post transplant realities

I had a liver transplant 20 years ago because my liver was destroyed by Primary Sclerosing Cholangitis.  At the time I had the transplant, I had young children who needed their mother, so I had a very strong incentive to survive.  In the hospital, post-transplant, I can vividly remember thinking, "I can't die . . . I have prom dresses to buy."

I also remember the medical personel telling me that my life was going to change drastically.  It would be more like "managed care" than living.  That has not been my experience.  The only constraints I have as a result of the transplant experience are that I have to remember to take my medications twice a day, and I have to go in to see the transplant docs once a year.  A pretty small price to pay for having extended my life for the past twenty years, I'd say.

Recently I went in for my annual checkin with the transplant docs and I was asked to fill out a survey before I went in.  When I looked at the survey, I was surprised to see that it was geared toward finding out how I felt about my life in general and how I felt about having had the surgery that saved my life.  The questions were all multiple choice.  An example might be "over the past 4 weeks I have felt I had no-one to turn to" with the answers ranging from "frequently" to "not at all."  I filled out the questionaire and then went in to see the doctor. 

He had good news to report - my bloodwork all looked good and the ultrasound they had done a month prior to this appointment showed that all the flows were good through my liver.  We talked briefly, and he checked the incision scar to look for any signs of hernia.  All was fine.  So afterward, I said, "I kind of gathered from the survey you had me fill out that not everyone does as well as I have emotionally or psychologically after transplant."  He sat back and seemed to choose his words carefully.  He said, "A lot of people have a tranplant because they don't want to die.  Than after the transplant, they find that the whole world is open to them . . . and they don't know what to do with themselves.  It's hard for some people to find that they have a lot of time ahead of themselves and no idea what they want to do with it."  I said, "My daughters were only 5 and 9 when I had this done."  He smiled at me and said, "You had a lot to do.  Was there ever a question in your mind about whether you wanted to go through with this?"

And there never was.  When they told me I needed a transplant, I immediately asked to be put on the list.  I never considered not doing this.  I had too much left to do, and I wanted the time it would require.

I've been "out" (that's what they call it after transplant) for 20 years now.  They don't have statistics to tell me what to expect anymore.  They could tell me that my heaviest chance of rejection was during the first year.  They could tell me that skin cancer is about a 50/50 propostion after 10-15 years.  But they can't tell me what to expect anymore.  I guess I'll help them tell the next person what to expect.