Encephalopathy question

Hello everyone. I'm new here and first wanted to say a big thank you. This forum has provided me with more answers than the doctors have provided. First, the story:
My sister is 44 yrs old and is an addict. She has currently been sober for approx 13 wks. From all I can see, she has ESLD. I have never heard a dr say this, only Cirrhosis, but it seems more than that. We are not next of kin so HIPAA laws make getting information directly from drs challenging. (Hubby is an addict also.) about 3 years ago she was diagnosed with fatty liver. She didn't sober up. about a year ago, she began the downward spiral I've read so much about on this forum. Frequent hospital stays, etc. Obviously, since she's not sober long enough, transplant list is out of the question. She tells us the Dr said her liver is too far gone for a live donation. (I don't know her "levels" of most things due to the previously mentioned issues of getting info.
Currently, she seems to be in the hosp every other week. She has edema in legs. She gets bouts of shortness of breath (prompting ambulance runs to hosp instead of driving her there). She has Ascites but the past few times they tried to drain, they said there are no pockets of fluid to drain...they said the fluid is being absorbed in the deep tissue (like a sponge). Her ammonia level spikes and she gets Encephalopathy. Her ammonia level on Thursday was 48 (or 49?) and is coming down. She is on Lactulose and is currently in the hosp - they just increased her Lactulose to 3x per day to reduce the ammonia.
This time the confusion is worse than in the past. She's weepy at times, feeling sorry for herself. At other times, she's demanding, she wants it now! So, her tolerance for the nurses is almost non-existent. This makes it difficult for the family getting phone calls from her at 5am saying that the nurses aren't helping her and they don't have time for her. Visiting hrs don't start until 12n, but the hosp is very understanding and I was there at 9am yest because she told us she couldn't get to the commode because they wouldn't help her. We just feel terrible when she's calling, crying.
So, now that i got that out, my big question is - are there warning signs to the Encephalopathy? To me, it seems to come without warning. She is confused on and off, but this is full blown and she was somewhat coherent on Thurs morning, by Thurs night was rushed to hosp and was totally out of it. Are there warning signs we can look out for?
Thanks for listening and for letting me vent.

Thetrix, I want to welcome you to the forum.  I'm sorry that your sister is so ill.  It does seem that she is in ESLD.  Some of her mental changes may also be attributed to the long-term alcohol abuse.  You can read more about that here:

http://www.choosehelp.com/alcoholism/wet-brain-2013-alcoholism-and-wernicke-korsakoff-syndrome

Of course, the increased ammonia levels also play a part.

Although I haven't experienced end-stage encephalopathy, from the posts I've read here it does seem to happen instantaneously.  They can be lucid one moment and mad as a hatter the next.

Again, welcome.  You will find a lot of support and information here.

Hugs,

Connie

Have you read some of Shadowsghost (Sue's) old posts?  She had quite a time with her husband, who seemed to have delusions of grandeur (while outside in the nude.)

shadowghost, naked gardening. bet the neighbors loved that lol. sorry i know but it sometimes they can be hiliarious right. encephalopathy can be a pain, my mom got it bad the first day and only day awake after her surgery. i know it can come on suddenly and its not a fun thing for the family to watch

Prior to a liver transplant, I had encephalopathy to a minor degree. Even though I knew what was going on, things moved more slowly and I often felt "slow," as in stupid. I was taking 30 cc of lactulose or enulose twice a day, along with xifaxin 200 mg x 2. The meds helped some. Towards the end, I had tremendous swelling of my legs, so severe that I was hospitalized twice. The second time I was given iv lasix, spironalactone and iv albumin. Within six days, I shed 27 pounds of fluid from my legs and felt great. On the other hand, my MELD score went from 18 when I was put in the hospital to 24, 8 days later. Two days after that I received a liver and a week after that, no more encephalopathy. There's no question that the lactulose and xifaxin helped, plus I was eating a semi-vegetarian diet, with little salt intake. Every little bit helps. Stay well. **David**

Thetrix, thanks for the updates.  I am on both Lasix and spironolactone.  I was told that the Aldactone is a "mild" diuretic.  It's main purpose in my case is to keep my potassium levels normal, as the Lasix leeches it from the body.  I hope that the Aldactone alone will work for your sister.  I have no idea about the clots/nosebleeds, unless she's on a blood thinner.  Liver patients sometimes have a problem with clotting factors.

Please continue to keep us updated.

Hugs,

Connie

Wow, i can't believe your ammonia was that high! 395?!?! No wonder you were out of it. Thanks for letting me know about the signs you, yourself, can look out for. I'll pass this along to my sister. It's also amazing what you said about your UTI - i forgot to mention that the last hosp stay for my sis, she had a UTI too. Gee, that's weird.
Oh, and i'm sure the more frequent members will welcome you officially, but welcome. I'm new too and I'll tell you, you will find comfort and lots of good information here.
Trix.

Siloamsandy, welcome to the forum.  I'd like to suggest that you start a new topic to introduce yourself to the other members.  (You can copy and paste your above post...just click on New Topic instead of Reply and put it in there.)  When you initially post on another member's thread, you can get overlooked.

I was also diagnosed with hep C in '93.  It caused liver cancer and I had treatments and then the rt. lobe removed in '07.  I've been in remission ever since.  There is a new hep C treatment which involves 3 drugs and is only taken for 24 wks.  This will be widely available the beginning of 2011.  Meanwhile, when you sense your ammonia rising, you can increase your Lactulose right away and not wait for an emergency situation.  BTW, I haven't had any UTIs.