Moving from end-stage to the next stage

Today was our first appointment with our new Physician’s Assistant at the liver doctor’s office. We learned a lot, but we also learned that we have a lot to learn!

Most importantly, we learned that Becky’s MELD score (the number that indicates the overall health of her liver) went up from 12 to 25 - out of a range of 6 to 40. Although the MELD score could go up and down a little, the trend doesn’t make it look like it’s likely it will come back down. The MELD score and other symptoms indicate that Becky’s liver has become decompensated and reached the end stage liver disease stage which means it will likely not recover.

At this point, our next stage is likely to find a liver donor if/when we get approved for that. There are two paths to finding a liver donor.

Option 1 : Get on a liver transplant list. This option puts us in a queue with other patients waiting for a liver from a deceased organ donor. The higher Becky’s MELD score becomes, the higher she goes on the list. We won’t really know how long that wait could be until we start talking to a liver transplant center.

Option 2 : Find a living donor. This option doesn’t require any particular MELD score. It involves finding a family member or friend that is willing to donate half of their liver. From what I understand, both halves will regenerate to normal size within about 6-8 weeks.

While we still have a whole host of questions for both our insurance company and for the medical center we choose, there a few things we learned today:

• There are only four liver transplant centers in Texas - in Dallas, Houston, and San Antonio. There are none in Austin.
• There are two centers in San Antonio. The one that takes our insurance does not do transplants from living donors.
• The transplant center in Dallas takes our insurance and does transplant from living donors.
• I believe the center in Houston also takes our insurance and does transplants from living donors.
• We would be making many trips to whichever location we pick before and after an actual transplant.
• The recipient’s insurance will generally cover the costs for both the recipient and the donor.

In addition to the transplant information, we also learned Becky’s most recent blood work points to a few other liver decompensation issues we need to address:

• Since Becky doesn’t seem to tolerate the diuretics, we don’t have any other options to reduce her fluid retention other than limiting her fluid and salt intake. The goal is to minimize the salt intake to as little as possible.
• Since Becky’s system doesn’t tolerate the beta blocker, we need to pursue getting the varices (enlarged) veins in her esophagus banded and/or obliterated.
• Her blood work also showed an elevated white blood cell count, reduced electrolytes, and signs of anemia (lowered platelet count likely due to an enlarged spleen). She’s being referred to a hematologist to follow up.
• Given Becky’s intolerance to medications that could help manage the fluid buildup, the paracentesis is something she will need to deal with for the foreseeable future, so those orders were extended for a year.

We’ll be making a decision on which medical center we want to use this weekend and notify our doctor on Monday. They will then send a referral and the process will begin. And so, the next stage of the journey begins.