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.
Q: Can you tell us your name, age, occupation and the type of congenital heart defect you were born with.
My name is Vanessa McClure. I am 26 years old, and I was born with Transposition of the Great Arteries, with a Ventricular Septal Defect and Paten Ductus Arteriosus. I graduated from Claremont McKenna College in 2006, and am a licensed electrician with my own construction business. I also do special effects and stunt work in the film industry.
Q: How many surgeries have you had, if any, and what did they accomplish? How old were you when you had these surgeries?
Vanessa: In total, I have had seven surgeries, four of which have been heart-related. The first, the Senning Procedure, was in 1984 (4 months old) where a series of baffles were constructed in my heart to redirect blood-flow. This prevented the surgeons from having to detach and switch the two main arteries in my heart (a high-risk procedure at the time). At 18 months of age, I had a Paten Ductus to close my secondary PDA defect.
My last two surgeries were both in 1997 (age 13), both to band my leaky right pulmonary valve.
Q: What were your 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?
Vanessa: My parents are the most supportive parents anyone could ever ask for. They have been to every procedure, and every surgery. Even if that meant flying down to Los Angeles, or sleeping in the back of our suburban for three months (in San Francisco weather, no less). They are the reason I am the successful, healthy, well-adjusted woman that I am today.
As far as restriction goes (compared to my four siblings), they did not treat me differently. Sleepovers, climbing trees, playing outside, and joining sports teams were highly encouraged with all of the children in our household.
My mother and father taught me to be aware of my body, and to not ignore what it was telling me. In doing that, they trusted me to speak up whenever there was an issue or problem that needed to be addressed.
Other than that, they worry like all parents do, but in treating me the same, I grew up not feeling like I was different.
Q: How did your health issues affect your school life and your social life, as a kid and teen?
Vanessa: I truly believe that I was forced to mature very early because of my heart. This propelled me to take my schoolwork seriously, and to excel academically. I realized the trivializations of high school culture by the time I was in junior high. However, the flip side of this gift (I do honestly consider my heart a gift), is that this early maturity alienated me from most of my classmates. I didn’t have much in common with kids in my high school, and my teenage years were rather lonely because of it.
Q: How did your heart health affect the relationship with your siblings (if you have any)?
Vanessa: My siblings, like my parents, have never coddled me or treated me differently. They have always been very supportive, even coming to my surgeries when they could. But they were always great at treating me just like their other sisters.
Q: 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.)
Vanessa: I am a very active person, and try to keep up with my friends and co-workers. But I am aware that I do get tired easier on runs and hikes. I have just learned to adapt, and though I will go several miles, it is just an accepted part of my life that I will walk, as well as jog.
I am comfortable with the fact that I won’t be doing much travelling in third-world countries because of their lack of proper health services for someone like me. And yes, I will never climb Mount Everest, or be in any branch of the military.
However, I backpacked over 60 miles last year, I rock climb, surf, and race motorcycles too. I know that being so active and unrestrained, during my childhood especially, is the reason that I am the healthiest post-Senning TGA patient that any of my cardiologists have ever seen.
I concentrate on all the great, exciting, fun things I CAN and will do. Not the ones I can’t. And hey, I still do a heck of a lot more than most people with normal hearts with ever do. In fact, I’m going sky diving for my birthday (author note: she totally did).
Q: What was one of the most obnoxious questions you've been asked or assumptions you've faced in regards to your heart health? (i.e. "Did it hurt?")
Vanessa: I actually haven’t really had to deal with that. Sometimes people will look at my scar and say, “What happened there?...If it’s ok that I ask. I hope that’s not too personal or anything.” Or after I tell them about my heart they’ll go: “Are you ok?” Like I’m about to die as I stand in front of them, or something.
I’ve always been very open about my heart. I’ve never felt like I needed to hide my scars either, and tank tops are one of my favorite things to wear. Ironically, I usually forget that I have a heart problem until someone asks me about it.
Q: How is life with your health easier and more difficult as an adult than it was when you were a kid?
Vanessa: It is A LOT more difficult as an adult as far as health insurance goes. I currently pay $500 a month for it, and it’s just COBRA from my mom’s insurance that I was under as a minor. It expires next year. It is easier now that I am my own advocate, and don’t need a parent’s signature or authorization to get information or a procedure. However, with that freedom, being responsible for your own health comes with it; which as a heart patient, is something that must be taken very seriously.
Q: When facing serious health issues, how do you keep from stressing out or dwelling? Do you have a strong support system?
