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Posted 12/18/2011 4:52 PM (GMT 0)
Hello - I'm new to this and am really looking for information from people who have dealt with Alcoholic Hepatitis themselves or their spouse/significant other. 

My boyfriend of almost 9 yrs went to the ER just over a week ago because he was very jaundice and not been feeling well.  Come to find out after an ultrasound & a CT Scan he has Fatty Liver and they're not sure if he has Liver Cirrohsis as of yet.  He was kept in observation overnight then to see a Gastro Dr & his family DR this last week.  Which we did.  To add to it, he has 2 cracked ribs which he was prescribed Oxycontin for.  Along with some vitamins and Librium for the DTs.  He's been drinking for 30 yrs along with quite a bit of pain meds over the past few years for other surgeries/medical conditions. 

It's very scary for me and his 2 kids as he's now only awake about 1 1/2 hrs a day, can't get him to eat but he is drinking fluids when I can get him to.  On top of that, he's been hallucinating, very confused, and since he's been sleeping so much - pretty much can't walk because he's so week.  And, started turning a little jaundice again today.  Had blood work last TH and he'll have an ammonia blood test tomorrow

I've attributed his sleeping to the Oxycontin & his body trying to heal but am starting to get very worried that he is sleeping so much and am scared about what I should or shouldn't do.  Or is it normal?  He's quit drinking now just over a week and is very dead set on quitting at this point.  Is his sleeping part of his recovery from alcoholism?  Bodies way of detoxing?  I'm very new to this type of condition and trying to learn more about it so I take care of him as is needed but don't ignore symptoms that might be serious.

And be able to talk to people who have been caregivers for persons with this condition or experienced it firsthand. 

Trying to stay strong and hopeful!  Yet very scared right now....

Posted 12/18/2011 5:29 PM (GMT 0)
Hope, hello, and welcome to the forum. You are far from alone in this situation. Many of our members are dealing with the same situation. The good news is that if your partner stays off the booze, he can avoid further damage to his liver and possibly turn things around completely.

I suggest you read the info in the folder at the top of the page entitled Hepatitis Resources. It contains information about all types of liver disease, not just viral hepatitis. (The word "hepatitis" simply means "liver inflammation." There are many causes for this.) Also, you will find great support and information in the Caregivers thread. Look for it on the first page.

Regarding the sleeping: It is usual for a person with end-stage liver disease. Also common in anyone with liver disease, but sleeping 23 hours out of 24 is usually a sign that a person is very advanced in their disease. HOWEVER, because your guy is taking Librium and Oxycontin, they are definitely contributing to his somnolence. He should be off of the Librium in a week at most. Also, although broken ribs are very painful, he should switch to a lesser pain med, such as hydrocodone, before too long. You do not want him "switching addictions" from alcohol to prescription drugs. You said that he's had a problem in that area, too, so that should be your clue that he needs to get off of EVERYTHING ASAP. This would also be the best thing for his liver. A damaged liver cannot metabolize well, so the meds will stay in his system longer than if he had a healthy liver.

The hallucinations can be part of his detoxing or actually caused by the meds. At some point, it would be best for him to have a liver biopsy to determine whether he has cirrhosis and to ascertain the extent of his liver damage. With fatty liver, diet is extremely important, too. With any liver disease, it's best to avoid red meat and focus on fresh fruits and veggies (frozen are okay, too, but no canned), and non-animal protein such as soy products, beans, and low-fat dairy. He should be taking a multivitamin WITHOUT iron. While he's detoxing, give him ice cream or any sweet that he will eat. Alcohol has a lot of sugar in it, and eating sweets will help eliminate the craving for alcohol. Due to his fatty liver, make it low-fat ice cream or frozen yogurt, and fat-free candy. He needs lots of water, preferably spring or filtered water.

