“You’ll need a transplant soon, your kidneys are failing. Based on the rate at which functioning is declining, I would say you have about three years to live.”
I had no reaction. I wasn’t upset, or mad, or scared. I had practically grown up in a hospital and wasn’t easily phased. I shook my head back and forth as I said “Nope, not having one. I’m exhausted.”
She continued, “Well then, you should travel, spend time with your friends and family. It looks like you only have one kidney working, and it is functioning at 40%. Once you reach 30%, a transplant is necessary. Do you understand?” I wanted to tell her that I didn’t have any money to travel and I didn’t have any friends either. Years of being sick and the resulting social isolation had rendered me dependent on my parents for everything.
There was no choice but to keep doing what I was doing and wait. But I was silent. Inside, I was almost relieved. I had been through so much in the past ten years. I could not bear the thought of yet another ten years of suffering. It would never end. My life had revolved around surgeries, procedures, and long hospital stays. I was done, thank you very much. At twenty-five, I had endured unimaginable pain, and fear and dread were my constant companions.
I stared at the doctor, unflinchingly. I was completely confident and determined in my decision. Nothing was going to change my mind. I named her ‘Dr.Death’. My humor had become dark and I had discovered unconventional ways of entertaining myself. I would give each doctor a nickname based on some characteristic or behavior, usually with a negative connotation.
I had also mastered the art of making constellations out of the tiny speckles on the squares of a ceiling. Big Dipper. Little Dipper. Years of lying on a hospital gurney taught me that. Sometimes, if I was going through something truly awful, I couldn’t focus on identifying any patterns. So I would simply count. I counted each tiny dot on the ceiling until it was over.
The highest I ever got to was 900 and something. But on this day, during my appointment with Dr.Death, I was completely focused and thinking clearly. The doctor reviewed some more test results, prescribed some more blood work and said that she would see me in a week. I was grateful that the visit was over and I could leave. I didn’t know what I would do, but I knew what I wouldn’t do. I would not have a transplant and I would not tell a soul what the doctor had just told me.
Patient Zero Three Years to Live Description:
Follow the true story of a 15-year-old, impoverished, illegal immigrant as she deals with a devastating disease known as Myasthenia Gravis. She grew up in Glasgow, Scotland, where she lived with her two brothers and parents. Disenchanted with failed attempts to make a living, her father moved the family to the United States, with hopes of finding work. Financial ruin, alcoholism and lack of legal status, forced the family to go back to Great Britain.
After selling everything they owned and purchasing plane tickets, Margaret becomes gravely ill, and the move is cancelled. A former gymnast, she quickly and suddenly loses the ability to speak, chew and swallow food, exercise, and ultimately, breathe. She suffers misdiagnoses, multiple hospitalizations, and unnecessary surgery, eventually landing in intensive care and on life support. She undergoes years of treatments, including total body irradiation therapy and chemotherapy.
Countless medications fail to alleviate her symptoms, and cause life-threatening side effects. At the same time, she manages to complete high school and go to college. After graduating with a Master’s degree, Margaret was accepted in to a doctoral program, along with her father. Knowing that she was physically weakened and mentally destroyed, her father gives up his job, and joins the doctoral program to support her.
While going to school, and still in her twenties, she receives a terminal diagnosis, and told that she has approximately three years to live. Promising never to tell a soul about her prognosis, Margaret continues onwards, as best she can. Find out how a radical approach to treatment changed her life forever, as well as the lives of thousands of people living with Myasthenia Gravis. A truly remarkable and inspirational story of survival and resilience.
