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Posted 12/8/2007 8:10 AM (GMT 0)

My first time on here my husband has hepitis C with cirrosis. His ammonia levels are elevating and he is becoming confused and lethargic. I'm feeling pretty helpless, he is now becoming very confused and I worry about him going and doing things outside the home. Starting on lactalose and hoping that will help the confusion and lethagic symtoms. I was just wondering if anyone has had good results with this?? I also wondered if anyone knows of other things that we can try? Thanks for the Help 

Posted 12/8/2007 2:29 PM (GMT 0)

 hi hopefull2, the lactalose should help but he should have at least 3 to 4 bowl movements a day to keep the ammonia levels down, depending how bad his cirrhosis is, or there could  be something else causeing his ammonia levels to go up, like what he eats should be low protien low soidum diet. ammonia levels for a normal person is 32 to 34 a person with cirrhosis can sometimes tolerate 50 to 70 and still act normal, sometimes if ammonia levels go to high  they can go into a coma state, but it all depends on the person hopefully hes not driving a car like that!!. my father had cirrhoisis, we dont know how he got it because no hep C or drinking and he was older so it took a tole on him real fast. when they do blood gases on him to check his levels make sure you ask what the numbers are. do not be afraid to ask the dr questions all kind of questions, make yourself a list and ask do not take any stuff from the dr some want to talk around you, if you know some kind of healthcare worker to bring with you to apointments do that. this forum will help you out a lot, some people on here are experts on cirrohsis lot of good info will come your way. this is the right place to be. make sure he takes his lactalose as perscription says and his other meds which im sure he has to take.

good luck hopefull2 my thoughts and prayers are with you.

annette

Posted 12/8/2007 4:16 PM (GMT 0)
 Hi, you have come to the right place for support. There are people on here that are well informed and share information without hesitation. They are wonderful and will help you in any way that they can. I wanted to give you a little insight into the use of Lactulose. I don't know much but I will share what little I do know. As I said there are many others that have far more info than me.

Lactulose is a synthetic sugar. It is used for constipation and to decrease ammonia levels. It is often prescribed to people that have an elevated Amonia level. It works by pulling the ammonia out of the blood and is then excreted out of the body. Since its primary action is to soften the stool and relieve constipation you can assume (correctly) that it will cause diarrhea if given in high doses (as it is with elevated ammonia levels). When anyone has diarrhea for any length of time the body starts to loose other important blood components like electrolytes. That is primarily: Potassium, Sodium, Chloride, etc. So if you have labs drawn on a regular basis (which they should be) you will know what the DR is looking for. They want to see a decrease in the ammonia level and they watch the electrolyte levels very closely. If the electrolytes are too low they may put the patient on oral supplements. Every lab that is within a normal range is what maintains and sustains our bodies. When they are out of whack (abnormal) then it creates a whole slew of problems and racks havoc on the body. For example, a prolonged low Potassium affects muscle tissue and if not treated by oral supplements or IV can lead from muscle cramps to a heart attack. However; the benefits of lactulose far outweigh the side effects. A natural effect of elevated ammonia levels as you know cause confusion and lethargy. So the hoped for outcome of the lactulose is to decrease confusion etc. I realize that this is a simplified explanation but it may help you understand what’s happening.

 

With my mom- they had her on 120 cc a day (4 doses per day of 30 cc each) and although she had diarrhea (she was having loose stools about 8 times a day) her confusion didn’t diminish at all. Now, keep in mind that every case is different. There are a lot of people on this site that have been happy with the results and their ammonia levels came down. I hope this explanation of how lactulose works helps a little. Keep the faith and learn as much as you can about your husbands illness and treatment options. I might suggest keeping a journal on a day to day basis. This helps when you go for his Dr visits as you have accurate info on his symptoms etc. You may want to ask for a copy of his labs each time so you can track the results. We did and it helped us alot.

