My story, hopefully in full by method of several parts... lol
My name is Joe, and this is my transplant story:
I was diagnosed at the age of 32 with what was thought to be chronic active hepatitis, but after a few wrong diagnosis's and a once botched biopsy the successful biopsy showed advanced cirrhosis. The diagnosis was finally pinned down to auto immune hepatitis, and treatment began. My primary physician had studied at Mayo in Rochester MN, and felt he could treat me, but that I would be better suited to go where the experts are. was on a program of prednisone and imuran with the hopes that that would put the hepatitis in remission. This was all started when I had my first appointment at Mayo Clinic, with Dr William Tremain. For those of you who are familiar with the story Johnny Appleseed, that true life character was Johnny Tremain, and yes I asked, and yes he is a distant relative... All was going well, my number, were going down, my weight was going up thanks to high doses of prednisone, until one day in August of 1992. My doctor had referred me to an gastroenterologist at Mayo a Dr Rakala. He sat my wife and myself down in a conference room just for these conversations, and said he was going to refer my case to the transplant team. I looked him straight faced and said "ok"... he turned to my wife and said "that shows he's in denial".... I, having a very quick wit and sense of humor quipped "no doc, denial is a river in Egypt!" he again said that I was in denial, my wife with her face in her hands said "no doctor... he has a warped sense of humor". I was placed on the transplant list, given a pager, and had to go home, get things to take with me for an elongated stay in Rochester. Emblazoned in my memory... is my then 4 1/2 year old son running down the sidewalk trying to keep up with my car as I drove to Rochester, 6 hours away. I cried for 4 1/2 hours leaving him, and my 6 year old son at home with my wife Meg. Once I crossed over the Mississippi, coming from the Chicagoland area, I cried less, and built my will to survive. My first few days I stayed in a convent on the north side of Rochester, because no lodging for Mayo patients was available. I was able to stay with family in Wisconsin only 2.5 hour drive from the clinic, and each Tuesday and Friday I drove to the clinic for my blood work etc pre transplant. (I was able to move into the Gift of Life house, which then (1992) was the convent and a house, after transplant).
I waited in rural Wisconsin for 2 1/2 months, which now would seem like a very short time, but in 1992, the average wait for a liver was 4-6 weeks. I was in an area that television had but 3 channels the tv could pick up, so I immersed myself in reading, and keeping a daily journal. Each day I would record the date, time, weather conditions, and the mood I was in. My stay in Wisconsin was uneventful, and quiet. Often times it was too quiet, and since I carried a pager (cell phones were not available then) I was able to get out and walk, or drive the 30 minutes to the closest town to pick up necessities. Once a month for a day and a half, my family drove the 4 hours up to see me. It was the most joyous, and painful time of my wait. My two sons loved seeing me, as did my wife, but when Sunday came around, and they had to leave, I went into a deep slump. Of course I would journal these feelings and put them aside for a time when I was better able to work through them. 
I had always been positive. I knew I was dying right before my friends and family, but always kept a positive outlook. I would go up for my bloodwork and any other tests they asked for, and always would visit with others at the Gift of Life Transplant House, and made a few friends who I kept in touch with regularly. I kept their spirits up, and in return, felt I had been given a purpose to fulfill by being there for them. In truth, I was alone, fighting this life threatening battle all on my own. My wife and children stayed in Illinois to give the boys some sort of a normal family life. It was draining on all of us.
As I said I wrote daily in my journal. It had become my sounding board. One day I realized that I had not addressed the possibility of not surviving, and needed to leave them something to explain how I fought this battle with my head held high, and never let it get me down for more than a small time. That passage, titled “Joe’s Creed To Life” was what would later become the biggest thing I had ever done as a writer.
Fast forward for a moment to about 5 years post transplant for a moment… I finally allowed my wife to read my journal, and I pointed out that I had written this piece. I had never written anything before in my life, and was quite nervous about this. She read it, and exclaimed “YOU NEED TO SHARE THIS!!” I wasn’t ready to, but she convinced me.