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end stage liver disease, refuses medical help, don't know what to expect or watch for.

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Posted 12/15/2010 8:31 PM (GMT 0)
Hello everyone I hope you can help me. My husband has been an drinking since his teens he is now 65. He had the huge belly and large neck. Then a couple of months ago the suddenly became very ill. He could not get up slept almost around the clock could not eat. He was very jaundice he lost at least 30 lbs in 2 weeks. He refuses to seek medical help. Slowly I was able to get to to eat broth and now he seems to be back where he was before this started. Tired, easily irritated, he still has no appetite. Only eats because he knows he has to and then very little besides alcohol he takes in about 600 to 800 calories a day. He sleeps a lot but thinks he doesn't. He gets mixed up about things and is angry and judgmental of freinds and family. this is a big change in personality that has happened over the past 18 months and getting worse. He is jaundice but the severity seems to fluctuate, I know he has moderate swelling in his legs. His stomach and neck went down while he was so sick but is coming back.The last 2 days he says his neck hurts in the back at the top of his neck. I know Drs. told him several years ago that he had cirrhosis. I would like to know what to expect. I can't force him to get medical care and he won't as long as he is able to refuse it. I know he is in the end stage but don't know if it is the beginning of the end, middle or what. If anyone can tell me the signs to watch for progression. I have no support group

Thank you
Bea G.
Posted 12/15/2010 9:19 PM (GMT 0)
Dear Bea, Well the good news is that you are no longer alone... you have found an excellent bunch of people with an excellent knowledge base. I, myself lost my partner to this disease May 22 of this year.  Much of what you are going through I experienced although he did go to the doctor. First of all, without sobriety the future is bleak. Everyone takes a different path... many things are the same ... such as symptoms... but a timeline... no one can give you that... without sobriety... he would not be a candidate for a transplant and therefore this disease would take it's course and his life... the agitated state can be the result of mental confusion. If you read through the posts you can find many similiar accounts. Educate yourself and take care of yourself. This will probably be one of the hardest things you have ever done. We will be here for you. The moderators will respond also with more specifics. take care. you and yours are in my thoughts and prayers this day. Sandi

Posted 12/15/2010 9:29 PM (GMT 0)

Welcome to the forum Bea,

As Sandi said, you'll find a lot of folks here who care and will have some suggestions for you.  Reading through the posts will help you figure out a lot of what is in store for your husband and yourself.  I haven't been in that position (I have a different sort of liver issue - autoimmune hepatitis) so I can't personally offer much aside from my hopes that he comes around and seeks medical attention and quits drinking.

My thoughts are with you,

Posted 12/15/2010 9:57 PM (GMT 0)

Hello, Bea, and welcome to the forum.  You will find a lot of information about end-stage liver disease (ESLD) in the folder at the top of our main page entitled Hepatitis Resources.  It addresses your questions.

Read some of the posts on here dealing with alcoholism and liver disease.  Also, let your husband know that he is going to die sooner than later if he continues drinking.  In addition, as has been mentioned, he will not be a candidate for transplant unless he has six months of documented sobriety in AA or an alcohol treatment program.

There are certain medications that could help him, such as diuretics and Lactulose.   Your husband is undoubtedly experiencing elevated ammonia levels, which go to the brain and cause confusion, agitation, nastiness, etc.  Lactulose rids the body of ammonia through BMs.  Of course, he would have to agree to go to a doctor to get these prescription meds.

If he is not going to stop drinking and won't seek medical care, the only thing you can do is take care of yourself.  Basically, you can expect the symptoms he is exhibiting to get worse until he goes into complete liver failure and dies.

Also check out the Caregivers Sharing thread.

Hugs,

Connie


Posted 12/15/2010 11:04 PM (GMT 0)
Thank you so much for the support. I read through a lot of posts. don't understand a lot of the med. terminology. It is is a comfort to know I am no longer alone. But heart breaking to read of so many others going through the worry and fear I know. I was waiting for my husband to go into DT's when he was so sick but he never showed any signs. He slept for 2 weeks waking for only minutes at a time. I have no hope of him stopping the drinking or going for medical help. He knows he is dieing sometimes he tells me he doesn't know how much longer he can go on. He can see what his drinking has cost - the relationships with the children and grandchildren, he seems to just be waiting to pass. I mood changes are the hardest. He has always been the kindest person never a bad word about anyone now he is angry and says mean things about everyone. I didn't know if anyone would respond. I feel so blessed.
Prayers for all of you and Thank you again
Bea
Posted 12/15/2010 11:20 PM (GMT 0)
Bea, anything you don't understand, just ask.  Here are a few terms you may not be familiar with:

ascites - fluid in the abdomen, causing the belly to swell.

esophageal varices - Portal hypertension in the portal vein of the liver causes this.  Pressure builds up and causes enlarged veins in the esophagus which can rupture and cause a person to bleed out.  These varices are usually banded to prevent rupture.

