Judy Miller Judy's Re-Livery

First post: Aug 5, 2005 Latest post: Feb 17, 2023
I have Primary Sclerosing Cholangitis which is an auto-immune deficiency disease. PSC is a progressive inflammation, fibrosis, and stricturing of the bile duct within the liver and outside of the liver. I was listed for a new liver in August of 2005. Between September 2005 and 2007, I had an external biliary stent placed to help my liver function properly. This required a trip back to Barnes Jewish Hospital every six week to have the stent checked and changed. On October 24, 2007 the doctors were successful in placing an internal stent. The hope now was that my local doctors would be able to change the stent every three to six months. No more hole in my side or tube hanging out and hopefully not so many trips to Barnes. In May 2008, the doctors took the internal stent out as well and since then my liver was doing its job. In February 2010, I was also diagnosed with IBD (irritable bowel disease) - it is not unusual to have other auto-immune diseases once you have one. beginning in 2010 I made regular annual visits to Barnes for an MRCP, blood work and doctor visit. I had blood work every 4-6 months to check on my liver functions and saw my local gastro doctor every six months and the doctors at Barne's every 8-12 months. I was listed on the transplant list from 2005-2015.

September 10, 2015 UPDATE! The liver transplant team at Barnes removed me from the transplant list. My MRCP (9/2/15) showed no changes to my liver from two years prior. My liver disease was officially NOT active. I continued to return to St. Louis once a year to see Dr. Kevin Kornblat and to have an MRCP.

May 30, 2016 UPDATE! I returned to Barnes on April 14 for an MRCP and was back at Barnes on April 27-29 for an ERCP to remove a biliary duct stone/blockage. Tissue samples were taken and the results (F.I.S.H test) indicated abnormal chromosomes. I returned to Barnes June 1-2 for further cancer tests and another ERCP/FISH test. I was diagnosed with Cholangiocarcinoma or bile duct cancer stage 0 in June 2016 and underwent all of the liver transplant and cancer scans and tests in July. August-October I followed a six week course of chemotherapy at the Springfield Clinic in Springfield, IL. November 28, 2016 - January 9, 2017, I underwent radiation and a short course of chemotherapy. Between May 24-July 22, 2017, I was in the emergency room three times, transported twice by ambulence from Presence Hospital in Urbana to Barnes Jewish Hospital, admitted for several weeks in the hospital three times and underwent a liver transplant (July 22nd).