Aug 31
centeno008
centeno008 , Posted on SUPPORT NETWORK Blog

Why Me?

Everyday of my life has been different for me since the day i was born up to today. In the first four years of my childhood I had a total of four heart surgeries...FOUR! and to make matters worst three years ago I was diagnosed with Cardiac Arrythmia!. Let me tell you a little bit about myself. I am 19 years old, healthy body and great mind. Since i was little i could not do want non-cardiac kids could. I quickly learned i could play competetive golf but only nine holes, I could not run as far as my friends did because I would get tired, but I learned to dea with it. Nowadays I spend my time either studying or working. My diet includes not being able to consume cafeine and sugar sweets (I learned not to eat chocolate...). So yeah, this is me, if you have any questions or any comments feel free to ask and remember if you are reading this, that means you are still alive which is good. Have a nice day.
3 Comments
  • chadgoodyear222
    chadgoodyear222,
    I'm 28 and feel a lot of the same things. It is hard to have heart problems young because people understand less. They expect to see you acting 19 years old. Just know that you are more mature mentally than most 19 year olds. Use that to your advantage. People will see the responsibility you have developed from dealing with your challenges.
  • Kerstin - Community Manager
    Kerstin - Community Manager,
    It's a good day -- thanks for this reminder! And thank you for being willing to share your story with everyone!
  • 4guysmom
    4guysmom,
    Well I can certainly relate! My son (13) was diagnosed with Long QT Syndrome when he was 5. This causes sudden cardiac arrest. This means no sports or high physical activity. He also can not have caffeine, luckily he doesn't care much for sweets. He's not allowed to ride theme park rides, rough house play, do normal "boy" things. As he has gotten older, it has become more difficult. All of his friends are playing football, basketball, track. We are now 5 weeks away from his first, and hopefully only/last, open heart surgery. We are all very nervous, frightened, stressed. I do not discuss the specific details of his surgery in his presence. Since he was told he needed surgery, his mood/attitude has drastically changed. He looks very worried and afraid. I try talking to him to cheer him up, making jokes about the surgery, trying to make it seem casual. Do you have any suggestions as to how to ease his mind? He is nervous about being in ICU, what are the doctors going to do to him, will it hurt, etc. I feel if he knows the exact details, he will only be more stressed out and won't be able to concentrate at school. He's already showing signs of being distracted and unfocused.
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