Thanks for the instruction

I am new and "trying to find my way around" the forum.  My husband has NASH and was officially diagnosed 5/2008 when the cirrhosis was found during a gall bladder surgery.  Like everyone else we are having a LOT of ups and downs and it has been sooo helpful to find that others are frustrated, tired and discouraged.  We think his disease is a genetic thing because his brother and sister both died from it and none of them are drinkers.  The parents showed no sign of it.  We were up all night last night due to him having dry heaves and confusion.  He would not take Lactulose as prescribed yesterday because of "you know what".  I spend a great amount of time on the phone with doctors or at least trying to get messages to them.  I do have a question to you all about whether or not nausea and jerking (spasms of hands) is common when Lactulose is not taken?  Each time he has done this he has not taken his doses correctly.

Gnet, thanks so much for starting a new thread to introduce yourself and your situation.  Take a look at the info in the Hepatitis Resources folder.  Encephalpathy is addressed in there, including the asterixis (hand flapping.)  Hand flapping is a manifestation of his liver disease that is suppressed when he takes his Lactulose.

Hugs,

Connie

MIke had all of that... and he also refused the lactulose..

I have to throw in some humor here...... I will admit I did threaten to give Doug his lactulose with a turkey baister,,,,, use your imagination. LOL He told his Dr too and even they saw the humor
Sue

Gnet, it sounds like you have a wonderful husband.  I hope he will take his Lactulose so he can be more like his old self.

Hugs,

Connie

Welcome to the forum Gnet. My husband also gets tremors in his hands at times, even when seems fine mentally. We were told if we notice the tremors to up the lactolose because it is a sign that his ammonia levels are going up.

I'm glad you found this group. They are a great group of people.

My wife also hated to take lactolose and upon mentioning this during one of her Dr's appointments, she was prescribed "kristolose" which is a powdered form of lactolose. It comes in single dose packets and  works the same. When mixed with water or juice it has virtually no taste at all. Our insurance approved it with about the same co-pay as lactolose.  This is something you might want to check into.

Charlie

Why do you all say Lactulose is a horrible med to take? Mine is like drinking thick sugar syrup. At the hospital they had orange flavor too. I don't understand people refusing to take it. The only problem for me is it is sickening sweet. If I forget to take it John reminds me and I take it. He says he can tell when I've missed a dose. Gnet-I too have had ear,nose and throat problems. I have sores on the exterior of both ears,plus balance problems and feeling like I have an earache. ENT checked ears nothing wrong and the sores he thinks maybe related to another dx I have,Sjogren's syndrome. He is sending me to a dermatologist.

Hope everyone is having a good day today.

Suzi

Thank you Penny for steering me here!  VIEW IMAGE

 

GNET,

 

I’m so glad you are here!  I thank God for this group.  They were so supportive of me when I needed it most and I will never forget them.

 

Pink Grandma and Connie are absolute angels!  Thanks to them, we have a place to share our experiences and ease some of our fears.  They have kept this site going for years.  I can’t say enough for them and the veterans of this site.  KUDOS!! 

 

Love you guys!

 

Penny

 

 

Penny, today we saw a new gastroenterologist and one of the things he mentioned is that with Vanderbilt the MELD number has to be 26 whereas with Boston and Jacksonville (?) it is 22 before transplant.  I didn't know that a person is put on the list when they are 17. Hubby is now at 14.  The doctor also said his weakness won't get better until transplant (was very discouraging) and to be very careful about falling.  He did fall last week but thankfully nothing broken.  I had just stepped outside for a few minutes when it happened. I cannot remember which hospital you said H went to during our conversation.  The doctor also prescribed Xifaxan and hope this helps with Lactulose situation.  The doctor is also talking about TIPPS because of fluid build up in lungs and abdomen.  He was hospitalized 10 days ago and had fluid removed from lungs and is scheduled tomorrow for fluid removal from abdomen.  I realize your ordeal is lengthy but need all the help you or someone can give. 

Thanks

Thank you Penny.   But it's really the wonderful members that keep this forum running.  

Well Suzie if you don't have much of an issue taking Lactulose than you are one heck of a trooper...........I've never really taken it.  I did taste it after my husband complained so much about it.  Not something that I would ever want to take regularly.   I had to fight my husband to take it too. But never threatened him with a turkey baster.  LOL  Penny I still laugh everytime I think about that one.     He would gag trying to get it down and the first few months vomit it back up .   And he would still get the back door trots.   I felt so bad for him but I could not let him know it.   I had to be the drill sargent or he would be in a perpetual encephalopathy episode.  (Please excuse my spelling.)

Gnet we have quite a few members that are familiar with the TIPPS procedure.  

Thoughts and prayers to all.

 

Gnet, it's good to see you posting again.  The new GI sounds like he is on the ball.  Just wondering, though, why a GI instead of a hepatologist...especially if he's looking at a transplant down the road.

 

All I can tell you about TIPS (one P) is that it stands for transjugular intrahepatic portosystemic shunt.  It creates a pathway within the liver between the portal and systemic circulations and reduces portal hypertension and the resulting complications from it, such as ascites.  Access is through the neck.  It does carry risks, including increased encephalopathy.

 

Hugs,

Connie