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.
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