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Posted 5/24/2014 2:58 PM (GMT 0)
Everyone is different and the test is unreliable. They generally put the sample on ice and rush it Stat to the lab. If not analyzed quickly the sample quickly degrades and the results are not valid.
Docs generally judge by symptoms.

And...though everyone talks about ammonia, it is one of the by products of digestion that get trapped in the blood.
Posted 5/24/2014 3:13 PM (GMT 0)
Yes, it is possible. For all intents and purposes, the ammonia 'damages' the brain - it can take some time for things to settle down in there. How are his kidneys doing? When there is renal damage/failure, a person can have very similar symptoms to HE - confusion, memory loss, aggression, even hallucinations.

(And ML, once again we're writing at the same time! Lol)
Posted 5/24/2014 3:40 PM (GMT 0)
Hi...I have been able to watch HE go from nearly absent, to a hepatic seizure over the last 1.5 year, and back to normal range. With your husband's ammonia being normal, it would be unlikely he has HE "when they pulled the blood".

One thing that may be part of his personality change now may be due to him not drinking, and him coming to terms with the disease ....all at the same time. Just dealing with sudden disease requiring acities and taps would be a tough pill to swallow. And at the same time he is newly sober, he has no support group. I am not sure, but he may have friends (drinking buddies) that no longer are interested. And he may not be able to work anymore. It is tough!

The one thing you said to us was "the look on his face that is hard to describe". For me, this is the very first clue my guy is drifting in a bad directed with his HE, and agitation, anger, and obstinate. The 2nd thing is his need to lay down and he is sleepy. And then the "stiffness....like he is out of shape or arthritic, which he is neither of the two. And about this time he decides to do things like climb ladders and fix something, or thinks he can still drive. Just risky behavior. Then staggering and sloshy drunk appearing. (And my guy was not alcoholic or a drinker, so this is very bizarre to see. He quit social drinking in 2003, before he was diagnosed with Hep C.) Eventually, he just sleeps, can not feed himself, forgets how to work a remote, phone, or coffee pot. And hallucinations become part of it. Until themister gets to the point he can not make coffee or realizes his hallucination is not real....he does not believe anything is wrong with him.

That is how it rolls at my house. I would discuss what you are seeing with his Hepa. My husband had ammonia 89, 104, and seemed pretty good. Another time it was in the 60's and he was in bad shape. He was 360 when he was admitted after a hepatic seizure with hallucinations.

And kidney problems or electrolyte problems can also cause similar symptoms. We have not had that problem, but others have.

Does your husband take any meds other than the 2 diruretic's?

Big Hugs, I hope this helps now, or in the future.
Posted 5/24/2014 3:57 PM (GMT 0)
Oh, and here is one test that works for us. Pick a number in the 30's and ask your husband to count backward by 3's. Do it when he does not seem compromised. Then do that test a couple times per day. You will see how long it takes, and if he misses any numbers. When themister is fine, he can rattle that off in seconds. When he is swimming in ammonia, he misses numbers, has to search for numbers, fakes that he is "just kidding"....but basically, can not do it.

I think it was David that said he used tying his shoes as a guide for him. He will probably chime in ;)

The flapping hands test is not the best indicator for themister, but it is the one the doctors like to use. They do not live with this everyday ;)
Posted 5/24/2014 4:02 PM (GMT 0)
In the days before Robert went into total renal failure, I thought the symptoms he was having were from the H.E. - he was getting confused and struggled with forming words/sentences, staring at his phone because he couldn't figure out how to find a number or send a text, etc. I'd seen these things a hundred times before - so I ramped up the lactulose. How wrong I was. The symptoms were actually being caused by his failing kidneys. Don't know how to ever forgive myself for that.
Posted 5/24/2014 4:04 PM (GMT 0)
he is on the diuretics a magnesium pill Prilosec and a multi vitamin which he is currently out of it has been added to the grocery list. I got up about 7:30am this morning and he asked me to close the windows and the shades in the bedroom so he could go lay down so I did I asked him what was wrong and he said he didn't feel good and went to bed and he has been sleeping for a while now and I am going to let him sleep as he doesn't get very much of it. I am worried he is soo weak! This might be a stupid question but how do I know if he needs to go to the hospital?
Posted 5/24/2014 4:06 PM (GMT 0)
Hey themiz! Well I definitely think I need to get some sleep.....had a bit of a hard time counting back by 3s! smhair
Posted 5/24/2014 4:09 PM (GMT 0)
SM, the weakness and extreme fatigue really is normal. When to take him to the hospital? That's a tough question, but if it got to the point where you couldn't rouse him fairly easily I would give his doc a call.
Posted 5/24/2014 11:48 PM (GMT 0)
what are the symptoms that he would have if his kidney's are working right?
Posted 5/25/2014 12:45 AM (GMT 0)
First off, I was lucky that HE had been explained to me and I had a bottle next to the bed. First thing in the morning I'd take a big gulp of it, no matter how things felt. The taste didn't bother me as much as most people say. Then it was time to sit and read in the library. After that, time to get dressed and as themiz said, I'd tie my shoes. If it took more than a few seconds, time for another round of lactulose, and sometimes another, 'til things were clear. Feeling stupid clued me into how bad my ammonia level was. Xifaxin made a huge difference, though the lactulose was still a must.

