4 days/3 nights at the all-inclusive NAMC resort and spa

Well, we've returned home from our 3 night stay at the North Austin Medical Center. Great place. Friendly staff (mostly). Food was only so-so. In the end, I probably wouldn't recommend it unless you're actually in need of medical services. In that case, sure, I'd probably go with four stars.

A couple more procedures happened since yesterday's post. Becky had a paracentesis and they tested the drained fluid for infection yesterday. Today, she had another upper GI procedure where they went in and banded two of her enlarged veins as a preventative measure to avoid internal bleeding.

What have we learned since yesterday?

• I'm not 100% sure, but nobody said there was an infection in Becky's ascites fluid, so I think that's a plus.

• The hemoglobin counts are an indicator of possible anemia and are probably going to be a constant battle until the transplant. Since the liver's not doing its job, Becky just doesn't have the right mix of stuff in her blood. This is one of the complications we'll have to manage. Hello, Texas Oncology? Can you call us back so we can come up with a plan?

• Apparently the procedure to band the veins in her esophagus will also be a regular thing. Or at least she'll need to be checked for this, probably on a monthly basis.

In summary, Becky had a blood transfusion (where we confirmed her blood type is O+), a paracentesis (which means we don't plan to go in this Thursday), two upper GI procedures (one detected an esophageal infection, the other for the banding), some IV antibiotics and albumin, and a couple prescriptions to finish up at home.

On the transplant evalutation front, we do now have a dedicated Case Manager at the insurance company and can begin conversations with UT Southwestern Medical Center in Dallas. I've included more information related to transplants and donors on a separate page - Transplant Links and Information

Turning corners

If you’ve been keeping up, you know that we spent the weekend at the hospital. We started in the Emergency Room and were eventually admitted to the hospital Saturday night. As of today (Monday), we seemed to have turned a corner and if things go as planned Becky will be discharged tomorrow. This is a little long (a bad habit of mine), but here’s what we’ve learned:

• Becky’s hemoglobin was low. We kinda knew that already, but since Becky was feeling so bad and the count was drifting lower, they decided to do a blood transfusion. In the process, we also learned that Becky’s blood type is O+. We’re waiting for follow up blood work to confirm that her counts are better.

• Becky’s white blood cell counts were high. We also kinda knew this, but since she wasn’t showing any signs of infection (before Friday), we hadn’t pursued anything. Well, not quite true. The liver doctor had prescribed an anti-biotic, but he hadn’t told us that he had or why so she hadn’t started taking them until Friday. An endoscopy on Sunday discovered a fungal infection in Becky’s esophagus. This doesn’t generally cause significant increases in white blood cell counts, so there have been a whole host of other tests to see if there is a second infection. Nothing else has been found so far, but they are going to do another test on her ascites fluid to verify there’s not one there and she’s been placed on another more wide ranging antibiotic just to cover all the bases.

• The first endoscopy verified her enlarged varies (swollen veins in her esophagus) but no sign of bleeding (a good thing). We’re currently on the books for a second endoscopy tomorrow to band those enlarged veins to reduce the possibility of future bleeding issues.

We appear to have also turned a corner with the insurance. The liver doctor finally made the call to the right number/department to get a case opened. We’re now waiting for assignment to a case manager so we can figure out the next steps on that path. We expect to be referred to UT Southwestern Medical Center in Dallas and Becky’s ready to make a trip tomorrow. I’m skeptical things will happen that fast, but I’m also anxious to get started as soon as we can.

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.