                                                        Shelly

Posted 12/8/2007 5:02 PM (GMT 0)
Hello Hopefull2 and welcome to our forum. First of all I want you to know that... now you are not alone in this. I personally know how you are feeling and others here do too. We will be here to listen when you need to vent and try to answer any questions that you may have. Most of us are going off of experience with this horrendous disease by caring for a loved one or having it ourselves. We are very fortunate to have a few nurses and a doctor that frequent our forum. So they can give advise from a different prospective. One thing that I did want to mention about the confusion that is usually caused by high ammonia levels, can also affected by infections. Liver patients who have been in and out of hospitals numerous times can and do get a staph infection. Infections can make it very difficult for ammonia levels to be kept under control. Once they figured out that my husband had acquired a staph infection they gave him Xiafan. After he started taking the Xiafan along with the lactolose we were able to better control his ammonia levels. Fevers are a good indication of infection so get in the habit of taking their temp regularly.
Take care...........
Posted 12/8/2007 5:30 PM (GMT 0)
hopeful2, Welcome to the forum. I am so sorry that you have to deal with this terrible disease. As the others have said there are a lot of people here that understand and can help with what you are going through. My husband has hep C and cirrhosis also. I know that the confusion and lethargy that comes with high ammonia levels can be very scary. My husband also has problems with that. Since he has been taking lactulose the episodes haven't been as severe or as often. It has really helped a lot. Although I doubt that his mental ability will ever be as it once was. He is very forgetful and sometimes just can't figure out some things. These are also things that come with cirrhosis. It wasn't that long ago that I came to this forum for help. Everyone here is very helpful and supportive. I couldn't belive how much better I felt after coming here. There are always people here ready and willing to listen or give advice. It is also a good idea to do as much research (internet is very useful) on the disease as possible so that you will be prepared. The doctor's don't usually tell you very much. They just told my husband he had cirrhosis, and that was it. I learned a lot just by googling cirrhosis.

Take care of yourself and hang in there. There are people here that care.
Posted 12/8/2007 5:50 PM (GMT 0)
Butterfly, Congratulations on your 100th post. And thanks for being such an active member. I know it's not easy with all that you are going through at home. Have a great day Butterfly. By the way how is Butterflyfour? Give her my regards.
Posted 12/8/2007 6:24 PM (GMT 0)
hopeful2, We are all blessed to have such a wonderful, compassionate, and educated forum monitor in Pink Grandma. She will lead you to some of the best sites for research and always shares her own experiences which are tremendously helpful and insightful. Other posters I myself have learned to respect and love are Butterflythree, hep93, myfather, moms "will" to live, and many others. When I needed them they were there for me. They will be there for you too.
Shelly
Posted 12/8/2007 8:55 PM (GMT 0)
Pink Grandma, Thanks, I am happy to be here. Coming here makes things a little more bareable. I am very thankful for all of you. Butterflyfour is doing good. Thanks for asking.
Take Care.
Posted 12/9/2007 12:56 AM (GMT 0)
TO All: I want to thank  you for your suggestions info and support. I can't tell you how much it meant to me to see all the replies and support. Again you are all great and I will definately be here to get and receive support from all of you. May we all get the support and help that we need from are faith and also are friends family and support from all of you.  Thanks and my thoughts and prayers are with all of you Hopefull2
Posted 12/19/2007 4:21 PM (GMT 0)

Hopefull2,

I am new the board. I have read a lot of the post and have gained a lot of knowledge and support.

 My mom has auto immune hepititus/with end stage live disease/cirrhosis. I have been dealing with a lot the same issues that you are having. Mom has been in and out of the hospital for the past 6 weeks with  high ammonia levels. The last time, her level was 150 and she was unresponisive. Her dr gave her enema's of lactulose and she woke up after about 12 hours sleeping. She is now on Rifaximin 2 times a day along with the lactulose 4 x day.

She is doing SO much better. her memory and the listlessness has cleared tremedously.

I hope this helps. I know how hard it is to watch someone you love be in this condition.

I am finding out that this disease is a day by day/ hour by hour . We start out having a good day and the next minute is not so good. Hang in there and take care. :-)

Posted 12/19/2007 5:19 PM (GMT 0)
Hello Daybyday and welcome to our forum. So glad that you decided to join us. I know that first step to post is hard. At least it was for me. I am so sorry to hear about your mom. This is the smartest thing that you can do for your mom and yourself....getting educated and getting support. It's a very scary disease to deal with everyday. My husband was also given that same drug and it also made such an improvement in the quality of his life his last few months. It's actually an antibiotic. With their immune systems being depressed they get infections quite easily. And when they have an infection it is very hard to get the encephalopathy under control even with the lactulose. Thanks again for sharing and come back anytime. Thoughts and prayers.
Posted 12/19/2007 11:38 PM (GMT 0)
Hi Daybyday and Welcome to the forum. I agree with Pink Grandma that it is has been so helpful to myself to get the support I have needed through this forum. Whether you are a caregiver or one that has these horrid diseases, it is such a relief to just know that there are other people out there going through what you have and that you are not alone. I am so sorry that your mother is having to deal with AIH, it is such an unpredictable disorder. Medications that help control it can also harm and there are definitely times when things go from feeling good to feeling bad. I hope that you can also gain the support and education that I have here.

