On Thursday (4/11), I had another ERCP to replace the stents in my liver. This was done by my regular doctor at UCSD. Those stents had been working well, but reached the maximum time limit to where they needed to be replaced. The stents are ultimately the only thing making me feel okay right now.

The procedure was very long again, they are typically 45 mins to 1 hour for a normal person. After 2.5 hours of trying, the doctor failed to remove the stents because they have migrated higher in the bile ducts. There was bleeding during the procedure, but thankfully it was manageable without intervention. From what we understand, the doctor will have to do the procedure again in a couple weeks to cut the sphincter going up to the bile ducts bigger, and hopefully be able to retrieve and remove the stents. Fortunately, I didn’t have to stay overnight this time and was discharged that afternoon.

As some of you know, I was actually scheduled to have that shunt surgery this past week in Utah. After hearing the differing opinions from the USC transplant team, we decided to cancel the shunt surgery and went forward with the ERCP this week to exchange the stents. We asked the Utah team to reconsider listing me for transplant. 

Friday morning (4/12) we had a zoom call with the head of transplant at Intermountain (Utah) and the transplant surgeon. Their team reviewed my case again and they still feel strongly my underlying diagnosis could be portal biliopathy. This is even more rare than PSC, and a very hard diagnosis to make because so few people present with it. Several of the doctors from the Utah team have practice outside of the United States, and they have been practicing for 30+ years, which broadens their expertise in this area. We can honestly understand both sides of reasoning for portal biliopathy and PSC.

After reviewing my case again, the Utah team is still recommending a large splenic shunt to alter blood flow out of the liver to decompress the high pressure in the system. The hope would be that this reduces pressure in the collateral veins pushing on my bile ducts. Although there is no guarantee this shunt surgery will work, it does seem plausible enough to try before going straight to transplant given the extra complexities and long term risks with transplant.

We do feel confident in the expertise, ability to think outside the box, and our relationship with the team in Utah. As of now, our plan is to proceed forward with the shunt surgery as soon as possible, especially with the failed removal of the stents on Thursday. 

We would love prayer for no infections and the stents to remain opened as they are running on borrowed time. We’d also love prayer that insurance approval and scheduling of the surgery would happen quickly.

Things can change quickly, but this is the clearest path we see forward at this time. We will do our best to continue to share updates here as things change. Thank you for the comments, texts, and messages of prayer and love… we are so grateful for them all!

David and Liz