Cirrhosis Support Group

Cirrhosis is a consequence of chronic liver disease, most commonly caused by alcoholism and hepatitis C. Ascites is the most common complication of cirrhosis and is associated with a poor quality of life, increased risk of infections, and a poor long term outcome. Liver damage from cirrhosis cannot be reversed, but treatment can stop or delay further progression and...

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On the Downhill Slide.

deleted_user
deleted_user
I have been dealing with my husbands ammonia levels being so high, and his encephalopathy. Last weekend he went through the er with an ammonia level of 167. And I thought that was bad. He was in the hospital for three days. Today, both my son and I tried to wake him, but couldn't get him up. We called 911 and they came and took him to the er again. His ammonia level this time was 184, and he was borderline comatose. And the clinic wants to run more tests before they put him on the list. Go figure. I guess what I am not saying is this. Keep taking the lactalose (enulose). That is the one thing that I was told could keep those ammonia levels in check. No matter how bad it tastes, no matter how bad the side effects are, don't stop, or even miss a dosage. Not taking it has horrible consequences. I am going on right now one hour at a time, watching this man I have spent my life with, lying there in a bed with no recognition of me, straining against the restraints that keep him from pulling the stomach tube out of his nose, and having his unshaven cheeks sunken into his face. It tears my heart out. I just wish that back in the day when I was begging him not to drink or whatever, he had listened to me. If only I had tried harder or longer or more forcefully, this wouldn't be happening. But that was then and this is now. I know that God is in control, but I don't feel comfortable on this roller coaster, especially the downhill slide. I keep praying to God, He is here.
Gail.
deleted_user
deleted_user
Gail, God is there, right there with you and He is holding you and your husband and all your family in His loving arms. Trust in Him. Let Him take away your pain and just be there for your husband in any way you can. I can only imagine your pain right now but know that none of this is your fault. You couldn't make an alcoholic stop drinking. Addiction isn't something that a spouse has control over when even the alcoholic has no control. You are right. Only God is in control so just pray and surrender and abandon yourself totally to God's will. He will get you through this. I will pray for you.
deleted_user
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I'm sending up prayers for you and your family...this has to be most difficult for you...please don't blame yourself....I'm here for you anytime if you need to talk !!! my heart goes out to you and your husband...thank you for the advice on the lactalose.... SOME TIMES WE NEED THAT EXTRA PUSH !!!! Praying for you !!! Janet
deleted_user
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Thank you so much for your prayers and concern. I was very, very tired when I was writing, and feeling get magnified. I call the hospital this morning and they said he was coming out of it somewhat, but not making any sense. I will be with him soon at the hospital. Tomorrow I need to contact the clinic (150 miles from here) and see what they want us to do. Right now I want to talk to the local doctors and see if they want his in a facility. Then, if they do, I will try to talk to them about going near the clinic.
Take care and stay close to God.
Gail
deleted_user
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I can only imagine what you are going through only that both yours and his guardian angels are there with you filling you both with healing light, and the strength to do what has to be done.speake to him gently filling him with your love.

send with love and hugs.
tortise
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Gail... you and your husband are both in my thoughts and prayers.. may God be with you.. im so sorry to hear what you are going through. PLEASE never blame yourself... there is absolutely nothing that another person can do to stop an alcoholic from drinking.. i know that because im a recovering alcoholic and nothing that my loved ones could have said or done would have stopped me until I was ready to stop and I can only imagine the worry and pain I caused ...But like you said.. that was then and this is now

My heart really goes out to you and I will keep on saying special prayers for you both.

