Charlie’s Story

Site created on April 10, 2018


13 years ago Charlie was diagnosed with an autoimmune disease called primary biliary cholangitis (PBC), which causes cirrhosis of the liver.  After multiple hospitalizations for everything from ruptured double splenic aneurisms to sepsis to a trip to Germany for a new heart valve last year,  Charlie finished off 2018 by receiving a liver transplant at University of Wisconsin Hospital on December 12.  After a few weeks of improving health, he developed graft vs. host disease, a rare and often fatal disease.  Fewer than 1 percent of liver transplant patients develop this condition, which is characterized by donor organ T-cells trying to "take over" the host's body while it is immunocompromised by post-transplant medications. Survival stats for liver transplant-ees who develop GVHD range from 0 - 25 percent, depending on what you read and which doctor you choose to listen to.  As usual, Charlie refused to listen to the dire predictions,  and it now appears that he and his doctors have forced the GVHD into remission. It's early days, but I wouldn't place any bets against the Rose-inator. He'll be back.

Newest Update

Journal entry by Kara Rose

We are happy to have made it to the end of this episode! It was a bad one. Charlie will continue to recover and build strength over the coming weeks and months. Doing well.

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