Kara was born with Hypoplastic Left Heart Syndrome (HLHS), a condition that significantly affects her daily life.
After 5 heart surgeries
The Reality of My Life
When someone first meets me they would never believe that I live with a very serious heart condition. My bright eyes, loving smile, and positive outlook of my life hide a very serious and painful condition. I am living with half a heart. I have Hypoplastic Left Heart Syndrome (HLHS). I have had 5 open heart surgeries. These surgeries have left me with cirrhosis of the liver, hypertension, and scoliosis, along with other mild issues.
Every morning I wake up at 6:50 a.m. Usually I haven’t slept well due to my back tensing up in the middle of the night. The first thing I do is go to the kitchen and drink a cold cup of water right away to wake myself up. I then splash cold water on my face to wake up the rest of my body.
Most of the time it is very challenging for me to pull myself out of bed. Why? Because I only have half a heart. My body craves more rest than the average person. Sometimes when I wake up, I feel as if I am pulling 50-pound weights on each leg, just to stand up. When this feeling is occurring I also feel physically weak, nauseous, dizzy, and I tend to forget very basic morning procedures. These are the days that I worry about not being able to make it to work or even find the strength to feed my cat, all because my heart is craving more rest. Some people tell me to sleep more or go to bed earlier. I would really love to, but I have to work long hours to support myself and I am also in school, so I need time to do homework.
My Work as a Teacher
What I do for a living is already not easy for the “normal” healthy, fit person. I work with very beautiful, unique children—and I love them all so very much. My job is the best thing that has ever happened to me, but sometimes I feel like I am failing the children. I am not as strong or energetic as many of the teachers, and I am often in physical pain throughout the day. I frequently sit down at work and move at a slower pace. I also tend to miss a lot of work due to doctor's appointments and surgeries, and when I catch the common cold it can land me in the hospital. Every time I call out sick I feel that I am just letting everyone down, and I used to think that maybe I should let someone else who is healthier take my position.
The Comments People Make
Every time I meet a new person they are always shocked to learn about my condition. I always get comments like….
- "Wow, you've had heart surgery? But you are too young!”
- “You don’t look sick.”
- “Medical marijuana can cure you.” (No, actually, it will make it worse.)
- “If you just allow Jesus Christ into your life and truly believe in him, give your life over to him, he will bless you, child. All of your pain will go away.” (Thanks, but that’s not how reality works.)
- “I think you are lying. No one can live with half a heart.”
- “Oh, it can’t be THAT bad. You get to sit out in P.E. class!” (This was a former school mate.)
- “You can’t have kids? [long pause] Not to sounds like a dick, but I don’t want to go on another date with you knowing this.” (Yup, this was a recent first date I went on. Just to let you know, I wasn’t even planning on a second date with him, and I was deeply happy that he was the one to cut it off.)
Comments like these are hurtful. I don’t listen to them, nor do I really care about what others think of me. However, they can and will hurt someone else. Someone who is young and impressionable.
Growing up, and even to this day, I have had authority figures undermine my illness, tell me to my face that I am faking everything, and that I see myself as a “princess” or that I refuse to try my best. They would say things like….
- “Move your MRI to a Saturday, please. We need you here, and you look fine.” (This was a former boss.)
- "What are you talking about you need time off for a surgery? Look how thin and healthy you are!” (A former co-worker.)
- “You decided to leave. You insisted that you had to have your surgery during the summer, and you were the one to leave.” (This was another former boss, who knew exactly why I was having surgery and that it was not my idea to have surgery. I tried to have surgery during the summer so it would not affect the school year.)
- “You are just acting like you are sick so you will get out of the mile run and other activities.” (This was a middle school P.E. teacher who told me this. Luckily a former teacher who just had heart surgery was nearby and heard what was going on.)
These are just a few things that have been said while I was either in school or working. Without these people I would never know how to stand up for myself, and fight for what is right. So I want to thank them for teaching me how to be assertive.
I Am Grateful for My Life
All of this sounds very bleak and depressing. Although I will never be “cured” or ever have the same amount of energy as my peers, I do want you to know that I am very happy with who I am and what I live with. I see the world differently than others do. I am able to enjoy my time and use it wisely. Finding empathy for others comes so naturally, because I know and understand struggle. When a relationship falls apart I know I have the strength to get up and try again, because nothing is as painful or scary as open heart surgery.
Remember that everyone is different. Just because someone looks happy and healthy does not always mean that is their true reality. Anyone who puts others down because of their differences is a waste of your time. Think twice before you speak. You never know what words can be harmful.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Alison rochford on January 10, 2017:
You sound like an amazing person. Thank you for sharing.
Duane Townsend from Detroit on December 19, 2016:
This was a very enlightening, thought provoking, read.
My best to you Kara Rae. May you know health and prosperity.
You sharing your story will help.