is he out of the woods?

Diseases & Conditions Hepatitis
1
my son was unconscious in July, in the hospital for a month, very weak , had paracentesis twice and looked like he wasn;t gonna make it.  In the last month, he no longer has ascetis, is getting stronger by the day, still has muscle wasting, but not as bad, seems to be coming out of it.  He still drinks his beer every day.  Can;t figure out how he can come out of it this way after being almost dead. 
 
My question is (and I know no one has a crystal ball) is he going to get better and better or is this just a lull in his well being.  It is difficult for me to understand how he can come back so good as he has cirrhosis, hep c, heart failure, etc.  Am I getting my hopes up too high or do some people come back to almost normal?  Or is this a yo-yo disease that will drive the caregiver nuts.  Any comment would be appreciated.  Don;t want to get my hopes up to high and then fall down like a rock.
                                          Chris
2
Chris,
Please don't get your hopes up to high. My husband was in a coma in 2001, he recovered, or so I thought. He stopped drinking. Now he is in Liver failure, after 4 1/2 years, of being sober. Transplant candidate... He was working hard and taking ibuprofen for his aches and pains. He suddenly started getting fluid in the legs to the extreme of being in his thighs, then to his stomach. He did not not have the ascites until this November. He now has muscle wasting, encephalopathy, ect... My husband was almost dead in 2001. Cirrhosis does not get better, the symptoms might subside at times but it will come back, and usually worse. Yes it can be a yo-yo disease. HUGS and PRAYERS!!!

Teresa
3
Thank you Teresa for your replay.  It just boggles my mind that one can get so sick as to nearly die and then be almost normal.  The doctor told my DIL that he was a very sick man but now that he feels so good I just got my hopes up.  Too high, Maybe.  I have read many web sites on this and they all say that cirrhosis does not get better. 
 
I appreciate your answer and wish you the best.  Thank you so much.
                                 Chris
4
Chris once we have liver failure we are never out of the woods. we can 7 often do stabelize for a time , for mr I had 4 rough year with 4 commas, nearly 6 years stable & last Sept have been going down hill again. I do get my good days but anything can happen anytime. Once the liver is scarred there is no reversal for cirhosis & certainly not when we abuse our bodies with futher things like alcohol that caused the dammage to begin with.Liver failure doesn't just go away. This definately is just a lull.Many times I "appear " to be comming back normal but without a transplant it will never be so. Stable is only a temporary thing to a certain degree but the liver continues to deteriate.This is a yo yo disease that drives caregiver & patient nuts.Please don't get your hopes up. You will fall like a rock.Hugs. later....

"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there."
 
 
lerie

5

to all,   I haven't posted for a while as the last time my son had paracentesis it hasn;t come back so now he feels like it never will and is doing what he wants to including drinking his 12 beers a day.  I do not badger him anymore about his drinking as I might as well talk to the wall, and neither does my DIL (God bless her) as she too can see it does no good.

There is a 10 yr old daughter involved in this too and she too can;t see why her daddy won;t stop drinking. 

I suppose now it is just a waiting game until he becomes ill again.  I read other threads where people do everything in their power to keep the illness at bay and my son just does not give a darn. 

He looks awful with the orangish gray palor but says he feels great.  Just wanted my 2 cents worth in the forum that sometimes you just cannot do a thing, just watch and pray.  I guess the alcoholism is going to win out in the end.  Thanks for letting me share my troubles when yours are so much greater.

                                                 Chris

6
Hi chris, glad to see you again. we've all been worried about you & wondered how things were going for you sweetie. you know you can come anytime & join us regardless of your son's status. You have a lot to offer to & are a valuable member to. Your right it will do no good to nag him about his drinking in fact often time this just makes it worse, non the less you still need support & to live your life as well as your DIL, whom is also more than welcome to join us. I feel so bad for the children involved in these situations. May I suggest breaking the silence & get your grandbaby some councilling. She needs someone to guid her & help her come to terms to with all this. This is just too heavy of load for her & could have serious impact & leave her with self doubt for the rest of her life without councilling.Please consider this for her well being. alcoholism has taken a grip on many lives ,destroying families & lives along the way. You can do something. You can focus on you, your DIL & your grandaughter. Your troubles are just as great as our Chris. Just different that's all. As you read some of the other posts feel free to join the conversation in them. Stay close we care. My thoughts & prayers are with you & your family. HUGS. later....

"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie

7
Hello Chris,
I have been worried about you! You have really hit home with me, when you were talking about your grandaughter. We have a nine year old son, and he has been going through a hard time also. It just isn't fair to the children. I have been very honest with our son, he knows his dad needs a transplant or he will not live long. I have taken him to the doctors, and involved him in the process. He was having anxiety attacks and ignoring his father, he told his father to not come in his room. He started klinging to me more and more. Since I have involved him, he is opening up more, and making positive comments to my husband. Being honset with children is important, the truth does hurt, but they can learn how to cope if they know what they are coping with. Valeries suggestion about a counselor is a good idea. School counselors can also be helpful. I am not sure but it seems like they have ala-non for children, it would be worth checking into. She needs to understand that his drinking is also an illness and how she can best cope with it. Please believe me when I say your problems are really no less than mine. Please take care of yourself, DIL, and that precious baby!!!!! I do care. My Prayers are with you and your family!!!

