This is my series of interviews with adults and teens living with cardiac issues – mostly congenital heart defects. You are invited to learn more about the individual behind the obnoxiously long Latin medical term and perhaps you will decide to reach out – to an organization that benefits those of us living with CHD, to an individual you were previously too shy to talk with, to a community now that you realize you are not alone, or perhaps to me if you are someone living with CHD and would like to be interviewed.
Question: Can you tell us your name, age, occupation and the type of congenital heart defect you were born with.
Kate: I'm Kate. I'm seventeen and I'm a cashier at a crappy Chinese restaurant. I'm also a senior in high school and I hope that I'll end up being a writer, lawyer, or some other productive member of society. I was born with Aortic Stenosis.
Question: How many surgeries have you had, if any, and what did they accomplish? How old were you when you had these surgeries?
Kate: I've had...4 surgeries. I think. I'm pretty sure I've had four. I'm having another next summer. My first surgery was when I was 3 days old, my second was when I was three months old, and then I had another when I was three. I had a minor surgery somewhere in there...I'm not sure how old I was. My first surgery was my valve replacement. My aortic valve was replaced with my pulmonary valve and then I had donor pulmonary valve put in to the original pulmonary position. In doctor terms I had the "Ross Procedure." I've stuck it out and had that same valve since I was three days old. Any surgeries I've had since then have merely been to repair my donor valve because it's stretching pretty thin. My next surgery is when I get my new valve. I'm planning on naming my new valve something witty. I'll get back to you on the name.
Question: What were your parents like when you were younger living with CHD versus their current attitude? Were/are they overprotective; did they restrict you in any way?
Kate: I've always been treated like a normal child. My parents let me run, play, and do sports. I was a bold child so I think that even if my parents had been strict, I wouldn't have listened to them. I probably would've done my own thing. My only restrictions now are that I can't smoke pot or get a tattoo but I'm pretty sure that'd be the same if I didn't have a heart problem.
Question: How did your health issues affect your school life and your social life, as a kid and teen?
Kate: I always thought my scar was something to brag about. I would make up crazy to stories to tell the other kids on the playground. I'd say things like "I got attacked by a shark," "I got attacked by a pirate," and my personal favorite "That's where my twin was." Like every child I had it implanted in my mind that I was a miracle child. I was God's gift to mankind. As a teenager no one really says anything about my scar. People do the awkward avert their eyes thing when I'm at the beach or they don't notice. When people do stare I like to pretend that they're staring at my super fabulous body. Haha. I'm kidding. Erm. I used my heart problem as an excuse to get out of p.e. and sit down while the other kids were running and being active. I didn't really need to sit out. I'm just lazy.
Question: How did your heart health affect the relationship with your siblings (if you have any)?
Kate: I have two older brothers who grew up with me. My half sister is from my dad's second marriage and she's eight years younger than I am so she hasn't really experienced any of my health problems. My older brother Andrew always saw my heart as a reason to take care of me. Andrew tried to protect me from the world and he was my everything. With joint custody, my one constant was Andrew. He always made sure I was okay and still treats me like an infant to this day. Alex is the middle child of our family. He is protective of me but shows it in a completely different way. He doesn't treat me like a fragile doll like Andrew does. But he's protective enough to never let anyone else treat me like he does. I'm still the baby.
Question: Has your health limited you in ways you cannot control/alter?
Kate: I can do anything, regardless of my heart. I'm pretty physically active and I'm honestly too stubborn to let my heart hinder me in any way. I've climbed mountains, swam long distances, you name it.
Question: What has been the most annoying aspect of having a CHD?
Kate: There isn't really an annoying part of CHD. I'm okay and I've never been hindered by it.
Question: You were able to attend a camp designed specifically for kids living with cardiac problems. How has this camp helped and influenced you?
Kate: This camp has taught me to be thankful. I'm not on medications and I don't have health restrictions like many of the kids do. I'm fine and I like that. Camp is so fun. It's given me the chance to have the stereotypical summer camp experience that every kid dreams of.
Question: When facing serious health issues, how do you keep from stressing out or dwelling? Do you have a strong support system?
Kate: My family is always there for me when it comes to my health. My dad goes to every check up with me and I can remember my mom camping by my bedside when I was in the hospital. I know that when I have my next heart surgery I'll be perfectly okay because not only do I have an awesome doctor, but I have an incredible family as well.
Question: To date, what has been the most frightening moment in regards to your health?
Kate: My scariest health moment wasn't a near-death experience. It was when I was four and I was in the hospital. I woke up for anethesia to find myself alone in the hospital room. The nurse had apparently had a long day because when I asked her where my parents were she said my dad was getting coffee and my mom was at Mcdonald's. As a child of vegetarians who don't drink coffee (in fact they hate it) I knew she was lying and called her on it. She simply adjusted my drugs so I passed back out. Now my mom says that she left my side after having been there for days while I was too doped out to know that she was there. Apparently my dad was on Kate duty and he had run somewhere to get food. Regardless, thinking I was all alone was extremely scary at the time.
Question: What are your hobbies and passions? What kind of future do you want for yourself?
Kate: I love to write. I love it. Writing makes me feel like I'm centered. I have a blog that I basically obsess over and cram all my thoughts into it. I love feelings young and going on adventures. I love seeing new things. I guess I'm passionate about living. How cliche. The kind of future I want for myself isn't some cookie-cutter life. I want to be happy but I don't need to be married, wealthy, or regularly employed to feel this way. I want to lead a fluid life where I can do things that make me happy and move on when they don't anymore. I want to see the world when I'm older and I hope I find a career that allows me to do that. I want kids but...I don't need to be married to have them. Everything will work itself out. My future looks pretty bright.
Question: How has living with CHD affected your view on life?
Kate: CHD has made me feel like I can handle anything. I know I can battle through whatever challenges face me. I get that life is short and you need to focus on what makes you happy. I guess CHD has taught me that all the stupid cliches on bumper stickers and dentist's office posters are true. Or most of them at least.
Question: Do you consider yourself "different" from your peers due to your experiences living with a congenital heart defect?
Kate: I feel more enlightened than my peers. I'm over the trivial high school experiences and I get the bigger picture. Having been close to death allows me to look to the future and see just how much I have to live for. I know that I'm going to be okay because after having CHD, I know I can handle the harsher side of life.
Kate and I have been acquainted since she was all but thirteen years old and I was her camp counselor. She recently graduated camp and I am looking forward to her progression into the role of counselor so that we can then volunteer side by side! xoxo, Kate! Thanks for sharing your story.