Decompensated to Compensated

Compensated: When you don't have any symptoms of the disease, you're considered to have compensated cirrhosis. Decompensated: When your cirrhosis has progressed to the point that the liver is having trouble functioning and you start having symptoms of the disease, you're considered to have decompensated cirrhosis.

As most of you saw, I recently had my next check-up in Salt Lake City with my hepatologist. They did a blood panel and I just got an email that my bloodwork was all within "normal limits" except for my AST/ALTs but they are in the 90s... so still continually going down since my hospitalization (which was a year ago in about a week!) That being said, my thinking was, "So, is my liver working?", "Can I stop taking these stinking meds and just go back to normal life?" I knew it was wishful thinking but I just couldn't wrap my brain around why I have to take stuff for sick people if I don't feel sick. By far, the best answer I got yet was a reply via email from this amazing RN who I have spoken to on the phone before and she is very knowledgeable and kind in explaining things. Her answer explains everything so well, I'm just going to copy/paste what she said (PS: be prepared for TMI 💩💩💩): 

Hello Kristina,

If your liver function tests are within normal range it means your liver function has "stabilized". If you are not experiencing complications or symptoms of advanced liver disease (jaundice/yellowing of eyes or skin, bleeding in your stool or vomit, moderate to severe confusion, muscle wasting/weight loss, severe fatigue or ascites (abdominal swelling) then you are in a stage called "compensated". You have "compensated cirrhosis".

 

Someone with compensated cirrhosis doesn't necessarily look or feel sick; their symptoms of the disease may be mild or nonexistent even though the liver is severely scarred. Someone with decompensated cirrhosis will feel and appear sick as their liver is struggling to function.

 

It's important to have at least 3 bowel movements daily to help move ammonia from your system to avoid confusion or hepatic encephalopathy. We tend to see confusion return when people stop taking lactulose on a daily basis. It can come on gradually in small ways or suddenly affect you ina big way. You can always titrate or adjust down the frequency or the size of the dose you take if you are feeling sharp and your bowel movements are 3 or more. You can also increase it when you feel foggy. If you continue to drive, then a daily maintenance dose is recommended. Not taking lactulose for an extended period of time may lead to lethargy (extreme drowsiness and fatigue) and even lead to coma.

 

Percentage of liver function as a number I don't think can be quantified. It's more helpful to think in terms of how you are able to function in our daily life and how liver disease interferes or doesn't interfere with what you need to do. We treat the complications as they arise and help you make lifestyle changes to avoid further injury (scarring) or decompensation. This is why we focus in diet, exercise, vaccines against other sickness and contagious diseases and safe medications.

 

Does this help?

I really like the website American Liver Foundation and uptodate.com

Here is an overview (detailed) about cirrhosis if you're interested in more explanation.

https://www.uptodate.com/contents/cirrhosis-beyond-the-basics?search=cirrhosis&topicRef=15380&source=see_link

Sincerely,

Theresa Jacobs, RN

If you follow that link, it goes on to explain more about compensated vs decompensated liver cirrhosis and the symptoms. From that list, I definitely had many of the symptoms when I was in the hospital. Now, the only things I really feel like I struggle with are fatigue, some water retention, and brain fog. I often struggle to find words and have a hard time concentrating. At least I don't have 2 liters of fluid or any bleeding varices.

I no longer have any other autoimmune markers, so they don't think it's autoimmune hepatitis anymore. Their best guess is that my undiagnosed Celiac was affecting my liver and then I somehow got the Hep E which pushed my liver over the edge. They Hep E is long out of my body. Since my liver is very scarred and "fragile", they want me to have all the hepatitis vaccinations because getting another type of hepatitis would likely put me back into the hospital if not on the transplant list. I already had the Hep B series when I became a dental assistant but now have to get the Hep A vaccination.

I was diagnosed with Celiac in May 2020 when I had my upper endoscopy. They want one done every year to keep an eye on my Celiac so I have to get another one in the next couple of months. I also have to have either an MRI or CT every year to make sure my cirrhosis doesn't turn into cancer. I just had my CT in November so both are due around the same time. The hepatologist really prefers to see me in Utah so he had his nurse find appointments that we could do the endoscopy, MRI, and a new Fibroscan all in one day. That day is April 9th. So, not just over a month away, I will go back to Utah... yet again and it will be a very FULL day. 

Through all of this, I think I have my answers or at least "good enough." I have come to grips with not "working" even though I have two businesses, many side jobs, and two kids. If I can just bring in more income, that would be great! Health-wise though, it is what it is and I'm just going to keep living until it knocks me down again.

Again, thanks for all the prayers. I know I "look good" and seem ok, but on the inside, it is still questionable. If you are still following my story, I appreciate you.