Frustrated, can't seem to get answers with doctors

Hello everyone. This past February, I was in the hospital with alcoholic liver disease. I'd been drinking heavily for a little over 3 years. I had no appetite, I was unable to keep food down, and I had jaundice. My urine was dark, almost brown. My face and eyes were yellow. I was put on a diet of clear liquids at the hospital, and gradually over the course of a week was moving on to eating solids. I was then discharged. My jaundice cleared up and I was able to eat, walk, stay awake, etc. I stayed sober for three months.

At the hospital, I frequently asked questions about my condition, whether or not I was dealing with something permanent, if I ought to adjust my diet, if there were ways to improve my prognosis, etc. Most doctors seemed to tell me that I probably did not have cirrhosis (I say "seemed to" tell me because they sometimes seemed on the fence about it). Yet, in all the reading I'm done, generally it seems that jaundice and bilirubin nearly 20 indicates cirrhosis, end stage liver disease, and lifelong health issues. I was diagnosed with ascites, then saw other doctors who shrugged it off and said it was probably fat. (These are all doctors from the same hospital). I have not had a liver biopsy and when I asked about it, they seemed to find it unnecessary. I want to know what is going on with my liver.

Recently I saw a doctor because I was having stomach problems, and after a little more than 3 months sober, I had a relapse. Apparently my liver was okay. I wasn't shown my liver enzyme levels, nor did I have an ultrasound or any kind of scanning done to see what was going on in there. He diagnosed me with gastritis/peptic ulcer. I asked him if he believes I have cirrhosis. He said perhaps, and if not that it could develop later on from the inflammation. I had just sobered up again and hadn't drank for almost a week, and according to him, did not appear to be suffering from liver failure or major liver issues, yet now I was unsure if it would develop down the line, regardless if I abstain.

I am still struggling with my drinking, and I will admit that I have done this to myself entirely. I don't want to place too much responsibility on others, such as doctors, when I've done this to myself. But I am paying health bills, I have tried to sober up and live a healthy lifestyle, and I've been given very different answers from different doctors. I have periods of sobriety (a few days, a week, etc), followed by daily drinking for a while. I am able to eat, my urine is generally clear, I am usually not nauseous or vomiting. I do often feel like laying in bed all day, but am no longer sure if that's because of my depression or because I'm sick.

I'm posting this here because I can't seem to get consistent answers from doctors, and I don't know how long I've got. If I had yellow skin, eyes, and dark urine when suffering from alcoholic liver disease, does this mean for sure that I am suffering from cirrhosis? Or is it possible that I"m not? Have I probably taken years off my life? Are there major diet changes I should be making, that I was not told about? I asked a doctor at the hospital if I should be eating differently or taken any kind of supplements, and he said no and that we just have to wait and see. I understand that drinking is the dumbest thing I could be doing, and I certainly can't blame doctors for my problems, but surely I should be able to get some answers. I am only 24 years old. Every attempt to get my life back on track seems futile because I'm scared I'm practically finished and will be dead in a few years. What I've done to my body and my uncertainty/fears about my situation has led me to want to drink more. And I know that is irrational. I simply get the feeling that it no longer matters, and that I've destroyed my life so young that I'm a lost cause.

Post Edited (Noro) : 8/15/2012 4:25:34 AM (GMT-6)

Most doctors won't take you seriously until you stop drinking. Why waste your time on a patient that is intent on drinking them self to death. You do need to get to a hepatologist asap.

You're right about getting straight answers. My PCP never holds back about my condition(s). He once told me; "that I was circling the drain." My suggestion is to tell your docs to be honest, even if it hurts.

Just because you're paying the bills, means nothing to many doctors. They're not sitting around waiting for business. Most don't have enough time to get to everyone. Therefore, they aren't willing (in most cases) to fix someone that is doing things that are contrary to getting better. In other words, drinking, or drugging. Being straight when you went to see a doc, doesn't mean they don't recognize a drinker. They've seen it all and know that too many patients lie to them. I wish you luck, but much of what is ahead is up to you and willpower.

