You can no longer run. Those were the only words I heard. It was June 2013 and I left the cardiologist office with those words ringing in my ears. I ended up there after an EKG showed irregularities and after months of diagnostic tests he told me that I had arrhythmogenic right ventricular dysplasia cardiomyopathy -- ARVD/C.
I left my doctor's office, got in my car and a mile later I pulled over and cried uncontrollably. What was this all about? What did I do wrong? I am not sick? I could stand to lose a few pounds but I've been held back by hypothyroidism! Maybe I did drink too much wine, but red wine is good for your heart, isn't it? Surely the doctor is mistaken.
In the past six years I finished seven marathons on three continents and was training for number number. I was well on my way to reaching my goal of completing a marathon on each continent. I was in the middle of planning to go to Thailand; it was going to be the Asian marathon. Why this? Why now? Why me?
Since I picked up long distance running in 2006 I declared that I was going to live healthy and run until I reached 100. Nothing was going to stop me -- or so I thought. Instead my heart was quietly betraying me.
The doctors are mistaken. No way have I had a heart disease. That's only for folks who are fat and eat bad food right? The doctors are testing my DNA for a mutation that causes ARVD/C. But no one in my family died from cardiac arrest. We have cancer if anything check my colon not my heart. But it is the reverse heart disease -- the one that kills healthy people.
I need to get an ICD? A defibrillator? Why do I need that? That is for old people. No way am I allowing you to put a machine inside of me.
Unfortunately the DNA test shows that I do have the genetic mutation. There was no denying it now. I have ARVD/C. Without further fuss I get the ICD. In fact I get a newer fancier kind called the S-ICD.
BOOM! BOOM! BOOM! I have been shocked three times. Was I supposed to die? How did I get here? I was healthy, I was vibrant, I was fearless. Now I am full of fear, confusion and anger.
There is no cure for ARVD/C. I can no longer exercise or do any of the things that brought me joy. Exercise causes the heart to turn good muscle into scar tissue. Over time this process can lead to heart failure. But they assure me that people with ARVD/C life long lives and die of other things. ARVD/C already killed me. It killed the life I loved to live. I am not going to let it kill me again.
Lisa Colon Heron
This is the first story of Lisa Colon Heron. Please look for more to follow her ongoing journey.