I am beginning a new 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. Don't be shy, we're all in this together.
Question: Can you tell us your name, age, occupation and the type of congenital heart defect you were born with.
ANSWER: Daria Stancikas. 17. Full time student. My defect is Corrected L-Transposition with Pulmonary Stenosis. (meaning: ventricles backwards, and closing off of the pulmonary artery) I also had a VSD at birth but with my heart CATH at three years of age we found that the VSD had closed small enough on its own.
Question: How many surgeries have you had, if any, and what did they accomplish? How old were you when you had these surgeries?
ANSWER: I have been asymptomatic since birth. I've been lucky enough to get this far without any surgery's.
Question: What were you parents like when you were a kid living with CHD versus their current attitude? Were/are they overprotective; did they restrict you in any way?
ANSWER: My parents kept me very unsocial and protected my first three years of life so I could stay healthy and not get sick. But now there more free.
Question: How did your health issues affect your school life and your social life, as a kid and teen?
ANSWER: I was always embarrassed when I would have to wear a 24hour Holter monitor, but I have been really blessed and not limited in activities.
Question: Has your health limited you in ways you cannot control/alter? (ex: not being able to go for a particular occupation in life, travel extensively, climb a mountain, etc.)
ANSWER: No, this is where I'm super blessed and have no limitations. My parents and doctor call me a "walking miracle"
Question: What was one of the most obnoxious questions you've been asked or assumptions you've faced in regards to your heart health?
ANSWER: I always get asked "Are things harder for you?" and "Does that mean your going to die sooner?" and sometimes after explaining the whole thing people say that it is cool. haha
Question: How is life with your health easier and more difficult as an adult than it was when you were a kid?
ANSWER: Actually, when I was younger it was easier for me because I wasn't as alert to what is going on in my heart. Now its more difficult because I understand how scary and real it really is now.
Question: When facing serious health issues, how do you keep from stressing out or dwelling? Do you have a strong support system?
ANSWER: Sometimes if I'm really sick I get worried about how it could effect me, but for the most part My system is well and I usually fight off a cough or cold or flu whenever it comes around.
Question: To date, what has been the most frightening moment in regards to your health?
ANSWER: My most frightening moment was when my doctor was talking about surgery and was almost ready to do it. Thankfully they didn't do the surgery. Also, I remember very little of my last heart catheter, because I was 8, but what I do remember was definitely scary.
Question: What was your attitude about your heart health like when you were a kid, and then as a teen?
ANSWER: When I was a kid, my attitude was really no big deal. Like I didn't care that I had this defect. Now that I'm older and understand, I do feel scared at times and worry. Sometimes in sports I feel like maybe if I didn't have this defect I could be better. But God has a purpose for me and wanted me to have this defect, and of everyone in my family, I'm glad I got landed with it instead of one of them.
Question: What are your hobbies and passions?
ANSWER: I love being with friends and going where ever we want. (beach, movies, sleepovers) I also play water polo and swim.
Question: Having heart issues is what is known as an "invisible disability" Have you had any instances when people just didn't get it and gave you attitude because they couldn't "see" your heart issues?
ANSWER: Not really, Sometimes people think its a joke when I say it. But after explaining the whole thing and showing my Medic Alert bracelet they believe me.
Question: What has been the toughest part about living with heart health issues?
ANSWER: The hardest part for me is just when I think about the future and how this will effect me later, will I need a surgery? Will I not live as long of a life now? Just stuff like that; that worries me.
Question: Many people do not realize there is humor even in the oddest of moments. I know I tell stories that are funny to me but kind of horrifying to anyone who has never known a single person with health issues. Do you have any funny CHD/health moments you can share?
ANSWER: Although i don't remember this, my mom says when I went into one of my heart catheter's at age 3, I was telling everyone "knock knock jokes". Also when I was younger and had my regular heart check up my mom told me the EKG was stickers because the leads stick to you & the electrocardiogram was called "the lollipop on my chest" because it was sticky gel they used to move the transducer.
Question: You have been one of the fortunate heart kids who have grown up with friends who also share the CHD commonality. How has these friendships helped you, and what makes them different (if at all) from your friendships with people w/out CHD?
ANSWER: I met Megan my second year at CDC (Camp del Corazon) and we have been friends for 6 years now. we always try to find time to hangout and I feel like she understands me and I understand here since we both have heart problems. I love knowing that I'm not the only one who has to deal with this. It's different talking to her about it other then my friends without CHD because they get confused when I tell them what I have and it feels like they don't understand it as much as someone with a heart problem would.
Thank you, Dar, for sharing your story with us!
If you would like to share your story or nominate someone to be interviewed for a Heart to Heart, please do not hesitate to contact me.
Background: I first met Dar when she was a fourteen year old camper at Camp del Corazon, a non-profit I volunteer with. Dar and her group of friends quickly became "my" kids, a group I look forward to seeing each year. Daria graduated camp last summer and I am eagerly anticipating her return in a few years - only this time as a counselor!
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