Caregivers of Cirrhosis Community Group
This place is for anyone caring for someone fighting this disease. A place to share your experiences.
I'm new too. HE scares the heck out of me!
aztina
Hi, I'm new here too. My husband had a liver biopsy about a month ago which confirmed cirrhosis. He has been having the ascites for over a year but his test results did not indicate a liver problem so we had to rule out heart problems etc. first. It took us almost a year to get into see the liver specialist. His gastro was ordering paracentesis for him about every 6 weeks and they were taking 16-19 liters at a time. The liver specialist has him on a weekly schedule since March and they take at 5-6 liters a week. We are eating a low sodium diet but he cheats. Last week he came home with a bag of Fritos. He's also on diuretics but we need to be careful because he went into kidney failure in February. He stopped drinking alcohol about 8 or 9 months ago but I haven't seen any improvements. His symptoms only seem to be getting worse. The liver specialist said their may be something hereditary at work too (Wilson's disease?). His MELD score is only around 10 or 11. He has portal hypertension. We see the doctor again in 2 weeks and will ask about TIPS. I haven't seen any jaundice or varices bleeding. He bruises easily. He has not lost weight. We were told that he is not a good candidate for a transplant. Right now we are trying to decide if we should go see another doctor or go before the transplant team where he is now.
But the thing that scares me the most is the hepatic encephalopthy! I'm sitting in the bedroom right now because he is so argumentative and he has the TV so loud I can barely stand it at the other end of the house! My husband lost his job over 3 years ago and I've been supporting us. He's close to being able to get his retirement but it will continue to be a financial struggle until then. But at least we have health insurance. My 24 yo unemployed son lives with us and my husband, who is not my son's father, seems to be centering all of his anger and frustration on my son. There relationship was never great so at first I didn't think much of his ramblings. But now he is saying the most ridiculous things and accusing me of conspiring with my son behind his back. I'm noticing a pattern that it gets really bad a couple of days after parencentisis. Today was the worst so far. My husband called me at work to tell me my son slammed his bedroom door and asked me what I'm going to do about it. My son called me and told me someone threw a rock through the window on his car. I don't want to think it was my husband but I'm not sure what he is capable of anymore. In the meantime I'm working against a deadline for work and I can't concentrate on anything. I'm a nervous wreck. Driving home tonight I wanted to go anywhere else but home. I think I will make arrangements for my son to live elsewhere (although I'm afraid the full force of his anger will turn against me) and I will call the doctor tomorrow to see if we can get some lactulous, or something.
He's never been a physically violent man although he's always had a temper. Do I need to worry about him turning physically violent? Any coping techniques/advise would be appreciated.
Thanks for reading all of this. It helped just to write it.
But the thing that scares me the most is the hepatic encephalopthy! I'm sitting in the bedroom right now because he is so argumentative and he has the TV so loud I can barely stand it at the other end of the house! My husband lost his job over 3 years ago and I've been supporting us. He's close to being able to get his retirement but it will continue to be a financial struggle until then. But at least we have health insurance. My 24 yo unemployed son lives with us and my husband, who is not my son's father, seems to be centering all of his anger and frustration on my son. There relationship was never great so at first I didn't think much of his ramblings. But now he is saying the most ridiculous things and accusing me of conspiring with my son behind his back. I'm noticing a pattern that it gets really bad a couple of days after parencentisis. Today was the worst so far. My husband called me at work to tell me my son slammed his bedroom door and asked me what I'm going to do about it. My son called me and told me someone threw a rock through the window on his car. I don't want to think it was my husband but I'm not sure what he is capable of anymore. In the meantime I'm working against a deadline for work and I can't concentrate on anything. I'm a nervous wreck. Driving home tonight I wanted to go anywhere else but home. I think I will make arrangements for my son to live elsewhere (although I'm afraid the full force of his anger will turn against me) and I will call the doctor tomorrow to see if we can get some lactulous, or something.
He's never been a physically violent man although he's always had a temper. Do I need to worry about him turning physically violent? Any coping techniques/advise would be appreciated.
Thanks for reading all of this. It helped just to write it.
momodek, I can identify with the problem with the remote! I just want to grab it from him sometimes but now that I know why it is happening I just let him struggle with it.
Thank you all for being so helpful. I have a feelings I'm going to depend on this site a lot.
OMG! I have never heard of anyone getting a liver so fast!!! That is DIVINE INTERVENTION - PRAISE GOD!!!!
You will have to keep us posted on how he is doing....Fantastic news!!!
Aztina - are things better now? Is he on medication or did he go to the doctor?
But I'm a nurse, and I know what is in the future. We've already done the 'protocol'...and we won't do it again. He wouldn't survive it. I just want to get my house ready to put on the market, so i can sell it and get my husband to Puerto Rico. Right now he has 6 yr to retirement, but I don't see how he will be able to work till then. He's doing the best he can, but is becoming increasingly paranoid, with intrusive violent thoughts. He often won't leave the bedroom, and hides under the covers. I have so much to do... and I'm on my own to do it.
Never forget that self-destructive behavior is, in most cases, the major reason why he has cirrhosis.
After 10 years of dealing with my SO, I understand that if I stopped doing what I do for him, he would eventually go right back to substance abuse.
I feel for you, having your sons in this mix of this all. I'm sure they are as worried and frustrated as you are. Praying for you (hugs)
This all sounds like my husband he has many mood swings
Remotes are a big issue for him . He get so frustrated tries to use his phone to change
Channels and cussing the whole time. I feel bad for him and try to help. Which only
Only upsets him more. So I just have to leave him alone.
Somethimes I just have to laugh if not I would get.
Low . He too has very fast mood swings. Gets severely depressed and defensive.
Argumentative. I just have to leave at times for my non insanity.
If I sit in the same room waiting for him to speak it would be hours but let me start
Doing something then I don't want to spend time with him.
There is no happy mediums.
Thank goodness for my bedroom.,where I can go and relax a little.
So I can keep myself calm. I know he can not help it but sometimes it just hard