More on Hepatic Encepalopathy

[Leslie]

I read your comments to Fred about his friend with hepatic encephalopathy, but wanted to ask some follow-up questions about my husband's case.  My husband and I are both HepC positive from previous IV drug use (although we've both been completely drug-free for many years).  Unfortunately, my husband had an episode of hepatic encephalopathy about 2 weeks ago, and until then, we didn't realize he had cirrhosis---we had only recently found out he was even HepC positive.  You said in your answer to Fred that the prognosis depends upon "the underlying causes of the liver disease and whether it can be treated".  In my husband's case, the underlying cause of his cirrhosis or liver disease is HepC, as he does not drink alcohol.  At the time of his encephalopathy episode, he was given Neomycin and Lactulose after his release from the hospital, told to eat a low protein diet, and was given an appt. with a liver specialist in 2 weeks.  We just had our appt. with the liver specialist on Thursday (2 days ago), but both of us felt as if the doctor's attitude was pretty negative. He told my husband to stop taking the Neomycin, but to continue taking the Lactulose (2 tblspns. twice a day).  He did palpitate his liver and stomach and said the good news was that he didn't have any fluid build-up.  He also said that a low protein diet was NOT the right thing to do, as a damaged liver needs protein.  He said to eat a well-balanced diet, take a multi-vitamin, and he scheduled him for an ultrasound and more blood tests, but not a biopsy.  This doctor (who is a hepatologist) works at a County run facility that provides no-cost and low cost medical care.  Unfortunately I think the doctors there see so many patients with advanced liver disease who are still drinking or who don't necessarily care about their health that they don't care too much either.  Thankfully I just found out that I'm able to add him to my health insurance plan, so that means he'll be able to see a private physician.  Hopefully we can find a doctor with a more positive attitude about his prognosis.  Neither of us is trying to kid ourselves about his condition, as we both realize that he does have advanced cirrhosis.  But does that necessarily have to be a death sentence, just because he's already experienced one episode of hepatic encephalopathy??  I know I'm getting a bit off-track here and sort of going from subject to subject, but it's very frustrating when you go to a doctor who's a specialist in liver disease, yet neither of us felt as if he really cared much about anything except seeing his next patient.  So, I guess what I'm really asking here are several questions:
     1.  Does one episode of hepatic encephalopathy necessarily mean his cirrhosis has advanced so far that it's not even treatable??  (Remember, his cirrhosis is caused by HepC).
     2.  What can we do to further his life expectancy??
     3.  Is the advice we received about stopping the Neomycin but staying on the Lactulose sound correct??
     4.  What about the low protein diet??  One doctor said yes, but the hepatologist said not to go on a low protein diet, but to stay on a well-balanced diet istead (without alot of red meat though).
     5.  Isn't a liver biopsy necessary regardless, even though the episode of encephalopathy in itself indicates advanced liver disease??  
     6.  How can I get a recommendation for a good hepatologist in the Los Angeles area??
   I'd really appreciate your answers and help with this situation.  As for myself, although I've tested positive for HepC, I just had further blood tests done yesterday (i.e., viral load, etc.), so I don't know if I already have liver disease or not.  If my husband wouldn't have had the one episode of encephalopathy (he was very confused and disoriented so I called 911), we wouldn't have known about his either.  THANK YOU!!!!!!

[rosie67]

