Hello, prayers, and welcome to the forum! I am so sorry that your husband is suffering from liver disease. You have found the right place for information and support.
It is my understanding that Lactulose is used to combat high ammonia levels, which cause hepatic encepalopathy (confusion, "out of it" behavior.) I don't believe it has anything to do with lengthening his life, just perhaps making it more bearable. Do you know if he is a transplant candidate?
I suggest you read some of the educational threads on ESLD and what to expect.
Our thoughts and prayers are with you and your husband.
My husband doesnot want to have a transplant. Our doctor tried to get him to consider it due to he felt that my husband was a good candidate.
I did know that lactulose is for removing the ammonia. I may have made an error in the statement.
Hi Karen and welcome to the forum.
I’m sorry to hear that your husband is resistant to treatment and doesn’t want a transplant. This attitude could be associated with the fact that he is confused. My husband was also resistant to taking his lactulose. He hated it. The taste is terrible and the side affects are uncomfortable. He tried to convince me that it didn’t work. But, I knew better.
Ask the doctor about Xifaxin (Rifaximin). This is an antibiotic that is not absorbed into the blood stream. It works within the intestines to control bacteria. Bacteria excrete ammonia further complicating his encephalopathy (confusion). Xifaxin doesn’t replace the lactulose (he really needs to take the lactulose), but it may help clear his mind.
How long he can linger without treatment is impossible for me to predict. ESLD complications are horrible. He could suffer esophageal varices and bleed to death, his kidneys could shut down, or he may slip into hepatic coma and die, etc. These complications can be treated or prevented all together. But, he must cooperate.
Unfortunately, as the cirrhosis advances, you will be the one suffering more than your husband. Without treatment, he will eventually loose his ability to think for himself, feed himself, and forget about hygiene. You will be taking on these responsibilities. Complications arise even with treatment, but as a caregiver it is acceptable so long as there is hope for recovery.
It’s hurtful when the one you love is resistant to treatment. Where does that leave you? Has he considered you in the equation? These are the questions you are left asking yourself. My heart goes out to you. Perhaps if he cooperates enough to clear his mind you can discuss the issue and possibly change his mind.
Don’t give up. There is hope. My husband received a liver transplant January 21st. He is a shell of the man he once was, but now there is a light at the end of the tunnel. It’s a long road to recovery, but one that is worth the effort. He has a positive attitude and is working hard to restore his health.
I wish you the best. You will be in my thoughts and prayers. Keep in touch and let us know how he is doing.
Thanks for you post. I know that I am the one who is having to take care of him. It took our doctor a long time to even get him into the hospital when the diagnosis was made. His mood was so violent that he scared me at the time. When he came out of the hospital his mind was clearer, leg swelling was down.
The doctor has repeatedly tried to get him to take the lactulose. We also tried the antibiotic which you mentioned. He said it just caused diarrhea and inflammed his hemmroids.
For the liver transplant, we did talk with a person from a local hospital regarding the procedure. After she explained the operation, length of hospital stay, medications and return visits required, my husband said he was not going through the procedure. The cost also concrned him. He does think about finances and wants to leave me financially set for the rest of my life. So I have very mixed feelings regading this all.
Karen, I'm sorry to hear that your husband does not want a transplant. What are his reasons? Is he afraid of the surgery itself? Is he drinking by any chance and doesn't want to give it up? Try discussing the issue when he is in a clear state of mind, but don't pressure him. Just have a conversation about his feelings.
Don't give up hope.
Post Edited (hep93) : 2/25/2009 1:03:02 PM (GMT-7)
My husband never was a drinker. The only thing the doctors can attibute this cirrhosis to is his high triglyceride levels for most of his life. His mother has the same and it goes from mother to son. He has a brother who also has very high cholesterol and triglyceride levels. It is a familiar thing. The levels resulted in fatty liver syndrome from what I have been told. Our doctor attended a conference on fatty liver disease after my husband was diagnosed and the main discussion was that fatty liver can lead to cirrhosis.
He did not spend anytime in the hospital due to the car accident which was not his fault. We just spent over 3 years dealing with workman compensation, then social security for which we had to hire a lawyer also for, and then we settled with our insurance company due to the fact that the driver who hit him and the person whose vihicle he was driving had not insurance. We had to settle for not even half of what we had on our policy for uninsured motorist. So yes this along with all the pain which he has constantly indured has taken a toll on him. He did receive ss disability till he turned 65. There are days when I can not stand to see him in the pain that he is in and nowt this liver disease really cuts even deeper into my soul. After the accident and the pain he was in, I would sit next to him, hold him and just cry with him. I spend time walking some days and crying. Yes all this pain has definately palyed a part in his not having the surgery. He is tried of the pain!!
I will definately be having a conversation with our doctor. I have started a list of questions already. I do not want my husband to suffer, so I am defiantely going to make that clear. I will be talking to hospice and vitas to see at what point they can start providing care so to provide him with as much comfort as soon as possible. My husband has said to me many times that he know that I do not like to hear it, but he just wants to die. I have come to some degree in accepting that but not totally. He is too young to die. I am just trying to turn eveything over to God at this point.
Butterflythree, Thanks for you post. It is nice to hear that not all people with this disease become incapacitated or experience the horrible things that come along with cirrhosis. So far my husband has only had the one episode of verbal violence, that was when I and the doctor convienced him that it was time to find out what was wrong. Presently he just sleeps alot, has a poor appetite. His lower legs are swollen, but he has been wearing compression stockings for a long time before the diagnosis.
I will continue to pray that the horrible things with this disease will not affect him.
Hep93, I am going to have to check with SS regarding his disability continuing as you mentioned. But I thought that SS told me that when he turned 65 that he went straight to regular SS. May also call the attorney which finally got his SS disability. What a night mare that was. Thanks for mentioning this.
Thanks to all for the prayers.