Education: Stages of Liver Disease

Hi Everyone: Many of you are aware of the different stages that determine how advanced the diagnosis of liver disease is determined. On the other hand many do not. I thought that it may be helpful to post them so we can all see what the criteria is and what the symptoms are for the different stages. The following list may seem a bit ambiguous but to date it is what Dr’s are using. It is called the West Haven Classification System.   Stages of Liver Disease: Stage 0: Minimal encephalopathy. The changes are almost undetectable because the changes are minimal. Some minor changes in mood and concentration. The marker is the inability to maintain concentration. Stage 1: Sleep disturbances (often sleeping during the day and awake at night, hypersomnia, or insomnia), mood swings including depression, irritability, and sometimes euphoria. Increased talkativeness, poor concentration, poor attention span, restlessness, and often some tremors in the hands.   Mild confusion is noticeable. They have minute changes is concentration, memory, and coordination.   The patient isn’t able to do some basic arithmetic like adding and subtracting numbers or drawing figures like stars or circles. Possible Asterixis (arm flapping when arms are extended). Stage 2: Some noted arm flapping (asterixis) when the arms are extended, changes in reflexes (usually slower), difficulty with articulating words, and uncoordinated muscle movement. Lethargy or apathy, slurred speech, noticeable difficulty performing mental tasks, inappropriate behavior, drowsiness, noted personality changes, disorientation especially regarding time, possible sweet odor to their breath called “Fetor Hepaticus”, and a decrease in body temperature may be present along with rapid breathing “hyperventilation”. Stage 3: Aggressive behavior, talks in monotonous tones, an increase in reflexes, decreased level of consciousness, sleeps a lot but can be aroused when you wake them,   increased confusion and disorientation, at times incomprehensible speech (muttering nonsense) occasionally they will have fits of rage, amnesia, and can not perform mental tasks. Probable “Fetor Hepaticus”. Decreased body temperature is often noted. They sleep most of the time. Stage 4: Coma   I hope this helps you all to at least have some idea at how the Dr’s determine how severe the liver disease is. This does not address lab values. It is solely based on behavior both physically and mentally. Shelly  

Shelly  Re-the stages of Liver Disease-Do all of these symptoms apply if they are taking medication.  Or does it matter.  Jerry has had all of those symptoms at one time or another.  But they seem to get better at time then come back.  He is just now starting to get sleepy  a lot.  I thought that was due to dehydration.  I looked in to his eyes tonight and they have this strange look to them.  Its like they have no life!  I'm not sure how to explain it.  For the first time the lactalose doen't seem to be working as well.  He gets a dose every hour until he has a BM.  Normally it gets things going but the last few days it will get things going then stop again.  Could it have something to do with dehydration?  I think I'm just grasping!!  I want him to go to the hospital so they cana make him feel better so he can come home and I can have him a little longer.  Selfish I know I'm just not ready to give up.  Not tonight that is!!!  Tomorrow morning we go for blood then to counseling then home to wait.  I will keep you posted.  Thank you so much for giving up your time to help us all. 

JoAnn

JoAnn, I am so sorry for what both you and Jerry are going through.  Please let us know the outcome of the labs, etc.!  I remember an orthopedic P.A. encouraging me to get hep C treatment over 5 yrs. ago (prior to the liver cancer diagnosis), saying that dying of liver failure is "not a pretty sight."  Now I understand what she meant.

It's odd, but I don't remember seeing ammonia in any of my lab work.  Do they only test for levels of ammonia if there are symptoms of confusion, etc.?

I do have my nights and days mixed up...hard to get to sleep before 3 AM.  Still tired all the time, though not as bad as prior to the liver cancer being eradicated.  I also have the "dropsies."  Some days it is really bad.  My short-term memory has gotten much worse in the past few years.  It's hard to know what can be attributed to liver disease and what may just be natural aging (I'll be 65 next week!)

