We were able to meet with USC's Associate Medical Director of Transplant Hepatology on Tuesday the 26th. He was able to review the material we sent the team and felt the information was still consistent with PSC, which prompted a recommendation for liver transplant. 

 

We went back on Monday the 1st to meet with USC's transplant surgeon and her view was also that the disease is consistent with PSC and thought moving forward with transplant expeditiously was warranted. She feels the transplant is very-high risk and technically challenging due to the extensive blockage in the portal vein. Essentially, the surgeons would need to connect veins that don't normally connect, in order to make sure the new liver has enough blood flow. 

 

The USC committee met on Monday the 1st and recommended not doing the shunt surgery in Utah and moving forward to list me for liver transplant, contingent upon getting a colonoscopy done ASAP to rule out any cancer in the colon before surgery. My last one was just about a year ago, so they want another one since I have Crohns. So I messaged my team at UCSD to get that moved up. 

 

While this was occuring, we had already set up a surgery date with the Utah team and have tickets to fly out this Monday for the surgery. The hope of this was to improve liver outcomes if the diagnosis was portal billiopathy. The USC team recommended not proceeding forward with this surgery. We're a bit at a loss of who's expertise to follow. Thankfully, we have the transplant surgeon's number in Utah and spoke through the case with him again on Tuesday night. He also feels transplant is the best way to decompress the portal system, the hepatologist and director in Utah is the one that mainly leads towards portal biliopathy and shunt surgery. The surgeon's plan is to speak with the Utah team again and look at relisting for liver transplant due to "differences in opinion from the USC team". 

 

If we proceed forward with liver transplant, which is what we've communicated to USC, my score for transplant is still very low and there's no way I will get an offer at USC. Their plan would be apply for exemption points to increase my score. Exemptions are far from guaranteed and often take several rounds to be approved, if they are approved. 

 

In summary, we're getting through the final details with USC to be listed and working with Utah on what they feel is the best plan now. Ideally it would be nice to list at both places to see who can get an offer first since my score is so low. My stents are scheduled to be replaced on Thursday, 4/11. We are still concerned about the risk of bleeding, but at this point they have already been in longer than they are suppose to be. We will be talking with the doctor and both transplant teams about the best way to handle bleeding during the stent exchange. 

 

Thanks for the love and prayers and bearing with the long updates! We are thankful for each of you and your prayers as we figure out the best plan!