Alcoholic Liver Disease is hard to understand...

Hi David, thanks for the insight. I will call on Monday, hopefully they will have all tests back and let us know whats going on. Any specific questions I should be asking?

livelife2014: You have to advocate for yourself. I don't mean being a pain in the rear, just ask questions and make sure you get an answer, even if it's "I don't know." You should always have any and all tests and procedures results given to you in writing or online. I have copies of my MRIs on CD as well.

livelife, I have been away and we have not heard from you in a couple of days.

Your story is so much like ours, I can't believe it. Quitting drinking and staying sober can change everything.

How are you both?

Hugs,

MamaLama

Look back through my posts.

Mike was near death in 2010 from ALD, HCV, HCC.

First he got sober, qualified for transplant, then actually tranplanted.

Before was awful. Awful. But he made it through.

I hope the same for your family.

Hugs.

MamaLama

I do hope he is taking the prescribed Lactulose and Xifaxan! That is the early sign of hepatic encephalopathy (HE), and what you speak of sounds like like HE, which can lead to coma and even death. It is a common problem with cirrhosis.

I saw Don did not want to take it due to the side effects, but that is exactly the purpose of lactulose. I know you said his numbers (ammonia I believe) were 220 in the hospital last time.

My husband is 1.5 years living with HE, and others here know it well. Is Don considering a transplant? Where are you with seeking a transplant evaluation and getting on the list?

I am glad Don is doing better right now, but there are many things you will want to get done while he is doing some better. And taking lactulose is not just to make one go to the bathroom. The lactulose helps the toxins be excreted through the bowel, unlike other laxatives. Sometimes people wind up hospitalized, or worse before they grasp the seriousness of HE. Also, kidney's can cause some same symptoms as HE....so he may need to seek an ER visit to get dx for certain. My guess is HE, but go to an ER if needed. Big Hugs

LL,

Where are you? UK? They may have a year sober requirement. In the US it is 6 months. Many who have sustained sobriety can go a long time before transplant...one of our senior members has been 5 years sober and was recently taken off the tp list! He has done well. Though he still takes the lactulose to keep the HE at bay. Hoping the same in your case.

ML

Don't fret to much about the year wait. As others mentioned it is roughly six months standard here in the US. I was extremely sick during my sobriety evaluation, which led to me missing 2 appointments with addiction therapist. I had to start the program over with 3 months of sobriety on the books. Nine months total sobriety. I was convinced I'd be dead inside four months.

It's a physical and mental challenge to keep your head above the water with this disease. Encephalopathy combined with fear or worry is inevitable. A often lethal combination to most patients as they lose hope and stop fighting to survive. Keeping oneself occupied mentally, physically and being surrounded with positive folks will increase his chances of survival. There is nothing easy about this disease. It will challenge you, him and everyone immediately involved in some form. Remember the old phrase "What doesn't kill you makes you stronger". It's entirely possible you all will walk out of this new and better people. Try and keep your heads up.