Birthdays are special events for me. To me, another birthday means that I've lived another year, and that is definitely special because I never thought I'd live this long. I celebrate two birthdays, March 5th is my birth day, and May 1 is my second chance day.
It's hard to talk about my organ transplant sometimes because the memories are so painful. But I think it's important for other people to know what it's like to be on the receiving end so that they can understand why it's so important to commit to being a donor at the end of their life. There are currently over 96,000 people listed on UNOS (www.unos.org) as waiting for an organ transplant. In March of 2000 I was one of those people.
My liver had been gradually getting worse since the summer of 1995. Still, I managed attend most of my college semesters full-time. In December of 1999 I finished my last full semester and was looking forward to the following semester with just one class left for my degree in Dietetics. I was already suffering the effects of severe liver disease; jaundice, swelling, exhaustion, etc. Then one night in January after I had brushed my teeth before going to bed, my gums started bleeding and wouldn't stop. I tried for several hours to stop the bleeding myself, even falling asleep for a little while, but when I started throwing up large amounts of blood that I had swallowed I knew that there was no way to avoid the inevitable. When Dad and I left the house in those early morning hours I had no idea that I wouldn't return for eight months.
I spent the next month at the local hospital where I knew most everyone on staff. On one hand I wished that they would release me so that I could go home and sleep in my own bed with my cat, but on the other hand I knew enough about what was going on that I was terrified that they actually would let me go. But I missed Remi terribly, he was my comfort amidst the pain, and he was alone with only an occasional visit from Dad and my neighbor who was feeding him and keeping an eye on him and the house.
My condition continued to get worse. My kidney's began to fail. One funny thing in all of this is that the night before they diagnosed me with kidney failure some of my friends "snuck" me out of the hospital in a "stolen" wheelchair to attend the Lynard Skynard/ ZZ Top concert. We had purchased the tickets months before, and I didn't want to miss what we all thought would be the last big fling of my life. I had so much fun even though I was in pain:) Do I have great friends or what? :)
Then just a couple of days after the concert, my doctor stuck his head in the door to my room and told my parents it was time to go. What?!! Go Where?!! He had arranged to have me flown to Omaha, Nebraska to be admitted to the one of only two hospitals in the country that could perform the type of transplant that I needed to survive.
The University of Nebraska Medical Center was definitely a culture shock to me and my parents. We came from a small hospital with a staff that we all knew, to a very large hospital where we knew no one. My immediate thought was that I just wanted to go home, but they wouldn't let me go because as one of my doctors later told me, they knew I would not live long enough to see my home again if they didn't make me stay, I wouldn't survive the trip.
I don't remember too much of the first few weeks at UNMC. I not only had severe liver disease and kidney failure, but now I had pneumocystic pneumonia. I do remember waking up sometime shortly after I had arrived, and I was laying flat on my belly with a ventilator tube stuck down my throat. I was in severe pain, and scared, and I cried because I wanted to go home so badly. My nurse tried her best to calm me, I still remember it all so vividly. But instead of calming down, I just got mad. And I stayed mad, and as a result I stayed alive through it all. I got mad at being sick, mad at the world, mad at God, and mad at myself. Within the anger I found strength.
My days at UNMC before the transplant were spent enduring endless tests, physical therapy, psychological therapy, numerous IV changes, dialysis, and doctor after doctor after doctor. I can definitely say that I wasn't ignored, in fact I was never alone. Oh, how I longed for some peace and some rest. Unfortunately, the only time I was given some peace was at night. Then came the endless nightmares. Liver disease causes some people to see things that aren't there, say and do things they wouldn't normally do. For me, it gave me horrid, vivid nightmares, so I began to hate the night and the peace that I longed for during the day. During the times when I was well enough, the night nurses would wrap me up in either a wheelchair or a gurney and Dad and I would roam the halls of the huge hospital until I was sufficiently exhausted. Those were fun little excursions:) Just me and Dad:)
The days eventually added into months, and I progressively got worse. Because of the knowledge afforded me by my education as a dietitian, I knew just enough to know exactly what was happening to me. I knew I was dying, and I could see my parents dying inside feeling helpless to save me. The liver disease had progressed to the point where my skin and eyes were not yellow from jaundice, but purple and brown. I never looked in a mirror to see my face because I didn't want to see the creature that I knew would be staring back at me. It was enough to see my purple hands that were swollen to the point that I could no longer flex my fingers. My skin was stretched to capacity with the 100 lbs. of extra fluid that I carried. I was no longer able to hold my head up, or even use the remote to turn the channel on the tv. Living had become exhausting. I was not far from death and I knew it, yet at the same time I wasn't willing to give up. I somehow knew that it would all get better.