Primary Sclerosing Cholangitis and Autoimmune Hepatitis
When I was in high school, I started to get very bad stomach aches, I thought I was getting ulcers from the stress of high school. As I began my freshman year of college, they continued to get worse. I finally went to the doctor. They started with general blood work, since my liver panel was a little high so they had me take blood work for a few months. I was then sent to a gastroenterologist to take over my care. From there we had several tests. After a colonoscopy and a liver biopsy, it was determined that I had Primary Sclerosing Cholangitis(PSC) and Ulcerative Colitis. From there I was told that there is no cure for PSC and a transplant would be in my future. They gave me drugs to take for my Colitis. That summer we made a trip to the Mayo to get a second opinion. The doctors agreed with everything mine were doing.
In the winter of 2003 my doctors decided that there was nothing more they could do for me and sent me to the Transplant Center at the University of MN. To get an appointment I had to fill out an application. When I was accepted I went to the Transplant Center for an evaluation Day. You have several tests and meet your team. They then decide if it is time for them to list you and take your care. On April 20, 2004 I became an active member of the transplant waiting list at the U of MN. That meant that every six months I would see the doctor and every three months I would have labs done. I would have several tests over the next few years including; Colonoscopy’s, ERCP’s, MRCP’s, and Biopsy’s.
In January of 2006 my liver panel numbers started to rise. They tried to do an MRI let liver biopsy but my liver was to cirrhotic. They were looking for cancer. In April I went to Vegas with some of our friends. While there I went from Jaundice to orange and felt very fatigued and just yucky. When we returned I call the Transplant clinic and they had me do a blood test. My numbers were so high they asked me if I was standing…Needless to say I made a trip to the ER and was admitted into the hospital. The doctor called me a lovely butternut squash color, I loved him. I developed a second liver disease call Auto-Immune Hepatitis. It is another auto-immune disorder. I was given a large dose of prednisone to take to try to get it under control.
Two weeks later I received a call that they had a liver for me. Actually, I received several calls. I didn’t recognize the name on the caller ID so I didn’t answer and they didn’t leave a message at first. But then They called my work, my mom, and my sister. When I was talking to the doctor I tried to convince him that I was getting better. Finally, they had my transplant coordinator call me and she said it’s your time, come in and get your liver. At the hospital we were roomed and were told that it would be a very long wait, the liver is one of the last organs harvested. Finally, the time came for us to go. They walked my family down to pro=op with me and then took the rest to the waiting room after we said good-bye. Ralph and Jean waited in the pre-op with me. I was surprised at the amount of paperwork you have to sign to give away your old liver. It was very nice in the OR, they only started the IV and nothing else until you were completely out.
The first thought I had when I woke up was…I didn’t itch! In all I was in the hospital for a total of 6 days. It is amazing how fast life can change.
I started walking at a Liver Life Walk 17 years ago and became so engaged that I volunteered for many years. I became a board member and that led me to become an employee, now every day I get to work hard to help those like me affected by Liver disease.
Holly is the Events Manager for our Upper Midwest Division. On May 22nd, she celebrated her 13th “rebirthday” with her new liver!
Share this page