You are correct that the attitude of a doctor makes much of the difference.  Please seek another doctor for your husband who will fight for his life.  I hesitate to share my story because I don't want to frighten anyone here, but I lost a son to hepatitus C end stage liver disease due to negligence on the part of his doctor.  He was admitted to the hospital by his doctor for ascites and tests.  I was there the first day and the doctor seemed hopeful about a new course of treatment for him (he had not been responding well to the previous treatment), and said that they were going to give him some blood and drain some of the fluids and evaluate him and send him home to come into the office to start a new treatment plan.  He was lucid and his swelling was really not terrible.  The next day when I arrived, he seemed a little out of it and kept saying that they were overdoing the diuretics.  He had become somewhat of an expert on his condition and knew a lot about the medications.  He was on lactalose and more than one diuretic given throughout the day.  At home he was on one diuretic and was careful with it.  The next morning when I arrived I thought he was sleeping.  I sat for a while and then tried to rouse him.  I found he was unconscious, and ran out in the hall for help.  I saw his doctor sitting at the nurse's station.  I asked him what was wrong and he just said, "Oh, he has a medical condition."  I ran to the nurses and said he was unconscious and they came running into his room.  The doctor had not even told them of his condition; they too thought he was sleeping!  My son had complained about this doctor many times, saying he felt he just didn't care.  That was when I realized he was right.  The nurses got a staff doctor who informed me he was in a coma.  We all gathered to be with him and I slept there that night.  His doctor never spoke to us, just the hospital staff doctor told us it was hard to know if he would come out of the coma.  Well, during the night he slowly came out of it and the next day he was sort of out of it but responding.  The doctor came running into the room and shouted right in his face, "if your heart stops, do you want to be resuscitated?"  I was horrified at the way he approached him.  My son said yes and I followed the doctor out of the room.  He would not discuss his condition, but said he needed the answer to that question.  It went on from there for almost two weeks.  My son never really got stronger.  The staff doctor told us his kidneys had failed.  I asked why he couldn't have dialysis and was told because it was a condition called "hepatorenal syndrome" and dialysis wouldn't help.  I won't go into the suffering he endured.  He so wanted to go home and kept begging.   The doctor said he could.  It was obvious that he needed total care and that his condition was critical, but when he heard the doctor say he could it was all he wanted.  The day before he was to go home, he developed a fever.  I was sure the doctor would keep him, but I was there that evening when the doctor came into the room and said, "you're fine, you can go home tonight if you want to."  It didn't sound right.  He could hardly walk, he had a fever and he was not lucid.  The next day he came home.  The hospital called me in the morning and said we are sending him now, don't come here because we can't wait for you.  I had thought I would get instructions from the doctor before he came home. We had contacted hospice and they sent a nurse that first day who said the doctor had given her no instructions and no diagnosis.  They could not tell us about diet, they didn't know anything about his medications, nothing.  I called the hospital and hospice and said we can't do this.  Hospice called around and got medications delivered that night, but we had no idea about diet, etc.  He had a bad night and the next day when the hospice nurse came, she said he was "tired" and needed rest.  She put oxygen on him, saying it was a humid day and it would help him.  I asked her if he was dying and she was shocked, saying "of course not."  She said we would get everything organized and it would work out. Shortly after she left, he closed his eyes and died.  Just like that.  After being examined by the nurse and pronounced okay.  By the time the EMT's got there, it was too late.  I called the nurse the next day and said how could you not have known, we could have gotten help in time.  She said she was shocked too and that anyway, he was a DNR so no one would work on him.  That is what the doctor wrote on his record!!  I heard my son choose resuscitation, I also said that was absolutely what he and all of us wanted.  

After the funeral I looked up hepatorenal syndrome.  It is not a natural result of liver disease.  It usually happens in a hospital and is caused by over use of diuretics in trying to drain the fluid.  My son knew!!  He kept repeating they were overmedicating him with the diuretics.  It is a fatal condition, usually within two weeks.  The doctor never sat down with us.  He never told us.  He let him go home knowing he was at death's door.  He never told hospice the truth about his condition.  He never called us to offer condolences and he had seen my son for years.  He wanted him out of the hospital because if someone dies in a hospital it is required that an investigation be done into the treatment.  I feel he was taken before his time.  He did not go into the hospital swollen the way people can be at the very end.  He did not have kidney failure when he went into the hospital. He had plans for the upcoming holidays, he walked into the hospital and was in good spirits.  It was not his time.  He was taken by bad medical management and it didn't have to go that way.  I am telling you this so you will seek out the best for your husband; if I could turn back time I would have found someone else for my son, but he was very independent and although he complained that the doctor didn't care, he didn't want me interfering.  Oh how I wish I had insisted.  I will live with this the rest of my life.

[KjFlicka]

Seek out a hepatologist at UCLA where I'm pretty sure they have a transplant center. If not, I know Stanford has one. When I was diagnosed with cirrhosis, I just happened to be a stone's throw from a major liver transplant center and it was a major factor in my 'recovery' though mine was from alcohol. Take care.

[Skroton15]

My fiance has the episodes every 60 days and this time twice in one week. There are several reasons that can lead up to the ecephalopothy. Potassium too high, too muvh sodium, to much water can lead to diareah and then dehydration, to much protien and any other toxins that the liver can't process. Unfortunately it just happens sometimes the trick is getting him help ASAP. I have my fiance hold up his hands to look for flapping hands and I ask him questions like his name or birthdate or what day it is he usually gets stuck on one answer like "friday" is his answer to all the above.
If left untreated they can fall into a coma. Just thinkpositve and keep on trying to manage and figure out what leads to the episodes, food? My fiance is usually really sleepy prior to an episode. I hope both of our Signifigant Others have a lot longer to live!

[gisela6354]

To Test the Ammonia levels in the blood help to work on the encephalopathy.

That practically saved the life of my husband.

Take care