As for what to look for with his kidneys, dark urine is a tip off that somethings off. He needs to be drinking at least 3 quarts of water a day to keep them flushed out.
Posted 5/25/2014 1:22 AM (GMT 0)
he is only aloud to have 1 liter of fluid a day....he is having trouble urinating it is better for him to sit down and sometimes he cant go at all
Posted 5/25/2014 3:01 AM (GMT 0)
I know about that. The docs kept jerking me back and forth. First they had me drink tons of water, then at one point, I was hospitalized with edema and was only allowed 1/2 liter per day. Then back to 3 quarts a day. It's a balancing act.
Posted 5/25/2014 4:17 AM (GMT 0)
Hi SM! Some symptoms of kidney dysfunction/failure are very similar to H.E.: confusion, memory loss, agitation. Other symptoms are: lethargy, general weakness, decreased appetite, swelling, increased BP, and rapid breathing. Even though your Dad is restricted to 1-liter of fluid per day, he should still be urinating fairly regularly. You mentioned that sometimes he isn't going at all - if that continues and he also has any of the other symptoms, his doctor should definitely be contacted.
Posted 5/25/2014 4:58 AM (GMT 0)
Hi,, My husband also has end stage liver disease,, Your husband needs to be drinking lactulose to help his bowels move,, My husband is on 50mg of spironolactone and 20 mg of furosemide a day I up the water pills if his angles are swollen then I decrease the pills when his swelling goes down,, I have been caring for my husband for 3 years now, and you have to use your own judgement when it comes to caring for him, I would ask the doctor for the tips procedure for him because of the varises even though they are small,, My husbands were small, next thing you know he vomited blood I rushed him in , ne was on life support for 6 days and in the hospital for 20 days,, bad HE,, but the lactulose helps with the HE, I just watch him.. The tips has really worked great, It has been 3 years since they did it,, It is easier to have the procedure done before a bleed out,, speak to your doctor about it,, And if your husband ever vomits blood, don't panic call 911 , If you have any questions just ask,, I have learned a lot in 3 years trial and error,, take care
Posted 5/29/2014 9:36 AM (GMT 0)
Hi everyone!

Just thought I would give you an update. I finally got hubby to the right place. He is now in Henry Ford Hospital. Oh it is so nice to finally get some answers. He is in Kidney failure and not doing well. I new something was wrong and I could see him going down hill but I had a heck of a time trying to get help. We went to see his GI well we didn't see the dr we met with the NP and told her all of what has been going on the dr had ordered some blood work said something about a liver scan and sent us on our way she said she would talk to the dr about maybe admitting him to the hospital so that they could do all of the testing at once. So she called back later yesterday afternoon and said the dr would not admit him him he needs to be seen by a hepatologist and to either take him to Henry Ford Er or to take him to Ann Arbor Er. So I put him in the car and away we went. I was desperate and I finally feel like we are going to get the right kind of help. Not sure if he will have a chance to do what needs to be done as his kidney's are failing. A lot of work has to be done yet but I have hope. Its time that Hubby takes responsibility for his actions and chooses life or death.

Anyway, after a night of not much sleep I sit here with my coffee and thought I would post. I am wondering if any of you have had renal failure or had problems with your kidneys also? I know that some of you feel that my husband is not doing what he needs to be doing and I totally agree with you so hopefully now we can get the help we need. I want hubby to understand exactly what is going and what he needs to do so that we can get him on a transplant list but I want him to hear it from the dr's firsthand. Then I can have a conversation with him on a choice that he needs to make.

Thank you for listening to me and any help or advice that you can offer would be much appreciated.

