“Is there something wrong with you?”

This is the second part in a blog series about Gabrielle Wanek, a twenty-three-year-old living with hypoplastic left heart syndrome. Catch up by reading the first post.

“Is there something wrong with you?”
“Pardon?”
“Is there something wrong with you? Your heart it’s beating like a jack rabbit. Is there something wrong with you?” I was sitting in a doctor's office in North Carolina trying to get some medicine for an illness. The question just caught me off guard.

It’s not that doctor’s fault. I know I need to remember that. It's a rare congenital heart defect but it’s happened so many times at this point it shouldn’t really bother me, but it always does. That little voice that is nagging in the back of your mind saying, oh, here we go again. It's been going on for years now; people asking if something is wrong with my heart. Doctors, nurses, friends, people who don’t know or don’t know better.  No, nothing is wrong with my heart. When I tell them that I have hypoplastic left heart syndrome they give me a confused look or they laugh thinking I’m making it up. No, it’s not fake, it is real. It’s a defect I was born with, I tell them, where the left ventricle of my heart is severely underdeveloped. Their look quickly changes to one of concern and I’ve seen that look too many times. Curiosity and concern, it’s not unwelcome.

“How were you able to get to this point, I mean where you are now?”
“Surgery and medicine.”

It’s enough of an explanation for them to be quiet about it and get on with what we were doing. It works for the most part. Some people understand that it’s a part of me and they accept that. Then there are others who have a million questions and most of the time you can’t exactly prepare for them. But you have to try to make them understand, try to make them aware of it all. Even if you can’t answer every question that they have, you try your best.

“Does it hurt?”
“Hurt?”
“Your heart. Does it hurt, like if you do too much does your heart start hurting?”
“Does your heart start hurting if you run a marathon?”
“Well, yeah.”
“It’s the same thing. My heart will start to hurt if I exhaust it.”
“Are there things you can’t do?”
“I can do anything as long as I do it in moderation.”
“You know that you’re the first person that I’ve ever heard of with this condition.”

That’s a comment that I’ve heard so many times and it always leaves a sour taste in my mouth. It’s hard for people to understand something they’ve never heard of before. So you sit there and watch as they try to figure it out. You can see the gears turning in their head as they process the information you have given them. It’s been this way for as long as I can remember through middle school and now into college. It’ll be like this for the rest of my life; me trying to explain something that I don’t even know all that much about.

“What causes it?” Heck if I know.

“How do you fix it?” Currently, there is no cure.

“Is there anything you can do about it?” Besides a heart transplant, so far there’s nothing.

“Is it permanent?” Well, that one always stumps me.

These questions are always asked. Perhaps not right away, but they are always there on the tip of someone’s tongue. I’ve grown up with this defect. I’ve been to so many doctors’ appointments that I have the buildings memorized. I’ve walked those halls and know the floors like the back of my hand. It’s ingrained into my brain now and it's something that I have come to expect. It’s not normal and I know that, but then again, there is no such thing as normal. It’s routine for me to take medicine every day. It’s common to take care of myself as best I can. It is normal for me to be aware of my sodium intake and the caffeine I drink. How do you live with that? How do you live with knowing a hospital sometimes better than your own home?

You learn. That’s how you survive, you learn to blossom in a difficult situation. You learn how to deal with a world that can’t answer your questions. You adapt to the possibility of not knowing the outcome or ever seeing a finish line. So you learn to live for the moment, you thrive on the thrill of day-to-day life. You take one step at a time and if you misstep, you better keep moving. The world isn’t going to slow down for you, so you better pick up the pace.

Come back next week to read more from Gabrielle as she tells her story of living with hypoplastic left heart syndrome.

The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email the program at HLHS@mayo.edu to learn more.