Encephalopathy Questions

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KathleenW
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Date Joined May 2010
Total Posts : 80
   Posted 5/28/2010 8:59 PM (GMT -7)   
My name is Kathleen and I have a post on transplants for people in their 70's on this forum also. I am wondering if anyone who has been here has some more insight on encephalopathy. My mom's ammonia levels are in check, but she is still very out of it. More alert now that the UTI is cleared up but she is not herself. Very monotone, can't remember things or people - she is even having trouble remembering her grandchildren and thought I was one of many daughters (I'm it there is no more). Really, she is in bad shape mentally. Does this mean her liver is failing fast? I thought we'd get her back for a little while anyway, now it seems she is gone. I can't stop crying.... Thinking there is so little time and I will never have her back, not even for a few weeks. This disease is so unfair. Is there anything I can push for to get her closer to where she was at before all of this?

Thanks!

KathleenW
Life is painful, suffering is optional

Post Edited (KathleenW) : 5/29/2010 8:37:36 PM (GMT-6)


KathleenW
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Date Joined May 2010
Total Posts : 80
   Posted 5/28/2010 10:02 PM (GMT -7)   
Anyone have experience with Rifaximin sold under the brand name Xifaxan?

Apparently it received orphan drug status in the US for treatment of encephalopathy. Rather than being a laxative like Lactulose, it is an antibiotic.

Any information you might have would be greatly appreciated!

Peace,

KathleenW
Life is painful, suffering is optional


arneeb
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   Posted 5/29/2010 4:14 AM (GMT -7)   
Unfortunately Kathleen... I don't think anyone can give you that answer.. even the doctors... usually the ammonia levels coincide with the confusion.. I know Mike's was 208 and he wasn't very confused and that was said to be a high ammonia level...well he was more like in a happy serene place... I wish I had an answer for you.. I don't maybe the others do.. could dementia be setting in??  It's hard to go from being willing to go through surgery yourself .. one feels at least that is something one can do.. and then... these things become out of your control.. I know that I felt that way with Mike ... I would have given my life that he could live ... it wasn't to be... we were fortunate in the time we had together... you will be in my prayers and thoughts daily ... Sandi
There is no pit so deep that He is not deeper still... Corrie Ten Boom


KathleenW
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Date Joined May 2010
Total Posts : 80
   Posted 5/29/2010 5:59 AM (GMT -7)   
Sandi, I think we would have seen dementia, or signs of it, before she went so downhill with the liver disease. She was working supervising people two months ago. One of the nurses told me this could very well be the progression of the disease. I would give about anything to have a conversation with my mom where she is 100% lucid and the spitfire she has always been. I plan on asking the doctor about this drug or what if anything we can do. Thanks Sandi your posts are always so helpful.

KathleenW
Life is painful, suffering is optional


**David**
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   Posted 5/29/2010 7:13 AM (GMT -7)   
KW, I seem to remember that your mother is 77. That and her liver problems could be the cause of encephalopathy. I took xifaxan for a little over a year, combined with lactulose (I had been on that for 5 years). The combination helped, but I was still "slow." My transplant took care of the entire problem. **David**

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 5/29/2010 11:08 AM (GMT -7)   

Kathleen, I know that my co-moderator's husband was on both Lactulose and Xifaxan and it seemed to help.  Undoubtedly, your mom's liver condition is deteriorating, but do ask the doctor about adding Xifaxan as it seems to help.  I wouldn't expect her to become 100% clear, though.  Some people get to that stage and are suddenly gone, while others will linger on for months being totally "out of it."  It's a very individual thing.  How is her diet and appetite?  Cut beef out completely, if it has not already been done.

Hugs,

Connie


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


Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 5/29/2010 6:05 PM (GMT -7)   
Hi Kathleen, So sorry your mom isn't doing so well. Definitely ask the doctor about Xifaxan. My husband went from constantly having encephalopathy episodes to being very coherent in his last few months after they added it to his maintenance meds. You notice, I didn't say back to his old self. He wasn't up to cracking jokes or playing practical jokes like he used to but at least he could hold a normal conversation. Until then, sometimes his ammonia levels could be at 40-50 and he was goofy as a jaybird. With the addition of Xifaxan he could be coherent with his levels up near 100.
With a damaged liver patients develop infections quite easily. Not to mention the MSRA that they can get from being in and out of the ER's. I believe personally that infections play a big role with not being able to control the encephalopathy with just lactolose in the end stage for some people.

Hang in there.........lots 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.


KathleenW
Regular Member


Date Joined May 2010
Total Posts : 80
   Posted 5/29/2010 6:39 PM (GMT -7)   
Thanks to all of you for your comments and experience. I am going to approach the doctor about the Xifaxan - Sounds like it could at least get closer to herself and perhaps help solve this issue of the infections which she keeps getting - She starts to come out of the fog, and along comes another infection. I understand Xifaxan is an antibiotic.

