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My story begins at age 3 months when I was diagnosed with congenital cardiomyopathy. For most of my childhood I recall that the disease was controlled by medication, activity restrictions and yearly checkups. I was able to have a ‘normal’ childhood with the exception of being allowed to participate in competitive sports and various other extracurricular activities.
During one hospitalization, it was discovered that I had four clots surrounding my heart requiring I be placed on the drug Coumadin which is often difficult to control, can be dangerous and requires constant monitoring.
I remember once during an annual checkup my cardiologist made the comment that I would most likely need a transplant sometime in my 30s.At the time, this statement didn’t have much impact because my 30s seemed a lifetime away.
In the fall of 1999, I moved away to college and my heart condition gradually worsened. I was given a handicap sticker allowing me to park close to classes on campus (which sometimes isn’t all that close to the building you need). During this time I was experiencing an increasing number of visits to the emergency room and several hospitalizations.
Beginning in the fall of 2002 several things happened. I was re-diagnosed with a rare disorder known as noncompaction of the left ventricular myocardium. In utero the heart develops from a sponge like material into a muscle. However only one side of my heart turned into a muscle and the other side remained a spongy. Due to complications from this disorder, I underwent a cardiac mapping and ablation. In addition, it was determined I needed a cardiac defibrillator/pacemaker. During placement of the cardiac defibrillator/pacemaker, I suffered a cardiac arrest, was placed on life support and acute dialysis. Once I recovered from this outcome, I was informed I could not leave the hospital until I received a heart transplant. I remember feeling overwhelmed and not sure what to do with that information.
I was placed on the transplant list February 6, 2003 and received a heart transplant 21 days later. On March 15th, 2003 I was able to leave the hospital for the first time in 3 months. Since my heart transplant I have had no medical complications.
I returned to college in the fall of 2003 and finished the Bachelor’s degree that I had started. I then continued my education receiving my Masters Degree in 2008. I currently work full time providing behavioral therapy to children and adolescents. I enjoy reading and running. Last month I ran a total of 50 miles (something I could never consider with my previous condition) with a goal of running competitively this year.