Noro, welcome to the forum.

We are both patients and caregivers/loved ones of thos with liver disease...all kinds of liver disease...alcoholic cirrhosis, Hep C, hemachromatosis, Auto Immune Hepatitis, Liver Cancer, various poisonings, etc.

And we don't judge anyone...a fully decomensated liver leads to death, there is no treatment bar transplantation. End of story!

My partner had alcohlic cirrhosis, and a small heptocellular carcinoma. Both cured by liver transplant in 2011. He has Hep C (from IV drug use over 40 years ago) which almost always recurs in the new liver...it is a blood disease so changing livers just give the Hep C viruses thingies a yummy new opportunity to do its evil deeds.

He had docs along the way who gave him the cold shoulder because of his life choices. But once he demonstrated he was serious about his sobriety over months, he got the red carpet treatment. At Jackson/U Miami Transplant Center in Florida. By the time we moved from a community GI who looked down his nose, gave him 5 minutes and wrote prescriptions to ameliorate his symptoms, but didn't give a cra*.

By some miracle, Mike needed a day arthroscopy on his shoulder and the surgeon wanted bloods run first as Mike looked terrible. He had them done by the doc the sholder doc recommended. This doc blew a gut when she saw his White and red counts, his platelets and his INR. She ran out of the treatment room and started shoulting at the "girls"...call here, call there...etc... And Mike got the appointment at Jackson. The Hepatologist laid it out clear...3 months Mike, and you are a dead man if you keep drinking. Now Mike had been alcohol free for a couple of weeks at that point, but still...it was clear he was a drinking man. By then he had every symptom you find out about reading these posts. By the way, he had the arthriscopic surgery...but not at a surgi center...IN A HOSPITAL, where they gave him platelets 30 minutes before the surgery. I think the blood doc is our HERO.

Mike was hospitalized once a month for the next 6 months...he just couldn't keep it together. But he stayed sober, went to AA 4 or so times a week, worked his program. And they saw that, observed that he wanted to live. They started his transplant workup during one of those hospitalizations...they liked Mike and really went to bat for him.

Mike is on Medicaid now. And at the transplant center your insurance status is invisible to them. Sure some clerk helps you put together your financial plan, but the docs see everyone the same. They are great to work with.

And this forum has saved my life.

People have been through this. One woman posted her husbands photo on a link. I had no idea what the actualy surgery would be like or what the patient would look like. Well, when it was Mike's turn, I knew he'd have drains and a centeral line in his neck and IV's everywhere, and a cath and an NG tube and a vent. So I wasn't scared when they let me see him.

There is some good information at the top of this forum, with URL's for places with reliable information. And read back, there are so many posts from folks in your similar situation.

If you get sober and stay sober, you may have time before it gets bad. When Mike was Stage 2, they told him he had YEARS before the liver would crap out "just" from the Hep C. He took that as permission to drink through that grace period. Silly man. That about killed him.

He wishes he could go back but he cannot.

He wishes he had the personality that could talk to kids in school about Hep C and Alcoholism and Cirrhosis...

But he does not.

Instead he stays sober, eats good, rests when he needs to rest.

And I try to help out by posting often to newbies on this site.

I wish you well with your newfound sobriety...show them all...LIVE...

Best,
Carol

Thank you all so much for your replies. A.Ziffle, David, MamaLama, and hep93, I deeply appreciate your honesty. It is very much needed. It is helpful to hear from people who have an understanding of this illness.

Being 24 years old and feeling like I've only got a few more years (all by my own doing) is very saddening. And this being the biggest obstacle I've ever encountered in my life, happens to be one that I absolutely cannot escape by drinking, as drinking is the problem itself. Through my alcoholism, I always figured that I'd quit before I began suffering from lifelong issues, or took years off my life. Now I'm at that point where I'm facing a lifelong fatal illness, and I still can't seem to cross that bridge and stop drinking. I have periods of sobriety followed by periods of drinking.

