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