Hugs,

Connie

Hi Connie.  Its funny you should mention about ammonia levels.  Jerry's liver Dr. at Vandy was telling us liver Dr. never check ammsonia.  They just go by the way the patient acts.  The gastro Dr. here do it a lot.  But I have learned to watch for it.  You can smell it when its bad.  Jerry has only have a few episodes when he actually gets goofy!  One of those he wore my bathrobe to the hospital.  I can laugh at it now but at the time I was new to ammonia problems and it really scared me.  Jerry is doing pretty good this evening.  We had blood work today then went to our counseling session.  I'm the one that is unloading to the counselor.  Jerry just sits there.  High ammonia and all.  The counselor doesn't really think Jerry needs him any longer but we are just trying to keep Vandy happy.  Besides I'm getting a lot from the counseling.  It gives me a chance to unload.  Its almost midnight here and I need to get to bed.  I'm feeling a little better today maybe because I got some good sleep this weekend.  We did not get Jerry's blood results today yet.  He has started vomiting some each day.  That is not going to help his dehydration.  He can hardly stay awake now.  I try and get him to walk some every day his muscles are just wasting away.  Its so hard to look at him.  He's like a walking skeleton.  Even though he is still eating several small meals a day.  I will let you all know as soon as I know what the next step is.  Thank you so much for taking the time to care in the mist of all your problems.  Makes me feel bad for even complaining

JoAnn

JoAnn. I understand truly I do. You have to do what's right for you. I am hopeful that Jerry gets a new liver soon too. I get so frustrated with the whole process as it seems like they dangle a carrot and you just have to hope you can run fast enough to get it. Maybe it's just me and my unwillingness to accept defeat. Did you ever find out about the appetite stimulant? I can tell you it really helped my mom as far as her eating went. After 2 months of barely eating 500-600 calaries a day she zoomed up to about 1300-1500 a day. It was  GOD send for her and us. As for doing something for yourself I whole heartedly agree. You are probably worn to a frazzle. Do you have a day spa near you? Maybe a little pampering is in order. It would certainly give you some much needed R&R. You wouldn't have to an all day thing if you don't want to but you could do 3-4 hours maybe. A nice soothing massage/rub down, a facial and maybe getting your nails and hair done. It sounds really good to me as I'm writing this. Makes me want to sign up right now, ha ha.

 Hugs, Shelly

1Shelly1 Good morning Here I am another puppy not able to sleep at 2:50 am. I can still balance my check book, have rarely had the body odor, only had a mild like coma I sort of lost 3 or 4 days woke up in hospital. Thats when the whole ball started rolling down hill. As far as the stages you mentioned. I have had them all , I think they are getting worse because my husband seems to be getting a bit annoyed with some of the things I say and do. Especially the talking. But who am I to talk to if not him . No one wants to hear the sad story every three minutes because you forget you've already told it. My short term memmory is totaly messed up especially when my ammonia levels go up. I just don't understand it I eat basically vegetarian meals only have cheese and eggs on occation. My source of protein is Soy milk and soy products. Well my ammonia leveles had gone down slowly in the past year , three months ago they were less than 14 last week they were over 100 .
What I am curious about are the physical stages of the disease. I have minor swelling of the ankles. But I'd like to know when in the stages of 1-4 is that physical problem or is there any order to it. Not that I want any more. The mental part is bad enough. Any response from anyone would be appreciated. june.

June  I have noticed with Jerry that all the symptoms are getting worse.  The flapping and sleepy are much worse the and lactalose isn't working as well and even when it does he still is shaking and sleepy which is high amonia.  They have now put him on an antibiotic.  AFter two days I am seening a big change.  I kept telling the Dr.'s here that when ever he was on an antibiotic (twice this last winter for sinus infection and every time he is hospitalised) he just snaps out of his feeling rotten and gets so tuned up.  He starts eating alot more etc.  I hope this helps.  Hang in there.

JoAnn

Rainbeau where are you?????  I hope you are OK

June, I can tell you that if you were on xanax for anxiety attacks it is extremely addictive. I also suffered from anxiety attacks and went to ER several times because I thought I was having a heart attack. They are so horrible aren't they? I started doing some old fashioned things to get some control over them. When I felt one coming on I immediately put ICE WATER all over my face and neck, I open the freezer door and actually stick my head in, I rub ice up and down my wrists and neck, and I do the pursed lip breathing. (Deep breath in thru the nose and blow it out slowly from your mouth). After awhile I was able to gain some control but I still had tachycardia (rapid heart rate). They did an echocardiagram and found that I had a mitral valve prolapse. The Dr told me it was benign but that the anxiety attacks were probably related. They put me on a medication called Atenalol .25mg a day. After about 2 weeks on the medicine I stopped having the attacks.
Now for your not sleeping-that's a whole new ball game. I worked midnights for a long time and I took 25mg of benadryl for a few weeks to help me sleep. I think I would have gone into coma with 100 mg but I am very drug sensitive.I had a problem with it because I started having nightmares. I stopped the Benadryl. I am not sure if you can take Melatonin or not you would have to ask your DR. Do you have any idea why you can't sleep? Such as anxiety or fear of falling asleep? I ask that because I know that with cardiac patients they suffer from acute insomnia. It is very common with patients that fear that they will die in their sleep so they simply don't sleep except cat naps. Fear can do us so much damage it's amazing.

