This Thing Called End-Stage Liver Disease

This is another post about primary biliary cholangitis (cirrhosis) [PBC]. In my last post, I used the term End-Stage Liver Disease [ESLD]. It’s a very vague and barely useful designation. 

The good news is that my portal hypertension — once the subject of so many gruesome posts — has been effectively controlled by the Transjugular Intrahepatic Portosystemic Shunt [TIPS] I had installed in July 2015. I haven’t had a bleed since, and an exploratory endoscopy in the fall showed I now have a nice, smooth, pinkish esophagus instead of one with red streaks of varicose veins.

But I haven’t felt better. When I look back on what I could do in 2014 or 2013 and compare it with how I’ve felt the past nine months, I know I am at best holding steady.

So at my last hepatologist appointment, I asked the doctor straight out: Do I have ESLD? He looked taken aback, like this was an acronym that doctors use among themselves not with patients. But he said, yes. And so I said, how much longer do I have? Months? Years? And he said he expected years.

When the bleeds happened, they were potentially life-threatening emergencies. Still, I’d get patched up and leave the hospital the next day. Once they started coming much more often, anemia became a big issue until I got Injectafor iron infusions. I avoided remote locations and long airflights, but as nasty as they were, I now look back on the Bleed years (8/10 to 7/15) as the good old days.

I also haven’t had another bout of hepatic  encephalopathy [HE], one of the scariest ordeals of this whole PBC ghastliness. 

But there is a very low grade (comparatively) of HE, and especially when I am even more fatigued than usual, I can tell that I’m having trouble with short-term memory and learning new things. For example, my husband and I went to Washington DC last month, and I simply could not grasp the subway system. It’s hard to remember what day of the week it is; then again, there is little to distinguish them.

So what is ESLD? It’s odd. You will find a lot of sites with information on End-Stage Liver Disease, but there’s little mention of when Beginning becomes Middle goes to End. I’m not sure there is a Beginning or Middle variety. End-Stage Liver Disease [ELD]  itself is most commonly mentioned in discussing MELD scores; the M refers to Model, and a MELD score is a complicated and flawed scoring system for transplant urgency. The higher the score — and 40 or so seems to be the cap, the worse off you are. I’m at 12.

More often, I’ve found articles using a different terminology. The NY Times offers this simple comparison.

  • Compensated cirrhosis means that the body still functions fairly well despite scarring of the liver. Many people with compensated cirrhosis experience few or no symptoms.

  • Decompensated cirrhosis means that the severe scarring of the liver has damaged and disrupted essential body functions. Patients with decompensated cirrhosis develop many serious and life-threatening symptoms and complications.

But then there’s another approach using four levels.  

Here’s one that does it in three: inflammation, scarring, failure. I wonder if, since the liver is the only major organ that up to a point can regenerate new cells, it would be possible to get out of inflammation back to normal.

But cirrhotic cells are scarred and ruined; they aren’t going to come back to life. And my PBC continues to destroy the bile ducts, and this blockage continues to damage liver cells.

 

 

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3 thoughts on “This Thing Called End-Stage Liver Disease

  1. Hi, Just came across your post, though you published it ages ago. I’m behind on about everything these days! After many years with PBC I had a liver transplant in November. That puts me about seven months out; doctors say it will take a year to a year and a half to recover from the transplant. It has made a huge difference in my life, though it isn’t without its problems, and it isn’t a “cure.” Before transplant I had the bleeding varices, HE, exhaustion, itching, pleural effusions, you name it. Those are now gone. Drugs kept me “stable” for years until a transplant liver was available for me. It’s been a long journey, and I’m still traveling this autoimmune disease path. Just writing to say “Take courage!” You are not alone!

  2. Hi, Just came across your post, though you published it ages ago. I’m behind on about everything these days! After many years with PBC I had a liver transplant in November. That puts me about seven months out; doctors say it will take a year to a year and a half to recover from the transplant. It has made a huge difference in my life, though it isn’t without its problems, and it isn’t a “cure.” Before transplant I had the bleeding varices, HE, exhaustion, itching, pleural effusions, you name it. Those are now gone. Drugs kept me “stable” for years until a transplant liver was available for me. It’s been a long journey, and I’m still traveling this autoimmune disease path. Just writing to say “Take courage!” You are not alone!

  3. My Mum had enough to cope with..Late stage dementia, she started to complain of a bad back, we thought it was Arthritis, her eating was almost non existant..Maltesers !! On a Monday evening we had a call from her Dr saying she had done blood tests and these indicated Bone Cancer, We no way wanted Mum to go through any invasive tests, so we don’t know now what cancer she had , we think it was Liver and Bone, My mum died 2 weeks later, A terrible fight with the nasty disease, we sat with her the last 3 days and those days haunt me now, Swollen Stomach, Swollen Nose, Discolouring of her poor face, Why was she so hot ? and I mean scalding, I won’t list anymore, Two days before she left ,we had to get the nurses in 5 times during the night as she kept crying out in pain, Thankfully the last 24 hours she was not aware, I am haunted by these last days, can’t get them out of my head,
    I feel for anyone who is going through this xx

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