I have been clean and sober for 25+ years and just received a liver transplant 10/27/11. I had liver cancer as a result of hep C--the hep C I contracted back in the late 60s when using IV drugs. If your guy should need a transplant in the future, he will need 6 months of DOCUMENTED sobriety in order to qualify. Once he is detoxed, he really needs to start going to AA, not only as insurance for a possible transplant in the future, but because he will need to change his life completely. AA has a proven track record of over 70 years of being the best program for getting and staying sober. I know it's worked for me. If he has insurance, or if you can find a local program that is free or low-cost, once past detoxing he may need an inpatient program for 30 days. These programs will generally have AA meetings on site or bus the residents to them. His doctor could make the referral.

Once he has detoxed and shows some improvement in health, it would be a good idea for you to find an Al-Anon meeting or a Co-Dependent meeting for yourself. If he gets and stays sober, the family dynamic will change and you will need help in understanding and coping with it. If he has trouble getting and staying sober, likewise you will need a support group that will have you focusing on YOU. These meetings can be located by calling Alcoholics Anonymous.

If you have any further questions, please feel free to ask. Someone here will answer you.

Hugs,
Connie
Posted 12/18/2011 7:04 PM (GMT 0)
Thank you Connie for your quick response!  Luckily, I've been able to get him to drink hot tea, juices, and water (filtered from our refrigerator).  He has been taking his prenatal vitamins and Vit B1 prescribed by the DR so I'm somewhat OK with his nutrition but his eating is still non-existent.  But that comes from the pain meds too as quite a few of us know. 

He's a bit more jaundiced again today but his DR said that will take some time to go away.  I guess, unfortunately, that I don't know what is normal or not normal.  I'm also scared that I will overlook a symptom that might be quite serious medically - which is why I'm looking to learn and gain knowledge from others that have experienced it first hand or from a caregiver. 

I'm going through an extremely stressful time with maintaining work, our house, and making sure the kids have everything they need physically and emotionally.  It's taking a very hard hit to me that I thought I could handle and am finding out that maybe I can't by myself. 

Its comforting me knowing that I might be able to hear about others situations/experiences and I'm not the only one out there having to deal with such.  I'm feeling somewhat alone and not many people to talk to about it that understand.  His family completely understands (his Mom & Dad passed away when he was very young) but they don't live very close and have quite a bit of medical issues they're dealing with.  I have some of the greatest friends in the world to support me/us, but all they can do is listen because they haven't gone through what I (and many others) are going through. 

I will continue to read other posts to learn more and look forward to helping others and them helping me through what I'm learning very quickly is a very difficult and challenging condition to handle.

Still keeping the faith and praying non-stop for his health and recovery!

Posted 12/18/2011 8:12 PM (GMT 0)
Hope, it IS a very difficult path for a caregiver, as many here will attest. There are also a lot of "peaks and valleys," so we say it's a roller-coaster ride. The jaundice is from elevated bilirubin. With abstinence from alcohol, it may diminish or go away completely. It depends on the amount of liver damage he has.

If he won't eat, you can try Boost or Instant Breakfast. IB is what was recommended to me after transplant, as I didn't have much of an appetite for several weeks, either. The Instant Breakfast has a lot of protein in it. Boost would be better, but some don't like the taste or texture.

As I said, do check out the Caregivers thread. You will find many others there just like yourself, facing the same challenges. You can also use the Search feature here to find posts on cirrhosis, ALD, etc. As far as the Internet, it's best to go to reputable sites, such as the American Liver Foundation, for info.

The number one thing you must do is take care of yourself. If you don't, you will burn out quickly. Take 1/2 hour for a bubble bath or just go for a walk by yourself. You likely will need some help, regardless. Does he have insurance? Has he applied for Medicaid? These are things that should be done, in case his care is long-term or includes a transplant at some point.

It tends to be slow on the forum on weekends, but just be patient. You WILL get input from others.