Vanessa: I have an EXTREMELY strong support system. Something I wish everyone was blessed with. Other than that, when a trying time or challenging incident comes my way, I just tell myself: “This is not the hardest thing I’ve ever done.” But, when I encounter those times when it is in fact going to be the hardest thing I’ve ever done, I get as educated as I can about it. For me, the times I am in the dark about the situation are the times that make me uneasy. It’s the unknown that bothers me. So I just ask a ton of questions, and get as many details as possible.
Q: To date, what has been the most frightening moment in regards to your health?
Vanessa: Last summer (2009), I was having irregular heat beats for about 3 months, and then again in December. What was concerning for me, was that at first, my doctors didn’t know what was causing it. And more importantly, how to fix it.
When they did determine what it was (supraventricular tachycardia), the procedure to repair it was not a guaranteed fix. In fact, I was told that they would do as many catherizations/ablations that were needed in order to correct the problem. I ended up needing two of them, and the procedures weren’t a big deal at all. I wasn’t even admitted overnight for them. But it was the unknown that was so trying. How many ablations would it take to fix it? When was I going to be able to be active again, and not feel terrible and tired all day long? What am I going to do about work? Questions like those were the things that kept me up at night.
Q: What was your attitude about your heart health like when you were a kid, and then as a teen?
Vanessa: As a kid, I was totally fine with having the heart that I do. When I had my pulmonary valve banding, my exercise tolerance took a pretty significant dive, and I was angry for a little while. I looked for answers as to why I was given my heart. Out of five children in my family, I was the most active, and I was the one with the heart problem. How fair is that?
I researched how common TGA was, and how someone might get it. I learned that sometimes, if a mother is sick while pregnant, a CHD can occur. My mother had flu-like symptoms and a fever when she was pregnant with me, so for a couple of weeks, I decided to blame her.
But, I moved on from my anger. I remembered that my life was headed in a great direction, the kind of person I was developing into, and how absolutely wonderful my family was. Especially compared to a lot of the other teenagers in our community.
Q: What are your hobbies and passions?
Vanessa: I know this sounds corny, but life is my passion. I have a life list of things I will do, and I am regularly checking goals off of that list. I will not be the person that says ‘wouldda, couldda, shouldda’ at the end of my life. I love trying new things, and I’ll try anything. I take risks, do a lot of hobbies that people deem ‘crazy’, and strive to not take anything for granted. Most people say that it’s because of my heart, and being aware of my own mortality from a young age, that I have this zest and drive to experience everything that I possible can.
Q: 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?
Vanessa: I think since I am pretty unrestricted, and the fact that I never cover up my scars, I’ve never had that issue. In fact, when I’m working out, or doing things with my friends, there are times when we’re pushing and motivating each other to do things, and when I say ‘ok, I need a break’, they go ‘why??’ I have to remind them I have a heart problem. It’s pretty funny. But the times I need to slow down or stop, especially on hikes, my friends and family are always really supportive of me stopping for a break, many times even encouraging me to take one before I need one.
Q: What has been the toughest part about living with heart health issues?
Vanessa: The fact that I will not be able to have children.
Q: To date, what are some of the most thrilling moments and accomplishments of your life?
Vanessa: My biggest accomplishments to date would be graduating college, getting my contractor's license, backpacking through Europe for a month by myself, and getting my racing license. Something I am very proud of is that I was the first one at an accident a few years ago. A guy had flipped his truck, and was unconscious stuck in it. I flagged someone down, told them to call 911 while I cut the guy out of his truck and dragged him to safety. I stayed with him until the ambulance got there.
The most thrilling moments of my life would be winning a sidecar race, bungee jumping, being on the red carpet of a movie premiere at the Cannes Film Festival, being in the middle of a lightening storm in rural Wyoming, and jumping off a 60-ft bridge into a river below.
Q: What is your personal advice to youngsters living with a congenital heart defect?
Vanessa: Don't feel breakable. Make the most out of the activities you can do, and stay as healthy as possible. Do this by listening to what your body tells you. I eat a very healthy diet too. No fried foods, lots of organic fruits and veggies, and not a lot of fat or salt. No sodas, no alcohol, tobacco, or other drugs. Exercise regularly.
I don't use my heart problem to define me. I'm a daughter and sister first, a friend second, a thrill-seeker third, etc....etc.....heart patient is way down the list. Don't use it as an excuse to let life pass you by.
If all I did was tell myself "Well, I'm a heart patient" I wouldn't be half as outgoing or healthy as I am.
Lastly, be knowledgeable. Learn everything you can about your heart problem. The more you know, the more you can help yourself, your doctors, and the more you will understand your body and what it's doing.
Thank you, Vanessa! Your advice is so valuable. I'm so lucky to know you! - Rachael