MY VIEW: What I wish people knew about heart patients
Ainslee Harvey is a member of the War Whoop staff and a heart patient. She suffers from a congenital heart defect (Tetralogy of Fallot). She has undergone multiple surgeries since she was an infant. She is missing her senior year of in-person learning due to the pandemic. She was recently accepted into the University of Texas in Austin.
A common misconception about heart patients is that something caused our hearts to be malformed which isn’t true in most cases. My parents did everything right. My mom wouldn’t even get her nails done when she was pregnant because of fear of the chemicals, and she took all the vitamins recommended. Yet I still turned out this way. There was nothing to be done. I was just born this way despite all the rules they followed. Doctors have no idea what causes heart defects despite all the studies they conduct.
The morning I was born, I was immediately whisked away to the ICU. My mother wasn’t even able to hold me until later that night. They had me hooked up to a million machines that were keeping me alive. I wasn’t supposed to live more than six months, which is why I had my first open-heart surgery at four months old. From that, I caught an infection that was dispatched by keeping my chest open, stopping my heart, having a machine beat for me, having my blood flow out of my body via bypass, and scraping out the infection for a week.
Technically I can be considered a zombie since I’ve died and come back to life. This also applies because I’ve had my second and third open-heart surgeries where they stop my heart and then got it beating again, so, yes, I’ve technically been considered dead. Don’t ask me what the afterlife looks like because I don’t know.
Another misconception is that being a heart patient isn’t a big deal. While some cases may be minor, people like me who have major cases know that it drastically affects a majority of what we do. I’ve danced since I was three years old and I have to work twice as hard as everyone else because not only do I have a deformed heart, I have only one fully functioning lung. There are times when I am so exhausted that I’m barely able to function or process what’s going on around me. There are chest pains that are so excruciating that I assume at that moment that I’m dying, and I try to remember what the last thing I said to my loved ones was. Thinking I’m going to die is a pretty common occurrence as it is for most heart patients. My heart on a really great day is a normal person’s heart on a really awful day.
Being a heart patient affects the way we live our daily lives and the way we plan for the future. I’m currently applying to college because not only is it a great college, but also because my cardiologist is in that city, and it’s better that I’m near him in case of an emergency. We do things like this because we’re always at risk of dying, even if we’ve just had open-heart surgery. I know this because not only have I experienced it but also because I’ve lost a multitude of friends who were heart patients, too.
Two of the biggest assumptions people tend to have about heart patients is that all of our cases are alike, and that we can be fixed. Every heart patient’s case is different–every single one. The fixing part I only wish was true. There is no fixing us; we can only be repaired over and over. We will be heart patients until we die. We will continue having doctors’ appointments, medicine, pain–so much pain, surgeries, and our condition will persist until we die. None of what I just listed is fun by the way, not even a little bit.
I recently had my third open-heart surgery which was the hardest and scariest thing I’ve ever experienced. I was in extreme heart failure and could feel it. I could feel myself dying, which was not an experience I would recommend. I wasn’t eating because I was so stressed about having my chest sliced open. I wasn’t sleeping because when you’re scared, you’re not going to wake up, you don’t tend to fall asleep much, and if I did fall asleep, I had nightmares because I was so terrified. I ate a meal that could have been the last thing I ever tasted. It was cupcakes because I have the biggest sweet tooth ever, and if it was going to be my last meal, then it was absolutely going to be dessert. I chose a book specifically so that if I didn’t make it through, at least I was reading something good beforehand. I told my loved ones goodbye without actually saying it because we had to believe I would see them again. The doctors played my favorite music as they rolled me back, and I listened to the beat as if it was going to be the last thing I was ever going to hear.
People assume that once they stitch you up that the hard part is over. They are drastically mistaken. The pain of recovery is agonizing. I couldn’t move, everything hurt, including my pride. It was to the point where I was in so much pain and so dejected that I was wishing we hadn’t done the surgery to begin with. They also don’t know that the nightmares, fear, anger, anxiety, flashbacks, and all those fun things don’t stop either. They don’t know that it still hurts, that eight months later I’m still recovering. They don’t know that having your skin sliced and chest cracked open is a violation that’s hard to put into words. They don’t know that you don’t recognize your own body anymore, that you watch yourself move, but it doesn’t connect that it’s you. There is so much they don’t know.
One of the last misconceptions people have is that having heart defects define who we are. While having heart defects is a major part of who we are and affects a lot, we’re still our own people. Yes, I am a heart patient, but I am also Ainslee. I love books, shopping, dancing, puzzles, music, podcasts, decaf coffee, make up, swimming, rainy days, and a million other things. I love my best friend and my family fiercely. I adore my dog and loud music. I am a gigantic nerd and those books do come in handy while I’m waiting in a doctor’s office. I want to travel and see the world. I decorate every free space of my room with my interests and what I feel is a good representation of my personality.
Some people can’t handle the heart defects that are a part of me, and that’s okay. But that’s just it, they are a part of me, and they have shaped me, but they do not define me. They have made me a fighter. They have made me use humor when I should probably be crying. They have made me strong. They have made me realize that yes, the world is hard and will try to break you, but that I am not easily broken and that I will resist with everything I am. Not all the things they’ve made me are necessarily good, but that’s okay because, hey, I am human after all. There are so many misconceptions that people have about heart patients, and if I had a few more years I could try and correct them, but for now, this will have to do.