You guys are such great support! I am so glad I found this site!

KathleenW
Life is painful, suffering is optional


**David**
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Date Joined Nov 2009
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   Posted 5/29/2010 8:13 PM (GMT -7)   
Xifaxin is an antibiotic. Before I took it, they had me on another antibiotic, but I can't remember the name off hand. At first my insurance didn't want to cover xifaxin, because it's very expensive. My hepatologist told them I needed it and they gave in. It had less of a laxative effect on me. The lactulose was bad enough by itself.

KathleenW
Regular Member


Date Joined May 2010
Total Posts : 80
   Posted 5/29/2010 9:24 PM (GMT -7)   
David, thanks for the information on your experience. It reminds me to check the drug formualry. Lucky, when mom wanted to switch to a cheaper Medicare D plan last year with step therapy edits in place (means you have to try the cheaper drugs first), I talked her out of it as she was on Actos and a few other drugs which did not make is cost effective. So, she should be able to get whatever they prescribe without having to jump through hoops. She does not have months to try other drugs....
Life is painful, suffering is optional


mer
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Date Joined Aug 2008
Total Posts : 613
   Posted 5/30/2010 1:15 PM (GMT -7)   
Kathleen,
 
My husband was put on xifaxin in lieu of the lactulose for a while due to the fact that the lactulose and one of his seizure meds were not getting along! So, he was put on the xifaxin and in my opinion, it seemed to do a better job at keeping his ammonia levels in check. However, it is a VERY expensive drug and once we got him on the correct seizure medications, his insurance will not pay for the xifaxin since the lactulose is an option. I know he has been given xifaxin in conjuntion with lactulose when he has had very severe episodes of encephalopathy while inpatient in the hospital. You may want to have that conversation with the doctor. I am so sorry your mother is having such a rough time of it. You hang in there and take care of you, too!

KathleenW
Regular Member


Date Joined May 2010
Total Posts : 80
   Posted 5/30/2010 5:05 PM (GMT -7)   
Thanks Mer! I do see that Xifain is a "brand non formulary" drug for my mom's Medicare Part D plan. She should be able to get it, but it will have a much higher expense out-of-pocket. I see a retail price of about $300 for 30 200mg pills - So about $10 a pill... I am going to look further so I have all the information ready for the doctor on coverage. I did have a great experience at lunch with mom today. A lady sat down with us who turned out to be be a Type 2 diabetic, who suffered from NASH that moved to Cirrhosis. Turns out she is 69 and on the transplant list at the University of Minnesota. She has three children and a grandchild who have volunteered to be live donors. She was so wonderful - mom was out of it and so she offered to answer any questions I had about the disease, what my mom might be feeling and thinking and how to best approach Mayo and the U of M around the transplant list.... Really nice to be able to speak with her. She is very hopeful and it gave me strength to speak with her.

KathleenW
Life is painful, suffering is optional


mer
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Date Joined Aug 2008
Total Posts : 613
   Posted 5/31/2010 6:38 PM (GMT -7)   
I am so glad someonoe came in your path right when you needed it!! With regard to the xifaxin, usually they do have to take the pills several times a day. When my husband was taking it, he was taking 2 200mg pills 3 times a day, hence the very expensive part of that medication. The cost for it without insurance would have beem like $1200 a month or something outrageous! You hang in there...it is so hard to see our loved ones in that altered state. Just know for them, they have no memory of it, and when they do come around, they feel REALLY bad about what may have gone on while they were out of it. There are some things that my husband has said and done, that I just choose to not let him know about. Again, I am so glad someone was there right when you needed it. She sounds like she will be very helpful to you!

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 5/31/2010 7:24 PM (GMT -7)   

Kathleen you can also check out the "indigent drug program" if the drug is too costly:

http://www.top5plus5.com/Indigent%20Drug%20Programs.html

Hugs,

Connie


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


KathleenW
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Date Joined May 2010
Total Posts : 80
   Posted 6/1/2010 1:31 PM (GMT -7)   
Well, I am meeting with the doctor this afternoon. They are concerned with a brain CT done about three weeks ago. It shows what might be the very, very early signs of dementia. So under normal circumstances, noticeable symptoms may not have been revealed for a number of years, perhaps as many as ten. However, due to the Cirrhosis, the dementia may have actually progressed in weeks rather than years. If this is the case, no transplant. Mayo called this morning and told me their initial review of her medical records indicate she is a good candidate for a transplant and they would like to see her come in for the first round of tests. Very bittersweet news indeed. They have not seen this scan. It's in God's hands now.
Life is painful, suffering is optional


Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 6/1/2010 5:21 PM (GMT -7)   
sad It's seemed to be like that for my husband. One step forward and 2 steps back.
Kathleen our thoughts and prayers will be with you and your mom...........
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.


