In 2010, I was first diagnosed with Primary Sclerosing Cholangitis, PSC, which is a disease of the bile ducts. The disease progresses slowly but can lead to liver failure, repeated infections, and tumors of the bile duct or liver. Over the past eight years, I have had countless ERCPs and MRIs to monitor the disease. In December 2014, I was diagnosed with Crohn's Disease, secondary to PSC, and started Humira in early 2015.
In September 2017 I had an ERCP done to open up some blocked bile ducts. During this procedure, the doctors actively take biopsies of the tissue and bile to see if anything is suspicious. January 2018, I had to repeat the ERCP due to suspicious results in September. The results came back normal.
In April, I was hospitalized at Essentia for 8 days with abdominal pain, jaundice, and worsening pruritus. The doctors in Fargo attempted an ERCP and were only successful in getting through the left hepatic duct. They were able to place a stent to help drain bile from the liver. After being released from Essentia my mom and I rushed down to Rochester where the doctors did another ERCP. At that time it showed worsening stricturing disease with a dominant hilar stricture involving the take-off of the right and left hepatic ducts. The area with the most stricture was sampled, balloon dilated and placed 4 stents.
A week later the biopsies came back revealing that the left main is suspicious of adenocarcinoma and that the FISH studies came back positive. The doctors discussed my case and had the overall impression that the results favor cholangiocarcinoma and, therefore, initiation of transplant evaluation.
The week of 5/15-5/18, I started the evaluation for liver transplant. During the evaluation, the stents that were placed in April were replaced. This also gave the doctors the opportunity to take more biopsies to further confirm their previous results.
On the 18th my parents and I were given the news that their suspicion for cholangiocarcinoma is true. My doctors went in front of the tumor board on the 22nd to discuss the actual size of the tumor. On the 23rd, the doctors went in front of the transplant committee. They discussed my case and approved to list me for a liver transplant.
The protocol now is three weeks of chemotherapy and radiation followed by replacing the stents for one with radiation beads. At this time the doctors have decided that a deceased donor is the only option for transplant.