TIPS procedure - Transjugular intrahepatic portal stent.  This is done to relieve ascites.

edema - swelling of the lower extremities

HE - Hepatic encephalopathy.  What you described about your husband being nasty to people and confused.  This is caused by the buildup of ammonia in the brain.

Also check out the Medical Terms thread for correct spellings of medical words and some meds.

As a sober alcoholic myself, it distresses me that your husband will not at least try to get sober.  If he thinks he's going to have an easy death, he's very mistaken.  This is so unfair to you, too, but you chose to stay with him. 

Hugs,

Connie

 

Posted 12/15/2010 11:33 PM (GMT 0)
Hello  Bea and welcome to HealingWell.   I am so sorry about your husband.  My husband passed on from liver disease back in 2007.  So I do know exactly what you are going through and all your fears as well.   If you have any questions at all please ask.  We have so many wonderful members who have been down that road that your are traveling with your husband. 

I encourage you to take care of yourself during this time.  Give yourself a break whenever you can.   This disease is not only hard on the patient,  it is also hard on the caregiver.  

Lot's of thoughts and prayers.........

Posted 12/15/2010 11:42 PM (GMT 0)
Thank you for the info Connie it helps to know the terms. Yes I will stay with him. He is the love of my life. Alcoholism is an illness. I attended Al-anon for many years it saved my marriage and my life. He has been a good husband and father until 2 years ago when all the changes started. I will be with him until the end and praying he will change his life. My heart aches to know how he will suffer. Yes I know I will also and that I have to take care of me too. Thats the main reason I joined is to have a support group going through this. I struggle with wanting him to go quickly and not suffer so long to wanting him with me as long as I can no matter what. I can only pray for God to do what is best for him. I am trying to let go and let God.

Bea
Posted 12/16/2010 12:49 AM (GMT 0)
 "I struggle with wanting him to go quickly and not suffer so long to wanting him with me as long as I can no matter what."

Many here have felt those same emotions.  You are definitely not alone.  If you still have some Al-Anon books, perhaps it would help to pick up one of those (the Al-Anon 12 & 12 or meditation books.)

Hugs,

Connie

Posted 12/16/2010 1:57 AM (GMT 0)
Emma, I'm not sure if that relates to the liver at all.  It could be from elevated BP.  I really don't know, which is why I didn't comment on it.

Hugs,

Connie

Posted 12/16/2010 3:02 AM (GMT 0)
Bea, Here is a voice from one in the same boat, or was until September of this year. My hubby didn't want to quit drinking, but when he got really really sick, he finally went to the doc who explained to him pretty clearly: "If you drink one more day, you'll be dead by Christmas."

Christmas!

And here we are, 2 weeks from Christmas and there has been a heck of a change.

Sober since late September.

Three hospitalizaitons: peritonitis/sepsis, acute renal failure, and pancreatitis (which turned out to be renal failure also).


But he has been accepted into a Transplant Program and is undergoing the many tests to earn a seat on a transplant list. If he doesn't stay sober and go to his AA meetings, he's OUT.

I never thought Id see a day, or a potential day, that our life would not include the drinking.

I promised to see my man through this...his passing or his new "birth" day.

Good luck to you and follow the advice you have gotten today...take care of you. I have a hard time with that one. But it is right.

