Phone call with a new PA at the liver doctor

Even though we've been doing a better job of monitoring her fluid and salt intake and increasing her protein, Becky's ammonia levels appeared to stay high this week as she spent most of the week in a rather confused state. I'm not sure confused is the best word. Maybe foggy is better. In any case, she has a hard time completing thoughts, keeping track of days, those kinds of things.

Given the ongoing issues with the fluids and the fact that her feet and hands are looking swollen again, I made several calls to the doctor last week to see if we could get her back on a low dose of diuretics. There was some confusion about orders for blood work that eventually resulted in the PA calling me on Friday morning. This is a different doctor than we've been seeing. He's the one we have an appointment with in early December to start transplant discussions. He did say that he would put in prescriptions for a low dose of diuretics and beta blocker. We'll need to monitor her kidneys and blood pressure once we start those.

We also talked a bit about the possibility of a transplant. Two things are worth passing on. First, once a transplant is determined to be the best option and we are added to the national registry, if we have to wait for a deceased organ doner, that will likely mean reaching a MELD score of 30-35 before we're high enough on the list to be a recipient. With a score that high, Becky would likely be in a hospital bed. Second, the easier/faster path is generally to find or be matched with a living donor. That requires a much lower score and happens much faster. We have lots to learn on that front - everything from qualifications for her and the donor to insurance coverages/processes and everything in between. The doctor did mention that a living donor would need to be between 21 and 55 and be generally in good health. There would be other tests, but we didn't get into specifics just yet. For now, just know this will likely be the preferred path if/when Becky is approved for a transplant, and if so, we'll begin a search as soon as possible after that approval.

Her next radiology appointment is Wednesday.