My story began in 1980 when I was 8 years old. I developed a rash that my mom thought was poison ivy…turned out it was Lupus. Sitting in the dermatologists office feeling confused and lost watching my mom cry, all these questions flooded my mind, first and foremost was “Am I going to die??” I didn’t ask because in my gut I knew I would fight with every ounce of my being to survive. Since it was 1980 no one really knew anything about lupus and researching on the net was out of the question so I was left to be the “kid with lupus”. If only people knew what I was going through and could understand…
Life went on and the years passed. At the age of 16 I began to swell and sleep a lot. I missed most of my sophomore year of high school because I was so sick. I went from doctor to doctor and was told at this point that I have RA and mixed connective tissue disease. I didn’t care what I had. I just wanted the doctor to fix it and make me feel better.
Years later after getting married and having two kids (age 25), Lupus reared its ugly head again. This time I was in so much pain I could barely function. My kids were 3 and 7 at the time and I honestly didn’t have time to get sick again!! I went to my family doctor who knew nothing of Lupus (I am guessing here due to my experience). I was swollen and hurting and she told me that it was “all in my head” and sent me home with anti-depressants!! I knew that there was something wrong, after all its MY body!! Long story short, I went to the ER and was finally diagnosed with Autoimmune Hepatitis (due to Lupus). I was placed on the UNO’s transplant list where I waited 3 years for a new liver.
On Feb. 17, 2001 I got a new liver and then my world crashed. It started with a grand mal seizure, then my lung collapsed, I developed a brain bleed, and I also have neuropathy due to the chemo and plasmapheresis (consists of removal of blood, separation of blood cells from plasma, and return of these blood cells to the body’s circulation, diluted with fresh plasma or a substitute).
After 3 months in ICU, physical therapy, being on oxygen, and losing my hair to chemo, I left the hospital to live life with my new liver. Might I add that this doesn’t happen often during a transplant, in fact the doctors said that it would only happen to 1 in 500 million so if you need a transplant please don’t let me scare you. So thats my survival story. I did it and I am still fighting like a girl!!
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.