Thanks for all the love and the prayers, we just wanted to give you an update based on the information we learned Monday meeting with the transplant surgeon, dietician, and social worker.

We have been told since David was diagnosed with PSC that living donor transplant will be the most likely course of action because PSC does not score well on the transplant scoring system. On Monday, the surgeon told us that she does not recommend a living donor transplant because David’s portal vein is blocked with a thrombus (blood clot) and doing a graft to make the surgery work leads to more post-operative complications. The surgeon is suggesting David going on the deceased donor transplant list for best long term outcomes. David has one of the rarest blood types, B negative. This is finally to his benefit, he would likely be within the top 5 on the B transplant list even though his score for transplant is very low. They use something called the MELD scoring system to rank everyone who needs a liver. The score is from 0-40, the higher the score the worse your liver is. This scoring system is more favorable for disease like fatty liver, hepatitis, etc; David’s last MELD score was only a 7. They typically transplant patients with MELD scores of 27-31. Because David is a unique case with PSC, the surgeon still recommends transplant at this time since there is no cure for PSC and because of his B blood type she believes there is a high chance of him getting a liver in the next 6 months even with his low MELD score.

Having a deceased donor leaves us at the mercy of waiting for a call day or night and pretty much heading straight to surgery at a moment’s notice. A huge advantage we see to the living donor transplant is having the ability to plan for the surgery and choose the health of the liver he is receiving. With the blockage in the portal vein combined with the fact that you can only get half a liver from a live donor (verses whole liver from deceased donor), it seems that the long-term outcomes are more favorable to go the deceased donor route even though we have no idea how long he could wait on the list and when the surgery will be.

David has some imaging and a few more doctors appointments to complete the “transplant evaluation” process. There is a committee meeting every Tuesday where they present cases for the whole team and decide if the patient is an acceptable candidate to be listed on the UNOS list for liver transplant. From what we understand, David could be listed within the next month if we meet all the criteria. 

David has been hospitalized 4 times since they started stenting in November. The stents are just a band aid to the problem since biliary stents are temporary and expected to be replaced every 8-12 weeks. He has been bleeding every time they remove the old stents so we won’t be surprised if they say it will be too risky to continue at some point. Also, his luck with infection and obstruction of the stents has clearly not been good! We have also been told that the strictures (narrowing of bile ducts, characteristic of the PSC) they are stenting are also likely to turn to cholangiocarcinoma (cancer of the bile ducts). The surgeon informed us on Monday that it would be much more favorable to transplant prior to them turning to cancer as it makes the transplant more complicated having to be on chemotherapy while waiting on the transplant list. At one point, we weren’t sure if cancer of the liver would increase his MELD score giving him a better chance of getting him a liver. The surgeon said that is for a different type of liver cancer, and she felt confident they could get him transplanted as a “low MELD” patient because of his B blood type.

Obviously, transplant is a huge surgery and has several risks. It means he has to be on immunosuppression the rest of his life so he doesn’t reject the organ. Lifelong immunosuppressive drugs bring about risk for kidney injury, risk for lymphoma, and skin cancer. We want to be careful to weigh the quality of life right now with post-transplant quality of life. It seems that waiting for transplant and possibly developing cancer of the bile ducts does not benefit us at all, and with the number of hospitalizations he has had in the last 2 months, along with how he feels without stents, it seems it is probably the right thing to join the list of waiting and move forward with transplant.

Here is what we know about the transplant surgery itself so far:

-They call with a deceased donor liver, you make the decision if you are willing to accept it. If at any time they feel the liver is not up to standard they will call off the surgery, even if you are in the OR prepped for surgery.

-Surgery is 6-8 hours.

-Average hospital stay is 1-2 weeks post-surgery, ICU first then downgraded as appropriate.

-Follow up is 4x/week once discharged from the hospital for 6 weeks. Typically, they make people relocate if they are outside of San Diego county, the social worker stated we are right on the border and would likely need to relocate for the first couple weeks post-transplant but depending on his recovery, may be able to do that for less than 6 weeks.

We appreicate prayers for making decisions for the criteria of liver we are willing to accept. Guidance over the next few weeks with imaging, appointments, and transplant coordinators and as we move towards the goal of getting him listed. And the Lord's peace as we walk into a path of unknown waiting, that it would be his perfect timing for David's liver. Thank you for reading and praying!