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.

Same procedure, different hospital

Always seems to be a new adventure. We went to St David's in downtown Austin for today's paracentesis procedure. They use the surgery center rather than going directly to radiology. Registration to discharge time was 4-1/2 hours. Better than 9 at ER, but still way less convenient than 1 hour at Georgetown radiology. After having 7.5 liters drained, Becky still looks to be carrying extra fluid. More messages to the liver doctor probably in our near future or maybe even seeing if another appointment before December makes sense at this point.

Working on diet changes

I had tried to schedule another appointment at radiology for this week since it seemed like Becky was going to need fluid drained again, but the doctor’s orders only allowed a scheduled visit every two weeks. So, we spent 9 hours in the ER on Monday to get another 6.8 liters drained (by the very same techs/nurses that do her regular appointments). Paperwork. Ugh. Doctor’s orders have been updated since then to allow weekly visits.

By Tuesday we had some updated info based on the most recent blood work. Her kidneys have not yet recovered enough to restart diuretics. More blood work scheduled for next week to check again. That means we have to keep managing the build-up of fluid by limiting liquid and salt intake - both of which are difficult for her. We also got an updated MELD score of 12 - up from the original 7 (in a range of 6 to 40). It has to get up to 20 to even get on the transplant list as the lowest priority.

We had some conversations about diet and the fact that we can’t count on a transplant as being a silver bullet. We just don't know enough yet. I'm not sure if the fact that she has allergic reactions to so many antibiotics and painkillers will be a factor. However, it seems like unless something very dramatic happens we won’t even be starting to ask those questions until our December appointment. And even if a transplant is in the future, we could easily still be a year away from that.

In the meantime, Becky has committed to trying harder to make more drastic changes to her diet. We’re going to try to plan some meals tomorrow and give her options for breakfast/lunch. We’ll also try to come up with some dinner meals we can grill or make easily after I get home. The kids have offered to cook meals once or twice a week so we'll try to come up with meals that she would be willing to try. That’s our homework for today - meal planning.

We’ll primarily be focusing on cutting liquid and salt intake while increasing protein for now.

Back to the ER once again

We spent about 9 hours in the ER today getting another 6.8 liters of fluids drained. There were several critical patients (arriving in ambulances) that pushed us down the priority list. 

We're still waiting on the liver doctor to tell us if blood work results will allow restarting diuretics because doing the paracentesis every week is going to get old pretty fast - for both of us.

Eventful week

It's been an eventful week. Becky fell early in the week. I don't think she cracked any ribs this time, but she's been sore. She had 5.8 liters of fluid drained on Wednesday. It already looks like it's building up again, but the current doctor's orders are only for once every two weeks. I sent a message to see if those could be updated since they need to be extended past the first week of October anyway. 

Becky's been emotional this week and promised earlier in the week to try to eat better. Brittany brought over a keto cookbook and Becky picked some things to try. We're still working on making better choices. She's getting more bloodwork today at Quest to see if she can restart a low dose of diuretics. She seems a little more confused today than she has recently, but the blood pressure has been ok. Still trying to get to a stable/predictable place.