Kristin Sterk - Living with A Disease That Has No Cure
I am a wife, mom, author, and speaker. Thanks to a simple sports physical when I was a teenager, my doctor discovered a rare congenital heart defect, that should’ve taken my life. Now as an advanced heart patient, I have learned to embrace living with a disease that I will battle the rest of my life.
At 17, I thought I had my future all figured out. I had always dreamed of playing college basketball, and at 6’1”, I knew I had a chance. Though in 2001, while at a routine sport’s physical the summer before my junior year of high school, my doctor heard a faint heart murmur. After seeing a specialist, the cardiologist discovered that I not only had a murmur, but a rare congenital heart defect called ALCAPA (anomalous left coronary from the pulmonary artery). After all those years of playing basketball, running sprints, and doing drills, it was a miracle I was still alive. After an open-heart surgery a little over a month later, I successfully had my coronary artery connected to my aorta. That would be just the beginning of my journey with heart disease.
Due to the damage done to my heart after 17 years of it not being “plumbed” correctly, I eventually developed a leaky mitral valve. Though in 2014, after another routine heart appointment, I learned the leaky valve was only mildly leaking, where before, it was on the brink of needing to be repaired. So, my husband and I had our daughter a year later, in 2015. She is now 4 years old! After I gave birth, I went through severe heart failure and never fully recovered. In 2017, I had an open-heart surgery to fix the leaky valve, but a week and a half later, the valve repair blew. I became very sick, was airlifted back to the hospital, and needed yet another open-heart surgery to replace the valve, 17 days after the previous open-heart surgery. Even after back-to-back open-heart surgeries, the damage has been irreparable and I have now been classified as an advanced heart failure patient. I recently had a subcutaneous ICD implanted, due to my low ejection fraction and my significant number of premature ventricular contractions. Ablations and medications are not proving to help, as I am nearing the possibility of a heart transplant.
At 35, I never imagined living with a disease that I know I will never fully recover from. Heart issues will always be a part of my life. As a mom, what I struggle with most is helping my 4-year-old understand what is happening to me. It is difficult balancing taking care of myself and others while having heart failure. But I have found that being real and open with my daughter, that as a family, we can fight this disease together. What is most helpful is when I have a hospital stay, to talk about it with my daughter openly, but also allow her to share her emotions and frustrations about it too. She carries with her a lot of anxiety about mommy leaving and often presents some very real emotions. So if she comes and visits, we try to show her what certain things do, like a blood pressure cuff or the heart monitor. Pretending to play hospital, also makes her feel more in control when my heart failure comes on strong. Most of all, what has been most valuable is ensuring she has a strong support network at home, while I am gone. Heart failure and heart disease not only affect the patient but the family and loved ones surrounding them as well.