P.S. Try soups and puddings, too. Anything that has nutrition. We with liver disease try to avoid salt or eat very low-sodium diets. However, in your guy's case, it's most important that he get nutrition right now. You didn't mention ascites (big belly from abdominal fluid) or lower extremity edema (swelling in the feet, ankles, calves), so salt may be okay for him in small amounts. Try to get the most nutrition in him that you can.

Hugs,
Connie
Posted 12/18/2011 9:56 PM (GMT 0)
Hello Hopeful , I myself am a recovering alcoholic with a few years sobriety under my belt . I quit drinking 1 day before being diagnosed with E.S.L.D , Not because I wanted too but because it made me violently ill . It took getting deathly ill for me to quit drinking . I'm glad to see your BF has come to his senses , He just may have avoided far worse problems than he already has .

Sorry you and the kids have to go through this but it can be managed and even somewhat fixable if he hasn't pushed things too far . The doctors initially gave me 3 months to live , It was difficult and downright unbearable at times but my wife , Family , Friends and doctors along with guidance from others here on this forum who got me through it .

A word of caution , Googling information on this disease can get you very depressed . This is particularly so with people who don't get involved with groups like this one . Most info you get through those searches results in more confusion and worry , They base the info on technical data and huge words that intimidate most common folks . Get comfortable with the terms and the basics before you jump both feet into the hardcore Medical papers . Keeping track of the BF's medical info ( Test , procedures , times , dates , places ) is a good place to start . This will help for filing insurance and provide critical backup info in the case the hospital " Misplaces " paperwork , If you depend on their record keeping you will regret it . A huge binder or a file folder works good . A note pad and pencil for doctor visits to jot down answers and questions ( Doctors spend about 15 minutes per patient , They talk very fast and rarely explain things in laymen terms ) , I bought a small recorder to avoid writing all the crap down .


If you need help someone is always popping in here from time to time so feel free to post anytime .


A. Ziffle

Post Edited (A.Ziffle) : 12/18/2011 3:00:12 PM (GMT-7)

Posted 12/19/2011 2:31 AM (GMT 0)
Hello Hope and welcome to Healingwell. So sorry that you are going through this but am glad you found us. We are a very diverse group. Lot's of living with liver disease knowledge here.

My husband passed away from alcoholic liver disease going on 5 years ago. So I know how you are feeling. You maybe scared, but you are not alone anymore. You are now a part of our cyber family. We have lots of wonderful members who have traveled down the same road.

Connie and Ziffle gave you some sound advice. Not much to add there. But through this you also need to take care of yourself also.....trust me in that.

Thoughts and prayers..........
Posted 12/19/2011 4:12 AM (GMT 0)
Hope,

  Please keep posting with us.  If your BF has cirrhoisis you will need some support from caregivers who have been there and done that.  I truely hope his problem is something else.  This disease is hard on all around it.  I will light a candle for you and your FB tonight.

Welcome.

Angie1953

"It is better to light one candle than to curse the darkness."

Posted 12/19/2011 3:12 PM (GMT 0)
Ziffle - You are absolutely right about the Googling for information.  That might have put me in a bigger downward spiral, if anything.  And, I really was just trying to educate myself on the symptoms and conditions overall. 

I've spoken with his family DR this AM about the hallucinations and they believe it's due to the pain meds (Oxycodone) and possibly high ammonia levels.  He goes today to have the ammonia blood work done so hopefully that will shed some light on that issue and put me at ease that there is a true reason why he's having the hallucinations.  And what we can do about it to correct it. 

But the blood work he had last TH came back abnormal but apparently not abnormal enough to cause concern.  He just has to go back in 2-4 wks to get the blood work done again.  Good or bad??  I'm not sure...waiting on the Gastro DR to call me back this afternoon on his thoughts about the hallucinations.

He's so weak and it worries me that he might hurt himself or fall when no one is home trying to walk around the house.  Luckily, my last day of work for this year is WEDN and I'll be able to keep a closer monitor of him while I'm off for the holidays.  My short term goal is to just try to have him somewhat coherent by Christmas day for his sake, the kids' sake, and his family that will be joining us. 

