My Adjusted LifeMy life “started” when I got into a car accident eleven years ago, when I was twenty-two. I fell asleep at the wheel and got into a head-on collision with a school bus. (That’s right…largest possible vehicle on the road, and I lived to tell the tale.) Thankfully, this all happened almost across the street from a hospital, so I got to an emergency room quickly. There were no real signs of anything serious on my body. In fact the police report read, “Most severe injury: bloody nose.”
When the cardiologist on call made it into the hospital, he let my parents know the truth of the situation…it was very bad. So far, he could see that I had severed my right coronary artery, ruptured my tricuspid valve and had a heart attack. But let’s not forget the little bit of blood trickling out of my nose, as noted by the police officer. He told them he was sending me to St. Francis Hospital (also known as “The Heart Center”) because they could not help me where I was. He warned them I might not make the transport, and hopped in the ambulance with me.
I was rushed to St. Francis where I had emergency open heart surgery. They put a ring in my tricuspid valve, bypassed my RCA and did some stitch work for tears they found between the chambers. They did not treat the bloody nose, for the record. Over eight hours later, they had repaired my poor heart. I should have died, they said. “You are a miracle,” I was told.
I woke up the next day a heart patient. For the first few years, it didn’t affect my life too much. But then, the arrhythmia started. Because of the scar tissue from the surgery and the heart attack, I began having ventricular tachycardia. Five years after the accident, I had my second heart related surgery: an ICD was implanted. Things continued to get worse and over the next year or so I would have five cardiac ablations and three pacemaker surgeries.
Once we thought we had the arrhythmia under control, my mitral valve started to act up. Turned out I had developed severe mitral valve regurgitation. In December of 2013 I went to Mayo Clinic for my second open heart surgery. They repaired my mitral valve and I made it home in time to spend Christmas with my family. Two months later, because of my complicated chest, the repair fell apart. In February of 2014 I was in an OR at Mount Sinai Hospital having my third open heart surgery. They replaced my mitral valve, and now, my heart ticks as it beats. After that, I had an ablation for your run-of-the-mill-post-open-heart-surgery-Afib, and started feeling great.
Then eventually, the bizarre and unpredictable combination of all my trauma induced heart diseases caught up with me. My heart failure symptoms got truly terrible and my doctor said to me, “Alicia…if you want to make it to forty, you have to stop working and relax. Write a book, change the world…but everything else? Stop.” Shortly after stopping work, I needed another two ablations and my fifth pacemaker surgery. Now, I live a greatly adjusted life from what I always thought it would be.
I always planned on being a mother. Now, I can’t. After the mechanical valve and the need for lifetime anti-coagulation, that’s not going to happen for me. How have I adjusted? I am an amazing Aunt. I let my nieces and nephews jump on my couch and eat treats before dinner. And they all love me extra special.
When I found out I couldn’t have children, I was excited to become a “career woman.” Then it all got too hard to keep up and I became an actual “sick person.” How have I adjusted? I remind myself that my health is more important than a job and that the freedom to choose where and when I spend my precious little energy is worth more than any job. I did as my cardiologist told me (I always follow my doctor’s advice, medical or otherwise!) and I just completed my book about my crazy journey and how I have managed to laugh and smile through even the toughest times…and I am more proud of that than I ever was a day at work.
I have adjusted to this life of being a way-too-young-for-it-all heart patient by taking control of the few things that are within my grasp. As I take my handfuls of medication, twice a day, I look up at myself in the mirror and see the control I have taken. I may not be able to control my heart health, but I can control my hair color…so it’s pink. I may not be able to control the scars scattered all over my body, but I can control the rest of my skin…so I have tattoos. I may not be able to control what my life has become, but I can control how I handle it…so I spend every day smiling despite it all and laughing in the face of it. I may not be able to control the loneliness that comes from living a life that no one who I am close with can understand, but I can control what I share…so I got everyone together for the Heart Walk and called us "Team School Bus." I make sure that everyone knows that I am happy in spite of my stupid heart, and because of it.