Christian Jacobs is CardioSmart
Born with homozygous familial hypercholesterolemia, Christian Jacobs has managed to beat the odds. Christian uses his experience to inspire others as an FH Foundation Advocate.
Born with homozygous familial hypercholesterolemia, Christian Jacobs has managed to beat the odds.
As an FH Foundation Advocate, Christian travels the world raising awareness about homozygous familial hypercholesterolemia.
I try to live by the saying "Attitude is the difference between an ordeal and an adventure."
Christian Jacobs: Coronary Artery Disease patient
What is your CardioSmart story?
My journey to being diagnosed with heart disease started almost 20 years ago. I was diagnosed with a rare disease called Homozygous Familial Hypercholesterolemia, which is extremely high cholesterol. After noticing orange spots on my hands, my doctor decided to do a blood test and found that my total cholesterol was over 950! Soon after, I was ushered to Children’s Hospital of Philadelphia and then the National Institutes of Health (NIH). I started on multiple medications and was enrolled in a clinical trial by age 4.
As the years went by, I got used to taking multiple medications and traveling far distances to keep up with doctor appointments. I made it through two milestones—turning 13 and 18—as my parents were told I wouldn’t make it to these ages. After graduating from high school, I thought I had my whole life planned out. I was going to study aviation and march in The Ohio State University marching band. After a stress test and a cardiac angiogram in the summer of 2011, it was discovered that I had four blockages, of more than 75%, in my heart.
When I broke the news to my mom, it sent her into a tailspin of fear. This was a point in my life when I had no idea how to move forward. I had to cancel my plans to study aviation as the FAA suspended my pilot’s license. I was told I could no longer do any strenuous activities—like carry drums—so the marching band was out of the picture. I made a decision that this disease wasn’t going to beat me; I was going to beat it.
I found a support group on Facebook and two weeks later I was on a plane headed to Boston to meet some of them. I knew I needed to connect with people like me so I wouldn’t feel so alone. We went to Harvard and had the chance to share our stories, and it was then that we formed the FH Foundation, a patient-centered nonprofit organization dedicated to education, advocacy, and research of FH. I made it my mission to raise awareness about this condition. From Boston to California to England– I was sharing my story all over the world.
At the same time, I started on LDL apheresis every week at a hospital two hours away. After a year of treatment, it was concluded that stents would need to be placed as the blockages were getting worse. In 2012, I had four stents placed in my heart. In 2013, I struggled with completing my associate’s degree while traveling two hours each way every two weeks for a four-hour treatment. After doing that for two years, and missing some procedures due to the distance, it was found I had another 95% blockage.
I had a fifth stent placed in Feb. 2014 and a sixth stent in June 2015. My insurance company has spent over $2.5 million for my treatments. That number grows by about $500,000 each year. I have taken more than 100,000 pills, had a thousand blood draws, more than 100 LDL apheresis treatments, 60 shots in my stomach, nine heart catheterizations, and six stents. The best part is– I’m still here today! I’ve surpassed every benchmark in which I was told I would not make and plan to surpass many more. It’s still hard to believe that I am a 24-year-old with heart disease.
How do you work with your doctors and care team to stay on top of your heart condition?
My doctor is very proactive when it comes to my health. We both work together to stay on top of the latest research and therapies available, which is very important. On top of the usual checkup to determine that no more catheterizations or stents are needed, I meet several times a month with other members of my care team to plan out my health path. My doctor and I have even teamed up to help educate other people about heart disease and healthy living.
What lifestyle changes did you make to improve your heart health?
After having my stents placed, I started going to cardiac rehabilitation. This program opened my eyes to how I could and should be living my life differently to help prevent future cardiac events. I learned better eating habits to support my heart health. I also learned different exercises to get the most benefit in building my heart muscle. I never realized how much there was to learn regarding heart health until I was enrolled in a cardiac rehab program.
What challenges do you face? How are you able to overcome them?
One of my biggest difficulties is helping people understand that I have heart disease. When I share my story, people often say, "You don’t look sick” or “You’re too young to have heart problems.” Heart disease can strike at any age. My goal is to help educate people and dispel these misconceptions. I want people to realize that heart disease does not discriminate and there is no age that is too young.
Who is your support system?
My mother has been my greatest support. She’s been with me at every stage of this journey. She has taken time away from work to come with me to all of my medical appointments. She was by my side every time I was wheeled into the cardiac catheterization lab – although admittedly, I’m the one who’s usually trying to calm her down! It wouldn’t matter if I was 1,000 miles away, my mom would figure out a way to be by my side. She’s my rock and I don’t know what I would do without her on this journey.
Do you have a personal motto? What inspires you?
I try to live by the saying "Attitude is the difference between an ordeal and an adventure." We all face different challenges in life; it’s how we choose to face each and every challenge that will determine what outcome you get. No matter how grim, having a positive attitude really goes a long way. And let’s be honest, who doesn’t like an adventure?
Christian's Favorite CardioSmart Resources