Sasha's Mom
Posted 5/29/2014 10:03 AM (GMT 0)
SM, At least he is moving in the proper direction and that's all that matters for the moment. It's a long road to recovery and some of those hills become mountains, Best not worry about about what's over the next peek. Long term goals are just that but they must be set. Short term goals are a must. He just got one down. Congrats.

I was in renal failure when I was admitted in 2008 but my kidneys came back in about a week or less. They are pretty durable compared to livers.



Ziff
Posted 5/29/2014 1:51 PM (GMT 0)
Hi SM - I'm constantly watching my kidney numbers, along with my doctors of course, on a weekly basis. I'm down to one (other removed due to cancer) so it's really getting hammered hard with all of this liver stuff - PHT, diuretics, taking over for the lazy liver, etc. Creatinine levels tend to bounce around up to 1.75 or so but the kidney's hanging in there. I make sure I do exactly as my docs instruct me to do. It's been about a year now of watching it perform but like Ziff mentioned, pretty durable little suckers. Kinda strange walking around each day with ESLD, PHT, ascites and advance kidney disease but life goes on. Good luck and hope things work out well for you and your husband.
Posted 6/1/2014 12:55 AM (GMT 0)
So things are not going well, I brought my husband home today under hospice care. His disease has progressed to far to do anything for him as his body is not producing much urine. The kidney doctor said that they could try dialysis but there is not guarantee that they could even do it as his blood is too thin, they could have given him something to help with they but they still weren't sure that the dialysis would help him at all. So together we made the decision not to even try and to bring him home under hospice care and I will take care of him. I have a wonderful support system with my family and friends I am not alone. It has been a crazy couple of days and a lot of arguing back and forth. I truly have seen just how selfish and stubborn my husband is, doesn't matter what I want I have had to yell at him at least twice over the last couple of days, called my parents and brother who is a paramedic and also a recovering alcoholic with 15 years of sobriety to come and help me argue with him as all he wanted to do was go home, I just wanted a little bit of time to get everything ready but I really had to fight with him to give me the time, thankfully his phone battery died and I did not hear from him again today until he came home this afternoon. We have stopped all medication I have Ativan and morphine if and when he needs it. I just wanted to bring him to and give him what he wanted. I am as prepared as I can be and all I have to do is pick up the phone and call and I will have plenty of help, he can still walk ok and he finally ate something and drank a little bit of water and is now sleeping it has been a long couple of days and everything has moved so fast but I love him and I will take care of him to the end.

Thanks for listening and if you can please say some prayers for us.

Sasha's Mom
Posted 6/1/2014 1:47 AM (GMT 0)
Wish you didn't have to go through this. I will keep you and your family in my thoughts.


Ziff
Posted 6/1/2014 2:12 AM (GMT 0)
Ziff is right on the mark. Liver disease sucks. You sound better prepared for whatever comes in the near future than many caregivers here. Be well.
Posted 6/1/2014 2:40 AM (GMT 0)
SM,
It sounds like a very rough week. I think it is good you were able to get to a good hospital and discuss all the options together. You sound strong. I wish you and your husband peace as you move forward in the days ahead. You're both in my thoughts, Big Hugs
Posted 7/10/2014 1:41 PM (GMT 0)
Hello All:

I am still here and so is hubby. When he was released from the hospital the dr's told us a couple of days to a couple of weeks well here it is almost 6 weeks later just goes to show you Dr's don't know everything. He is getting weaker and he has fallen a couple of times. The hospice nurse comes once a week unless I need more I just pick up the phone and call. He is still eating a little bit and drinking a little bit and but he is getting weaker by the day so we are just taking it one day at a time. I didn't realize that I am as strong as I have been this is very hard and exhausting but I am doing the best I can to take care of him and bring him some peace.

Please say some prayers for us that hubby finds peace!

Thank you!

Sasha's Mom
Posted 7/10/2014 1:43 PM (GMT 0)
Prayers on the way from Florida...Mama Lama
Posted 7/10/2014 2:00 PM (GMT 0)
and from Massachusetts!...Mae
Posted 7/20/2014 1:02 PM (GMT 0)
Hello-
My husband just got dx with liver disease with yet to be confirmed full cirrhosis. His is non-alcoholic related. He is going to have paracentesis, due to severe ascites, tomorrow and is scheduled to see a GI doc and a liver biopsy completed soon to confirm the extent of the damage. We are in the early stage of discovery and I'm terrified. Reading medical articles online didn't help and I have been crying on and off.
However, after reading through this forum, it gave me a better perspective and definite hope that there will be a better prognosis.
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