My husband has cirrohsis

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prayers
New Member


Date Joined Feb 2009
Total Posts : 13
   Posted 2/24/2009 7:50 PM (GMT -7)   
My husband was diagnosed October 2007 with cirrhosis. He is unable to tolerate lactulose, so does not take the med. I know that without this med his life is shortened.
He spends much of many days sleeping. Sometimes is confused or unable to concentrate.
 
I was trying to find out what to expect as the months go on. I am very scared.
 
He as suffered with chronic back pain due to a very serious automobile accident in 2000, not his fault and then was dignosed with cirrhosis. So he has been suffering with pain for many years. There are days when I have cr
ied with him.
 
I have read many post and now have some questions for the doctor on the next visit in March.
 
Prayers, KW

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/24/2009 8:19 PM (GMT -7)   

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.


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


prayers
New Member


Date Joined Feb 2009
Total Posts : 13
   Posted 2/25/2009 12:07 AM (GMT -7)   

Hep93

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.

Karen 


pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 2/25/2009 4:30 AM (GMT -7)   

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.

 

Penny


prayers
New Member


Date Joined Feb 2009
Total Posts : 13
   Posted 2/25/2009 12:54 PM (GMT -7)   

Penny,

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. 

He was involved in a serious car accident which left him totally disabled due to mutiple ruptured disk or bulging disk. As a reseult he has suffered constant non stop back pain. I feel that this constant pain has played a lot into his emotional state regarding the liver disease.
 
I was looking for some answers, but at present I now wish I had not read what appears to be down the road. Now my emotions are in even more turmoil. I do know that I will be having a serious talk with our doctor.
 
Karen

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/25/2009 12:58 PM (GMT -7)   

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.

ETA:  Apparently we were posting at the same time.  If he spent a lot of time in the hospital and has been in a lot of pain due to his accident, I can sort of see his point of view of not wanting any more of that.  It would be a good idea to speak frankly to his doctor about what to expect.  Is your husband receiving benefits from the auto accident?  Financially, he may not qualify for Medicaid.  Has he tried for SS Disability or is he getting it now?  If so, then he will be eligible for Medicare if approved.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 2/25/2009 1:03:02 PM (GMT-7)


prayers
New Member


Date Joined Feb 2009
Total Posts : 13
   Posted 2/25/2009 3:46 PM (GMT -7)   

Hep93

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.

Karen     


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/25/2009 5:34 PM (GMT -7)   
Karen, I'm sorry you both have gone through so much, and continue to.  I understand the fatty liver disease, but not about his receiving SS Disability until 65.  Why would it stop then?  I started receiving it at 62 and it will continue for life, in the same amount I would have gotten at full retirement age (plus yearly cost-of-living increases.)

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 2/25/2009 8:58 PM (GMT -7)   
Welcome to the forum Prayers. I am so sorry that your husband is in so much pain and also dealing with this disease. Have you tried putting the lactulose in fruit juice or Sprite? I have heard of a few people doing that and it worked for them. I know dealing with cronic pain is not easy. I'm sorry that it has made your husband so ready to give up. Not all people experience the same symptoms or progressions with cirrhosis. My brother in law who passed away from it about six years ago never became incapacitated until about a week before he died. I also have an uncle that passed away many years ago that didn't experience most of the horrible things that come along with cirrhosis. My husband on the other hand has experienced extreme fatigue, encephalopathy, and a severe bleed in his stomach due to varices caused from portal hypertension. He had the TIPS procedure about a month ago to relieve the pressure on the varices to decrease the chances of another bleed. He has done pretty well since the procedure. We just try to take it one day at a time. Try not to worry about what may be, but at the same time try to be prepared. Knowledge is the only weapon one can have against this disease.

I'll be praying for you both.
Butterflythree
 
There is always hope!


prayers
New Member


Date Joined Feb 2009
Total Posts : 13
   Posted 2/25/2009 10:28 PM (GMT -7)   

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.

 

prayers
New Member


Date Joined Feb 2009
Total Posts : 13
   Posted 2/25/2009 10:35 PM (GMT -7)   

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.


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 2/26/2009 4:19 AM (GMT -7)   
prayers

Just wanted to add my welcome to Healingwell. I too was diagnosised with cirrhosis in January 2008 and the diagnosis itself was so frightening. It is certainly possible that his reluctance to take medications or thougths of a transplant are being motivated by the fearand hopelessness that this diagnosis can bring. I know my own first thoughts were "what does it matter I am going to die anyway". I think you have made a courageous first step by educating yourself on this disease and the next step will be for him to educate himself. Hopefully once he begins to see that this is not an automatic death sentence, he will be willing to fight this with you.

Good luck on your journey.

Lucy

Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 2/26/2009 12:05 PM (GMT -7)   
Prayers,

My husband has had ESLD for over a year now, his doctor told him last Feb. that he had better get his affairs in order and that his only hope was a transplant. It is now a year later and he is doing so much better, he does get depressed because he thought that once his MELD went down that he would be back to himself, I told him that he just dosen't remember how bad he was! He takes the Enulose and is on an expermental program at the hospital where he takes 550 mg. of Rifaximin which has really helped him. I pray that you can talk him into trying and that there is hope.

Judith
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