Cirrhosis Support Group

My husband Ron was diagnosed with cirrhosis in 2005 and liver cancer in 2006. The cirrhosis is more of a problem than the cancer. We are now struggling with the confusion from hepatic encephalopathy or more correctly I am because Ron doesn't think he's confused. It's not all the time and we're trying to control it with Lactulose and Xifaxin.In addition to this the lactulose causes him to be incontinent of BM at timesand he wears a disposable brief.

I work full time and he has to be home alone.I call several times a day.He can still drive and run errands and does the wash and vacumming. In March I came home one day and found him unconscious and he was in the hospital for a week with toxic hepatic encephalopathy. I would not feel safe leaving him alone overnight unless one of my stepsons could stay with him.

lizekay,

Welcome to the group. I'm sorry about your husband.

Have you tried to get home day care for him. here the local home health will do day care if prescribed by a Dr. Or maybe a friend , neighbor or someone from a local church.I know it must be hard for you. although we have the disease and its our lives that are endangered . Cirrhosis is a disease that affects the entire family.

Often the primary care giver is the one that has the hardest job.I have seen this disease make and break families its so hard to deal with the grieving as well as the daily problems that arise. You are to be commended for fighting so hard for him and working at the same time.

How advanced is his cancer? Is it confined to the liver and is it being treated? If there is anything I can help with just let me know. Again let me welcome you to the group.

Gail

Thanks Gail. Ron did have home health care after he was discharged from the hospital. Right now he's OK at home. I manage all his medications and as a nurse I've become adept at managing his Lactulose and Aldactone. His cancer is under control. He takes Nexavar 200mg daily.There is no active cancer at this tme. He does have portal hypertension with the cirrhosis. We take it a day at a time. thanks for your support

lizekay,

As a nurse I am quiet certain that you are more than adept at managing your husbands meds.I am curious if he were considering transplant since primary liver cancer will bump him up the list.

Even before the cirrhosis worsens.

I'm glad that you used home health, I have had pretty good luck with them so far.I know my family enjoys the break when needed.Right now they are not needed here either but its nice to know where to look when you need help.

Gail

The complications from the cirrhosis make the testing invasive and risk. Ron is also 69 which makes him a poor candidate as well so we opted not to pursue the transplant.

lizekay,

I do understand. I feel transplants are a very personal choice. For every person I know that runs toward that direction there are just as many that do not.

But you would be surprised at the number of people that do not realize it is a option even at advanced age.

As a nurse I am certain that you see many people that have no idea what options are out there. I was surprised to learn that the oldest recipient was 76 and is now 83 and doing well. I guess that somewhere along the line you have to get into the question of what is more important quality or quantity though.

I do know that if having a transplant meant that I would live 5 years , but not feel any better than I do right this moment . I would decline the offer.

Best always

Gail

Thanks Gail,

Tomorrow I am starting to see a counselor to help me deal with all this. I decided I need some help. My friends are very supportive but not objective. It'll be good to speak with someone who has no vested interested.

Liz

liz,

The old saying "walk a mile in my shoes" is appropriate for both you and your husband. No one else knows what is best for the 2 of you.

I hope the counseling is helpful.Know we are here for you if you need to vent.

Gail

Liz,

My husband has cirrhosis too and he is okay one day and the next day he is so exhausted that he doesn't even want to get up. He has been complaining of back pain on his right side that kinda worry's me. I just wanted to welcome you to the group and ask you if the counseling is helping you? I have been thinking about going to counseling too. Sometimes I am at the end of my rope. I am sorry you are going through this because it is not easy it is really hard on the family and espically the partner. My husband is only 56 and he has been sick since May 07.

Thanks Arod54,

Thanks for your post. Ron's had cirrhosis since November of 05 and liver cancer since November 06. Encephalopathy is the big problem we (or should I say I)have to deal with. I say I because he doesn't realize it's happening. It is hard on the partner. I often think I don't have a husband I have a patient. Although I work with Dementia patients on a daily basis I don't have the patience for it when I get home. I know it's not his fault so I started counseling to help me deal with this as it progresses. I've only had 1 session so it's too soon to tell if it will help. I've become an expert on adjusting his lactulose dose. I know just how you feel.