Encephalopathy question

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thetrix
New Member


Date Joined Jan 2010
Total Posts : 4
   Posted 1/31/2010 8:01 AM (GMT -7)   
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.

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 1/31/2010 10:27 AM (GMT -7)   
Hello trix, Glad your finding good solid info here and sorry about the way you came to find this site. Actually ammonia levels can change so quickly that sometimes you dont know till she isnt making sense, there are times where you notice small changes and the enulose may help if she takes it as soon as you notice. My honey would be fine then suddenly be running for president and very upset that the limo is late! Yes she does need to be sober alot longer to be listed for transplant, is her husband in recovery also? That can make a difference in her recovery. I wish you the best
Sue
When I started counting my blessings my whole world turned around.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/31/2010 11:05 AM (GMT -7)   

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


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


thetrix
New Member


Date Joined Jan 2010
Total Posts : 4
   Posted 1/31/2010 11:09 AM (GMT -7)   
Thanks for the info, Sue and Connie. I have just in the last few weeks of lurking here learned so much that we haven't been able to learn from the docs! There is so much comfort here.
Unfortunately, her hubby is still using. When my sister is not in the hospital, she's been staying with my parents mostly. Most of the time she realizes that she can't be sober while living with him because he uses.
I'm glad to hear that it's not just my imagination that it can rise quickly. She just told us this morning that her levels are up again just since last night. Taking everything she says with a grain of salt because she is so confused.
Speaking of presidents, in the ambulance when they asked her "who is president?" she replied Obama Bin Laden. lol. It shows how the confused mind works, they have bits of information, but can't seem to put it together completely.
Thanks, Trix

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/31/2010 12:04 PM (GMT -7)   

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.)

 


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 2/1/2010 6:40 AM (GMT -7)   
Trix, Hep is right, my Doug always had a great sense of humor so even when confused he was still funny as a lark. He did naked gardening at 3am..... he insisted I tell him everything that he said and did while confused so we could laugh. Not laugh at him but more about seeing the humor in the way the mind works. Laughter got us through many years and even though he is gone I still get a chuckle from some of the antics...... thanks hep for reminding me
Sue
When I started counting my blessings my whole world turned around.


worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 2/1/2010 8:49 AM (GMT -7)   
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
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 2/1/2010 8:53 PM (GMT -7)   
Hello thetrix and welcome to HealingWell. In answer to your question is there any warning that it's coming on........the answer is sometimes.
I learned to pay attention to what my husband was eating. Whenever he ate beef.......I could bank on his ammonia levels rising. And I think it depended a lot on how much beef he ate that affected the speed of the rising. Most times he would get cranky or really quiet right before he had an episode. And if he was cranky I could never get him to take his lactolose. Needless to say we took quite a few trips to the ER for it. Infections also play a part in the encephalopathy. So monitor his temperature regularly.

Again welcome to our family......thoughts and prayers.......
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 2/2/2010 9:31 AM (GMT -7)   
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
New Member


Date Joined Jan 2010
Total Posts : 4
   Posted 2/18/2010 10:02 AM (GMT -7)   
Hey everyone..didn't know if I should start a new thread or keep this one going but wanted to give the updates. My sister's last hospital stay was the longest so far. She went in on 1/28 and was not released until 2/18. Her ammonia levels just would not stabilize. She also was switched from Lasix to another diretic, spironolactone (generic for aldactone), which seems to be working much better for her than the Lasix.

Her new symptom, for which she's been rushed to the ER twice this week is nosebleeds. Uncontrollable clots. They cauterize it and send her home. One Doctor said they could be coming from the blood clots on her liver..but i'm not entirely sure.

i'll keep you all posted..

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/18/2010 10:55 AM (GMT -7)   

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


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


siloamsandy
Regular Member


Date Joined Mar 2010
Total Posts : 46
   Posted 3/2/2010 12:21 AM (GMT -7)   
Hello, everyone. I am new to this forum. I am 56 yrs old, diagnosed with chronic hep c in 1993, and was going along just great until recently. I took the the combo treatment back in '99 and when that stopped my numbers came back up. Just recently found out that I am Type 2, and that the treatment should have worked. But it didn't. I have esophageal varices, which decided to start bleeding one Sunday morning in October of last year. Was throwing up blood like I had all kinds to get rid of. Went to hospital via ambulance. They put a band in and gave me plasma. My platelets dropped from 65 to 30, took a while to get those back up (am now taking vitamin k for clotting). Since then, in November I was hospitalized again for hepatic encephalopathy. My ammonia level was over 100. My daughter, who I live with, found me on the floor of my bedroom (apparently in a mess). Ambulance came, took me to hospital. Then in January of this year, went back into hospital for hepatice encephalopathy again. Only this time my ammonia level was 395! I was put on ventilator, given lactulose like crazy, and of course, I knew nothing about it. I was 'disconnected' (as my sister says). I didn't know I was in the hospital for over a day. When I came to, it was like, oh well. Here I am again.

But I can now tell when I think I need to get my ammonia levels checked....speaking incorrectly, losing balance somewhat, blurred vision.
So, last week, went to dr for something else and asked that they do an ammonia test. Don't know the results of that yet, but should this week.

Anyway, the dr said that what sent me to the hospital this last time was a UTI. That also caused my ammonia levels to rise. What a mess hep c does to the body, but GOD has seen my this far and he'll see me further.

Thank you for letting me say this.

thetrix
New Member


Date Joined Jan 2010
Total Posts : 4
   Posted 3/2/2010 7:06 AM (GMT -7)   
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.

worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 3/2/2010 7:55 AM (GMT -7)   
my mom was in the hospital every other week until i stepped in and went to her doctors with her and asked about lactulose, spironaldactone, and lasixs. that seemed to help with her problems for awhile. the encephalopathy never showed any signs for her she just went into it but she didnt have a whole lot until the day after her surgery for her ulcer that she got it, asking for her mom and dad and i kept having to explain they are gone, trying to pull out her nose tube and kept asking for sprite and i had to tell her she couldnt have it due to her stomach and then she would look at me and say"i dont know what im doing" and when she did that it broke my heart. it is hard seeing the ones you love suffer so great.

if she wanted though she can give the hospital permission written to allow you to know her status i believe but i could be wrong on that.

oh and my mom had a lot of utis to so i think its part of the disease. i want to welcome you both to the forum to.


The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are

Post Edited (worriedgirl) : 3/2/2010 7:59:57 AM (GMT-7)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/2/2010 8:54 AM (GMT -7)   

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.


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


siloamsandy
Regular Member


Date Joined Mar 2010
Total Posts : 46
   Posted 3/2/2010 9:46 AM (GMT -7)   
Thank you, hep93. I did just that. Copied and pasted post to New Topic.
The reason I posted a reply here was so that others could watch out for signs of ammonia level getting up there. Once I began typing, my fingers just had a life of their own...

I'm happy to have joined.
siloamsandy
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