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Signs of end stage of liver cirrhosis?

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Posted 6/4/2007 5:18 PM (GMT 0)
My father was diagnosed with liver cirrhosis about six months ago. He already had sever sweling then in his stomach and ankles. They have kind of gotten that under control with a stint but he is still not doing well. Over the past month his has been really out of it. He can't really get around anymore. He has trouble keeping his balance and getting to the bathroom on time. He also doesn't always understand what people say. He is up and down all the time during the night and even during the day. Well this morning when he woke up my mom said he was really unresponsive. She called an ambulance this morning and they brought him to the hospital. She couldn't even get him in the living room and had to get a neighbor help move him. Right now he isn't talking but he'll open his eyes but when the nurse asks him to squeeze her hand he doesn't so I'm not sure he even really understand what anyone says. He is breathing fine and doesn't have a temperature. The doctor said it could be one of three things. My mom gave hima sleeping pill last night, which is prescribed to him by his doctor, and perhaps that may not be out of his system. Also his amonia levels may be up and they are waiting on blood work. Also he hit his head the other day when he fell in the tub so perhaps that could be the reason. I've tried researching online to find out what happens in the end stages but there is just so much information that I'd rather just here it from someone that has seen it or knows. He's on a transplant list but he has been doing so horribly that I don't see him making it that far. On top of it his medicaid still hasn't come through yet. So can anyone shed some light on what they know are the end stages of liver cirrhosis.
Posted 6/4/2007 5:56 PM (GMT 0)
my sister was admitted to the hospital 3 weeks ago and is still there. A heavy drinker, she now suffers from protinitis and is having her abdomin drained for the 4th time today. I had to give consent to the hospital as she is out of it today. Her amonia levels are high. It is frustrating because once awake, the doctors will not give us information as it is a privacy issue and we have as yet been able to get her to sign a medical release form. I would stress that this is imperative to get him to sign while awake or it can be tricky.
Posted 6/4/2007 7:01 PM (GMT 0)
how does that work if you're married though? i would have thought my mother would have the right in that case. they had asked her last time he was in the hospital about resusitation. he'd had his stomach drained a lot in the beginning too, but this stint has helped keep the fluid low. it is that fact that he isnt very lucid that has be concerned. my father has hep c but he was also a very heavy drinker also.
Posted 6/4/2007 7:40 PM (GMT 0)
I am new to all of this, but believe spouses have certain rights to information that the rest of us don't have. My sister is 41 and no concent is given even to parents unless she is unconcious. We did get her signature on last will and testament. I don't live near her nor does most of her family. Infact I just moved back into the states after 2 years in US Virgin Islands. I am trying as best I can to keep alllot of info to myself as my father has Parkinson's and my Mother is a wreck right now. This is why I moved back to the states to be only 2 hours from her, but we did not expect all this with my sis. I am still unpacking! A stint sounds like a much better idea that to keep injecting a catheter. She does have a stint in her neck now t which has 3 lines. They were having problems finding a vien. I suppose for blood draws for testing and administration of pain meds. I am so glad I found this site. It was wierd. I prayed for help and then opened the Sun. Parade section and there was an answer, this site. I am with you in spirit and serching for answers to my questions as well as yours. Glad to have some help.
Posted 6/5/2007 12:00 AM (GMT 0)
Calie~ Just found out from my parents that concent is still a crucial piece of paper in spousal cases. My folks found that out the hard way. Your father needs to sign papers for you and your mother. I guess in case of divorce etc. it is the law brought about by President Clinton. Get his signature so at least you and your mom are not left in the dark. As I find out info for you I am also informing myself. Too bad this is not common information. I see you are demanding others to talk to you. Good for you. You go girl!
Posted 6/5/2007 3:29 PM (GMT 0)

Hi,

End stage liver disease is very frightening and unpredictable. It's one thing after another and vigilence becomes imperitive.

Yes, a durable power of attorney for medical decisions is necessary with the HIPPA regulations. Even a spouse cannot be given information without it. Some doctors or hospitals find ways to get around this but I wouldn't take a chance. Even with consent, I've had problems getting information or appointments over the phone for my husband.

Currently Gene is receiving home hospice care so I am allowed to make decisions and talk with the team regarding concerns, needs and prognosis.

Hang in there; we are there for you.

Posted 6/6/2007 4:48 AM (GMT 0)
i dont think there is an issue of my mother having any control over what happens to him. unfortanetly he isnt doing well. he isnt responding to anyone and early this morning they said he was critical. his blood pressure was real low and his kidneys weren't operating well. also he looked liek he was getting pneumonia. they have put him on anibiotics though. luckily his kidney is producing more urine now and his blood pressure is better. they did sedate him though because they ahd to put him on a resperator. he was only getting 20% of the oxygen he needed. they said the oxygen is up in his blood though which is good. i think the concern now is the pneumonia. also, even before the sedative he wasnt responding. i think his amonia levels are up real high. they have been giving him lactalose every two hours to try to get him to have a bowel movement. he isnt in a coma though. i think there hoping once he has a bowel movement the amonia levels will start to come down and hell become more concious. he'd been doing bad over te past week but to see him on the bed unconcious with a resperator was horrible, i couldn't even look at him for the first five minutes. hopefully tomorrow hell be doing better still but im almost scared to wake up in the morning and find out.
Posted 6/23/2007 4:35 AM (GMT 0)
Calie, you haven't posted since 06/05. How are you doing? Did your father pass away? Please post.

