Not my favorite place to watch the games

I ended up watching the Texas and Michigan football games from the ER on Saturday. Texas hung on even after losing their starting quarterback. Michigan made it look pretty easy. That was so much fun I thought I'd hang around and watch football from the hospital on Sunday. But you didn’t come here for football stories…

Becky started feeling bad Friday afternoon and it got worse instead of better during the day Saturday. So we ended up back at our favorite date spot - the emergency room. At least we timed things a bit better this time. We got back to ER less than five minutes after we checked in - not another 3-1/2 hour wait. That doesn’t mean it was a quick visit. In fact, we liked the service so much we decided to spend the night.

After filling several vials for various blood tests, an X-ray, a CAT scan, an EKG, and two IVs, the ER doctor recommended we spend the night for two main reasons. The first was to do a blood transfusion. Becky’s hemoglobin counts were around 7 and have been trending slightly down for the past few weeks. A normal count is in the 12-18 range and a transfusion is generally recommended when it dips below 8. The transfusion was definitely an anxiety trigger for Becky, but we pushed through.

The second reason was to be seen by a GI doctor. Some other count from the blood work or maybe the CAT scan (can’t remember which, it's been a long weekend) indicated a potential issue with the pancreas, and there was still no indication of what was causing her low white blood cell count. Nothing obvious showed on the CAT scan so she felt it was worth somebody else taking a look.

The GI doctor did an endoscopy on Sunday morning and discovered she had candida - a yeast infection in her esophagus. Because she still had food in her stomach and because of the infection, he didn't get a great look at her varices (enlarged veins), but from what he saw he didn't think they looked too bad. Unfortunately, he couldn't do anything about them in any case since there was too much in her stomach. He did suggest she should probably get somebody to take another look once the infection clears.

We're still looking for answers as to what has caused her increased white blood cell count. We'll probably be here until Monday waiting for blood culture results, but even that's kind of a long shot. Beyond that we'll see what the day brings.

If you're looking for a fun outing on Sunday afternoon, it looks like we'll be here all day!

Jumping through hoops

Oh my, what a week it has been. I'll start with Becky. She had an up and down week. Her hepatic encephalopathy (increased ammonia level) was apparently higher than usual early in the week as evidenced by increased shakiness in her hands and her general fogginess and inability to focus her thoughts. That has improved the last couple of days back down to more manageable levels. That allowed her to have lunch and a good visit with some family this week.

At her weekly radiology appointment, she had "only" 6.8 liters of fluid drained. I initially thought they forgot to test a sample of the ascites fluid for infection. It turns out, they did. I had just gotten bad information from Becky. The liver doctor wanted to test the fluid because of elevated white blood cell counts from her most recent blood work. We found out later that the test came back negative.

Even with everything else going on, Brian and I started doing some car shopping this week and we brought one home for Becky to look at it. Even though she can't drive right now, the Durango has almost 225,000 miles on it, and I'm hoping having a new car in the driveway will give her one more thing to look forward to. As incentives go, it takes a "back seat" to spending time with grandkids and other family, but it's something.

As far as doctors and insurance go, that's where the hoop jumping part comes in.

We attempted to get a referral sent to our preferred liver transplant center. After several phone calls and emails to the liver doctor's office, the medical center, and the insurance company, I finally found out that the insurance company doesn't treat transplants the same as other referrals (like the doctor's office would normally do). They have a special program for this (Cigna LifeSOURCE), and in the end that might be a good thing. For now, it means I have to convince the doctor's office to do something different than their normal process and it's been a challenge so far. I will need to call again Monday to see if they have made the required phone call to Cigna LifeSOURCE to open a case for Becky and get the process started. I have created a page on this blog to post more information about the transplant process and living donor search as soon as we have approvals, know that's the path, and have more details.

I also attempted to set up an appointment with the hematologist. That phone call went to a receptionist that has no access to any information about whether or not that referral was received. She just sends a message for another office to call me back when "they have everything they need" - and since I spend most of my day in a closed lab where I cannot carry my cell phone, that will prove to be a challenge.

In the middle of the week, Becky received a text saying she had a new prescription for an antibiotic ready (one that we were not aware was being prescribed). When I called to find out more information, I found out it was sent in by the liver doctor. I'm presuming he was concerned enough about the possible infection to start antibiotics before getting test results, but he never informed us of that. If Becky had not been signed up for text message alerts from the pharmacy, we would not have known.

I haven't heard from the gastroenterologist yet either, so I'll add that to my list of phone calls to make on Monday.

Thank you to everyone that has been praying. We appreciate you!

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.

That answers that ... no diuretics

Just a short note to say we decided to stop the diuretics and beta blockers. Becky's blood pressure went back down to 80s/50s after only three days of the new prescriptions. We'll discuss options with the doctor on Friday.

Waiting game ... at yet another emergency room

Becky wasn't feeling good this afternoon and evening so we decided we would try yet another ER. We were told North Austin Medical Center was likely to have staff available after normal weekday hours since they're a much larger facility.

Early indications were that we might end up spending the night and waiting for the procedure to be done in the morning. As bad as that sounded, since she was having trouble breathing that seemed better/safer than going home and coming back. So we waited our turn...

After 3-1/2 hours of sitting in a chair in the lobby (not actually in the ER), we had second thoughts about that being better than sleeping in our own bed. Since Becky was actually feeling better than she had earlier, we gave up and decided to go home and see what the morning brings.

Communication issues with the doctor's office

We started out the week on a positive note. Becky felt a little better this week and was a little less foggy. We had dinner with Bubba at Rudy's one night. She ordered meat and beans - no potato, or bread, or banana pudding.

However, while waiting in radiology today while Becky was having another paracentesis, I decided to call the liver doctor again to get clarification on her diuretics prescription and her blood work. Someone had called yesterday, but I wasn't getting very clear info from Becky about what they were telling her. They were confirming that the diuretic Rx was called in, but it also turns out they were calling because they wanted to let her know they were referring her to a hematology/oncology office - although we're not sure why yet.

Eventually we got another call to set up an appointment rather than continuing to send messages. So our next appointment at the liver doctor's office is Friday the 13th.

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.