Stomach Scope is scheduled for TH AM now and am praying that will provide us more information. 

Keep us in your prayers!  I'm praying for all of you and us for a positive outcome or treatment plan to get us going on the uphill swing!

Posted 12/19/2011 3:30 PM (GMT 0)
Anyone out there know what might be considered normal ALT & AST levels?  Again, very new to me and trying to learn what to be concerned about.  Sounds like the DRs weren't overly concerned but his ALT was 49 and his AST was 176.  Thoughts from anyone that might know?  Appreciate it much!!
Posted 12/19/2011 5:07 PM (GMT 0)
You have to cut and paste this link into your browser. It gives definition and reference ranges (normal) for the varous liver tests. Some labs or docs have broader reference ranges, so don't get too excited if you are just a little up or down:

http://en.wikipedia.org/wiki/Liver_function_tests


In addition the MELD score, used to allocate transplant organs to the most ill patients, may be a good indicator of how sick he is:

http://www.mayoclinic.org/meld/mayomodel8.html

Others have suggested the meds he is taking may make his sleepyness worse...well liver disease itself has fatigue and sleepyness as a symptom. If the ammonia level is really high a person can actually slip into a coma. There are good meds for helping bring the ammonia level down.

Having been a caregiver of one with liver disease for many years, I have learned that when the disease is really in a bad stage, I am ALONE. Mike can't and shouldn't drive or make decision. And don't let him put stuff away...cause you'll never find it again. The mental aspects can be very difficult. Mike as we know and love him, was not "present" in our lives when he was in the ammonia haze that is quite typical of advanced liver disease.

If you look back through my posts you will see that Mike has been to he-- and back in the last 2 years. He had a transplant after waiting for the 6 months sobriety, where we hoped and prayed he could keep alive, until that sobriety for 6 months arrived. It was a close call.

Best to you, Mama Lama from Florida
Posted 12/19/2011 5:54 PM (GMT 0)
Thanks for those references, ML.

Hope, his ALT is barely above normal. His AST is higher than mine has ever been, but my labs never really reflected what was going on with my body. Normal ALT is 7-45, normal AST is 8-43. You should also see alk phos, and the normal range for that is 55-142. However, as ML mentioned, different centers and labs may have different reference ranges.

It's a good sign that they don't want blood work for 2 wks. If his labs were very, very high, they might want to do them again sooner to make sure it wasn't a fluke.

Carol, I did mention that sleepiness is part of liver disease, but that the meds are probably contributing to it. A diseased liver cannot process properly, so the meds are affecting him, also, as they are in the system longer than normal. Pills take longer to metastasize, even in a healthy person, than liquid. Most of them also have a half-life.

Hope, this is not going to be a normal Christmas. His family needs to accept that he is very ill and to know the extent of his illness. Of course, it would be nice to have him more alert, but this may not happen or not for any length of time. Just part of advanced liver disease.

ML and others here have "up close and personal" experience with being caregivers to those with ESLD, and are well informed. So do take to heart what they say.

Hugs,
Connie
Posted 12/20/2011 3:38 AM (GMT 0)
Hope,
I agree with Connie that you can't make this a normal Christmas and you will be disappointed in yourself if that is what you try to do.

Someone that works in health care all her life told me this and it has helped me a lot:

"There will be good days and bad days, if the two of you are having a good day, do all you can to not change it into a bad day. There will be plenty of them ahead."

Our average is about 3 good days out of 14 or so. Here's a pointer about this Christmas....KEEP IT SIMPLE AND ASK FOR HELP. You will need your energy and stamina for down the road.

