Order the Rockin' Rehab Commemorative Tee-Shirt:
I had just celebrated being a “half lawyer”. This means I was half way done with my studies at Michigan State University Law School. This was the focus of my life, despite feeling sick. Playing the hero, I continued to go to classes despite being severely sick with a flare up of my ulcerative colitis (This is a chronic disease I will always have, unless I undergo a serious operation to remove my colon). When my mother, Naomi, called, she heard how tired and ill I was. My mom insisted on flying up to take care of me, but of course I said I was fine. My mother surprised me the next day by booking the next flight from my family home in Florida to Michigan. Had she not, doctors told my mom that I would have died in my bed the next night.
My mom arrived to find a daughter who was too busy throwing up in the bathroom to pick her up at the airport. I had lost a lot of weight, my face was ghostly white and I couldn’t keep food and medication down. My mother did something I continually refused to do, as it would be an admission to my illness…. she made me go to the ER. As I left my sick bed, my legs ached. I thought this was most likely from lying in bed. We arrived at the hospital and gradually, and then quickly, the pain in my legs worsened until the pain was so bad that the pain from the ulcerative colitis was nothing in comparison.
As the time passed, a small purple rash appeared on my leg. It rapidly spread up and down my entire leg and inside my bones. The hospital called in a team of doctors, who ran tests. Twelve hours after I arrived the doctors determined a flesh-eating bacteria (aka gangrene) was attacking my body. I was abruptly admitted, stretched out on the cold, metal examination table with tears running down my boney cheeks. I screamed to my mother, who was talking to a doctor outside the room that they were going to cut my leg off. I kept screaming to her, but felt I could not be heard. The last thing I remember was being frightened and hysterically screaming in that crowded room with a sea of doctors, in their flowing bacteria protective gowns sticking me with needles. They put me out and amputated my beautiful leg, and toes that were decked out in a freshly painted hot pink pedicure. Later, staring at the pink toe on my remaining leg, I would often lay in my hospital bed and wonder what happened to the missing leg.
So What happened? The medication for my ulcerative colitis had a side effect of stopping bone marrow production where white blood cells are produced. The ulcerative colitis flare-up combined with the affects of this medication brought my immune system down to nothing. The gates of my body’s protection opened for a flesh eating virus to enter my leg and spread through the inside of my bones (one of the reasons we would later learn made the bug so hard to detect), and poison my entire bloodstream (known as sepsis). I was malnourished and in addition, my colon was bleeding and infected. The doctors immediately amputated my leg from around three inches below my hip in order to rid my body of the flesh-eating virus. They pumped my body full of antibiotics in an effort to rid my bloodstream of the sepsis before it shut down my organs. After the surgery, the doctors told my mom that it was very unlikely I would survive through the night. If I survived each 4 hour period, she was to consider our family lucky. That night my mother cried alone in the waiting room. Meanwhile my sister and dad stayed up all night anxiously waiting to be with her the next day. A few days after making it through that first night, sepsis had successfully overtaken my heart and stopped it from beating. Luckily the doctors saved me against miraculous odds I had survived two surgeries in one week, and won another battle in the fight for my life.
I spent that next week in an induced coma and woke up with no leg and no memory of what had happened. All I remember from the coma, or post coma was vivid nightmares and hallucinations. These dreams were always a vivid fight about someone trying to kill me, and a struggle to stay alive. Later when my doctor told me he saw that I had a fighting spirit, I would think back to the horrible nightmares and wonder if that is what gave me the strength to live. Despite this, I didn’t remember much day to day. The doctors had to tell me over four times that my leg was amputated and how close to death I was. Four times I wept and screamed. Four times my family had to calm me down. Having no idea where I was, I attempted to escape. This meant pulling out my feeding tube three times, and several failed attempts at pulling out my respirator. I asked my own father who he was, and any chance I got, I asked for a pen and paper so I could write save me, because I couldn’t speak. I had to be restrained, but luckily this is something I don’t remember. I had no idea where I was, or what happened to me during this sad time period.
My friends and family sat by my side while I lay in my hospital bed recovering for a month in the intensive care unit. My parents never left the hospital room. Every night, my mother slept in a chair by my side. Whether it was those nights when the nurses would check my vitals and bring pills, or when I became violently ill and needed several blood transfusions, or just cried all night in pain and desperation, my mother would remain at my bedside, despite the lack of sleep. My mother remains with me now, almost three months later. My mother not only saved me by coming to Michigan when she did, but by being the strong and wonderful mother she is. My parents left their friends, jobs, house, and everything else in Florida behind to care for me.
Additionally, my Aunt and Uncle rushed to be by my side, as did my sister, Rachel. One of the positive results of such a horrible experience was becoming very close with Rachel. Despite her being in Boston, I feel as though she is with me all the time. Every friend that I felt was important in my life prior to my leg being amputated came through stronger than I could ever imagine. My Brandeis friends from college flew in from all over the country to visit. My MSU law school friends kept a vigil outside of my room when I was in a coma. They took over the conference room on the floor because there were too many of them to fit in the visiting room. They cooked supper for my family every night. By the end of my stay, my family and friends had created a garden of flowers and a zoo of stuffed animals. I knew I was loved.
Because of the amputation I had to attend rehab and have further surgery, one such surgery includes a skin graft. After my skin graft I was finally released from the hospital. I have to visit doctors’ offices and wound change clinic at an average of two doctors per day. My doctor ordered me to a month of bed rest. I was so excited to go home and finally sleep in my own bed! But sadly, my mother wanted me to sleep in an uncomfortable hospital bed (actually, worse than the real hospital!) in the living room since my bed was too high and would tear the skin grafts. My friends continued to visit, and my father replaced the nurse who delivered my nightly pills by sleeping on the couch across the living room.
As things now stand, I will be facing various surgeries for the next year of my life. The doctors scheduled surgery to remove my large colon in order to prevent a lifetime of continuous “flare-ups” and because my colon is in horrible condition. The removal required two separate major surgeries over the course of many months, and a long recovery time. After meeting with the doctor to discuss the surgery I burst out in tears to my mother. I had spent so much energy recovering from the loss of my right leg that I had swept my colon surgery completely under the rug. I became so depressed with my life. I felt as though I was a ratty creature who couldn’t bathe alone, who stayed indoors most the time, and who reminisced about the times when I could walk with two legs and feel beautiful. After weeks of ignoring the outside world I decided to see a psychologist for help. As of now I am still learning to live my life with just one leg and no large intestine. The surgery was excruciatingly painful and required and epidural as well as an IV drip of pain medicine. However, the worst part of this surgery is mental rather than physical. I had lived through the pain before with my leg, and I had learned to conquer all kinds of pain that the regular person hopefully never will. What I had not been mentally prepared for was the ileostomy bag. I realize many people live with this bag for the rest of their lives and my bag is only for two months, the idea of it is very hard to grasp. Additionally, looking down at my body, seeing my stomach bloated on one side with a bag full of excrement on the other; then seeing my legs where one is completely gone and the other is scared from the skin graft makes my burst out crying. Somehow this law surgery has put me over the edge.
Due to the extensive illnesses, I had to take a leave of absence from law school and focus only on getting better. Once my wound is fully healed, many obstacles remain …. I will have more rehab as I try various forms of prosthesis. Since the insurance considers prosthesis to be a cosmetic surgery, this may be an additional cost to endure.
I will be returning to Law School as soon as I am able. One day, maybe later than expected,I will become a lawyer.
One leg or two legs…. Who is counting? I am still Sara Phillips.
For further information about Sara’s story, please visit the "about" page and the Caringbridge Site