Hello, Bessylu, and welcome to the forum. I am so sorry that your husband is ill with this disease. It's a lot for families to take in and cope with.
First of all, it's primary for his recovery (and even for his very life) that he not drink again. Have the doctors impressed this upon him, or is he still too "out of it?" He will do further damage if he even has a beer. As soon as he is physically able, he would benefit from AA meetings. A very few alcoholics will be able to stop on their own, but most need a support system and a plan for living that is laid out by AA.
By the way, Ativan is an anti-anxiety/sedative med, not a pain med. Dilaudid is a narcotic pain killer. (Note correct spellings.) It's true that his liver function will improve if he can eliminate these meds.
A cirrhotic liver will be hard and pebbly. However, a biopsy is usually the method used to determine cirrhosis. In your husband's case, they may not want to do one right now because of his fragile state and the risk of bleeding.
According to Dr. Melissa Palmer in her book, Hepatitis & Liver Disease, if a person having an acute episode of alcoholic hepatitis stops drinking entirely, before cirrhosis has developed, that person then stands a chance of having the damage done to the liver completely reversed. I would ask your husband's doctors if this is acute or chronic alcoholic hepatitis. It makes a big difference in how it is treated and especially the prognosis. Dr. Palmer states, "A persistently elevated bilirubin level and a prolonged prothrombin time...are the most reliable indicators of a poor prognosis." Prothrombin time is the time that it takes the blood to clot. Do you know if his PTT is high?
I hope this info helps a little. It's really all that I'm able to impart to you at this time. I think it is a good thing that they are not discharging him until he is better.
Hang in there!
Bessylu, first of all I have to tell you that treatment programs and AA didn't work for your husband long-term because he stopped going or wasn't able to completely surrender. Some have to lose everything including, unfortunately, their very lives. If this hospitalization isn't a wakeup call for him, nothing will be. He may find that he can't drink because it makes him violently ill. That also sometimes happens.
The coagulation factor is usually noted as PT and PTT. Assuming that the PTP is prothrombin time, it is elevated. Normal is 11.6-14.7. His INR is okay at 1-2. What this means is that it takes longer than normal for his blood to clot. As I said, this is probably why they don't want to do a biopsy.
You really have to be an advocate for him. Learn as much as you can. Pin the docs down and ask questions. I have to tell you that some docs are not really going to care as much for an alcoholic with a long history and who is not really showing that he wants to quit drinking. They are not supposed to be biased, but they are, since they basically feel that they are wasting their time. I do hope that he will smarten up while it is still possible to reverse the damage.
The diuretics (usually Lasix and Aldactone) are given to reduce fluid. Lactulose is for encephalopathy which is caused by high ammonia levels. The elevated ammonia levels make him "out of it," irritable, etc.
Please look in the folder at the top of the page entitled Hepatitis Resources. There is a lot of educational material in there.
Post Edited (hep93) : 6/21/2009 9:42:43 PM (GMT-6)
Post Edited (bessylu) : 6/22/2009 1:36:22 PM (GMT-6)
Bessylu, I'm sorry your husband isn't doing well. Aldactone is a mild diuretic. However, its main function is to prevent loss of potassium from Lasix use. I take them both and they have worked to keep fluid off of me and my potassium in a normal range--but it was a real balancing act for awhile there when I had liver cancer. If your husband's urine output is not sufficient, he may require dialysis. Has liver transplant been mentioned at all?
It's true that it's best not to focus on the lab values because they often don't reflect what is really going on. In my case, they were never really bad, even with cancer. You can often get more info from nurses. Another problem is the HIPAA regulations strictly governing privacy. Even as his wife, you may have difficulty getting information unless you have Power of Attorney. This is something you probably should do, or get Medical Surrogacy to be able to make medical decisions for him if it comes down to that.
People have been known to be really critical and then turn around, so don't give up hope. The fact that he is now off alcohol can only help him. In reality, though, too much damage may have already been done.
Remember to take care of yourself.
Bessylu, thanks, I am doing well right now as far as the cancer. I have been cancer free for 2 years, praise God and Mayo. I have chronic active hep C and that is what caused the liver cancer. I also have cirrhosis. They removed the entire rt. lobe of my liver, so I'm living with just the left lobe. Aside from extreme fatigue, I'm "stable." Right now, I'm having problems with my rt. artificial hip dislocating constantly, so will need surgery for that. Pink Grandma will have to get some help on this forum once I have surgery, as recovery is so long. So that's me.
I really can't answer your questions about the bilirubin. The only thing I can find confirms that an elevated bilirubin can be an indication of alcoholic hepatitis. The dark tea-colored urine you mention is also from the elevated bilirubin.
It's hard for anyone who is emotionally involved with a very sick person to visit that patient. I don't think anyone should expect you to be cheerful. Just take it day by day. None of us is ever guaranteed tomorrow, so stay in today as much as possible and try not to worry about the "what if's." Most of the things we worry about never happen. Stay as informed as you can, keep educating yourself, and deal with each thing as it presents itself.
Post Edited (bessylu) : 6/22/2009 11:08:07 PM (GMT-6)
Rick, it sounds like you were a functional alcoholic like my b.f. He also never missed work, didn't lose anything, and fortunately stopped drinking before he did any lasting damage. He has been sober nearly 9 years now, after a slip when he had 3 yrs. As you know, it's one day at a time. I know that if I drink I will be dead in short order...and I'd like to stick around awhile longer. I actually have no desire to drink any longer. Cigarettes are another story. I still crave those from time to time, although I quit 6 1/2 years ago. But I know that if I smoked one I would be back to 2 packs a day in no time. It's my addictive personality. Some people say there's no such thing, but I'm here to tell you that there is. I can have a craving, but I know I can't act on it.
