I am 16 years old and standing in my family’s kitchen filling up a glass of water at the fridge. I am watching and listening to the small television on in the opposite corner. I notice that all of a sudden I don’t feel well. I am dizzy and my stomach feels a little upset. I put the glass of water down and decide to go upstairs to my room to lay down.
I reach the top of the stairs. My sister is in the bedroom at the top of the stairs watching television. The nausea is so bad I think I might be sick so I turn left into the bathroom. Two steps into the bathroom I feel weak and my mind starts to blur. I sit down on the side of the tub to let it pass. It doesn’t pass. I keep going deeper into the darkness and I feel something soft on my cheek. I have fallen off the bathtub onto the floor. I can’t move. I can’t speak. My eyes are shut so I see nothing. I can still hear what is going on around me. I hear the TV in the next room. I am sliding deeper and deeper into the darkness. I think to myself, “I think I am dying. I need to get help.” I desperately want to call out to my sister for help. I am sliding deeper. I can’t speak. Everything is going dark. My last sense – my hearing – is starting to dull and the white noises of my house are moving further away from me. Sliding deeper.
And then SNAP. My senses start coming back to me. First the muffled home noises become more clear. I feel the soft rug on my cheek. Before I can open my eyes I have tears streaming down my face. By the time I can move again, I am crying. Terrified. I had no idea what just happened but I knew it was bad.
I go down to the kitchen where I find my mom. She is surprised to see her 16 year old crying. I told her what happened and she is concerned. She tells me to lay down while she calls the doctor to find out what to do. He reassured her that a young, athletic girl probably just had low blood sugar and felt dizzy. She should call back if it happens again. It didn’t happen again for another 3 or 4 years so we never really talked about it again until my sister was hospitalized with ventricular tachycardia when I was 19 years old. It was probably genetic and my mother remembered what happened when I was 16. She insisted I see a cardiologist to be evaluated. This started my long journey to diagnosis which I won’t detail here.
I often think about the episode on the bathroom floor. It is not unusual for death to be the first symptom of ARVC. I do think I was dying on the floor. But my heart converted itself back to a normal rhythm on its own so I am still here today. I am in a Facebook group of people and their families who have this same disease. I can’t tell you how many people find the group after a young member of their family has passed away and autopsy confirms diagnosis. There are also many people who pass out in a crowd and someone finds a defibrillator and shocks them back to life.
I am thankful that I didn’t die on the floor that day. I am thankful to be able to experience this crazy, wonderful, difficult, and joyful life. But even more importantly I am thankful my family didn’t have to find me unresponsive on the bathroom floor. It probably would have been my younger sister who was 12 years old and just a few feet away from me when I died. I am thankful I had this flag so three years later I could start down the road to diagnosis. I also think it helps me put this transplant in perspective. I am lucky to be alive today. I will be equally lucky to be alive tomorrow with a new heart. It is all blessings that I cherish.
Heart Sick 