I eat healthy and sleep regularly. I do not drink nearly as much as I used to, but I do still drink far too much (4-12 beers a day). I also once read this article that drinking coffee has a dramatically positive effect on those suffering from liver damage and/or trying to prevent in, so I drank a ton of coffee through my 3 months of sobriety. I actually like coffee anyway, and only learned this later on into my coffee habit. But this trick I played on myself only led me to drinking again while still drinking coffee, foolishly thinking that I'm sparing myself major health problems. It's amazing how I read some article and managed to fool myself into thinking I was healed. The truth is that you reap what you sow, and I planted some bad seeds for years and found excuses to continue doing so. I'm 24 years old and quite honestly, haven't even begun a career or family life. It seems that I've cut down my time on this planet before I even had a chance. Addicts like me use this as a fatalistic excuse to continue to drink or use drugs.

To get back to the liver issues, I have not lately felt sick. I have been eating healthily and sleeping nightly. I saw a doctor after a couple months sober back in April, and she seemed to think that I was doing fine and probably had not suffered permanent damage. However, she did no truly diagnostic test to see what was really going on. From what I've read on here, if you were suffering from jaundice and your urine is dark orange, almost red, you're probably dealing with cirrhosis. Yet the doctors I've seen just don't seem to care to answer my questions. I've spoken to several doctors since my liver began to act up. They don't seem to view it as a big deal. Yet I had a doctor recently tell me that I'll probably always have fatty liver. As I understood it, fatty liver is not a permanent affliction. So I asked if there was cirrhosis involved, and he said that it was possible down the line, even if I remained sober. I feel as though I have no idea what is going on with my liver. I understand that I'm only making things worse by drinking. It just feels like, at my age, if I'm going to be dying within years because of what I've done, because of a past I cannot change, and I cannot even get my life started again at this age, it's easy to fall back into existential substance abuse.

Post Edited (Noro) : 8/15/2012 5:22:15 PM (GMT-6)

Connie I wasn't insinuating he could go it alone , Just didn't mention AA or anything in regards to getting help that way . Anyhow your correct with me getting help from a old friend / co-worker had went into the ministry . He's always been a friend primarily rather than a spiritual adviser though . Of course religion did surface but more so on general conversation basis . I saw a " Shrink " for my evaluation process and enjoyed that thoroughly , Heck that was some of the most intriguing conversations I've had since my acid days . Anywhooooooo .........


Noro , Hope you get the help you need in both mental and physical situations . AA does work for most , The only backlash is you will have to be careful of who you meet while there . The courts often order people to AA and they aren't there with the same interest as you . Life is about choices and attempting to avoid a active drunk while at AA is like jumping in a sewer and not expecting to get poo on you , If you go choose wisely your new friends .
It wasn't a question of will power for me . I drank , I got violently ill just days prior to my diagnosis and hospital stay . The thrill was gone with drinking once I was released from the hospital , I had so much medical stuff going on and trying to meet my mandatory random drug-alcohol test during evaluation the thought of drinking only surfaced when I got depressed , Eventually a medication was prescribed for that . Lexapro is a anti depressant that helps to release serotonin in the brain ( Serotonin is a naturally occurring chemical in the brain ) .


A. Ziffle ( Rick )

Noro,

My husband was 23 when we married, and had a 6 pack a day habit. By the time he was 35 he was up to 12. It was around this time that he had his first bout with liver disease. He had an infection and his body could not deal with the infection and process the alcohol at the same time. He was jaundiced and the doctors told him that if he did not stop drinking he would probably only have around 10 years left.

He quit for a while, and after all of the liver tests were back to normal, he slowly started up again. Over the next ten years, he quit, started again, quit.... never really had any effects that impacted his health that he was aware of. Never was jaundiced again. And liver numbers always looked OK.

Long story short, he developed an esophageal cancer 2 years ago. The chemo and radiation almost killed him, and the drinking by necessity had to subside. He tried. He tried hard. We had one good summer. He was able to walk his daughter down the aisle in May. He passed away in early July.

