My name is Elizabeth McCord, and I am a 32-year-old adult with congenital heart disease. I was born with a bicuspid aortic valve with aortic stenosis. The aortic valve is the “door” between the heart and the aorta artery, and the aorta artery is the main artery in the body. Where most people have an aortic heart valve with 3 cusps, mine only had two. This leads to narrowing (stenosis) and/or leakage (regurgitation/insufficiency) of the valve and can cause heart failure, arrhythmias and death. A bicuspid aortic valve is often associated with aortic aneurysms and coarctation of the aorta artery.
For as long as I can remember, I have been a heart patient. I was monitored closely by pediatric cardiologists, with routine appointments and tests as an infant and child. My first procedure came at the age of 7 with a balloon valvuloplasty. A balloon valvuloplasty is a procedure where a balloon is inflated inside the valve in order to widen the narrowing. I had another valvuloplasty at age 9, and I had my first open heart surgery to have my aortic valve replaced the spring before I turned 10. There were minor complications during my first surgery, ultimately leading to another open-heart surgery at the age of 14. I recovered well, and my life was pretty uneventful from then until 2015.
In September of 2015, at the age of 30, I developed endocarditis. This is an infection of the heart tissue valve, and is a known complication of replaced heart valves. Somehow, I had gotten an infection in my blood stream that attacked my replaced aortic valve and caused an abscess to form. The valve was destroyed, and I was deathly ill. I was flown by helicopter from Mercy Hospital in Rogers to Barnes Jewish Hospital in St. Louis, where they had cardiologist and cardiothoracic surgeons who specialized in adults with congenital heart disease. A few days later, I underwent major open-heart surgery to replace the aortic valve and reconstruct a lot of my heart tissue. It was my third open-heart valve replacement surgery, this time with a mechanical valve. It was a long recovery process that included IV antibiotics, medications, cardiac rehab, multiple appointments, and a lot of rest. I had to miss 10 weeks of work while I recovered. I did eventually recover, though, and I currently am healthier than I have ever been.
While the above sounds scary, I really do feel like I have led a normal life. I was very involved in sports growing up. I played basketball, volleyball, softball and soccer. I was the captain of our high school soccer team. I was in concert and marching band and worked summers as a lifeguard at the local pool. I ran track and cross-country. I went to church camp in the summer and took yearly vacations with my family. I had yearly cardiology appointments and more echocardiograms (heart ultrasounds) than I can count, but I didn’t have to take any long-term medications. I had no diet restrictions. My only limitation was that I couldn’t do pushups, which didn’t hurt my feelings any.
Because of my heart infection and mechanical valve replacement, I will be on a blood thinner, baby aspirin, and antibiotics for life. I do have residual issues in my left leg as a result of a septic embolism from the abscess in my heart. This means that before my surgery to have the abscess removed, a part of it broke off and went down my leg. While the infection and clot has cleared, I still have some impaired flow to my foot that causes numbness, and sometimes pain, but only after running 2 or 3 miles. I am extremely fortunate that the septic embolic went down to my leg instead of up to my brain! About a year after my surgery, I passed out while driving. I had to have an implantable heart monitor placed to monitor my heart rhythm. I still get more echocardiograms than I can count, see my infection disease doctor yearly, and see my local cardiologist regularly. Also, I now see a cardiologist who specializes in adults with congenital heart disease yearly.
I have always had great experiences, both as a child and an adult, with congenital heart disease. That might sound weird, but I always enjoyed the doctors, nurses and surgeons that I got to meet. My first heart surgeon, Dr. Ronald Elkins, was wonderful, and always very kind to me. When I was a sophomore in college, he called me because he was planning to retire and wanted to check on me. I remember one nurse getting us tickets to go see “Casper” at the movie theatre. The Arkansas Children’s Hospital always had a fun, child-friendly environment with a lot of toys. I always ended up with new gifts and toys, much to the annoyance of my brother and sister. These experiences fostered a huge interest in health care, and I knew pretty early on that I would work in the health care field. In 2008, I graduated from college with a Bachelor of Science in Nursing. I worked for 4 years as an RN before I finished my Master of Nursing and became a nurse practitioner. Interestingly enough, I have found my niche in healthcare as a nurse practitioner in cardiology. I love that I can empathize with my patients. I even did cardiac rehab with some of them after my illness and surgery two years ago!
