Liver transplant evaluation underway

We had an initial visit with a couple doctors from the liver transplant evaluation team this morning. They have two goals for this week.

The first is to try to get her in a better place for day-to-day life. The first doctor was concerned that if we went back home yesterday, Becky wouldn’t be able to take care of herself due to here weakness and shortness of breath. Her high white blood cell counts generally indicate an infection. They’ve taken blood several times to run various panels of tests in an attempt to find the source of any infection. She’s also had several other scans done and is scheduled for another blood transfusion today.

The second goal for this week is to fast track the actual liver transplant evaluation by performing as many parts of the evaluation as possible while she is an in-patient before the team meets on Thursday. This will include more visits with the liver team doctors, a visit with a social worker to make sure Becky has a good support network in place, and more tests to determine if she is healthy enough for a major surgery. There’s probably more that I’m not remembering or haven’t been told yet. The insurance company has amazingly already approved this path and is sending me information about coverages related to liver transplants.

We’ve had more visitors today than trick-or-treaters on Halloween. One of the most important was a transplant orientation where we learned some of the advantages and disadvantages of a living donor vs. a deceased donor. So much information in so little time. And not to discourage any potential living donors because we do still plan to pursue both options simultaneously, but it sounds like Becky’s ever increasing MELD score actually makes a deceased donor a better option. That’s because her body simply may not have the reserves to work through regenerating a whole liver from a partial liver donation. On the other hand, we are still working on getting her white and red blood cell counts back to a better place, along with a few other markers, so her score comes back down from the most recent score of 32.

In summary, all of these tests and conversations are providing data to the liver transplant team so they can make a decision on Thursday as to whether or not she is approved as a transplant candidate.

A positive outcome from that meeting is near the top of our prayer request list right now.

Another week, another emergency room

This week turned out to be another stop on our emergency room tour.

Starting with the good news. We finally got some insurance stuff straightened out last week, and we received a call to set up an initial “liver screening” appointment at UT Southwestern in Dallas on November 7th. That felt like progress. Becky actually felt pretty decent, all things considered, for a few days after we got home. Then we got a message saying there was a cancellation and we could move our appointment up to Monday, October 30th. Even better.

However … as the week progressed she started feeling weaker. Over the course of the weekend, she started getting chills (more than usual) and feeling bad. As we were getting ready to leave for Dallas Monday morning, her knee was bothering her and she was nauseous. We made it to the appointment, but I had to find a wheelchair for her since she was so weak and her knee was hurting. After talking to the doctor at the screening appointment for 10 or 15 minutes, he made some recommendations.

He felt like we needed to figure out the cause of her shortness of breath and lack of strength. He also wanted to try to accelerate the team’s transplant evaluation process which typically takes weeks to months. He sounded like he was concerned that if we wait for that normal process to take its course, Becky will be in a much worse place - especially given her current MELD score and how quickly things have deteriorated over the past few months.

More testing and a visit with the liver transplant team planned for Tuesday, and a another blog post once we know more.

Do they make pins or something we can start collecting at Emergency Rooms?

Headed to Dallas on Monday

We have our fist appointment with the UT Southwestern Medical Center team in Dallas on Monday (10/30). This will be an initial screening visit to determine if Becky is a candidate for a transplant. More to come soon, but for those that are following online, I thought it was important to share that we are headed into the next stage of this process.

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.

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.