Don't let this be your story. Do it now. If AA doesn't work for you, find something that does. My goodness, you are my daughters age. There has to be something that you want to live for that is more important than drinking. Find it.

In my opinion, doctors don't want to answer questions because they are too often proven wrong. They just do the best they can. Like the rest of us. Find one you trust, and then do what they say. Everyone here is correct when they say to find a hepatologist. GI's and internal med doctors don't know enough.

Arnold,
You are truly an exceptional pig. Just wanted to let you know that I told my daughter last month - sure, I am on the short bus, but hell, I'M DRIVING!!!! XOXO

Marie

I'm a very good driver..... Wapner at 11. :)

David, you are confusing willpower with willingness, at least in this context. Willingness is essential.

Rick is right on about choosing your new friends carefully. The (at the time) 80-yr.-old man who lived on the premises of the AA club I first went to took me under his wing. He told me to "stick with the winners." Meaning those that have good sobriety, in both length of time sober and quality of sobriety. He would tip me off to those who wanted to "13th step" me; i.e., a guy with less than pure motives trying to get cozy with a newbie who was very vulnerable. He's dead now, but I give that old man a lot of credit in me getting sober.

Hugs,
Connie

I deeply appreciate all of your honesty and encouragement. I know I need to quit drinking if I expect to survive. It's obviously irrational for me to continue to drink while so worried about what damage I've already done. The possibility of death seems very real, yet alcohol withdrawal, cravings and other mental issues have led me back to the drink every day.

I do not have hepatitis A, B or C and have recently been vaccinated against A and B. My diagnosis at the hospital back in February was alcoholic hepatitis, and as I've said, many doctors told me that I do not seem to have cirrhosis. I don't feel particularly sick (unless hungover) and I eat healthy. Unfortunately, though, even though these facts might calm my nerves, they lead me to fool myself into feeling like I can drink. I can never handle alcohol, regardless if I have cirrhosis, because I am an alcoholic, and it is deadly for me no matter what.

There is an AA meeting nearby tomorrow night that I will attend. Hopefully I will not be in withdrawal. I certainly don't want to show up after drinking. I would hate to deal with the shame of going through hospital detox again. I have had seizures from withdrawal before, though, and at that point, withdrawals are life threatening. However, I'm not drinking nearly as much as I did back then.

Mariel, I'm very sorry about your husband. Alcoholism can be a clever demon and it has certainly cost me and others a lot. I know you all have your encounters with liver disease, either from first-hand experience or a loved one's, and it can get very ugly and very tragic. Reading through this forum has been a motivator for me to get my head on straight.

Rick, thank you for your advice regarding AA. In my experience, I do believe I've encountered active drunks in AA. But in some ways, I had some inspiring experiences there. I don't think I'm one who can do it alone. I also do believe that depression is mainly what led me back to drinking, and will look into medications. Could antidepressants cause further problems with my liver?

For what it's worth, at the hospital, my AST SGOT (not sure what that is) at its worst was 210 H. My ALT was 114. My Bilirubin generally fluctuated between 15 and 19. Diagnosis was alcoholic hepatitis. I was also diagnosed with ascities, yet saw other doctors who said it was probably just fat. It certainly looked nothing like what I saw in pictures. I had a chubby belly long beforehand (beer gut, I suppose). Doctors also told me that usually in people with cirrhosis, there are spider-like veins (or something like that) that show up around the neck area, which I didn't have. And they also said that with cirrhosis, the liver does not look like mine did in the ultrasound, and that usually with cirrhosis it's more shriveled/crumpled looking. Mine was simply enlarged. My symptoms faded relatively quickly after I left the hospital and began treating myself better (healthy diet, exercise, vitamins, plenty of water, etc.). I know that nobody can diagnose me over the internet, it's just gotten frustrating because I've gotten varied answers from doctors. But mostly I'm frustrated with myself. Can't blame doctors for varying answers when my commitment to getting healthy varies the most.

