My Diagnosis Story

Looking at my story, it starts before I can remember. I was born on December 19th a perfect little Christmas gift. But not for too long, two weeks after being born my parents noticed something was not right with my breathing. They brought me to the emergency room right away. This is when they found out that I had dilated cardiomyopathy.

They didn't think I would make it

As they rushed me to the pediatric intensive care unit, hooking her perfect newborn up to all sorts of IVs, machines and tubes my condition did not improve. She had to hear doctors say they did not think her baby would not make it. Doctors told them to start thinking about if they would want to take me off supports because the time for that choice was getting close. But they held onto hope and things started to turn around. I lived heart failure-free until I was about 6 ½. This is when my parents’ memories start to turn into my personal memories.

After meeting my doctor, I finally felt safe

I was going into heart failure again and too sick for the pediatric hospital I was currently in. I would need to go to NYC to meet with at that time, one of the few pediatric transplant programs. You would think at 6 ½ years old most of this would go over my head, but I can still remember it all like it was yesterday. I can remember waiting in the doctor’s office. This is when Dr. Linda Addonizio and the best APRN Rose walked in. They might not have known I was going to be okay at that moment, but I did. I can remember meeting them and feeling safe. She told me she was going to admit me to the hospital and get me better again. Most children would hate this idea, but I can remember how safe I felt in that moment. For the next year and a half, I would do stints in the hospital getting my heart to last as long as it could before needing a transplant.

Thank you to my transplant donor

The time had come I was put on the transplant list, 2 weeks had passed, and I was getting sicker every day. It was June 27th, 2003 when I woke up to the best news, today was the day I would get my new heart. I can remember lying on that operating table, I can see the OR when I close my eyes. I can remember being so scared and hoping this was not it, that I would wake up with a new heart as they put that anesthesia mask on my face. Lucky for me I woke up, I have been endlessly blessed in the life I have lived since that day. It has not been an easy life to live. In college, I faced a rejection that set me back for some time but thankfully rebounded to be the picture of health once again. All I can say is thank you to my donor and her family if it was not for them, I would not get to live the beautiful life that I have.

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