Husband with bleeding varices

Hi all,

I am new here. My husband has cirrhosis which we first found out two years ago when he was hospitalized with bleeding varices. Since then he had been doing reasonably well although understandably tired after work and liking to sleep a lot at the weekends. He was also feeling depressed and not wanting to see many people.

Since March this year he became a lot worse mentally, getting extremely angry for no clear reason. He was doing things that did not make sense and in July only a month after our baby was born he literally walked out of our home one day. He told me later he didn't know why. Anything I asked he said he didn't know, did he want to come back, how was he feeling.

A few weeks ago he was again hospitalized with bleeding and this time was a whole lot worse. he almost died twice and is making a very slow but sure recovery after TIPS.

Right now I am just relieved that he made it. He was very much neglected in the in-between period as he was not checked over at all despite us requesting this including us telling his doctor that he was exhibiting strange behavior.

I have a lot of concerns. he was talking about coming home before the second bleed however I don't think I will be able to look after him in this state as we also have very young children and i am working full time. I found out he was staying with a "friend" who has been taking a lot of money from him (and likely he was forgetting how much) and his family are far away.

I really need to know what questions should I be asking the hospital. Thankfully he is now in a specialist liver department but I don't even know what I should be asking them. I have heard that TIPS makes HE worse so I am extremely concerned for his welfare with this supposed friend in the picture.

I hope you don't mind me getting this off my chest - I feel so sad to see him this way and feeling like there is nothing that I can do.

Welcome to the Hep forum, whatandwhy. My husband has cirrhosis from Hep C and was diagnosed over 10 years ago. He also had TIPS about 3 years ago, due to bleeds, and now is on the transplant list.

TIPS is known as a bridge to transplant, so your husband would likely be referred for transplant evaluation now, if he has not been before. He will need to have documented sobriety for 6 months to be listed. Documented is normally done with an AA program. Some do get approved counselling or therapy based on the transplant center.

We suggest he see a hepatologist affiliated with a transplant center, even though he may not need a transplant right away. These folks are the liver specialists.


I would think the doctor will start your husband on lactulose and Xifaxan. The goal is 3-4 loose bm's per day, or more. And he may be told not to drive until he has a transplant and no longer is living with HE. HE is extremely difficult on the one with HE, and everyone who loves them. We are here for you. Big Hugs

Oh, my,, this is a rough situation.

With young children and a hubby who is very ill, but still working, and now plagued by Hepatic Encephalopathy....what a mess.

It seems as though he may actually be quite young. And in need of more care than he can provide himself. And your family is in danger from his financial vulnerability.

Though family is far away, is there a strong parental person who is still alive and important in his life, who could come see you and help organize a family meeting?

Have you a lawyer or insurance agent or financial advisor you can consult? YOU need to take control of the family matters. Someone with active HE should not be driving, working at a job where his decisions could hurt others or negatively impact the business. And he has obligations at home...small children, etc.

My partner went through rough times for years, but I organized the finances, etc so that he couldn't not mess us up.

Liver disease can be the financial ruin of any family, many on this site have their own stories.

I think accepting that cirrhosis and HE and those bleeds are really serious and he is very ill will be hard. And then you need to make a plan. It would be great if you could make the plan together. But YOU have to make a plan...for now.... for after. This may be difficult. It was for my family.

Best to you,

Mama Lama

You sadly don't have a problem with him. He has a problem that you can't do much about. Members here have seen the damage of what you are saying. Your dealing with two separate issues that are explosive. While I'd love to help (If I could) with his liver issues, You have to get a handle on your marital issues yourself. My deepest sympathies to you and your child.


Ziff

If you can get him to straighten the personal issues out that are blocking you from helping him battle this disease. I'll do my best to help. I'm a non practicing alcoholic, My lack of control with addiction caused my liver disease. My wife stood by me through rough times. That's not a uncommon problem around here. Putting a dysfunctional relationship with a party who doesn't want to try is a waste of time and ultimately ends in grief and death. We see people who are committed on both ends and death and grief still come far too often. You and the person your helping have to be committed 100 percent or nothing will work. Seek marriage counseling, ALANON will help you with proper tools also. You have to do what's best for you and you aint the sick one. You can be a cornerstone of him making a comeback, but if he aint in it your wasting your time.


Ziff

Whatandwhy,

You have 4 huge but separate issues here. Illness, Marital, financial and greedy manipulative "friends". Only one of them you can attempt to control... and that is your finances. If your husband isn't taking care of you and the kids.. you need to. Get a good lawyer and get one fast before the husband gives everything to this "friend".

I've been in your shoes. I hired one of the best lawyers in town and put all finances on lock down and thank god I did or everything we have would be in the hands of unscrupulious, greedy "friends". Not one of the "friends" ever lent a helping hand during the illness but they sure had no problem having been named beneficiary of insurance policies and bank accounts.

As for being a caregiver to someone with ESLD......... it's the toughest, most heart wrenching job I ever had. It scars you for life. I will NEVER be the same. I'm pretty sure I have PTSD as a result of the bleed. It was extremely traumatic and horrifically graphic. And I had to clean it up. Watching the person you love waste away and you can't do anything to stop it is something no one should ever have to endure. But we do, because that is life and sometimes it really sucks. I'm a much stronger person now than I was. I learned a lot about myself. I was an enabler. I had to accept the fact that my husband was an alcoholic. I didn't think he was because he was rarely intoxicated. Alanon helped me greatly. I am no longer an enabler. I call BS when I see it and I refuse to engage and get sucked into his drama. And I protected myself and my kids. We are no longer together as a result. He received a transplant but he still thinks like an alcoholic with the lies and manipulation. I had to remove myself from his toxicity. He was given a 2nd chance but chooses to live in the past and remain toxic. I continue to help and support him though his struggles but I do it at a distance and only when he reaches out to me. That might be what you have to do. Only you know, but know that it's OK to protect you.

You have small kids who must be your priority. They need one of the two of you, and tag you seem to be it. Put them and yourself first. It might sound harsh, but darlin' your husband isn't putting his family first right now.

When he is ready to be an active contributing part of the family, the scenario changes.

Illness is not an excuse for poor behavior. He has a family and is living on borrowed time. He should be home with his wife and kids not with the "friend".

Is your name on that car?? Is that car on your auto insurance policy? What gives this "friend" the right to take your husbands (probably legally your car too). If that friend has an accident, your liable. Get that crap taken care of ASAP.

One of the things I failed to do was remove my husband from our auto policy. I controlled the policy because it was mine prior to the marriage, he was an "add on". He was driving with HE and 2 weeks AFTER his transplant. He made his own decisions with no regard for the safety of anyone else. He knew he wasn't supposed to drive. Well, he had an accident... thankfully a minor fender bender..but my insurance rates went up as a result. But he is no longer on my policy and anything he does, I can no longer be held financially responsible. Protect yourself and your kids. If the car hasn't resided at your home in the last 30 days... you can get him removed. Call your agent.

Been there. Done that.

Post Edited (diamonte) : 11/12/2015 11:46:04 PM (GMT-7)