Hi June, it sounds like you may have a Mitral Valve Prolapse with Regurg. That means that the valve is malfunctioning and some of the blood that passes thru the chamber goes back up into the chamber because the valve doesn't shut tight. Simplistic explanation I know but I think you get the picture. I worry what is happening to you as a result of not sleeping. There has to be an alternative to medication. Your fear of dying in your sleep is a common problem with some people. The rational part of us knows that when your time is up it won't matter if you are sleeping or awake. The irrational part of us says if I don't sleep then I won't die. It is really difficult for some people to keep the rational part of our brain dominate isn't it? Well, at least know that your fears are common among ill patients. On the other hand you are going to have to fight the irrational fear and get some needed sleep. Our bodies heal best during sleep-did you know that? That's why when we are sick with colds or the flu or whatever we are so tired. Our bodies are screaming at us "Let me sleep will ya?" When you stay awake when you need the sleep you are actually making things worse. You are utilizing energy that the body needs to recover. We need to put our heads together and find a healthy solution.

Just wondering, Does the disease progress in this order or is it possible to have symptoms from different stages that surface and then disappear? The reason I ask, I have seen the asterixis, and various other symptoms of stage 2 as well as many symptoms of stage 3. When he was really bad before he was diagnosed he did slip into a 3 day coma at home which would indicate stage 4. Now, with the medications he stays pretty much bouncing between the symptoms of stages 1, 2 and 3, depends on the day. Is this usual?? I had thought some of the symptoms might be from ammonias getting to high but he drinks a good bit of lactulose lately to help reduce this.
He has had a fairly good last few days, No ascites in the lung this week for the first time in almost 2 months!!! they did draw 3 liters from his stomach but that is much better than what they were getting :)
Therese

thanks shelly, yes it does make sense. The local dr stage he was end stage, level 3 but we go to St Lukes Hosp next week for the testing toget on the transplant list so hopefully we will get a MELD score and get him on the llist

Hi I am new to this forum my brother was diagnosed with sarcoidosis about five years ago that disease causes excess scar tissue to build in your major organs they put him on steroids at first to try and treat the scar tissue in his lungs. On March 11 the doctors informed him that the disease had taken over his liver and there was nothing else they could do. His is now on an at home Hospice program due to the liver failure he has alot of swelling in his legs and lower abdomen. He has in the past 4 days become very disoriented and sleeping alot. I was wondering if anyone out there had any helpful information for us my brother is only 35 years old and he is the only brother I have.

Hi Christina,
Please slow down so that you can make a plan for your financial survival. From what you've posted, I think it's way too early to be thinking about "the end". While cirrhosis and liver tumors are a part of liver disease, neither are necessarily 'final indicators'.
I am no expert but have been diagnosed with liver disease of one sort or another for as long as you have been alive. My point is that I have had plenty of time to consider the diseases and additionally was blessed having one of the nation's top liver researchers as a neighbor for 4 years.
Many of us have had cirrhosis for many years and my understanding is that it is simply a symptom, a deadening and hardening of the liver, causing reduced liver function. So the degree of cirrhosis is key to how it will affect you.
The tumor(s) are another scaled factor. I was told that if a tumor is not cancerous, monitoring its growth is critical and if it is aggressive or there are too many, it becomes serious and additional points are added to your MELD score, which determines placement on the liver transplant list.
So as an amateur, I suggest that you make a list of questions for your doctor so that you fully understand where the disease stands. If you don't have financial resources, I suggest that you immediately contact a free advocate organization. I don't know who that might be but others on the forum can probably guide you. Based on my experience, I suggest that you not quit working until you absoluty must so that you put some savings away and sign up for any assistance that qualify for, Medicare, Social Security, etc.
I'm sorry that you need to deal with this disease -- it's not easy and society often is not helpful.
I hope that we get to spend a lot of years posting about our situations. Stay positive and plan well ahead so you'll be ready to deal with survival.
Sorry to offer so much unsolicited advice but I know how many people think that life is over and are delivered. I trust that you'll be one of those people.
Be well, John (if you have a chance, do the Sam Spade walking tour. it's too cool)
PS - If you can do MRI's instead of CT Scans, you will do a lot to head off other problems. It appears that CT Scans expose you to outrageous levels of radiation while MRI's are magnetic. J