A Broken Heart? – Living With Heart Disease

As many of you may know, I’m a very thankful heart disease survivor. I have lived with heart disease all of my life, since my condition is congenital, meaning I was born with it. One of my first treatment procedures was a Cardiac Catherization through my groin/femoral vein area to enable the doctors to administer medication and take cardiovascular measurements; I was about 2 months old. This was then followed by open-heart surgery, specifically a Fontan Procedure, when I was about 2 years old. I have been on medication all of my life – Digoxin – and have some limitations, most of which I have come to accept. I’m on an annual check-up schedule which involves electrocardiograms, cardiac stress tests, holter monitoring and echocardiograms. I had a huge scare in April 1999 and was rushed to the ER and later UCLA for a couple of days to undergo specialized testing but thankfully did not need to undergo another surgery. All in all, I am very lucky, very blessed! I share my story & my scars proudly! This is something I have come to terms with and it makes me who I am. I know I went through a lot, and so did my family, especially my parents. Watching the movie John Q was a very emotional moment for me; I was watching it with my parents one night and they were telling me stories of everything we went through when I was younger, and the fact that they could relate to the parents in the movie; I was crying throughout the entire movie! 

Knowing what I have endured and knowing that it could have been a lot worse makes me very thankful to God and appreciative of this beautiful life I have been blessed with. 

I recently met a family with a 10-year old boy named Johnny. He, too, was born with heart disease. His story differs from mine in that he’s already undergone 5 surgeries, the last one being in 2009. I met him soon after that and the scars across his little chest were so new. I showed him my scars and told him he would heal, grow and be able to live a near-normal life just as I have. This little boy smiled from ear-to-ear. I have shared my story many times, but that time was different. It was special. It was gratifying. I gave him hope. I helped him smile! And now here we are, 2 years later, and little Johnny is facing the possibility of yet another surgery, which will make it 6 surgeries by the age of 10. It breaks my heart! My family and I went to see him & his family last night, we talked to them, tried to comfort them and we ended with a beautiful prayer for healing & protection. Seeing little Johnny scared, nervous, sad… and his parents the same way, just touched my heart so much and took over my emotions. I know what he’s going through, but only to a certain degree. I was too young to know what was going on. I don’t remember any of it. I don’t remember being scared. I don’t remember understanding. Here he is, 10 years old, knowing what it all means. Knowing what it involves. He understands the reality of it. Scared. Nervous. Sad. Crying. And all of that makes it even harder on his parents. They know he’s scared. They know he’s sad. 

Seeing this family last night and sharing with them just made me realize once again how truly blessed I am. Yes, I live with heart disease since birth. Yes, I have had open-heart surgery. Yes, I’m on medication. Yes, I have limitations. But I wasn’t scared. I wasn’t nervous. I wasn’t sad… I didn’t understand; I didn’t know. All-in-all, I AM BLESSED & THANKFUL!! 

And once again, talking to him & relating to him to some degree was just so powerful. You should never be ashamed of sharing your story. You may be the one person that makes a difference for someone else. 

XOXO


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