It was in the early hours of April 1st that we initially heard about Wilson’s Disease. The doctors explained the condition and its rarity. They said if left undiagnosed and untreated Wilson’s will result in a liver transplant. The doctors were fairly certain that I was suffering from end stage Wilson’s Disease and registered me on the national transplant list. My team of doctors assured us that once they confirmed that my ailment was Wilson’s, I would rise to the top of the list as a status one patient.

Many tests were done in search for this diagnosis. One test was done to analyze my urine, which was now as dark as coffee. The result was the first confirmation that I in fact did have Wilson’s Disease. On April 3, 2015 I was listed as status one. During my time in the ICU waiting for a lifesaving liver transplant, I underwent many procedures to prolong my life and keep me stable. One of which is called plasmapheresis. This was done by attaching two needles to the catheter tube that was inserted in my heart. Simply, my blood was being taken out of my body through one of the catheter tubes. It was then run through the apheresis machine. Once in the machine, my blood cells were separated from the plasma and the copper was stripped out by spinning the blood at high speeds. After, my blood cells were mixed with replacement plasma and the new mixed blood was then returned into my body through the other catheter tube. This procedure took two hours each time. My parents and I would sit and watch the large bag fill with another dark brown fluid that is supposed to be white. Beyond the plasmapheresis, I was also given medicine in hopes of eliminating the ammonia from my system before it started to negatively affect my brain. All of these were temporary treatments to extend my life.

Nearly one week after my original acute liver failure and diagnosis, on April 5, 2015 I received a lifesaving liver from a deceased donor. Today, in hindsight, I think about other symptoms I had throughout my childhood that could and should have pointed to Wilson’s Disease. I was tired and moody. I constantly wanted to chew on ice. The size of my legs was getting bigger each year even though I was an avid athlete. In fact, we even went so far to blame the enlargement on my years of soccer. We thought it must be muscle development from all the time I spent playing, but my legs had been filling with more fluid every year due to my failing liver. The larger missed symptom was when I was 16, two years prior to my liver failure. I had been suffering from extreme fatigue and could not chew enough ice. As a result, I had blood work done to rule out anemia. The bloodwork did not show signs of anemia but did show high liver enzymes! Tragically, this sign was misdiagnosed, and I was sent to an oncologist instead of a gastroenterologist. I was instead diagnosed with mononucleosis and my Wilson’s Disease continued to go undetected. My hope and purpose in sharing my story is to spread awareness about Wilson’s Disease. Through education, and stories like mine, there is a chance that someone who is suffering from Wilson’s will be diagnosed early enough to treat the condition efficiently and effectively before it can do great harm to anyone else.