Animal Lover. Avid Travel. Congenital Heart Disease patient with Shone’s Syndrome.

I had my first heart surgery at age 2 (coarctation of the aorta), fast forward 35 years and I start having breathing problems…am diagnosed with congestive heart failure – later diagnosed with Shone’s Syndrome and am off to Mayo in Rochester, MN for surgery.

Lucky me….my new motto “Life is Not Fair”

2 responses »

  1. Hi. I don’t know if you ever check back here but I just read your story. How are you doing? Do you plan to keep blogging here? I hope your tachIcardia is under control. My son who also has a Chd had an ICD implanted after his incident. I can’t believe you stayed conscience until you were out out for convertion. Man that is amazing! My son had his last surgery at NWM also. Previously he had his surgeries at Children’s Memorial.
    Well I found your journey very interesting and hope you are doing well. Keep writing.

    • Hi! Thnaks for the comment. I am doing very well. I do not plan to blog on this topic. I just wanted to share my story/experience in hopes of helping others who may be going through this. I know I am not the only person in the world going through this, but couldn’t find anyone to relate to at the time.

      My doc at NWM still comments on how amazing it is I remained conscious. I do have “control issues” – hahaa!

      I hope your son continues to stay well. My meds seem to be controlling the tachycardia very well so hopefully no ICD….but if I end up needing it, oh well.

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