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.

Ups and downs continue

We've had our ups and downs this week. Things kinda went downhill after we visited with the kids on Saturday. I'm pretty sure Becky's ammonia levels went up because she skipped a couple doses of the lactulose. She was pretty disoriented for a day or so, but better later. Not quite back to normal, whatever that is, but better than this morning. On the plus side, her blood pressure is back up over 100.

She had another radiology appt today. Less fluid than last time so no paracentesis. Her blood pressure stayed over 100 the last couple of days. However ... the liver doctor left a message saying her kidneys don't like the diuretics so we're having to stop those (for now?). We'll talk about this at her appointment on Friday, I'm sure. I expect fluid will start to build back up, but we'll see. Also, even though the fluid is being managed and the blood pressure is better, she still seems fairly unstable when walking and foggy headed when talking.

New appointment date and new issues

The liver doctor called in sick on Monday. Appointment rescheduled for Friday (9/1).

Short update on how things are going this week. On the plus side, this week's visit to radiology was mostly uneventful. There was not enough fluid to drain this week. However, she was feeling a little dizzy so they took her blood pressure - 90 something over 50. Then she told me it was 94/49 on Tuesday at the dentist. I reached out to the liver doctor via the portal. He made more adjustments to her meds. She was so weak and worn out tonight that she couldn't open her Dr Pepper.

Next Friday's doctor appointment can't come soon enough. Hopefully it means we get a clearer picture of where we're at and what to expect from this point forward.

Mid-week update on appointments

Becky had bloodwork done, got an ultrasound, and had an actual appointment with radiology this week. She had a little less than 3 liters drained today. Hopefully all this gives the doctor enough data to give us some answers on Monday.

For now she's doing OK, but her "OK" right now is nowhere near normal. I thought she was having a decent day yesterday, and then she completely wore herself out changing sheets on our bed. Then she threw up her dinner. Today she's sore from "doing too much" yesterday. She's moving slow, feeling weak, hands are shaking, and very tired most of the time.

With any luck we'll make it to Monday's appointment with the liver doctor without any new emergencies.

Tried ER again since we didn't have any other option

We headed to the ER early because we just assumed Monday would be a busy day at the Emergency Room. We were correct. Radiology had to squeeze us in so they didn't finish the procedure until almost 3:00pm. The paracentesis drained 5 liters of fluid this time.

The ER doctor asked if she had been prescribed lactulose to help with liver function and controlling the ammonia levels in her blood. That's the likely cause of her confusion.

We'll be reaching out to see if we can move up her liver doctor appointment which is currently scheduled for November.

Next ER trip was a bust

I called early this morning to see if there would be anybody available at the hospital to perform another paracentesis if that's necessary. The receptionist said there would be.

Apparently I was misinformed by whoever I talked to on the phone this morning. Radiology is not available on the weekend. Unless her breathing is distressed, there's nothing they can do. I guess we'll be back Monday morning.

We once again had an awesome ER doctor. He was going to make sure there was no charge for today since they didn't actually do anything. He also suggested we talk to her liver doctor about what it takes to get on the transplant list. We honestly don't even know how we feel about that possibility yet. This is all going in the wrong direction way faster than we were led to believe it would when we had the last liver doctor visit in April.