Treatment for hepatic encehalopathy

[Wanzewurld]

My wife is being treated for hepatic encehpalopathy (due to HCV and cirrhosis) with Lactulose.  For the past few years it was a pale yellowish green color and practically tasteless except for the overly sweet taste.  On our last couple of refills the color has changed to a dark green (I'm color blind so "green" may be misleading) and it seems to have a not-too-unplesant taste although still very sweet and it's not as thick as the old medication.  My question is:  Is this a new formulation?  Once when she was hospitalized the nurse would come in with the "Did your bowels move today?" and when answered in the affirmative they'd remark that she probably didn't want the Lactulose.  I explained the purpose of Lactulose as aiding in ammonia extraction more times than I should have had to and requested each time that it be noted on her chart that it wasn't a PRN med but a daily dose regardless of her bowel movements.  They brought in a dark green medicine that didn't taste like Lactulose and I found out later was a generic laxative.  It took us several weeks to get back to near normalcy with her walking and mental functions.  I've noticed some of her symptoms seem to be deteriorating and calls to the pharmacy don't really answer my basic query: "Is this Lactulose and is the medical formulation the same as the original?"
She is a patient at a local V.A. hospital and some of the professionals there don't instill the confidence I'd like to have.

[nitramog]

i dont now about the chang in lactalous,    but diat changes can help, and the amount of protien in your diat wat is your wifes numbers on ammonia levals. im down to 90 it can be lowerd somewat. have patints its a bad fealing wen its hard to remembar simple things, our just the fogy fealing

[tulsatime]

If I am not mistaken grandma was on lactose, so I sent out an sos for ya. I am so sorry you are having this problem. Hope someone comes along that can help. Take care... Debi

[Wanzewurld]

Thanks to Tulsa and Nitamog (Hope I spelled these right)  The V.A. hasn't done an ammonia level test per se... They're just aware that her ammonia level is elevated and the cirrhosis is fairly advanced.  Everyone except my wife and I gave up hope about 3 years ago and they didn't expect her to live past about 9 months so we're ahead of the game in that respect.  I try to watch her diet but it's so frustrating because she sleeps all day and then gets up when I go to sleep at night and junk-foods out.  It's gotten pretty overwhelming of late and I'm hitting the end of my chain in what I CAN and CAN'T do for her.  We're both past 60 and I have back, asthma, and allergy problems and have to take a lot of meds myself so some of the pain meds and broncho-dilatorsare interferring with my coping and decision making mechanisms.  I can recall having a sheet of paper that dealt with coping a few years ago. It had a large circle on it and the directions "Hang on wall".  Inside the circle were the words, "Bang head here".  I feel like making another one and mounting it on foam rubber so I won't do any permanent damage.  If there were a local support group in this smallish town I'd be a fairly regular attendee.  There are just so many small things that come up each day that I'm at a loss as to how to deal with it all.  We've been married 40 years this December and are still in love so I comfort myself with the knowledge that I don't have to look very far to find someone else in worse circumstances.  Prayer helps a lot but our children have been largely driven away by her conduct and actions... Really she's not in THAT bad shape but it's just enough so she's not the Mother they remember growing up around.  I've talked to the doctors and her psychologist but they don't SEE her condition.  They keep talking about what great shape she's in but she tells them things that aren't true (I go to the appointments with her) and I correct her answers and try to tell them the about  her condition and the small things only a mate knows about her actions and it seems my comments are dismissed.  She tells them what she believes is the truth but her grasp of the truth is flawed. I'm sure I'm not explaining this correctly but I have her interests at heart and feel ignored at best and treated like a fool or liar at the worse by her health care providers!!
   I'm just falling apart gradually and it seems to be getting worse the past few weeks.  I don't know where her problems end and my shortcomings begin so I'm just taking it a day at a time.

[crsrph]

thats a new one on me every one i have ever dispensed was clear to amber yellow however there are a number of generic manufactures and different colors and viscosities of liquid are not uncommon  if the pharmacy that filled the rx is close take it in and have it verfied  if it was mail order have someone verifey the color then call them up to verify your peace of mind will be worth the effort not sure of ammonia levels maybe an increase in dose may help best of luck

[nitramog]

staying awaek all day our as much as possable helps sleaping at night  being nockternal semms to go weth the rest of the prblems also depreshion;    mayby boeth wase

[Myown]

I can hear that you DO have your wifes best interests at heart. Don't let the health care providers get you down because of not listening to you. We all seem to go through that with them at times. They see what they want to see and hear what they want to hear.
What I see and hear in reading your posts is a love story. A man who loves his wife and wants only the best for her.

In my prayers....

[painterlady13]

When I started my TX my specialist specifically told my partner to keep them informed of and mental changes noticed.  Said that she would be the one who noticed the physical and emotional changes first not me.  In that light I would maybe consider getting an appt with her docs by yourself to discuss what you see.  
Also I agree that it sounds like you love her very much but have "your plate full".  Maybe you can get to a counselor for you, Maybe they can give you other ways to work with her various problems or at least a way to cope so you don't go crazy.
I also live in a pretty small town that has no support groups for this disease. If I could find one even an hour away I would be there every week.  I felt so lost with this DX before I found this group.  They have been my support group for the last 6 months. Good luck

[philly159]

I also take lactalous, this is my second time around. I had a transplant 5 yrs ago. My liver is end stage again. Im ok dureing the day. At night I get very depressed. I dont have anything and my grandaughter is having a hard time just buying books and gas for school. I just want to be here long enough to do what I can to see her go to college. I cant do much, but just gas money helps. Lets all pray for us. We all need help somewhere in our lives. Love and best wishes to all of you.

[Deb_c430]

This is certaintly a trial for you and your family. The VA is often so crowded and under staffed.  But they do have some good Docs. I think I would ask the Doctor and the Phychatrist for a meet with her,  Yes phycically she maybe be doing well, but the mental strain on you and her is causing problems.  Make a list tell them your concerns and ask for re testing.  

I really feel for you as a caregiver who has so much on your plate.  I feel for your wife and her relationship with her children,  I know somewhere in her it hurts her and it has hurt them.  It is a shame they can not give her the same patience she did them when they were small.  Hurt feelings and pride can cause so much hurt.

If the kids do not wish to know her,I do hope they can show you some compassion swallow some pride and  see fit to lend you a hand,  

I do not know the drugs you are talking about, but again I would I ask for a meeting with all her Docs and get some tests re do, and verbalize your concerns.    

I will keep you all in my prayers.

Deb

[merryBe]

it's hard to deal with any sickness, our own or others.
Sometimes patients try t appear upbeat to dctors...when they are not overcoming at all.
You need to help her to see how she has changed, does isolate etc,,,until she begins to see that the old her is gone...then maybe she'll want help.

also I would try a group support for families caregiving, for cancer for instance.
A group does nt have to all have the exact same disease yo give you some real help and encouragement....all caregivers have similar issues....and all chemotherapy does similar things to a person regardless of what disease they are being used to treat.
Call your larger hospitals and social services mental health division and find a group of caregivers, or a chemotherapy group to attend....at least you will know you are not alne.
much sympathy, MaryB