Mama Lama from Florida.
Posted 12/16/2010 4:47 AM (GMT 0)
Bea, I am sorry your husband is so ill and doesnt want medical help. Sadly the only way around that is via an ambulance if he should decline to a point he cant refuse unless of course you include mental status changes as one of the reason you are calling. You really need to maintain your health and your mental health, please take care of you!
Sue
Posted 12/16/2010 1:11 PM (GMT 0)
I don't know about the neck, it went down when his stomach did. His daughter was in last Christmas and is an RN she said something about arteries or veins, I didn't understand. It went down when his abdomen did. His blood pressure was high but seems to fluctuate.It has been 2 months since this happened.
The pain in the back of his neck started 2 days ago. His blood pressure was ok yesterday but pulse was 92, he has sat in his chair for 2 days only getting up to go to bathroom. He has only had a cup of soup each day for the last 2 days . Has told me he will try to eat more today. I have tried to keep him on a low sodium low protein diet, and no red meat. Mostly he eats veg. soup, and skinless chicken breast no fried foods I called the ambulance when he was so sick but he refused treatment. He knows he's dieing but doesn't seem to care, says I'll be better off when he's gone, I do not agree, My faith and ala-non beliefs are what keep me sane. This forum is going to help also, it has already. I know I have a long road ahead and the worst is yet to come. Thank everyone for the support, info and prayers
Bea
Posted 12/17/2010 1:58 AM (GMT 0)
Well Bea... like you ... Mike was the love of my life...and he knew... he was dying... and he knew... that he was making those choices... and he had access to the wisdom of the forum here...but the choice to be sober came too late...I made a promise to stand by his side until he took his last breath and I did... and I would do it again in a heart beat... bad usage of words... however... there was much hope to be found here... and a place to say those things I could say nowhere else.. and a bond that could only be forged in times like that...as Mike lay taking his last breaths... I was there typing on that hospital computer to this forum... and yes I thank God everyday for this forum and what they helped me through... Mike's choices didn't change but my ability to cope certainly was strengthened... and not everyone will go that way... and there is always hope... and I never let Mike see my fear... I always carried hope and peace into the room... because I believed even up until the end that there was hope...so believe... and hope...and maybe he will turn around... others have... my prayers are with you and him tonight...Sandi
Posted 12/19/2010 4:13 AM (GMT 0)
As a professional caregiver (RN) and a caregiver to my mother for so long I read the posts and feel like weeping. I remember the helplessness I felt. I remember the guilt I felt. All those negative things that eat away at us as we watch our loved ones suffer. I can tell you that no matter what, never give up hope. However; as was stated by so many the person who is sick must take an active roll in their own healing. When they choose not to then all we can do is stay by their side and respect their decision. I have watched so many wonderful people take their last breath I couldn't even count them all. I have to admit that I often prayed for my patients to pass away. The suffering was just too much. When my mom became so ill I prayed that GOD would either cure her or let her pass quickly. I felt so guilty praying for my own wonderful mother to die. It took me some time and alot of support from my friends in this forum to overcome my guilt. They blessed me with their wisdom and experience believe me.
I finally realized that my tears and all the sadness I felt was for myself ...not my mom. She was finally out of pain and misery. It was me I cried for. When that finally sank in to my brain I started to heal. Find peace in yourself. Know that you have done evrything you could humanly do. Talk to people on the forum because it will be your saving grace. My prayers are with you.
Posted 12/21/2010 5:04 PM (GMT 0)
Thank you all, My husband had another bad spell sleeping around the clock not eating very weak. He is eating again and still very weak, it didn't last as long this time only a week and he was not so jaundice. I feel blessed to have so much support but so much sorrow that there are so many others going through this. My prayers are with all who are going or have been through this.
Posted 1/4/2011 4:32 PM (GMT 0)
Hello Bea

I have just been reading your story and the sad part is that when i was reading it....................it sounded like it could have been me. My friend is in exactly the same position. Detoxed several times ending with his falling off the wagon. All he does is eat a little, drink alot and sleep when not drinking. I just feel like i am watching a train crash in slow motion and it makes me sad that he wont fight harder for his life. the changes in personality are very cruel and i just have to walk away and not listen because its just nasty. I have tried to walk away but each time i know he has no one else and i cant leave him to look after himself because he cant. Now for me having this site is like having therapy and information which are the two things that will keep me going. When i have been out of the room he is in the first thing i do is check to see if he is breathing!!!!! it is a very cruel disease.....but this is where we show our strength of character by being strong. My thoughts are with you
Posted 1/14/2011 8:19 PM (GMT 0)
This is a terrible disease, I think sometimes it is harder on the caregivers and family than the person who is ill at least until the final stages. My heart aches each time I read about another family going through it. I know all of you who have posted have helped just buy sharing your experiences. A few of you are in the same stage I am . My husband has been given a good spell, of course that means more drinking until the next bad spell hits. Sometimes I just want there to be a magic pill to make everything better, sometimes I just want it over. But I always have unlimited love for my husband. All the mixed feeling make it harder, but all of you make it easier to deal with each day.
Posted 1/14/2011 9:22 PM (GMT 0)
I think there is really no way a person can walk in the shoes that the person who has the illness wears... I find myself more and more reliving and living Mike and I's moments together... and while there are many many things I did right in supporting him..and helped to soothe and ease his fears as we took that journey together...I know that I never quite understood what HE was going through... sometimes now in reflection and reading David and Rick's words I have a little better understanding but I know without a doubt I fall woefully short of understanding fully... only that person who has the illness knows. You kind of hit on an area that I've been meditating and reflecting on lately. Sandi
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