Hugs,
Connie
Posted 7/12/2007 1:24 AM (GMT 0)
You have a high blood amonia level, swelling and holding fluid, possable kidney impairment.

I was diagnosed in 1989 and have have had two transplants
Posted 7/16/2007 4:13 PM (GMT 0)
My mother suffers from liver cirrhosis at beginning/middle stage. She goes for CT scan every three months to detect any growing liver tumor (hepatoma). Any new tumor will be treated with chemo embolization. Unfortunately her hepatoma is considered agressive and up to now she has undergone chemo embolization twice. Her doctor predicted that she has four years to live (but of course we never told her). To improve the liver function as well as to slow down the cirrhosis, she takes hepsera (adefovir dipivoxil).
Recently she decided to try chinese medicine and natural extract. We were referred to a chinese doctor who can deal with cirrhosis. He gave her 3 different pills -his own mixture- to be taken twice daily. After one month consumption her condition should show some improvements. Coincidentally I came across to golden sea cucumber extract, which is believed can improve cell regerenation and heal hepa*** B. So I asked her twice a day to drink golden sea cucumber extract. Well, we'll see in one month time and hope to see some improvements.
Does anybody know other natural extracts to fight cirrhosis?
Posted 8/15/2007 12:11 AM (GMT 0)
Hello all, my mom just passed away on Aug 3, 07 with esld. She was still pretty young 53 with two daughters me being the oldest and five grandchildren whom she just adored! This is very hard and to be honest does'nt feel like it could be real. I feel like part of me is gone and just empty inside or something, hard to explain. I can't tell you how much my mom is missed!
Well i found this site as i searched for answear's etc. The family learned of my moms esld four days before she passed away and it was down hill at a very rapid pace. My mom alway protected me and my sister from begining to end, i guess. One thing i can say is she passed peacefully in no pain with me by her side.
Please tell me how people make it with such an important person or they most important person in their lives being gone? I have to be strong for my sister which i always will, but inside everything is crumbled!
I'm gonna tell my sister about this site too.
Thank you
Posted 8/15/2007 12:25 AM (GMT 0)
Actually i would suggest anyone that has a family member,spouse,friend etc going through esld, spend as much time with them as possible and be in the moment. Show your love give kisses do things that they enjoy even if they dont have alot of energy let them feel as if they can do what ever is in their heart, with some limitations of course (smile) but they dont have to know that part.
Hope this can help.
Posted 8/20/2007 4:20 PM (GMT 0)
Hi there All,Im new in here,My hubby  Has  Cerrhosis,He was told 6 months ago, I have found him unconsious 3 times in this short time,He was sent in last week to,He is still in there,He has put 5 stone on in 2 weeks ,With Water. He has the N.A.S.H.  Cerrhosis,Fatty Liver . I don't understand why they never picked this up sooner,As he has been in and out of hopital for the last few years for tests,1st they said he had cancer on both lungs ,we lived with that for 9 months, But they had made a mistake,It was Cerrhossis.All they can do for him is give him water tablets.They cant do anything more for him,They have told me its just a matter of time before he passes away,I feel so mad that they couldn't have found ,and done something sooner.

Well take care all.

 Blondie x

Posted 8/20/2007 4:29 PM (GMT 0)

lesluv1 said...
Actually i would suggest anyone that has a family member,spouse,friend etc going through esld, spend as much time with them as possible and be in the moment. Show your love give kisses do things that they enjoy even if they dont have alot of energy let them feel as if they can do what ever is in their heart, with some limitations of course (smile) but they dont have to know that part.
Hope this can help.

Hi there,Im new to this group as well,I do feel for you,A i know what its like to lose a mother to,They say time is a healer,But its  in Time  you learn to cope with it,I wish you the very best and your sister.
Posted 8/20/2007 4:47 PM (GMT 0)

agus said...
My mother suffers from liver cirrhosis at beginning/middle stage. She goes for CT scan every three months to detect any growing liver tumor (hepatoma). Any new tumor will be treated with chemo embolization. Unfortunately her hepatoma is considered agressive and up to now she has undergone chemo embolization twice. Her doctor predicted that she has four years to live (but of course we never told her). To improve the liver function as well as to slow down the cirrhosis, she takes hepsera (adefovir dipivoxil).
Recently she decided to try chinese medicine and natural extract. We were referred to a chinese doctor who can deal with cirrhosis. He gave her 3 different pills -his own mixture- to be taken twice daily. After one month consumption her condition should show some improvements. Coincidentally I came across to golden sea cucumber extract, which is believed can improve cell regerenation and heal hepa*** B. So I asked her twice a day to drink golden sea cucumber extract. Well, we'll see in one month time and hope to see some improvements.
Does anybody know other natural extracts to fight cirrhosis?