Angie1953

(Typed from the nursing home, hereafter called B & B, where my husband is sleeping and has been sleeping about 5 hours of the 6 I have been here with him.)(My husband is only 65 years old and me 56, so we are the youngest folks here. We are trying this for 30 days, as I was exhausted after caring for him full time for 9 months.)
Posted 12/20/2011 4:36 AM (GMT 0)
Hope,

Hi. My husband has cirrhosis due to alcohol. When he was first dx in Sept 2010 his liver tests were all out of whack. His GI doctor gave us the following advice...

The very best thing he can do for his health is to never drink again. The most important liver test is the INR. This is the one that measures bleeding. To be aware that if there is vomiting of blood, that needs to be a call to 911. There is a 50% chance of dying from a bleed. Eat a healthy diet. Do not take any medications, supplements, OTC meds, vitamins, without getting the OK from the doctor. If he has no appetite, drink an Ensure nutritional shake 3 times a day.

I was most worried about the jaundice and high bilirubin. Doc told us that that is the test that takes the longest (months and months) to return to normal...if ever, depending on condition of liver. His doc also said that he rarely orders tests for ammonia levels, as he feels that observation and knowledge of the patient is more telling.

When my hubby was detoxing, he was taking a generic librium. He pretty much just was in bed sleeping for 7 days. It was very scary. When he did get up (to sack out on the couch) or go to the bathroom, he needed assistance walking. He also needed help feeding himself.

Now, 15 months later...most of hubby's liver tests are in the normal range. If the tests are out of range, they are not too far out. He has been (almost) alcohol free. He had a slip in mid September. Our challenge now is that last week's ultrasound showed a 6.4mm spot on his liver. He has a CT scan tomorrow for further evaluation.

You didn't mention your BF's age...?

Emma
Posted 12/20/2011 9:04 PM (GMT 0)
He's 43 yrs old:) It's making me feel better and better knowing that I'm not the only one having to handle this - because it feels VERY lonely right now and I'm so confused. It's been an extremely bad couple of days - up all night with him last night, got bloodwork today, then he's now in quite a bit of pain since they just told me to stop him with the Oxycontin late yesterday. He's very stubborn and looked for the meds thru the house all night long off and on. Just picked up a prescription for Lactulose which I've heard OK comments on it. High ammonia levels might be contributing to his hallucinations.

His brother did show up last night to stay for a few days so we can get some of the blood work and procedures done to see what our next steps are. I'm physically and emotionally absolutely exhausted and will painfully admit that I haven't ate in 4 days (which isn't helping anybody). And no sleep for almost 36 hrs....

It might be a trip to the ER tonight with his shoulder pain since I cut him on the Oxycontin and still waiting on the Drs office to call to see if he can take something else for pain to avoid the hallucinations. He's had surgery before on his shoulder and I think I jarred it on Sunday trying to help him sit up from the couch:( I grabbed his elbow and inadvertently pushed it up probably jarring his shoulder too much.

I'm continuing to pray and pray thinking that everything happens for a reason. Maybe someone is just testing me right now:)
Posted 12/20/2011 9:59 PM (GMT 0)
Hope, you absolutely MUST eat...and sleep. No wonder you are so completely exhausted! It's good that his brother is coming to help out for awhile. If you have time for nothing else, make eggs or have soup. I was told to drink Instant Breakfast if I couldn't eat. You've got to get some nutrition in you (and him, too, if possible.)

I wasn't happy, either, when they abruptly stopped the oxycodone...but I managed and got off of it. I used a moist heating pad a lot on my lower back, which was still hurting when they stopped that med. Thank goodness it finally went away. I also use the heating pad for chronic neck pain. So I'd suggest that for his shoulder. Keep it on low and don't let him fall asleep with it on.

Most who have to take Lactulose complain of the taste. I understand it's more palatable if mixed with juice or soda.

Hang in there!

Hugs,
Connie
Posted 12/21/2011 12:41 AM (GMT 0)
Hope,
When you can't eat, drink an Ensure or Instant Breakfast and just look at it the same as "putting gas in your car.' You are not going to be able to enjoy meals for awhile (anyway I can't) and I have to just look at it like "gassing up for the next day."

