Hi, Latinadaydreamer, and welcome to the forum! I am very sorry that your brother is so ill. Apparently, the damage was already done to his liver by the time he stopped drinking. In other words, there was not enough healthy tissue remaining for it to regenerate. He most likely has Stage 4 cirrhosis, which is end-stage liver disease (ESLD.)
It's possible that he would not qualify for transplant due to his diabetes, as the antirejection meds can cause steroid induced diabetes. In someone who already has diabetes, this could go dangerously out of control. I think the other issue is probably his mental disabilities. There is a long, involved evaluation process for getting listed for a new liver, involving many tests. He would need someone with him for all of these. Post transplant, he would need a 24/7 caregiver to make sure the right meds are taken, help him physically with showers, wound care, and drains, etc., etc. However, the goal is for him to do this himself within weeks. In your brother's case, this may not be possible.
Emma gave you some very good advice. Please do check out the Hepatitis Resources folder as it has a lot of excellent information about
liver disease, including the various stages of ESLD.
If there is a large hospital near you that does transplants, that would be your most likely source for a support group--even though he wouldn't be getting a transplant. I know that Mayo has both Caregiver and Transplant Patient support groups. However, they only meet once a week. This forum is here 24/7 and very active. You can always vent, ask questions, seek support here at any time. Please also check out the Caregivers thread. You would be in good company there.
Is your brother having problems with abdominal swelling (ascites) or lower extremity edema? Is he on diuretics? What meds is he currently on? Is he experiencing a lot of forgetfulness or other mental/emotional problems beyond the norm? This could be from an accumulation of toxins in the brain. There is a medication that helps with this, Lactulose. Do you know if he is on that?
It would seem that your brother is not likely to get better. However, he could stabilize somewhat by eating a healthful diet, as Emma summarized, and taking appropriate meds. I would also be interested in knowing if he is being seen by a hepatologist and if that is who said he wouldn't qualify for transplant. Has he has scans of his liver, lots of blood work, perhaps a liver biopsy?
The more information we have, the more we can help you.
P.S. As I was writing the above, you were posting. Lactulose is the medication he is on to remove toxins (ammonia) from his brain. It works through bowel movements. It will cause diarrhea. This is normal. He should be having multiple loose stools per day. The change in him that you notice could well be because of high ammonia levels. And this is why he ended up in assisted living (not really a bad thing.) However, you need to find out if they are giving him too many sedatives or other meds that would make him sleepy. However, sleeping a lot is one of the signs of ESLD. They may be taking urine to check his ammonia levels. Also, the color can determine how ill he is. If it turns dark, that's a bad sign. Can you find a hepatologist (liver specialist) to see your brother? I'm sure you would have to take him in to the office for an appt. However, you could do this as a "2nd opinion." GI docs know more than primary care docs about
liver disease, but not as much as hepatologists.
You know your brother and are aware of changes in him. So do not accept the nurses' opinion that "he's fine." Get him seen! I get the feeling that his GI doc and the staff at the assisted living facility are just "writing him off." And it could be that there is nothing more to be done for him....but I'd want to be sure.
No doctor will tell you that he should avoid red meat. That is something that we patients have discovered and passed on to others. We feel noticeably better after stopping red meat and feel ill if we eat it. In your brother's case, sugar will exacerbate his diabetes. Somehow, other patients need to be put on notice not to give him sweets.
If you will do a search on here for ESLD or ammonia level, you will be able to find posts regarding those issues. There is also an excellent book on liver disease, Dr. Melissa Palmer's Guide To Hepatitis & Liver Disease. You can order it online from amazon.com or other book stores.
The question that most people have is "How much time does he/she have left?" And that is one that can't be answered. It varies so much with each individual. Also it depends on the care they are receiving, diet, their will to live, and many other factors.
Forum moderator - Hepatitis
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland
Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL
Post Edited (hep93) : 12/18/2011 6:15:51 PM (GMT-7)