HUGS

Teresa
8

To All,

I haven;t posted for a while as things were status quo but now my son has a very bad cold which will not go away and he is sleeping some 20 hrs a day.  Can anyone give me any explanation for sleeping so long.  I would appreciate it.  He never stopped drinking.

 

                                                     Chris

 

9

Hi Chris,

The sleeping for most of the time is an indication of encephalopathy which is common with liver disease. The cold is very taxing on his liver and may be the straw that breaks the camels back until it goes away.

I imagine it's hard for him to drink as much when he is sleeping all the time. I wish I could tell you something that would get him to cut back on drinking or give it up. Alcohol is very, very toxic on the liver when you have cirrhosis or are suseptable to liver disease.

Keep in touch with us. We like hearing from you when things are okay as well as when you have problems. The emotional support is very helpful for most of us. We may not be able to alter your son's destructive lifestyle, but we can help make life more bearable for you. And you can also help keep us going.

Warm hugs,

Barb

                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 

10

thanks Barbara.  I know he can;t remember too well and forgets things that are important.

It is just that he seemed to be making strides toward being better.  I am planning a trip with my DIL for the spring break to get her, me and my love, the granddaughter away from this for a while.  My DIL has spoken to the child;s doctor and he feels that councelling would be very helpful and they are going to start that next week.  She read several threads that suggested she do that so you wonderful people are helping both of us.  Thanks for letting me get this off of my chest.  you people are wonderful.

                                                  Chris

 

11
"It is just that he seemed to be making strides toward being better. "

Chris, forgive my bluntness, but he didn't seem to be doing anything towards getting better. I think he was just status quo for a while. His immune system is not working well because of the liver condition and his continued drinking, so he picked up a cold which has him feeling much worse than if he were in good health.

I've received no treatment for my hep C or liver cancer (waiting still for cancer treatment), and haven't had alcohol in nearly 20 years--but caught a doozy of a cold that went into bronchitis and I can't seem to shake it, despite antibiotics. One day I'll feel fine, the next I'll be coughing and miserable. Prior to the cold, I went through a spell of sleeping 18-20 hours a day for a week or more. It had to be encephalopathy, though it hasn't happened since then. I do, however, sleep more than a normal, healthy person.

Your son can't drink when he's sleeping, so that's a good thing. I think it's a great idea to get away with your DIL and g'daughter. Be aware that your son may have a "celebration" while you are gone, if he is sleeping less, and drink even more than previously--but that is not your responsibility and all your lives should not stop for him. Just the opposite. I'm also pleased to hear that your g'daughter will get therapy. I think it will be helpful.

It's so good to hear from you. Please don't be a stranger! Come back and let us know how things are going with you.

Connie
12
Hi Chris, Cirrohsis & Encephalopathyare a rollercoaster ride at the best of time.& everyone is right his drinking is making his condition worse. Furthermore every time your son has encephalopathy the alcohol withdrawel is going to make things worse as well. His cycles are going to be much more severe because of te alcoholism. he does not want to stop drinkink plain & simple. Nothing is going to stop him end of story because he does not want to, this cold or any viral infection is only the tip of the iceburg & as Barb said could be the straw that broke the camels back.our livers can't filter anything or send chemicals etc. to other organs in the way required.therefor we can not fight any infections any more. It sounds like this one for infections applies to all liver diseases based on Connies experiences as well. I'm glad you & your DIL & grandbaby are taking a trip. Going or staying is not going to stop your son one way or the other. So go & enjoy you trip & don't let worrying about your son stop you, he is not worried about you. nor will he make any effort to stop drinking regardless of what you do or say. Maybe everybody getting on with thier life will shock him into stopping & thinking what he is doing to those he claims to love. He will celebrate whether your there or not! Have a great time! later....

"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie

13

Hello Chris,

Mark was sleeping around 20 hours also, he was very unstable at the time. The sleeping and forgetfulness is encephalopathy.  With liver disease just a "cold" can take a month or longer to get over. I will keep on praying for him!!

I hope you and your DIL and grandaughter have a wonderful time, on Spring Break. It will be good for you!! I am glad that DIL is seeking counseling for the baby. It will be helpful to her. My son is doing well, he has counseling scheduled at school a few times a week. I try to keep it simple and honest with him. I do take him to some of the Dr. appointments, so he has a part in the process. It has cut down on the anxiety attacks.

HUGS & PRAYERS

Teresa


Post Edited (TDT) : 3/7/2006 7:36:23 AM (GMT-7)