Lucy
Posted 12/21/2007 2:35 AM (GMT 0)
Hello Daybyday, I just wanted to welcome you to the forum. There are a lot of caring people here that understand exactally what you are going through.
Posted 8/18/2008 2:57 AM (GMT 0)

HELLO EVERYONE THAT IS BATTLING THIS SAME PROBLEM. I AM A DAUGHTER OF A 52 YEAR OLD MAN THAT IS BATTLING THIS AND HAS BEEN FOR THE LAST 6 YEARS. HE IS A RECOVERED ALCOHOLIC AND HAS CIRRHOSIS AND HEP.C. I AM 25 YEARS OLD AND IT'S KILLING MYSELF AND MY FAMILY TO SEE AND BE WITH HIM WHILE HE'S GOING THREW THIS. RIGHT NOW MY FATHER IS INCARCERATED DUE TO DEADLY CONDUCT. HE WAS GOING THREW THE HALLUCINATION ON DELUSIONAL STATES AND SHOT OFF A GUN IN OUR BACK YARD AND THE HEIGHBOR SAID IT BARLEY MISSED HIM HEAD. ANYWAYS SINCE HE'S GONE INTO CUSTODY HIS AMMONIA LEVELS ARE ELEVATED TWICE THE AMOUNT THERE SUPPOSE TO BE. HE TAKES 7 DIFFERENT MEDICATIONS ENCLUDING LACTALOSE BUT IT SEEMS NOT TO HELP HIM. THE COURTS ARE SAYING HE'S MENTALLY UNSTABLE BUT WHAT THERE NOT UNDERSTANDING IS HE'S HEALTH PROBLEMS AND HIS AMMONIA LEVELS. HE IS NEEDING MEDICAL TREATMENT FOR THEM AND THEY DON'T SEEM TO CARE about IT. I WANT TO KNOW HOW MUCH LONGER THIS WILL GO ON BEFORE IT'S TOO LATE. MY FAMILY AND I ARE SCARED THAT WERE GOING TO LOSE HIM DUE TO THIS. CAN ANYBODY HELP ME OR ATLEAST EASE MY MIND SOME. I AM SCARED. THIS IS THE 4TH SCARE THAT WE HAVE HAD. HOW MANY MORE WILL WE HAVE? WHAT MORE CAN I DO FROM THE OUTSIDE WORLD FOR HIM SEEING THAT THE JAIL WILL NOT TAKE HIM TO THE HOSPITAL. PLEASE SOMEBODY HELP. THANKS EVERYONE FOR YOUR TIME IN READING THIS AND HOPEFULLY SOMEBODY CAN HELP ME. RACHEL

Posted 8/20/2008 8:59 AM (GMT 0)
Hopefull2
I have Cryptogenic Liver Disease, ESLD and cirrohisis. My only real problem right now is my ammonia level. I am able to keep it under control with the Lactulose,a low fat diet and little or no meat.

 Still able to medicate myself and regulate the amount I take. I know when my ammonia levels go up because I start to feel ligjt headed,sort of foggy and my husband tells me to take more lactulose because I am beginning to act strange.

It has been as high as 168 thats the time I was hospitalized and got this terrible news about the disease. Until then I had been O.K. It has been as low as Less than 14. It varies quite a bit . I take lactulose , and a water pill the last time I went to Mayo they prescribed high doses of zink sulfate for the memmory . I thought it was rather strange at the time . but now I have done quite a bit of reading and it is supposed to help. Ask your Dr. about it . Its only a mineral and sold otc.

They prescribed 7Tbs. Im doing fine on 4. Sometimes I do take 7. Of course right now I am able to do that some day I may not. Anyway it did really help me, I just do not understand why they tell me I am so deathly ill. Thank god I'm not.

june

Post Edited (june17) : 8/20/2008 3:03:08 AM (GMT-6)

Posted 8/20/2008 3:48 PM (GMT 0)
Hi June, How are you this morning? Hope you are feeling okay.

I just want to tell you that you grabbed an older post. Hopefull2 hasn't posted since last December and has not logged on since January. Hopefully she is still around just reading posts though and will see your response.

They had my husband taking Zinc also. He was taking a multi-vitamin as well as vitamin A and Magnesium. Boy was his pill organizer full.

I think that I need to start taking Zinc if it is good for memory. I'd forget my head sometimes if it were attached to my neck.

