Hep C,stage 4 Cirrhosis of the liver

My brothers dr told him yesterday that his daughters should put him in an assisted living home. He'll never do that. He was just put on the stuff he drinks to make him have stools and he's starting to have these horrible headaches. I'm wondering how long he has.

Does he have Hep C, or alcoholic hepatitis.

Is he not interested in transplant? Did his docs know he returned to drinking after the first battle? Reason I ask is if they are aware he's had a drinking problem he may still have to get documentation for 6 months to be elidgble for transplant. By the way, I'm glad to hear he stopped in 2012. Lactulose and Xifaxan are the best combo drugs he can take to fight encephalopathy issues. With todays new treatments he can clear the virus as I understand it. Is he seeing a Hepatologist?

Ziff

My brother seems to have what I call brain fog. He very forgetful and iretated all the time is this common.

Watch this. And have your brother's daughters watch this.

www.hesback.com/

I figure your brother also has other issues of ESLD, besides this troubling issue of hepatic encephalopathy (which we call HE).

Can you tell us what city your brother lives in, and what medical reason makes him not eligible for a transplant? Also, who takes care of your brother on a daily basis as his caregiver? I ask this because he will not be able to live alone with HE... without a lot of oversight and care. He is very sick.

HE has stages. HE causes folks to act mean, angry, act like someone with dementia...but it is not dementia. That is a sign he needs more Lactulose. He may sleep all the time, be very cold, hallucinate, not recognize people, and not know how to do the basic things like work a remote, make coffee, or prepare food, depending on how bad it is. People with HE are not very likable much of the time. It is very difficult to love them and hate the disease. HE can go from not there at all... to a coma... in a matter of minutes. And when HE is present, your brother likely will not know he has it. This has been a great problem for caregivers. If your brother takes any medications other than Lactulose and Xifaxan, some can make HE much, much worse. So his caregiver needs to be aware of that. HE makes people unable to properly take medications.

IF your brother's doctor is not a Hepatologist at a transplant center, (even if he is not eligible for a transplant) it is time to have him seen by one. They understand liver disease and will help with the best outcome. Unless your brother has been through a transplant evaluation (which takes days at a transplant center with a formal denial), then he has not been ruled out for a transplant. In order to be eligible for a liver transplant, one must quit smoking, so this could be the reason he is not eligible?

What "daily" support system is in place? Are you the legal caregiver for your brother? If not, the daughter that is his caregiver needs to help him get all medical directives in order. Someone needs a General POA, and a Durable POA for Health Care so they can make decisions when he his unable to.

My husband has HE and since January 2013. In those 16 months, my husband has had only 3 months he would have been able to live alone. And even then, he should not drive. We have been through multiple hospitalizations and his medical appts. are numerous for things liver disease causes, besides HE. So it is important to figure out who will be the caregiver, if that has not been established. Big Hugs

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Ziff and I did the same thing so I deleted the duplicate...you can put code around a url so that it is "hot", ie you can click on it and go directly to the recommended site.

Post Edited By Moderator (MamaLama) : 4/30/2014 9:27:59 AM (GMT-6)

His daughter has power of attorney and has his medical directives in order so everything like that has been done

I'm sorry to hear that. Only he can make the choice to quit smoking, try to get a transplant and have a second shot at life.

Splash, I'm not familiar with other hospital policies on alcohol but feel like they all are the same from what I gather. Connie and I had a conversation here about that before. There are obvious signs of active alcohol abuse beyond lab test. Obviously medical records would indicate your position X number of years ago and possibly with repeated alcohol abuse it would deteriorate quicker. Stuff like that. Spider veins in cheek bones, tremors in hands and such. Active alcoholics can only fool themselves and people who don't know or ignore the signs.

Connie participated religiously at AA and my feeling is that at some point a friend possibly played a role in her healthcare, Possibly as insignificant as driving her to appointments and back home. Transplant centers look for those "rides" in the waiting room when you go back to be seen. Most cases it's the person you sit next to when your called. If they want they could easily ask that person questions about you and your history. Caretakers when talking to a psychologist (part of transplant evaluation) will speak openly or remained tight lipped about you. Unknowing they to are being evaluated on capability, cope ability or substance abuse enablers.

Robert had you, Medical reports and you or he was openly honest about his past with doctors. My wife would have ratted me out in a minute. She loves me no doubt, but has no tolerance for seeing me kill myself. Even if that meant setting me back in transplant status to make sure I gave 100%. After all she invested 100% in me. She told on me about cigarette smoking right in front of me and the doctor. Doc asked " Rick, You still smoking?". Me: "Naaa trying to cut back doc, Only smoked 5 this week, I'm quitting." Wife: "Ooooooh!!!, Don't sit there and tell him that!!!!". Doc had his back turned and I was giving the wife the stink eye.
Doc just shook his head and kept taking notes. Wife didn't speak to me all the way back home.


Ziff

I love Abby, Sometimes we tend to talk to each other when we see contradictions from one transplant center to another, like tobacco, alcohol, medical marijuana use. It is helpful to get this information so we give solid advice and suggestions as we reply going forward.

I am sorry your brother is not eligible for a transplant. It seems as if he needs care, had someone in place and fired them. HE makes people so very difficult. I wish I had some suggestions. It sounds like his daughter has the directives in order. Good. She would be the one that takes care of him when he can not take care of himself. I guess I need to know this. What can we help you with as you visit your brother? Big Hugs

Splash, I know some transplant centers post tobacco on their literature . I looked at Hartford Hospital literature online. Smoking is listed as one of the contradictions for liver transplantation. But....it also says each patient is evaluated on am individual basis. And the criteria items "frequently preclude" acceptance. So...It sounds like it is up to the team to accept you smoke, or not.

Then I read a study about tobacco use pre and post transplant. It said 10-15% of alcohol users started drinking again post transplant, and 50% of tobacco users started smoking again post transplant. It was a mid 2000's study by NIH, which felt more needed to be done in pre and post transplant with tobacco use.

And I found this article.
http://www.upi.com/Health_News/2012/07/18/Smoking-affects-liver-transplant-health/UPI-56231342592047/

I will dig deeper into what the standard rule of thumb is on tobacco use. It seems medical marijuana is not an issue at Davids transplant center. I have posted articles of people dying after being kicked off a transplant list for testing positive to THC (marijuana) in a legal medical marijuana state.
Big Hugs

Karma.

Ziff

Wow unreal!