William's Pre-Transplant Experience
William is a 70-year-old recipient of a deceased donor liver. Below, William shares what he went through while waiting for his transplant.
I first started having symptoms of liver disease in 1994. I was sick to my stomach and feeling weak. My doctor asked me to get a colonoscopy to make sure everything was all right. But when I was in the hospital for the colonoscopy, the doctors saw that my blood platelets were low. This led to more tests, including a liver biopsy. That’s when I found out that I had cirrhosis of the liver.
I went to see my local gastroenterologist who did a complete liver workup on me. I learned that I had autoimmune hepatitis. My own immune system was attacking my liver, causing cirrhosis and inflammation. My doctor tried to treat me with medication, including prednisone. But I slowly got worse. So, my local doctor suggested that I go see the heptatologists at the University of Chicago.
I took all my hospital records and all my blood test records to the U of C. The hepatologist gave me a thorough exam and blood tests. That’s when I learned that I would eventually need a liver transplant. I didn’t need a transplant immediately. The autoimmune hepatitis was progressing slowly, and I was still doing fairly well. Sometimes I had trouble with diarrhea, and I was losing weight and felt tired. But I could still do most everything I wanted to do. I’m a pilot, and I was still able to fly at that time.
It was somewhat of a shock learning that I needed a transplant. But I figure that you get something and the only thing you can do is to try and get it fixed. You just come to the reality that if it’s necessary, it’s necessary. There’s nothing you can change. Everybody stands the chance of having some type of health problem, whether it’s a heart attack or bad liver function.
So, the staff at the U of C put me on the transplant list. But I was pretty far down on the list because I didn’t need a transplant immediately. We went along that way for about 1½ years. I tried to keep myself healthy. I tried to eat good food and kept exercising.
But my liver disease slowly progressed and progressed, and I kept getting more and more tired. I developed some esophageal varices, or varicose veins in my esophagus. The varices broke, and I had bleeding from that. I had to go to emergency room at my local hospital. The doctors ended up having to go down my throat about eight times to seal up or fix the broken veins.
About this time, I was given a pager to wear so that the pre-transplant coordinator from the University of Chicago Medicine could contact me when a liver became available. There were a few false alarms. One day, I walked into the drugstore, and the pager went off when I went through the security system. So, I thought "Oh boy, here I go." But when I called the hospital, they told me they hadn’t paged me.
But the call finally came. It happened on December 4, 1996 at 2:57 a.m. I’ll never forget it. The phone rang, and my pre-transplant nurse specialist said "Come on down. We have a liver for you." All in all, I ended up waiting about two years for my transplant.
It has now been seven years since I had my liver transplant. I just had some tests, and my liver is still functioning well. I’m getting older. I’ll be 70 in July of next year. But I’m still flying. I flew yesterday for about four hours.
To people who are waiting for a liver transplant, I would suggest they continue their normal life as much as possible. I’d also recommend eating well and exercising. The day before my transplant, I went to the local mall and walked two miles. It wasn’t something I really wanted to do. But I thought it was necessary to keep my strength up as much as possible. I was pretty weak at that point. I would sleep a lot, then exercise, then sleep, then exercise, and so on.