Unfortunately, on Tuesday night we were informed the committee for liver transplant at UCSD decided *not* to approve David for official listing at this time. This is disappointing and unexpected. We have met with many different members of the transplant team over the past several weeks, and all of them have expressed we are moving in the right direction.

We were told the decision came down to the blockage David has in the vein going up to the liver (portal vein thrombus). The thrombus is not new, it has likely been there for years, we have asked a ton of question about it prior to this committee meeting. In January, we were told that the living donor path was not a good option because of this thrombus, so the liver transplant surgeon recommended proceeding with the deceased donor because there is more donor vein to work with. So it is frustrating and surprising that this is where we are at again.

With the portal vein thrombus, the team does not feel they will be able to make good connection to the donor liver to provide adequate blood flow, which will result in poor transplant outcomes and potential graft failure. There are graft options to build a new vein, but they often have a lot of complications after surgery. Another factor is that several other B blood type patients have been added to UCSDs transplant list since we spoke to the surgeon in January. These patients all have higher MELD scores, putting David at the bottom of the list. David would likely receive a “poor quality” liver with his current score, which also raises concern for poor outcomes, especially with poor blood flow to it.

David’s case is VERY unique. One in a million on so many levels. The above summary is a very small fraction of the details and nuance in all the conversations and appointments he has had, there are so many factors considered in this decision. There is no cure for David’s disease and he still needs a liver transplant, it’s just a matter of figuring out the right timing and the correct risk benefit calculation.

Our next steps are meeting with the UCSD Interventional Radioloy team to discuss if David is a candidate to attempt a procedure to reopen that portal vein. And if so, if that’s a risk worth taking to improve transplant outcomes. We are also working on getting a second opinion from another transplant team. The other team we have already connected with is in Utah, so we are currently working on coordinating appointments and flights to get another perspective from their team.

On the bright side, David’s current liver stents have lasted 5 weeks. This is the longest stretch he has had without hospitalization for infection or obstruction since stenting started in late October. When the stents are working properly, it greatly improves how he feels each day. The stents will need to be switched out again in the next couple weeks, we are praying for a successful procedure (historically they have been long and complicated) and another longer stretch out of the hospital as we continue to figure out the long term plan.

Thank you for the love and prayers! We can feel God’s nearness and faithfulness. We would appreciate prayers for us fully surrendering to His plan. The Lord is making it very clear to us that we have no control over what is ahead, please pray we can continue to remain confident in His goodness in the unknown.