Survivor Spotlight: Alissa Anne

I was 16 years old when my world was turned upside down.

I started experiencing excruciating headaches to the point where I had my mom take me to the ER (I am someone who toughs through any pain, so I knew something was wrong when I had to go the hospital).

After 18 hours of tests I got sent home with a clean bill of health.

Later that week I began experiencing terrible chest pains, which were so bad that I had to sit down in the hallways at school after walking only a few steps. I went to my pediatrician and was diagnosed with pneumonia and was sent home on some medication. A few days later, I woke up in the middle of the night in extraordinary pain and coughing up blood and ended back up in the ER. After a CT scan I was diagnosed with severe bilateral pulmonary embolisms; so bad that they warned my parents that I may not make it. After more imaging, multiple DVTs were found in my brain, internal jugular vein, arm, and leg. Genetic testing revealed that I was positive for Factor V Leiden, Prothrombin Gene Mutation, MTHFR, and lupus anticoagulant. I also have May Thurners Syndrome. I spent a week in a hospital and then was transferred to a Children’s Hospital for another 3 weeks. After leaving the hospital nothing was the same. I have been an athlete my entire life, and I could barely walk without getting short of breath. I had to watch what I ate because I was on Coumadin. I couldn’t go do “normal” things teenagers did because of the risk of bleeding. I no longer lived a carefree life that I saw everyone else around me living; however, slowly but surely I started to gain some normalcy to my life. While things improved, I continued to have severe chest pain from the clots in my lung and all the damage they had caused. Consultation after consultation, it became decided that having 2/3 of my left lung removed was the best course of action. The summer before my senior year in high school I underwent an excruciatingly painful surgery. Besides my lung collapsing a few times in the hospital, the surgery went well and I recovered quite quickly; 5 weeks after my surgery I was playing volleyball again. While everything that I went through at a young age did take a toll of my life in negative ways, I believe that it gave me back more than what it took from me. It allowed my family to be tested for genetic conditions so now they are aware or risks and symptoms of what comes along with blood clotting disorders. I have a much greater appreciation for life and all that it encompasses. Now I will be starting medical school in a month with the plan to pursue pediatric hematology, so I can hopefully make an impact on a child the way my hematologist saved my life. I am grateful to be healthy today and able to chase my dreams passionately, with not much holding me back anymore. I know that I am still at great risk for future episodes, but I live each day to the fullest and try to not let my condition hold me down.

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