48 years old..Severe Alcohol Hepatitis....drank for 20 plus years

I drank every day for 20 plus years...And believe me when I say this I didn't believe it would hurt me. I believe if I drank when I got off work a few drinks it would be okay. Before I knew 20 years rolled on by.

Back in Oct 2015 I went on a cruise. Buy this time I kind of slow down on drinking, I would just drink maybe 3 days a week. I started drinking a little less about two years prior. But on the cruise me and a couple of friends took three drinks or four drinks back to back the night before ported back in Louisiana. The next day when I got to work I felt sick,my urine output wasn't the same and I just feel unwell all over.

Next few months was hell!!! I lost weight , mostly muscle mask, red palms, smaller testicles. larger men breast, lighter stools, weakness and fatigue, and etc. I went to my Primary Care Doctor and she notice my liver enzymes was high...165 ALlt 75 AST or vise versa....They stay around that range and still is, I haven't had them check in about a month. I say around the beginning of this month (March) I started getting my energy back (I didn't work Nov, Dec, or most of Jan) My urine still isn't right...My GFR is fluctuating and when my PC sent me to kidney doctor my creatine was high 1.3 in the month of FEB. Well I have decided to have a biopsy done but it's going to be awhile because going through the VA can be a wait (Twenty Three Years Army) retired VET. I'm having a dull ache under my right rib cage now...And I feel like a have some ascites too, but my PC doctor did and ultrasound and it came back negative..I have the green veins on the side of stomach and maybe a couple more symptoms of ALD or cirrhosis ....Just don't know what to do...I haven't had a drink since that day on the Cruise....Help!!!!....What is meant by 6 month mortality time? Does it mean I will get better and then all of the sudden get worse when the 6 months come and go down hill? confuse...or is this acute on chronic liver disease....Yes! soon as I have this biospy am going to get hepatologist ...MHUMP....Help please

"What is meant by 6 month mortality time? Does it mean I will get better and then all of the sudden get worse when the 6 months come and go down hill?".
Who or what gave you that time frame? I can understand you being a bit nervous, but lets not read into this too far till you have solid evidence of a diagnosis. While you have concern with past alcoholic problems and a night of binge drinking you have abstained since that incident. That's the single best thing you could have done until you have this nailed down. Stay persistent with medical staff. You are your only advocate.


Ziff

Hey mhump!
From a vet to a vet, you're going to be ok, brother.
You know, we're not going to live forever, but you seem to have several more years left. :)
There's many more symptoms that you are NOT having, which if you DID have would indicate a more dire circumstance.
So relax, drink good clean water, eat a healthy diet.
Patience, study the disease, find out where you stand, and don't obsess.
Like the military, this is a mental challenge.
Learn about MELD scores and see if you rate.
And if you can, exercise.
This is life changing for the good. Make new friends. Help some old.
Replace the alcohol with a nice walk through the bayou, or visiting sick guys at the VA.
I'm happy, and I'm sure everyone else is, that you are making positive moves and you are here to encourage others.
Have a great day!
Dog

mhump,

I wrote a long response in welcome to our forum yesterday and and then zip zip, off it went. So, today I am not doing it from a tablet, but rather my PC. Hoping for better luck.

Those who have been on this forum a while know this story well...but here goes.

My partner, Mike, is the one with liver disease in our house. He, like you, was feeling horrible in 2003. He had known he had Hep C for several years, but it had been quiet. AND he was a daily drinker...cocktails, beer, wine...no breaking up bars or getting DUIs, but from after work til bedtime it was a "bottomless pour."

He took the only treatment at the time, Ribavirin and Interferon, for 6 months and got sicker on the meds and did not clear the virus. He was so ill, he went for a second opinion at a transplant center in NY, about 100 miles from our home. He had a high Hep C viral load. AND Cirrhosis (ALD _Hep C). A biopsy confirmed that. The NY doc told him that even with both problems, he could live 15 years before "getting into trouble." The caveat was IF HE STOPPED DRINKING AND STAYED ON A HEALTHY DIET. He did not. He'd say things like if I am just dying I want to die happy.

By 2010, his liver was decompensated...he was in Endstage Liver Disease (ESLD)...his Hep C Viral load was sky high and his Liver Function tests were way out of range. There is a Mathematical Calculation of the MELD score, that tells you how sick you are, and on the average, the mortalilty rate for an average person who has your lab numbers for bilirubin, INR and creatinine. Here is a link to that calculation:

www.mayoclinic.org/medical-professionals/model-end-stage-liver-disease/meld-score-90-day-mortality-rate-alcoholic-hepatitis

So, in 2010, Mike was being seen by a hepatologist in our town where we moved to in Florida. And he told us Mike's Meld and Labs and Viral Load (which you don't have evidently...did they test the viral heps?). That doc said "when it was time" they would refer him to a Transplant Center. But Mike just got sicker and sicker...til another doc he saw got hold of his labs and had a FIT, called TP in Miami and got Mike an appointment right away.

The pre TP doc wanted to keep Mike the day he arrived for his first appointment because his MELD score was 26, higher than the MELD score they transplant at.

HOWEVER, they realized he was a drinking man and he had to go through 6 months sober before he could get on a list. They put him on all kinds of meds, required AA meeting proof (initialed calendar) and an ethanol blood draw weekly!!!! It was rough....

But amazingly, off the booze, and taking lactulose, xifaxan, blood pressure pills, etc, his MELD came down enough so that he lived until he was #1 on the UNOS list for his blood type in our region. He was successfully transplanted May 1st, 2011.

None of this is saying everyone lives who stops drinking...but Ziff sure has...even off the transplant list he has done so well.

Is my Mike perfect, no. But he is alive, sober 5 1/2 years and playing golf some.

So...my recommendations...continue sobriety, exercise, eat healthy, get lots of sleep if you can (some with liver disease have interrupted sleep), AND try to see if your docs will refer you to a TP center for your ongoing care...there is where the really best liver doctors are...where the action is.

I will tell you another thing...it happened to Mike and Ziff has spoken about it from time to time...some docs don't give those with substance problems their full attention...Mike's doc was waiting for Mike to get sober before he sent him to TP...but never said that to him right out in words! Grrr.

I hope you have put a plug in the jug for good.

Hugs,

Mama Lama

mhump, kidney stuff is very typical of liver disease. The liver processes wastes among other things and doesn't do that well when there is liver disease. Mike's kidneys are still messed up post Hep C, post Transplant...not on dialysis at this time, but the doc says it could come to that. You know you are in trouble kidney wise when you pee coke colored urine.

At one time they did the liver biopsy with you awake. Mike had 2 like that. He said it felt like a punch and was over in a second. The more recent ones they have given him some propofol and he was out when they did the biopsy. That didn't hurt at all!!!!!

Some doctors order a fibroscan these days instead of biopsy...it too gives a reliable measure of cirrhosis.

On the blue line above these threads, there is a SEARCH tab. You can put in any key word and old posts with that theme are sorted to review.

AND a the top of the posts the first two are sticky posts with information you may find interesting...lots of links.

I'll ask themiz to post the link to the HE utube video. As of now you seem not to be having Hepatic Encephalopathy...this is where unprocessed wastes circulate in your blood instead of be discharged as urine or feces, rather it circulates to the brain and causes changes. Some are distracted as if in a fog, lose some memory, can't keep things organized. What is really interesting is that some meds can clear that up. Mike got his brain back to normal the very day of his transplant!!!

Best to you,

Mama Lama

mhump
thank you for that 23 years of service!!!!

and a big congrats on your 5 months of sobriety.
that is the key..

Thank you A. Ziffle,

I wish I had gotten insurance through my job but I thought with VA and Tricare Prime I would be alright. But as you know with Tricare Prime your PCP have to put you in for a referral and even with VA they take there time with calling you back. Soon as I get dates on my biopsy I will switch over to Hepatolgoist. I asked my PCP and she said they have to refer me to the GI doctor first. After my dr appt, he said who ever do the biopsy will take over my case.

Do you think I should do AA classes now or should I wait until I get diagnose with liver disease/cirrhosis? I haven't had a drink since Nov 2015 and don't have no desire to have one but dont they want documentation that I have been going and been clean?

I know it's been awhile since I wrote, but I was waiting for a notification to pop up on my email. Thanks everyone for all the good advice. A. Ziffle I didn't know you have been dealing with this since 2011, if not let me know how long? I will look into the six month sobriety AA program, just don't know where to start..but VA will be a good start.

That pain in the upper right side under my rib cage has gotten better and I thank God I still work and is able to work. I get fatigue quicker and sometimes give out of breath from exhaustion but I can't complain. I go to see the VA doctor today and I will ask her for classes on AA that are documented. I got a call yesterday from a nurse saying why am I requesting a biopsy and that I can't get one until all other test like MRI and CT scans are ruled out....

Mhump, I been dealing with ESLD since 2008. I joined this forum actually in late 2008 under a different screen name. Encephalopathy In my case has remained fairly controllable and may have gotten a bit better since TIPS surgery was done. Been lucky I guess. Taking Lactulose to the point of three loose bowel movements a day will reduce issues with ammonia build up. Taking a drug called Xifaxin also greatly reduces toxicity issue's caused by Liver disease.

Concentration is probably my biggest issue. I can't stay focused and that in turn leads to frustration. It was so bad at one point that I couldn't put a complete sentence together while speaking ( A mess of jumbled up words only came out). That's what will happen if I don't stay on medications. It's difficult to watch oneself taking meds correctly when you can't think straight. I've gotten a pretty good routine with taking meds but still find my wife has to remind me. She can see the symptoms of HE long before I realize it has me in it's grip. Slurred speech and trouble with my balance just walking. I have sleep reversal or just erratic sleep patterns also. Fighting the desire to sit or lay down (tiredness) is forever a issue. It sucks, but it's nothing to be scared of unless you choose to do nothing about it. You don't seem to be dealing with a bad case of HE at this time. That may or may not change. We each respond differently to this disease. That being said. Case studies and term papers tend to lump us into one category or another. We read a article somewhere and assign ourselves into one of the groups. Don't do that. See what the results for your test are. Do what is required to survive and you'll be fine.

Ziff

I have my biopsy done on the 14 April...Any suggestions? I know Mama said there are different procedures that can be done to detect cirrhosis and how much your liver is cirrhotic. And will that be when they assign me a Herpetologist?

Hi Sandi...nice to meet you, sorry to hear about your lost, even though it's been six years I know it still hurts. I haven't got cirrhosis confirm but next week on the 14th I talk with a radiologist. Yes, hopefully they will give me a hematologist or I will request one.

what is going on? hope everyone is having a great week....I stated before about the right upper side of stomach been aching right under my rib cage...Did a little research and it's the gallbladder or gallstones. The pain was a dull ache, but when I eat fatty food I feel more of a intense feeling, not enough to run to the emergency room but I can feel like a golf ball right under my rib cage. I was wondering should I do a gallbladder flush? which consist of organic apple juice, lemon juice, and virgin olive oil?

I have read that alcoholic liver disease especially advice liver disease give you gallstones....What should I do?

Try getting a MRI or at the minimum Sonogram done. Biopsy is usually the recommended (sure fire) way, but imaging could put your mind at ease as far as other complications are concerned.

Ziff