Post Edited (bessylu) : 6/24/2009 9:37:16 PM (GMT-6)
Bessylu, "that word" is encephalopathy. It sounds to me like the Prednisone is causing him to hallucinate and act strangely. It did that to me. I just took 2 capsules (this was years ago) for arthritis in my neck, and started having visual and auditory hallucinations, felt like bugs were under my skin biting me, people were coming through the walls, etc. It's what I would imagine a bad drug trip is like. I was healthy at the time (except for the arthritis in my neck) and wasn't taking any other drugs, so I knew it was the Prednisone. Except I couldn't sleep. I went 2 nights with no sleep and hallucinating and on the 3rd day I took myself to the ER. They told me I had a psychotic reaction to the Prednisone and to always note on my medical records that I am "allergic" to it. I've never taken it since then. In fact, I have bad reactions to all steroid medications. So I suspect that between the encephalopathy and the Prednisone, that is the cause for your husband's loopiness...especially since they increased the Prednisone.
P.S. To Rick: There's another thing above that I've been through. You just don't know the half of it! Everyone tells me I should write a book...but there's lots I can't remember.
how long were you in the hospital, Rick? and how long after coming home did you start to feel better?
I can relate to the stories you're telling perfectly with dh, he's very confused off and on, slurring his words. He gets a little better visually and energy wise and then worse. numbers are the same. Tons of blood taken from him today by the newly assigned kidney specialist. Will have to wait and see what that is. It can be the drugs, kidney disfunction or the encephalopathy. I just know we're almost on week four and he's miserable, weak and fatigued with any beginning path of recovery lost once again. He'll be 52 in August, and I know he won't want to spend the rest of his life in a nursing or assisted care living facility. And if they put him on dialysis...well, that's one step closer to that kind of life, the way i see it.
bessylu, let's hope it doesn't progress to the point where he needs dialysis, but I want you to know that people do it as outpatients. I take the handicapped van to most anywhere I need to go, since I don't drive and can't walk far enough to take public transportation. There is a dialysis center near me and we pick up and drop off people there all the time. They live at home, but 2-4 x a week, depending on their personal medical need, they go for dialysis which usually runs about 4 hours. It's a slice out of a person's life, for sure, but doesn't mean they need to be in assisted living or a NH. There are a number of these free-standing centers all over town. Some also have it done as outpatients at area hospitals.
You really just have to take it one day at a time. It's a roller coaster ride for sure, and there is no way to know what tomorrow will bring. You just have to go with the flow.
Rick, thanks for sharing your experience with encephalopathy. Do you think some of that was also alcohol withdrawal? I'm thinking that with both you and Bessylu's husband, it could be a combination of encephalopathy and alcohol withdrawal. But I also know what Prednisone did to me, so we can't eliminate that as a cause or contributing factor, either.
Rick, between the time you got out of the hospital and the time you had your TIPs was how long? I know that it was a struggle for you, just keeping to a low-sodium diet and off the booze...and that your minister friend was instrumental in keeping your spirits up and giving you hope. I believe that God works through people and he was working through your friend for you.
Thanks for the kind words, but it's really a day to day thing. None of us is guaranteed tomorrow. Now I'm facing another hip surgery, but I've had nearly a year that I haven't had to have anything done and it was great! When you look death in the face, as you said, and when one has gone through so much medically, you really learn to appreciate every little thing about being alive. I don't have time to rehash past mistakes, dredging up old grudges, or bemoaning what could have been. This is something my grown daughter can't understand. I laugh at some of the things she flips out about because to me they are so trivial and not worth the time or emotion. I was supposed to fly to NYC on Mon. for a 9-day vacation. Instead, I will be at Mayo having hip x-rays and meeting with my ortho surgeon. Sure, I'm disappointed, but better to just go with the flow than sit around being depressed because MY plans fell through. For whatever reason, God has other plans for me and I have to trust that.
Bessylu, hang in there. There really is no way to know what tomorrow will bring. Please do try to take care of yourself while your husband is being cared for. Remember, you are important, too.
Post Edited (bessylu) : 6/27/2009 12:12:56 PM (GMT-6)
Bessylu, I'm sorry that your husband's prognosis is so poor, but glad to hear that you had a good talk with his doctor. And especially happy that you got some good sleep. You absolutely needed that.
Our thoughts and prayers are with you.
Rick, moments like you had with the nurses are the best! I've had a few myself.
bessylu, it's possible he has thrush. Even if he doesn't and it's just a sore mouth/throat, there is a substance they can give him that he can swish around in his mouth. I've heard it called "swish and swallow" but not sure of the brand name...maybe Nystatin. It's an antifungal. Ask the nurse or doctor about it. There is also a numbing medication they can give him for his throat if the soreness or feeling of an obstruction is keeping him from eating. I've had that same feeling, generally after surgery, because they put a breathing tube down the throat to keep the airway patent. Ice chips are good and so are popsicles because they numb the throat. But to heal the sores, he probably needs an antifungal.
I understand what you are saying about the fluids, etc. That's why we say it's a "balancing act."