Also, the way I slept, was to put on a video movie (light hearted comedy), lay on the couch and voila. Asleep. Lots of videos I didn't finish, but without the distraction I was thinking too much to sleep.

So sorry to hear you are both going through this at such a young age.

The oxycodone made my husband cranky and nasty and someone I didn't recognize personality wise. When the Dr. switched him to morphine, my old hubby returned ...Except though he was doped up, but was lots easier to take care of someone who is himself, just ill. As opposed to someone I didn't even recognize. I am thinking of you. This is the hardest thing I've ever done. Sending you strength.
Angie1953
Posted 12/21/2011 12:46 AM (GMT 0)
Connie - That's what I read about Lactulose as well - mix it in something.  And, you're absolutely right so much that I recognize my sleeping/eating issue before I even typed it.  I didn't think of the nutrition drinks and might just do that for tonight.  I got some for my BF and didn't even consider it for me.  We did order Chinese tonight but not sure my exhausted, stressed body can handle it just tonight. 

He's actually stayed very calm and slept the entire afternoon/early evening - but this was after quite a roller coaster ride during the day.  Got up a couple of times quickly but laid down and eventually went back to sleep.  In turn, I took a break and slept while he did.  His brother hung out with the kids after school and ate dinner with them while I slept away for a couple of hours. 

I appreciate the listening/venting.  I'm normally not one to vent to others or even ask for help.  I've had to do both of those with our current situation.  Taking one day at a time - looking to the future sometimes gets me quite depressed - I instantly go to the negative future not the 'everything will be fine' future.

Hope

Posted 12/21/2011 1:29 AM (GMT 0)
Hope the one thing you must do is take care of yourself... and take it one day at a time... one moment at a time... educate yourself... read the posts... take time for yourself or you will find yourself at burnout... well you will anyways... but more quickly... I have been a caretaker... and know the feeling... Sandia
Posted 12/21/2011 2:44 AM (GMT 0)
Chinese food is not a good choice...too much sodium. However, if you can get something into yourself and him, it won't kill you. Just keep it in mind for next time. A rotisserie chicken and potato salad would be better, if you're not up to cooking.

Good that you are grabbing some sleep when you can!

Hugs,
Connie
Posted 12/21/2011 2:58 AM (GMT 0)
Hope , Keep focused on one task at a time and the same applies for the BF . Obsessing on everything is bad for both of you . Yes , There will likely be times when things get bad . I hope not , but as long as you prepare for the worse mentally and resign yourself to not being able to control the things you can't you'll do just fine . You obviously know what it takes to raise children and deal with not being able to fix the world for them or wave a hand and make a fever go away , It's hard watching someone you love suffer and stand by helplessly .

Liver disease and alcoholism can't be wished or worried away . So many have came here including myself with the same stress you are under , patient and caregiver alike . Take comfort in the knowledge of not being alone and know that someone here has walked in your shoes before . Once you face the reality of the worse possible scenario all the other troubles don't seem nearly as bad .

Now if you will excuse me I have to go do something manly , All this girl talk has caused my testosterone levels to plummet . smhair




A. Ziffle
Posted 12/21/2011 4:14 AM (GMT 0)
They didn't have all that far to go...
Posted 12/21/2011 4:16 AM (GMT 0)
tongue lol
Posted 12/21/2011 8:44 AM (GMT 0)
True , Very true . Between the moobs ( Man boobs ) and the lack of testicles that went missing mysteriously after signing a marriage certificate a few years back it's very likely I may have inadvertently stumbled into a sex change . The mere suggestion from one so knowledgeable as yourself on this issue is a matter of grave concern for me . Who may I ask is your gynecologist ?



A. Ziffle
Posted 12/21/2011 12:43 PM (GMT 0)
You guys keep me laughing.
Angie1953
Posted 12/21/2011 1:26 PM (GMT 0)
Are there veterinary gynecologists?
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