Take care June........thoughts and prayers..........
Posted 2/22/2009 9:46 PM (GMT 0)
I am so glad to find this forum. My mom was just release from ICU a few days ago. She was vomitting non stop and complaining of a major headache. Now, I am very aware that my mom has cirrhosis and diabetes. My mom's blood sugar went up to 430 so I decided to take her to the ER. Turns out when your ammonia levels are too hight which it was the case for my mom, it also throws everything outta wack. She's home now, and is under lactulose 3x a day to maintain her ammonia level. My mom still complains of dizziness pretty often.
Posted 2/23/2009 12:03 AM (GMT 0)

Hi, Hoover, and welcome to the forum!  You might want to start a new topic (just click on New Topic instead of Reply) to introduce yourself and what you are dealing with.  I'm sure you will get a lot of support and and information here.

I'm glad to hear that your mom is now at home and getting treatment.  High ammonia levels cause confusion and odd behavior.  Hopefully, the Lactulose will keep that under control.

Posted 2/23/2009 3:38 AM (GMT 0)
Welcome to the forum Hoover. The lactulose should help your mother quite a bit. I'm sorry that she has this disease. It can be very unpredictable. I'll include you in my prayers.
Posted 3/27/2009 8:40 PM (GMT 0)
Help!!  My husband has cirrhosis and this week has started to sleep alot and when awake not very coherent.  He was in the VA hospital last week where they took off 6 liters and gave him 2 pints of blood.  He is losing blood they think, thru the portal vein in his stomach.  What is scaring me is the sleeping and incoherence.  He is taking lactulose 3-4 times a day and this week I have been trying to double up on it, but it doesn't seem to help.  He is nothing like himself.  The VA has been great.  They provided him with several things to make him more comfortable and today they brought a hospital bed.  This is a horrible disease, the not knowing is so hard.

Posted 3/27/2009 9:27 PM (GMT 0)

Hi, Paris.  It is good to see you posting again.  It sounds like your husband's disease is progressing.  I reviewed your old posts and you had said in the last one that he was drinking again.  Is he still drinking?  I'm specifically asking because you say the Lactulose does not seem to be working, even when you give extra.  The sleeping is normal, but of course there would be even more sleeping if he is drinking.

I'm glad he is getting good treatment through the VA.  They don't have the best reputation.  Regarding the bleeding, have they suggested any treatment or surgery? 

Do you have someone to help you at home so you can get a break and maybe even get out occasionally?  It's important to remember to take care of yourself, too.

Posted 3/28/2009 1:44 AM (GMT 0)
He hasn't had anything to drink since December, but every day he seems to be gettin worse. He is on a beta blocker to try to stop the bleeding but he is still losing blood and I guess every month or so will have to have transfusions.

The VA has been a good thing. He's asleep now in the hospital bed they brought today and seems to be enjoying it. His legs and feet hurt all the time and with this bed it will be easier for him to get out of bed and be able to elevate his head.

I worked up until the end of November. Now all my time is taking care of him and it is very hard on me. I have always worked and been with people andnow I am home every day by myself and times goes by so slowly. I seldom get out by myself and when I do, he calls to see when I will be home. But I married him for better or worse. I have had some of the better and now I guess it is time for the worse. Its like living with a different person, he certainly is not the same.
Posted 3/28/2009 3:40 AM (GMT 0)
Paris, I just wrote a long post to you and for some reason it wouldn't post and I lost it.  Hang in there and I will try again tomorrow!  I had some suggestions for you.

Posted 3/31/2009 2:22 AM (GMT 0)

Hi Hopefull2-

I have only posted on this site a few times, but used to read it often before my Father's transplant.  Anyhow, the lactulose didn't seem to help him at first and then after a bout of severe confusion they increased his dosage.  This seemed to help a great deal.  Like someone else said, its different for everyone.  We did take my Dad to the hospital one time, and he was very confused and I was convinced it was his ammonia levels.  Turned out it was his sodium levels.  They were dangerously low, and this causes confusion too.  We completely changed his diet to being beef-free, and very low sodium.  I couldn't tell you if this was a coincidence or not. 

One suggestion I have for you, get a notepad and keep track of all of his scores yourself.  This will help you to gauge how he is doing.  I tracked everything for my Dad and it really helped us understand how he was doing.  I wish you the best of luck! 

Posted 3/31/2009 3:24 AM (GMT 0)
Paris, I am so sorry that you your husband's condition is worsening. I know that it must be so hard for you. This disease is hard on everyone. I hope that you have friends or family you can turn to. You will be in my prayers.
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