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.
dansbrother, we are all guilty of wanting them to remain on this earth so you are not alone in that. We are at some level happy that they are no longer suffering and are finally escaping the ravages of the illness yet we don't want to let them go. I think the biggest sacrifice I made when my mother was passing was to tell het it was OK to let go. I can rest in the fact that she is at peace now. This helps me not to dwell on the past and her suffering. Life is for the living and I know that she would want me to and the rest of the family to do just that....Live.
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, 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!)
Connie-65 is still a puppy for heavens sake! VIEW IMAGE I have to admit that with all the information overload these days I'm surprised any of us can even function sometimes.
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
Shelly We don't have the results of the blood work yet. Jerry is doing pretty good tonight. Yes, he does have all his affairs in order but I just can not discuss anything with him. I can't even make myself bring it up. I'm just not ready to do that yet. I just keep hoping he will get on the list and get a new liver. We just have to keep praying. I promised the counselor today I would do something for myself every week. Now I just have to figure out what to do!! Tomorrow is another day!!!
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.
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.
Rainbeau where are you????? I hope you are OK
“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."