Love from Kathleen in england xx
deleted_user
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Look at me and listen stop beating yourself up so, right now just be there and remember he can hear more than you think so make sure the room conversation stays pleasant. He may slide into a coma at any time, and then he may return and then again he may not.......its all Gods will at this point, I firmly believe we all have a time to go, and we dont know exactly when but some of us get an idea, use this time as much as you can considering and just pray that when and if his time comes that he not suffer any more than he has to, make sure if there is any pain involved that he gets it liberally remember his past all those years of drinking his pain be kind and make sure he get what he needs there now. I have known many others that come out the coma and go home as its was not thier time so like I said noone knows really but one things for sure dear, youve been given a get ready call, God may know you need more time? God nevers puts more on us than we can handle, but damn it sure seems feels like at the time! :) you and him and family and friends are in my prayers here. just remember we care if you need me or any of us please dont hesitate.....hugs and love fromrya
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Thank you, Bryano, I am very blessed that he is coming out of the coma, and he is talking to me, although it does not always make sense. I do believe that God has total control of this situation in His hands, and we will get through this. I believe in prophecy, and several different believers who have no contact with each other, have told me that he will live and be a blessing to others. I hold fast to the fact that he will soon have a new liver. He has one more test to pass on his heart, and he will either be put on the list, his heart will be fixed and he will be put on the list, or he will not be put on the list, and God will give him a new liver. Which ever it is, it is ok with me. He has asked me if the time comes and he has not gotten a new liver, if I can let him go. I told him I could but I sure don't want to. But just for today, he is coming out of the coma. Hallaleujah!
deleted_user
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How is doing today, just wondering you may be there with him, you know when talks and is not making sense is to be expected, but the fact hes talking is a good sign. I love you whole attitude on him and hes Soo lucky too have you in his life. Have they done phallium (sp?) heart stress test on him? I'm having one done next month was just wondering about it? hang in there you all are in my thoughts and prayers.
xx bryan
deleted_user
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Thank you so much. They took out the stomach tube yesterday but they had to put it back in today. He was swallowing his meds in pill form yesterday but would not or could not do it today. Possibly throat irritation. He is not talking as much today, not as much babble. He did get sleep last night, which may have calmed down the babble. He always seemed to know what he was trying to say but the words could not come out right. He has had a stress test on his heart, the one where they inject him with a chemical which would cause his heart to race. He did just fine with it. He is scheduled for another endoscopic heart test on Nov 7th. We are faced now with the problems of whether to bring him home, send him to an extended care facility, should it be here near home, or close to the clinic. I have found the hospital that he is in now has a discharge planner. She is investigating and said she will help me and the kids (all adults) to make decisions for him. I do not want to make any decision for him without their complete agreement. We all get along so well, and I am so thankful for them. Take care, Gail.
deleted_user
deleted_user
You and your husband are in my thoughts and prayers. I have also had problems with the ammonia levels and the encephalopathy. My ammonia level has been 169, but I think it has also been higher. I hate the enulose/lactolose. Plus it doesn't help my blood sugar levels. I feel terrible when I take the enulose and I experience side effects. They had to add 2 other medications to work with the enulose to help reduce the ammonia level. My local Dr. gets upset with me if I don't take the enulose, but it seems to cause more problems then it helps. But the other two are working well and my ammonia level has lowered. My transplant Dr. told me acouple weeks ago that I can reduce the enulose and continue taking the other two. He said some people do not tolerate the enulose. Which I was so glad to hear as I now feel better. Please keep us informed on the progress. Suzes
deleted_user
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My husband takes the lactulose. He knows this is the only thing that keeps him functioning. We get it flavored for him. It only cost about $20 extra and we change the flavors around from time to time. He now takes lactulose every two hours. I've seen him in the condition your husband is in. It took an entire month to get as good as he is now and he still is slow in his thinking and speaking process. I'll be praying for you!
deleted_user
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Only $2 extra not $20. I'm an idiot.
deleted_user
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yes, Walgreens has that flavoring. Right now he is getting it in little cups at the hospital, and the side effect is eating his buttocks raw. He was watching the world series on the tv and he was hitting the palm of his other hand with his fist, yelling at the pitcher to throw the ball. So cute.
I am so glad to know that there is a possiblity in all of this for him to come out of this. He is going to a nursing home tomorrow if everything is ok, and I cant take care of him. It would be wonderful if I could look forward to him being at home!!
gail
deleted_user
deleted_user
Hi Gail,
My heart goes out to you and I hope you don't take this blame on yourself. My brother drank all his life it seems like and no matter what we said or did he still drank. He doesn't now, of coourse, but it's almost too late. But we love the sinner not the sin. That's all you can do and you seem to be doing that very well. Hang in there - my prayers are with you.
deleted_user
deleted_user
my prayers are with you,hubby and family.....
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