My CHD has affected my life in a couple of different ways. Mostly, having a congenital heart defect has limited my ability to participate in sports
and other strenuous activities. For me, that's been the most frustrating part. It's really hard for me to play sports like soccer and lacrosse. To make up for
this, I've gotten involved in activities like roller hockey and frisbee, where the running is minimal. But on a really hot day, I can't do anything--my body gets so fatigued I can't even leave my home. I've put up with these things and manage to work around them, but it can still be hard.
Participation in after school sports activities is mandatory at my school. For one week, we had to attend try-outs for a sport during the spring term. I have played baseball in Little League for many years, and this is one of the only sports that I am allowed to do, and that I can play well. I worked very hard during the tryouts for a week, only to find out that I did not make the team. I was upset because there were others who did not attend all of the try outs, and in my mind, were not as good as me. I began to wonder why the coach did not want me to play. I think he was afraid that something might happen to me during the games because I have CHD. I think this was unfair, and it would have been better if he had only talked to me about it, instead of just letting me work so hard for nothing.
Furthermore, why would a school require sports participation if they plan on cutting certain players and accepting others? I feel that I was discriminated against because I have a chronic health condition.
In addition to limiting the physical activities I can participate in, my CHD affects my life at school. Extracurricular activities are difficult because my body is worn out after a long day of
classes. Common illnesses like bronchitis or a cold usually mean a day out of school for others. For me, that can turn into two or three days, maybe more.
Sometimes I think my teachers don't understand that my CHD can affect my grades. I have trouble studying for tests or keeping up with homework when Im really fatigued. My mom usually talks to my teachers at the beginning of the year, explaining TOF and how it affects me. That way, they can get a better understanding of my situation and needs.
My friends are very supportive, and they understand my problems. Because I've grown up with the same group of friends all of my life, they've learned to deal with it over the years. Im pretty open with people about things, and I do not have a hard time talking about things. If I meet someone new and the person sees the scars from my surgeries, I just explain that I have TOF and have had surgeries to correct some of the problems with my heart. I don't make a big deal out of it.
I take a medication called Vasotec to help my heart work more efficiently. A side effect of the medication is that it makes my cheeks look
permanently red, like I'm blushing. It's not that big of a deal though, pretty much just an annoyance.
I don't know any kids with CHD, so I thought making a web page would be a great opportunity to talk to others. It's only been up and running since November 1996, so I haven't gotten a huge response. My page is growing, though, and I've already met a couple of people through it. I'm excited about that, and I hope it keeps growing.
It helps to know that there are people like me and that just about everything I go
through, other people are going through, too. Things usually aren't as bad as they seem. You have to work with what you have and be thankful for it. You are who you are. Your health problems are something that will always be a major part of your life and your ability to deal with it will grow along with you.
Because I was born with a health problem, I don't know what life would be like without
it. In some ways, that makes it easier for me to accept .It's just part of my life. Sometimes I wish that I could take part in the activities my friends participate
in, but over all, I'm pretty comfortable with who I am and what I can do. I don't think of my CHD as a handicap, or that it's awful that I have it. I do the only thing I can, which is find ways to work around it. So when stuff like getting cut from a sports team happens, I try to shrug it off and move on. I may not always like it, but that's the way life goes.
My CHD has taught me that as bad as I sometimes may think I have it, my problems could be a lot worse. I can live a basically normal life because I've learned to adapt. There will always be things about me that are a little different, but I wont let that change the quality of my life.
Excerpted from Young People and Chronic Illness:
True Stories, Help, and Hope by Kelly Huegel, (c)1998.
Used with permission from Free Spirit Publishing, Minneapolis, MN;
800-735-7323. ALL RIGHTS RESERVED
had his fourth surgery in November, 1999, and is currently doing very well. He
is a freshman at the University of Southern California, majoring in Music
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