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.

Adjusting to a new normal

We saw Becky's PCP yesterday. She's taking her off her blood pressure meds and we'll just be keeping an eye on it at home. It's mostly been hanging out in the mid-upper 90s with an occasional low 100s with the wrist cuff at home. It was around 120 at the last two doctors' appointments. Her doctor says as long as it's not living over 140 we're good.

I'm anticipating we'll be trying the diuretics again soon since it looks like she's getting more fluid in her abdomen again. She had a radiology appointment on Wednesday to check the ascites and drain if necessary. More blood work scheduled for Friday to see how her kidneys are doing and get more liver numbers for the MELD score.

The MELD (Model for End-stage Liver Disease) score is a new thing to start paying attention to. the MELD score is a mathematical formula based on several numbers from the bloodwork related to liver function. It ranges from 6 (healthy liver) to 40 (non-functioning liver). Becky's initial number was a 7 in April/May. This score is used to determine your priority on the transplant list.

    Why do we use MELD score?

Becky's having a hard time with the phone and TV lately. Most of the time she can't make her fingers work well enough to text. If you get an answer to a text message, it's just as likely me typing it for her as it is her typing. I plan to look for some apps to help her out but I'm not sure how well she'll do learning new things. The bottom line is that she's still doing "OK." I at least don't think we're headed back to the ER and her blood pressure seems more stable. We're still adjusting to a new normal and waiting to see where we stand as far as a possible transplant goes.

From fatty liver to cirrhosis in a few months

Becky had an appointment with her liver doctor yesterday, September 1st. We knew things weren't going well, but the news was worse than expected.

Let me start with a short history. Becky was diagnosed with nonalcoholic steatohepatitis (fatty liver disease) several years ago. About a year ago that progressed to a diagnosis of early signs of cirrhosis. Within the last few months that's unexpectedly and inexplicably rapidly progressed to decompensated cirrhosis (end-stage liver disease), and she's been dealing with several consequences as a result. At some point this may lead to a possible liver transplant, but for now we're just trying to address the day to day.

Here's a summary of what we learned from the doctor:

• Fatty liver disease can lead to cirrhosis. Diet changes can usually slow or stop that progression.
• Cirrhosis is diagnosed when there is scarring which is permanent liver damage.
• Becky is dealing with both at this point - fatty liver and initial signs of cirrhosis.
• We need to try to reduce the fatty liver by changing her diet (more protein, less carbs and salt) in order to keep the healthy part of the liver working as well as possible.
• Becky is at the "decompensated" stage of cirrhosis, which is considered end-stage liver disease.
• Decompensation is associated with blockage of blood flow which leads to other consequences such varices, ascites and hepatic encephalopathy.
• Varices is the enlargement of veins which can rupture and cause internal bleeding. There was evidence of varices in Becky's last endoscopy but no bleeding.
• Ascites is the fluid which the liver can no longer filter and process now seeping out into the abdomen which Becky is now dealing with.
• Hepatic encephalopathy is an increased ammonia level which is causing her some general confusion and shaky hands.
• I believe that although the cirrhosis itself can't be reduced, we can attempt to move from "decompensated" back to compensated and recover some liver function.
• The doctor admitted he probably over-reacted to the ascites and increased her diuretic prescriptions too fast in an attempt to reduce her fluid retention. This led to her blood pressure dropping to the 80s over 50s range and also aggravated her kidneys.
• We have more blood work in a couple weeks (without diuretics) to re-evaluate the kidneys and get more liver numbers.
• After the next round of blood work, we'll get a new MELD score (this number is used to determine transplant eligibility and urgency). Her first score was 7 a few months ago out of a range of 6-40 where 6 is a healthy/functioning liver.
• We'll determine need for preliminary transplant conversations/testing her next appointment.
• If/When the transplant path becomes a reality, I'll have some information on living donors and "donor champions" that I can pass along.

The doctor (actually a nurse practitioner) is very knowledgeable and personable and spent almost an hour with us yesterday. He feels that some kind of infectious event such as a viral infection caused liver inflammation which in turn caused the unusually rapid progression of the cirrhosis.

The main focus right now is to change her diet in order to reduce the fatty liver and keep the ascites and hepatic encephalopathy under control. That sounds simple, but it's just a step. It's not really fixing the main liver issue. I suspect we have a long journey ahead.