As an adult, I have run multiple half marathons, duathlons and triathlons. Most of these were done after my surgery in 2015. Staying active and healthy is very important to me, and I really strive to be a good example of health to my patients.
Having congenital heart disease hasn’t always been a walk in the park, however, and comes with its fair share of burdens. There are always medical bills. And the scars… goodness gracious, the scars. There will be doctors, appointments and medications for the rest of my life. I will never go skiing because I’m on a blood thinner. Almost dying at age 30 is a traumatic experience that I wouldn’t wish on my worst enemy. I can’t run more than 6 miles without having to stop and walk because my foot is numb, painful, or cramping. I won’t ever get pregnant or give birth to my own babies because pregnancy is very high risk with mechanical heart valves and blood thinners. I caused my parents and family a lot of undue stress. I passed out while driving on the interstate with my 4-year-old niece in the backseat. I have a heart monitor implanted in my breast tissue. I am constantly aware of my mechanical valve’s click.
Seems like a lot, right? Let’s switch gears and talk about the mountain (literally, mountain!) of good that I have experienced as a result of having congenital heart disease. The scars are a constant reminder of how good my God has been to me. Let’s face it, they’re also good an excellent conversation piece. The mechanical valve click is now a part of my life that I barely even notice. Maybe I didn’t get to go skiing, but I did get to go sledding and snow shoeing, and I probably saved a ton of money by not going skiing. I can’t run more than 5 or 6 miles before I have to stop and walk because my foot hurts, but I know plenty of people who can’t even run 1 mile. Every time I run, I am reminded of how extremely blessed I am to be able to do so. The medical bills are a nuisance, but they remind me what a blessing health insurance is. Even the appointments once a year in St. Louis give me the opportunity to take time off work and travel a little!
The day I passed out while driving with my niece in the back seat was truly a horrible day for me. Thankfully, neither one of us was injured (nor was anybody else). My little niece loved seeing the fire trucks and sitting in the ambulance. She reminds me regularly that I am not supposed to fall asleep while driving! I am high risk for pregnancy due to my heart history and blood thinners, but I know that God will open doors for me to foster and/or adopt children in the future. I did almost die two years ago, but now I am healthy and so very thankful that God let me live. I have been a source of stress to my family and friends, but the amount of support, love, and prayers that I received from my family, friends and coworkers is truly amazing. My family truly is wonderful and full of love. All seven of them were there in St. Louis with me the whole week I was hospitalized. I like to think that my illness brought us even closer together. Not a day went by during my recovery that I didn’t receive a card, a visit, gifts, flowers, food, or prayers. Friends and coworkers took care of my dogs while I was in the hospital. Coworkers took them for walks when I was too weak to do so. My friends cleaned and prepared my house for my homecoming with food, magazines, mums, and movies.
Everybody in life faces trials, whether they are mental, emotional, or physical. My burden of congenital heart disease has been tough, but I wouldn’t have it any other way. If I had been born with a normal heart, I am positive that I would not have grown up to be a cardiac nurse practitioner. My love for healthcare and nursing started with my experiences as a patient as a child. Without those experiences, I would not have fostered such an interest in how the body works. I surely love being a nurse practitioner, and I love that my profession provides me with opportunities to help and educate other people. My profession has led me to a wonderful career at Mercy, which has blessed me beyond measure. I have met so many wonderful people at Mercy, many of whom have become part of my most meaningful friendships. If I had been born with a normal heart, then I would not have learned how to be tough, and how to take the good with the bad. If I had been born with a normal heart, then I wouldn’t appreciate my friends, family and coworkers as much as I do now.
While having congenital heart disease does largely impact my life, it does not define it. My trials have taught me to appreciate and love life, and count my blessings daily. I understand the importance of having faith and a relationship with God, and there’s no doubt in my mind that God has me in His hands. He puts trials in all of our lives in order to guide us… we just have to be open to His guidance.