Post Edited (Noro) : 8/17/2012 7:51:38 PM (GMT-6)

Hey, Noro. When you were in the hospital, did they give you anything for withdrawals? In detox centers/hospitals these days, they generally put the alcoholic patient on a mild tranquilizer to help with the withdrawals. If you are truly drinking much less these days, you probably don't need a med, as I doubt you will have DTs or other withdrawal symptoms except nervousness, inability to sleep, etc. It takes awhile for the alcohol to completely get out of your system. So be prepared for some discomfort, but it will mostly be mental. Cravings can be stifled with a candy bar or other sweet. Avoid the triggers that always led to drinking: Friday nights, bars, drinking buddies, disappointments, reasons to celebrate, etc., etc. DO change behaviors. Drinking has to be replaced with a positive behavior. Depending on how fit you are physically, this could be walking/jogging, reading, playing computer games, etc. And get the "Big Book," i.e., Alcoholics Anonymous, at any AA club...or even from the library

In the last 10 yrs. of my drinking, I had gone from wine to beer. I had quit mixed drinks years before as the hangovers were excruciating. And in the 3 mos. or so prior to stopping for good, I had weaned down to weekends of beer drinking. I'm petite and could never drink massive amounts of beer as I found it very filling. So I was able to stop drinking altogether in those 3 mos., starting to attend AA at the same time. I now have 26 yrs. of continuous sobriety.

The physical part of withdrawal won't last long. I very much doubt that you would have DTs or other manifestations of alcohol cessations. The largest part of stopping will be mental--acceptance that you cannot drink like "normal" people and learning how to stay stopped. That takes awhile.

The first 6 mos. of sobriety aren't easy. I wasn't sure I could live without a "buffer" against life and my feelings. I'd been doing it for decades, starting out with drugs. But anything worthwhile isn't easy. In the end, it was hep C that got me, not alcohol. Hep C caused cirrhosis and liver cancer, resulting in the need for a transplant. I could've said, "Oh, well. May as well drink" when I was first diagnosed with cancer. But after about 20 yrs. sober at that point, I didn't even want the booze. And why make a bad situation much worse by going back to the bottle?

So this I will ask of you: Why make a bad situation even worse? At this point, it's doubtful you even have cirrhosis. But that can quickly change. I was 7 yrs. sober when diagnosed with hep C in '93. (I had done IV drugs for 18 mos. in the late 60s. It had come back to haunt me.) A liver biopsy at that time showed no cirrhosis. A liver biopsy in '07 showed that I did have cirrhosis. So somewhere in those short years, I had developed cirrhosis and also liver cancer. You have a definite advantage in that you don't have hep C and also youth is on your side.

As I said, you have this short window of time to save yourself. I hope you will grab it. As I learned in AA, I had gone to any lengths to get alcohol. I had to be willing to go to any lengths to get sober. This meant finding rides to and from meetings, being awake all night (I read Stephen King novels), being very nervous and uncomfortable being sober, but willing to experience all that to achieve the goal of true sobriety.

I wish you nothing but the best. That's what you deserve. Now you need to believe it.

Hugs,
Connie

"one way to slow or kill a liver cancer tumor is to inject it with alcohol."

True, JL, it is a seldom used treatment...but chemoembolization, TheraSphere, and surgery have much greater success rates.

Hugs,
Connie

"So most waking hours I have enough alcohol in me to keep me calm. I'm not sure whether or not that is easier on my liver than drinking it all at once every night, or if it makes a difference."

It makes no difference whatsoever to your liver. It is still being hit by X amount of alcohol, regardless of how you split it up. You are essentially giving yourself a maintenance dose of alcohol to keep from feeling shaky, etc. Whether or not this will make it easier to quit drinking, I can't say. By drinking only on weekends at the end, it may have made it easier for me to quit drinking...I can't really say. I just wasn't ready to give it up entirely and had to stop gradually. However--big difference--I had no damage from alcohol abuse. In your case, the sooner you stop the better. Try eliminating one of the regular drinking times...then eliminate 2, etc. If you can do it faster, so much the better.

Hugs,
Connie