In February of 2014 I was in and out of the doctors office and immediate care facilities with hives and extreme pain in my cervical lymph nodes. The hives would go away during the day and come back at night, but the pain in my neck was brutal. But as the trooper I am, I made sure I kept going to school, despite the pain. I had blood tests done because the doctors believed I had mono, or hand foot in mouth. I didn’t. I had seen my primary care doctor on March 13th 2014 and she gave me 2 shots of ceftriaxone in my hips. The next day I went for a CT scan and my mom had to essentially carry me to the car, for I was so weak, I struggled to keep my balance. I was not able to have the scan done, the nurse said that my vitals were completely out of the ordinary. She called and ambulance from there and I was rushed to the hospital with a fever of 104 degrees, barely conscious and unable to walk on my own, along with dehydration and malnutrition, hallucinating as well.
I was admitted to Strong Hospital on March 14th, 2014 and was there for 7 weeks. The first night I remember being poked and prodded by at least 6 different doctors, having a catheter placed, having IV’s placed, and hallucinating tigers in my room. Over the next few days I had 2 plural effusions, a collapsed lung, kidney and liver failure, along with coagulopathy, and a blood clot in my forearm. I was intubated and put on a paralytic, along with being put into a medically induced coma for 3 weeks. The doctors did a bone marrow and lymph node biopsy believing I had lupus, leukemia, or a blood disorder. I had none of these. A doctor from every specialty had come to see me in order to figure out what was wrong with me, and no one until Dr. Looney came along had an idea. Dr. Looney, the man who saved my life, is an allergist and immunologist and came up with the idea of DRESS and they put me on a round of prednisone and cellcept. I was diagnosed with DRESS Syndrome on April 8th 2014. The doctors now believe the culprit drug was Advil. I was extubated and put on prednisone, and cellcept to treat DRESS. I was then admitted to the rehab facility to learn how to walk and move again and regain mobility and function for the next 4 weeks.
I was eventually discharged on April 25th 2014. I had lost half of my freshman year of high school and was not allowed to go back to school until sophomore year. Today, I am an 18 year old, recent high school graduate and will be attending Alfred University in the fall with the intention of becoming a doctor. I am now, after 3 years of being on prednisone and cellcept, off them both completely, though I still see Dr. Looney for check ups. I didn’t walk away from this unscathed, I have 2 herniated discs in my back along with Complex regional pain syndrome, that the doctors believe may have been due to DRESS Syndrome. I also deal with the fear of this happening again, the thoughts and memories of this event. But I have learned to treat this experience like a survivor, not a victim. This is my story.
I am so beyond thankful and grateful for all the nurses and doctors for saving my life and for being so kind. They are the reason I want to go into medicine, and they are the type of doctor I want to become, to never discount my patient and to always look for zebras, not horses, when I hear hooves feet. This is not only to share my story but to help raise awareness of DRESS Syndrome, It’s a hell of a disease. To all those fighting, keep fighting, you can survive this. I know it’s hard and that the road ahead seems tough but I promise, it’s worth it.