and I remember just screaming to my mom asking if my body was on fire. Very traumatic experience for me.

        • one hell of a med….I understand the why of using it…..just at times it seems like self abuse….especially when you get into one of those runs where you wake up itchy or burnning every night for weeks in a row. I’ve made it to 50 with the drugs….better than G’pa who kicked at 33. Thankfully my kids seem clear of the worst of it . one is normal and the other is in the 240-260 range

          • Up again most of the night itching and burning from that lovely niaspan……really nice stuff.
            Really like the fact that the best/effective drug combo tend to combine into a FDA “Black Box” warning…..otherwise known as this combo really might kill you.

  2. God Bless you Christian and thanks for talking about something so personal. Heart diease runs in my family. My grandfather, uncle and father all passed away from it. Unfortunely, they were all also very old school guys that didn’t take care of themselves like they should have on top of it. All three drank, ate and worked too much. We recently found out my older brother is having heart issues. He is a young and thought to be very fit guy. It was a shock even with the family history only because of how he takes care of himself. I know that there is a hospital in Houston that specializes in how genetics plays a role in heart disease. So we’ve been looking into a lot of hospitials so he can get the best care he can.

    All I can say is that for men that especially have genetics of heart diease running in your family, no matter how healthy you appear on the outside, you still need to get checked out. It could save your life. You just never know.

Speak Your Mind