KathleenW
Regular Member


Date Joined May 2010
Total Posts : 80
   Posted 6/1/2010 6:09 PM (GMT -7)   
Well, new hour, new story...now the doctor thinks for sure all the problems are related to the Encephalopathy. While her ammonia levels are on the "high normal", all her symptoms do point to the encephalopathy, not dementia. He thinks the CT of her brain was actually normal for a person of her age and health status. So, we doubled the Lactulose he is looking into the xifaxin in case the Lactulose does not resolve it. If this all does not work, back to the hospital we go... Good news, he does think we can get her most of the way back - at least enough for her to participate in the decisions around her care and possible transplant.
Life is painful, suffering is optional


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 6/1/2010 6:17 PM (GMT -7)   

Kathleen, I'm glad they decided it's not dementia.  I would go ahead and have her seen at Mayo.

Good luck and hugs,

Connie


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


KathleenW
Regular Member


Date Joined May 2010
Total Posts : 80
   Posted 6/1/2010 8:55 PM (GMT -7)   
Thanks Connie and Pink Grandma! Your support is so valuable to me and I appreciate it even though I have never met you both!
Life is painful, suffering is optional


Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 6/2/2010 6:41 PM (GMT -7)   
Kathleen you are more than welcome. That's why we are both here.... to give support and pass on any knowledge that we may have.
I know that this forum helped me through my husband's last 6 months. The support that I received here, couldn't be matched by family or friends. Not to say some didn't try to help......but they didn't understand...not even his family.

When I first posted I was so scared that no one would respond.......I actually cried when someone did. To actually be able to communicate with people who knew what my husband and I were going through was priceless. I learned so much more here than from any of his doctors....and believe me he had lots of them. I will never forget some of our old members who were there for me (Connie was one of them. Thank you Connie.). I just wish that others would drop in and say hi occasionally...

Have a good night Kathleen.......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.


KathleenW
Regular Member


Date Joined May 2010
Total Posts : 80
   Posted 6/2/2010 8:10 PM (GMT -7)   
Mom is way worse today. Dad called me frantic because he could not wake her up to eat lunch. The case manager says she does not see a big change, yet since she is not making progress in therapy they are kicking her out of the transitional care unit as Medicare will not pay much longer. I skipped out early from work and went to meet my brother at the home... I told the case manager mom is way, way worse and does not even know us. They started to double the dose of Lactulose yesterday, because she was constipated. I still wonder if something else is going on... I am going to talk to the doctor tomorrow - if she is not any better after the increased dose and 48 hours, I think it is time for the hospital. I am afraid she'll go into a coma. She should have more time....

KathleenW
Life is painful, suffering is optional


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/2/2010 8:30 PM (GMT -7)   

Kathleen, don't forget to ask about the Xifaxan.

Hugs,

Connie


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


KathleenW
Regular Member


Date Joined May 2010
Total Posts : 80
   Posted 6/2/2010 9:24 PM (GMT -7)   
Connie - Do they use Xifaxan with Lactulose? I am just so puzzled and sick that she gets worse and worse.... They doubled her dose, but I just don't see any results... Any thoughts?
Life is painful, suffering is optional


shadowsghost
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Date Joined Apr 2008
Total Posts : 489
   Posted 6/2/2010 9:49 PM (GMT -7)   

Kathleen, Yes both Xifaxin and lactulose can be given together. My Doug was on both for over a year. I do know to give the lactulose a few hours after other meds to allow time for the body to break down meds. With lactulose there shouldnt be any constipation, even a small amount. It is also use for people taking alot of meds that cause constipation, a 1/4 teaspoon for theraputic stool softener.

Sue


Adapt yourself to the life you have been given; and truly love the people with whom destiny has surrounded you.


KathleenW
Regular Member


Date Joined May 2010
Total Posts : 80
   Posted 6/3/2010 5:35 PM (GMT -7)   
So, can anyone tell me what a "mega dose" of Lactulose is? I'd like to suggest it for mom.

Mom has an ammonia count of 45, but she is out of it. She is presenting as if it is much higher. Can't even brush her own teeth and has had only 1 BM today... She is on 40 cc every three hours now. I am meeting the doctor at the TCU early tomorrow to make the decision to readmit her - this time to a hospital with a transplant unit and a bunch of liver docs running around.... Gee, is there really any question here? She's going to have to be 1000 percent better for me not to throw a temper tantrum if they don't admit her tomorrow.

Your thoughts and options would be greatly appreciated folks!
Kathleen
Life is painful, suffering is optional

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