It's been a bumpy road

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 8/18/2009 7:30 PM (GMT -7)   
Hello, all! I have not posted in quite some time. But, did need some input here. As most of you know, my husband has HepC and Cirrhosis and has been on the transplant list for quite some time. He was most recently admitted to the hospital this last Friday due to he has started having seizures again. He has been on anti-seizure medication since they started in April, but not sure what the deal is. His ammonia level is up as well and the lactulose is not helping. As a matter of fact, the neuro is very concerned that the lactulose and the Dilantin are combatting each other. So, he has placed a call to the hepatologist to have a conversation. In the meantime, he is in inactive status again! The neuro feels like 90% of my husband's problems will resolve with a new liver, but he is inactive because of the seizures! So, the ammonia level keeps creeping in the wrong direction, and they cannot balance the Dilantin level either......
 
Isn't there an antibiotic drug that can help with the ammonia level that's not as "yucky" as the lactulose?? I am thinking that may be a better choice given the absorbtion problems he's having with the seizure meds.
 
As of lately, I think he is giving up. Prior to going in the hospital, he just sleeps all the time, and is in so much pain (he has had a severe headache since March and nothing releives the pain). He finally gave me that look right before going into the hospital that an animal gives you when it wants to be out of misery.....
 
If someone know the name of that antibiotic that helps the ammonia level, I would be appreciative so I can ask specifically about it at the hospital tomorrow.....
 
Thanks!

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/18/2009 8:48 PM (GMT -7)   
Hello Mer,  good to see you posting again.  That antibiotic is Xifaxan.   But normally it is given along with the Latulose.   They gave my husband a different med for his seisures.......Keppra.  It seemed to do the trick.  
 
Hang in there friend........we are here for you. 
 
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.


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/19/2009 5:23 AM (GMT -7)   
Rick, I believe both meds are one and the same..........just different manufacturers. Lactulose has lot's of different manufacturers also.........so there's different names for it as well .........but it is the same and does the same job. Enulose is one of them. My husband tried I believe 3 different brands and umpteen different additives trying to find a way that he could tolerate it.. We put soda,different juices, water, etc.....finally he gave up and bit the bullet...........just downed it straight like taking a shot. And chased it with water. He said it was the nastiest stuff on earth. He had me taste it when I kept after him to take it. To me that it was like the caster oil that my mom gave us kids years ago with a lot of sweetner in it.

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.


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 8/19/2009 6:38 AM (GMT -7)   
PG, and Rick....thank you! I will mention the Xifaxin to the docs today. I do believe he has had that before. The problem we are having is that the lactulose is working against him being able to absorb his seizure medications. PG, he is on Keppra as well as Dilantin.....he's on pretty heavy doses of seizure meds.....still not sure what the root of the seizures are, but neuro seems to think it's because of this liver. Crazy cycle.

I will keep you posted.....

Mer

child4
Regular Member


Date Joined Jun 2009
Total Posts : 107
   Posted 8/19/2009 11:21 AM (GMT -7)   
My mom had an allegic reaction to the remoxifin, although she is not allergic to anything else, so watch for that.  and it was working for her.

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 8/19/2009 2:41 PM (GMT -7)   
Mer
All I can tell you that Jerry was on the same dose of Lactalose as your husband yet he still had a lot of amonia problems.  So they put him on Neymison!  That really helped.  I think it is an antibiotic also.  Now sure how it work but it did.  Hope this helps
 
JoAnn
 
Also Vanderbilt average time to be listed before transplant is 15 mths.  Jerry was on for 17 mths.  How long did you say your husband has been listed

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 8/19/2009 5:02 PM (GMT -7)   
Hey, Joann!!

He has been listed (on and off) for about a year and a half now. His MELD has hung down pretty low 7-8 and as high as 10. But, this being inactive every couple of months is insane!! His liver specialist did call in a prescription for the Xifaxin, thinking he would get released from the hospital today, but now it may not be until tomorrow or Friday.

I do hope that Jerry is doing well.....and I am SO happy for you that he has received his transplant!!

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 8/19/2009 7:40 PM (GMT -7)   
Mer  I don't understand anything about the seizures.  Jerry did not have that problem.  I can try explain other things to you.  If you want just e-mail me.  Its just alot to take in but I will try.  Just hang in there.  Stay in touch if you have the time.
 
JoAnn
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 10, 2016 12:02 AM (GMT -7)
There are a total of 2,735,767 posts in 301,329 threads.
View Active Threads


Who's Online
This forum has 151433 registered members. Please welcome our newest member, teenujohn.
198 Guest(s), 6 Registered Member(s) are currently online.  Details
Georgia Hunter, msOuchie, Job_the_Phoenix, holo100, joavila92, julymorning


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer