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

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mhump
Regular Member


Date Joined Mar 2016
Total Posts : 43
   Posted 3/23/2016 4:19 AM (GMT -7)   
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

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 3/23/2016 11:01 AM (GMT -7)   
Welcome to the Hep forum, mhump. We are those with liver disease and those who love them. I would suggest you rule out Hep C, if your doctor has not done that yet.



While you wait for other members to pop in and support you, I will give you a link to Ziff's story. His story is full of hope. www.healingwell.com/community/default.aspx?f=25&m=3293465

Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

A.Ziffle
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Date Joined May 2011
Total Posts : 2072
   Posted 3/24/2016 4:42 PM (GMT -7)   
"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
"The truth will set you free, but not before it pisses you off."

mhump
Regular Member


Date Joined Mar 2016
Total Posts : 43
   Posted 3/24/2016 11:06 PM (GMT -7)   
Thanks for responding back

That six month mortality thing I got off the internet when I google Servere Alcoholic Hepatitis...And yes a bit nervous. I don't want anything to drink for the rest of my life...believe that! I'am an Army Vet and they are bagged up on the biopsy list around six weeks or so...But I did call Health.net and a nice young lady said she will have a answer to see if she can navigate to see if I can be source out to another hospital perhaps in Atlanta or Alabama, I don't mind traveling. Even after I have quit drinking I feel cirrhosis is still going forward in my body...symptoms are still happening...I have a appt with a GI doctor tomorrow but he doesn't do the procedure ....So I will see if he can get me a biopsy done sooner somewhere else...pray for me....

MHUMP

Dog LeDon
Regular Member


Date Joined Apr 2014
Total Posts : 191
   Posted 3/25/2016 5:39 AM (GMT -7)   
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
Regular Member


Date Joined Mar 2016
Total Posts : 43
   Posted 3/25/2016 8:40 AM (GMT -7)   
Thanks so much Dog! just came back from the GI doctor and he is going to get me a referral for a biopsy as well....Yes, exercise will help...thanks again Dog!

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4806
   Posted 3/25/2016 11:39 AM (GMT -7)   
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
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

mhump
Regular Member


Date Joined Mar 2016
Total Posts : 43
   Posted 3/25/2016 12:25 PM (GMT -7)   
Yes Mama Lama!!! I have put a plug in the jug for GOOD!!!

I stop drinking Nov 1 2015 but there are a few things I worry about. My kidneys aren't working right, I urine but not like before, I guess that is years of ethanol drinking...And I have Budd–Chiari syndrome that is getting worse and maybe slow ascites (I go for a CT scan next week) and I feel some kind of affection in my body.. My head hurts and this squeaking sound in my head when I walk ( yes sound strange I know) I think it's some kind of bacterial infection of the blood but not really sure.

The Gastro doctor I saw today is not real attentive I feel. But he's working on biopsy for me, do they hurt? and what kind should I get?

I thank everyone for there love and support this is good therapy. I don't have any family out here and I live alone. Just Me! thanks again everyone!!

Thanks for the welcome!!!

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4806
   Posted 3/25/2016 12:43 PM (GMT -7)   
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
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Post Edited (MamaLama) : 3/25/2016 8:02:09 PM (GMT-6)


themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 3/25/2016 2:18 PM (GMT -7)   
Here is the link to the documentary on hepatic encephalopathy. Big Hugs

www.hesback.com
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1116
   Posted 3/25/2016 5:31 PM (GMT -7)   
mhump
thank you for that 23 years of service!!!!

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

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2072
   Posted 3/25/2016 8:15 PM (GMT -7)   
Mhump, Mamalama gave you sound advice about seeing specialist. Everything changed after I got to see a Hepatologist. My doc at UNC, Chapel Hill didn't sugar coat things and was straight forward with business aptitude. I had seen two G.I docs before pressing the issue of feeling like a number or another dollar sign. A now long time friend and Radiologist who graduated from UNC. He leveled with me about his concerns with my G.I. He had seen me practically every week for a year and supervised the Paracentesis procedure. He sent the transplant dept. at UNC my information and CD's of sonograms. He expressed no ill intent to my G.I but felt genuinely concerned about not referring me to a transplant center.

The greater part of most of us here on this forum found the site by researching with our computers. The problem is we aren't doctors. We know we have problems and the general concern of not feeling well, but that's it. A G.I isn't a Hepatologist, Don't be confused. Many G.I's are a credit to the field but one bad apple out the bunch can kill you. My opinion of the pecking order is research, Primary doctor. Gastro doctor and then Hepatologist. Nothing of significance medically can be done without Hepatology/Liver transplant team. Of course this only applies if you specifically find sincere medical concerns from a Physician (see pecking order). You'll be pleased to know recent medical advances can eliminate this disease for some folk. If you'd ask me in 2008-2009 if I'd be alive today....... Well I'm still here. A few doctors dared to put a timeline for my expiration. Ain't nothin special about me. Got no magic wand and never been considered to be lucky by any means. Just too stubborn to take NO for a answer.


Ziff
"The truth will set you free, but not before it pisses you off."

mhump
Regular Member


Date Joined Mar 2016
Total Posts : 43
   Posted 3/27/2016 9:38 AM (GMT -7)   
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?

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2072
   Posted 3/27/2016 5:48 PM (GMT -7)   
Absolutely start getting sobriety documentation. Make sure AA will be sufficient, in mostly all the cases we see here that is usually all they require. I tried AA a few times in my early days of drinking. It was court ordered after a couple DUI's. Found it to be a great program but....... I wasn't the only court ordered drunk in the meetings. That's not a great thing for someone vulnerable or insincere about quitting. Sobriety wasn't a life or death issue back then. It is now. Needless to say I was a miserable failure at staying sober with AA. The bright side if ya wanta call it that, I made a few more drunk buddies. UNC or specifically my doctor required I do therapy. A SHRINK for those who aren't privy to code for nut doctor.

What keeps each of us from crossing the line and picking up old habits is usually something personally devastating. Something that leaves a undeniable mark on our souls. Be it potentially losing your life or a upheaval of everything you know. For me it was losing my life. Good to hear you're committed to living. Sadly it's not the majority of ALD cases that we see here. Heck some fight to the bitter end with the tenacity and still succumb to cirrhosis or the effects of it. To me it's about the fight, Not the sucker punch that knocked ya out.

Don't know about VA stuff. I'm sure it's a little worse than civilian healthcare provided by our gubbament. I'll resist the feeling of a belligerent rant on that issue. I had Blue Cross with my company policy for 2/3rd's of my struggle to stay alive from the onset. Deemed terminal by my physicians I eventually was booted from that plan and put on medicare. Needless to say I have nothing at all for coverage at the moment. Good thing I'm unemployable. Encephalopthy issues (Lack of mental focus mainly along with mood swings) has seen to that. If most people knew how long it takes me to type a response and correct it they'd be shocked. I now have a new found sympathy for Dyslexic folks. So how do I see doctors? My wife works for a family practice. UNC has a financial program that provides assistance. My G.I hasn't seen me in a year. I find the lowest cost alternative to big pharma prescriptions. I'm broke and waiting for my health to deteriorate enough to be put back on the list again. Ain't that a "B****". I am certainly alive though, and gettin on with life as it comes.

Ziff
"The truth will set you free, but not before it pisses you off."

mhump
Regular Member


Date Joined Mar 2016
Total Posts : 43
   Posted 4/6/2016 6:25 AM (GMT -7)   
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
Regular Member


Date Joined Mar 2016
Total Posts : 43
   Posted 4/6/2016 6:33 AM (GMT -7)   
Hey Ziffle....Do Encephalopthy get worse with time? I notice at night when I close my eyes and think about or should I say concentrate, my concentration goes off on other things real quick. At work I don't really notice a difference with personality and mood swings yet. I do think I get a little irritable sometimes but hell who don't. I watch that video and it was scary about HE. I have notice Brain fog in my forehead but that's about it I guess...

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2072
   Posted 4/6/2016 4:56 PM (GMT -7)   
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
"The truth will set you free, but not before it pisses you off."

mhump
Regular Member


Date Joined Mar 2016
Total Posts : 43
   Posted 4/6/2016 5:13 PM (GMT -7)   
Thanks again Ziff for answering questions....still waiting for the biopsy.

Pulling and getting strength from your great STRENGTH!!!!! Thanks a million!!!!! and I will give back!!! In some way to someone!!!

mhump
Regular Member


Date Joined Mar 2016
Total Posts : 43
   Posted 4/9/2016 11:26 AM (GMT -7)   
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?

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2358
   Posted 4/9/2016 5:10 PM (GMT -7)   
Hey there Mhump. My name is Sandi, i was a caretaker for a person who had HepC. He passed in April, 2010. This forum was/is my family. I've been popping in here and there. Intend to be present more frequently now.



Liver biopsy is the only test that I know that confirms cirrhosis. Often, patients themselves request a hepatologist and sometimes the general practitioner naturally refers the person on to one. Mike and I requested one when he became symptomatic.

Sandia
There is no pit so deep that He is not deeper still... Corrie Ten Boom

mhump
Regular Member


Date Joined Mar 2016
Total Posts : 43
   Posted 4/9/2016 7:28 PM (GMT -7)   
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.

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2358
   Posted 4/9/2016 7:56 PM (GMT -7)   
Hey mhump. My Mike was the love of my life. Keep in touch and let us know how things come out. You're definitely in the right place here.

Sandia
There is no pit so deep that He is not deeper still... Corrie Ten Boom

mhump
Regular Member


Date Joined Mar 2016
Total Posts : 43
   Posted 4/12/2016 1:19 PM (GMT -7)   
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?

mhump
Regular Member


Date Joined Mar 2016
Total Posts : 43
   Posted 4/12/2016 1:25 PM (GMT -7)   
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?

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2072
   Posted 4/12/2016 3:58 PM (GMT -7)   
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
"The truth will set you free, but not before it pisses you off."
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