Thank you Mary for answering. I'm glad to hear that my husband isn't the only person with encephalopathy, that can go completely nuts when his ammonia levels are high. I'm not sure what the doctors think a psychiatrist can do for him. When he gets the first signs of high ammonia at home, even though I can't run labs on him, I give him extra lactulose. I've also found, as others have, that lower protein is the key for him. I try to explain this to the doctors, when I saw what they were feeding him this round in the hospital, but since I don't have MD after my name, I'm an idiot!
Grab a cup of coffee, and I'll give you his story. :) He was diagnosed with Hep C about 13 years ago. Failed Interferon treatments he was on for 1 year, and hadn't have any other treatment until around June this year. Like others I've been reading on this forum, my husband was a work-a-holic, high energy person that made my head spin! For years he dealt with edema in his legs and was treated with diuretics. He also had cirrhosis, when they did a biopsy when he was first diagnosed with Hep C.
My husband is an engineer for a huge company, and he works in cryptology. He also works part time as an event supervisor for the city. A job he works just out of sheer enjoyment. He's been on short term disability since Sept.23, this year, and I don't see him ever working again, unless he has a liver transplant.
In May of this year, he had a colonoscopy and endoscopy. That seemed to have started the ball rolling. I'm wondering if this had anything to do with it, but when I had these proceedures done last year, my doctor wouldn't let me use Fleet Bowel Prep, because he said since I'm diabetic, it's too much sodium, so he had me use Go-lytele. My husbands doctor gave him Fleet, so I called to make sure it was ok because of all the sodium, and they said it was fine. Well, about 3 weeks later, he'd swollen so much, he couldn't bend down to tie his shoes, and was short of breath. Took him to the doctor, then was sent to the ER to have a Parasentesis. They took off 6 litres. Was in the hospital a couple of days, felt better, then about 2 weeks after that, started throwing up fresh blood. Back to the hospital for banding of 4 varicies. Two weeks later, back in the hospital because he had dark blood in his stools, and throwing up dark blood. They said "someone dropped the ball and should have put him on Prilosec after the banding." While in the hospital, he started going downhill, not only was he in liver failure, but now he was in kidney failure. He was put in ICU because of low blood pressure and slipped into a 5 day coma because of not only his kidneys, but high ammonia levels. We live in Virginia Beach, and he was transferred by ambulance to VCU in Richmond to ICU. He was in restraints, because even though he was asleep, he responded to any stimulation like someone was trying to kill him. The liver transplant specialists, that we'd met with 2 months before, that told us he didn't qualify for a liver transplant talked to me, and told me his liver still wasn't bad enough for a transplant. He's still not even on the list! At that time, his MELD score was 26. His creatanine level was 4.8, and they got it down to 3.7 when they released him a week later. He spent his time in Richmond in the Hume Lee Transplant Center of the hospital, so I really thought maybe they'd walk in one day, and tell me he would be put on the list. NOT! They took him off all 3 diuretcs he'd been on, saying that was causing the kidney problems. The doctors here say he has hepatorenal syndrome. Doctors in Richmond disagree.
Thursday morning, my husband could barely breath, because of all the fluid buildup. It's always there, but gets to the point where the oxygen doesn't even help. They took off 3 liters, but said he had about 7 that needed drained, but the doc was afraid he'd go into shock. He did have some relief. They admitted him for "observation" but now it's Wednesday, and he was put in ICU yesterday. I could tell his ammonia levels have been going up since he got there. Blood test show it, but they wouldn't give him extra lactulose. I thought about taking some in from home, but figured they'd throw me in jail for giving him meds. I should have gone with my gut, and done it! The doctor told me my husband wasn't "complying" with taking his meds. Really? Makes sense to me, when a patient has high ammonia, won't take meds, and is difficult, to just let them slip into a coma. They're easier to deal with, I guess. I'm sick of doctors telling me that people with high ammonia levels, don't act like that. They think they only may get confused and sleep a lot. I feel like I'm dealing with morons. I've learned more on the internet. I did yell at one doctor, and told him to GOOGLE IT!! I'm sure they're about to restrain me in a bed!
I called the ICU nurse last night about 3am just to check on him. She said he wasn't any help when they were trying to change his bed. They're giving him lactulose through a nose tube, and he can't get up to go to the toilet because of his condition, but she's complaining because he wouldn't help turn himself over so they could clean him and change his bed. I swear I'm dealing with morons!
Yesterday, the nurse brought in a recliner to his ICU cube, and said I could stay as long as I wanted. Of course, I took care of him, so they wouldn't have to deal with him. I've always been told to keep ICU visits short. Anyway, I stayed all day. Everytime he woke up, he was confused and would start screaming, but you couldn't understand a word. I would pat his shoulder, tell him he was in the hospital and was getting better, and he'd be home soon. He'd go back to sleep.
Another episode of high ammonia with him was Oct. 11. We took him to the ER. He was being a total mean ass. They had a police officer standing by, so I called my sons in to play bouncer instead of having the cop to step in if he needed to. I'd rather have my sons man handle him. (BTW, my husband is 6ft 6, and 400lbs. I think at least 100lbs is fluid!.) They did labs, and his ammonia was 180. The ER doc said there was nothing else they could do for my husband, and I needed to have a "frank discussion" with his doctor. I went outside and called his doctor, but he was out of town, and talked to another doc in the practice that didn't know my husbands case. The next day, I spoke with his PCP, and he set him up on HOSPICE. I was just crushed! They were out and the nurse was trying to give my husband ativan and morphine. I told them if he took it, he'd go back into a coma and not be able to take the lactulose. Well, Hospice is there to help you die, so she didn't understand why I didn't want him to have the meds. Out of the blue, his gastro doc called and asked what in the world was going on at my house? He was in Chicago giving lectures. I told him what happened in the ER, that we were sent home, so he faxed me a note on his prescription pad that says if my husband is brought in to the ER, for hepatic encephalopathy, to admit him and treat him. How sad is that, that my family and I have to carry a permission note to take him to the hospital for treatment? He also said NOT to sign a DNR, because he'd never get a transplant. Hospice is now gone, because he was admitted to the hospital last week.
He's still not on the national transplant list. That's really all I want. I feel if his name is at least on it, there's hope.
Sorry for the long rant. I'm sure you've had to refill your coffee! :) I've got to get dressed and be the ICU nurse. Funny how I have to pay them so I can do their job.
BTW, my husband got hepatitis in the Navy, back in the 80's, but he doesn't remember what type. We've filed claims 3 times, hoping to find records of his 45 day treatment on the USS Eisenhower ship hospital, but each time we send for records, we're told, his medical file is empty! Sometimes there are just no breaks!
Everyone have the best day you possibly can.