Hi there,Another Good Thing for the liver is: MILK THISTLE complex,Which you can buy in any health shop.Hope this info helps.

 

Posted 8/20/2007 5:01 PM (GMT 0)

calie said...
My father was diagnosed with liver cirrhosis about six months ago. He already had sever sweling then in his stomach and ankles. They have kind of gotten that under control with a stint but he is still not doing well. Over the past month his has been really out of it. He can't really get around anymore. He has trouble keeping his balance and getting to the bathroom on time. He also doesn't always understand what people say. He is up and down all the time during the night and even during the day. Well this morning when he woke up my mom said he was really unresponsive. She called an ambulance this morning and they brought him to the hospital. She couldn't even get him in the living room and had to get a neighbor help move him. Right now he isn't talking but he'll open his eyes but when the nurse asks him to squeeze her hand he doesn't so I'm not sure he even really understand what anyone says. He is breathing fine and doesn't have a temperature. The doctor said it could be one of three things. My mom gave hima sleeping pill last night, which is prescribed to him by his doctor, and perhaps that may not be out of his system. Also his amonia levels may be up and they are waiting on blood work. Also he hit his head the other day when he fell in the tub so perhaps that could be the reason. I've tried researching online to find out what happens in the end stages but there is just so much information that I'd rather just here it from someone that has seen it or knows. He's on a transplant list but he has been doing so horribly that I don't see him making it that far. On top of it his medicaid still hasn't come through yet. So can anyone shed some light on what they know are the end stages of liver cirrhosis.

Hi there,Well a lot of what you are saying here,Is like what i have seen with my hubby,As the liver fails,The toxics go to the brain,and then he goes confused then comma,I have found my hubby 3 times in a comma,But he has amazed the doctors as he has pulled through 3 times,He has now put 5 stone on,with water,So he is in hospital at this moment,They are giving him more Duretic Tablets  to get rid of the water,He dosnt come  to for a few days when rushed to hospital,and dosn't remember a thing .

Posted 8/20/2007 5:05 PM (GMT 0)

lesluv1 said...
Hello all, my mom just passed away on Aug 3, 07 with esld. She was still pretty young 53 with two daughters me being the oldest and five grandchildren whom she just adored! This is very hard and to be honest does'nt feel like it could be real. I feel like part of me is gone and just empty inside or something, hard to explain. I can't tell you how much my mom is missed!
Well i found this site as i searched for answear's etc. The family learned of my moms esld four days before she passed away and it was down hill at a very rapid pace. My mom alway protected me and my sister from begining to end, i guess. One thing i can say is she passed peacefully in no pain with me by her side.
Please tell me how people make it with such an important person or they most important person in their lives being gone? I have to be strong for my sister which i always will, but inside everything is crumbled!
I'm gonna tell my sister about this site too.
Thank you

You just hang in there my friend,I know how hard it is for you & your family,And yes,The most important person in your lives,i quite agree with you,You will cope,you will have the strength,May God be with you.
Posted 8/21/2007 3:53 AM (GMT 0)
i lost my dad 5 years ago,and it is still a very painful area of my life, but it does get easier to live day to day, just keep busy,and allow yourself quiet times to reflect on the good times you have had. Also, time to cry,,,,,,,,you will be better in a few months,,each minute brings you closer to healing.
Posted 8/28/2007 11:35 AM (GMT 0)
Hi, I am a new member. My name is Albina. My mom has hepatitis C for years. She has been followed by specialists at NYU Hospital for over 12 years. Recently, they found a small tumor on her liver and placed her on the transplant list. She is 70 years old. The doctors are great and we really trust them, but iswe are very scared. Please, whoever has similiar condition give us some information. I am very concerned since there is only one question in my mind: how she will recover, what quility of life she will have after the procedure, and DOES IT REALLY WORSE IT? The last thing I want to see her suffer. My mom always has been very active person who likes to live life and travel.
Since English is not my native language, please forgive me for my mistakes, sincerely, Albina
Posted 8/28/2007 8:40 PM (GMT 0)
Albina, welcome to the forum! Has a biopsy been done of your mom's tumor? How is her liver function? I have hep C (diagnosed in '93), and about 2 yrs. ago, I developed a huge, cancerous tumor in the right lobe. My liver function was still pretty good, so I didn't qualify for transplant. Also, the tumor metastasized to the inferior vena cava, another reason they would not do a transplant. With chemoembolization and TheraSphere treatment, the metastasized part shrunk back into the original tumor and that tumor and the rt. lobe of liver were destroyed. I ended up having a right hepatectomy, where the right lobe of the liver, including dead tumor tissue and gall bladder, were removed. The left lobe has taken over the work of the right. If that should fail, then a transplant would be necessary.  I am doing well, except for a hiatal hernia that has developed at one of the incision sites.  That will be repaired by Oct.

From everything I've read, a transplant gives liver patients a new life. The main problem is with rejection. Don't be afraid to ask the doctors to explain anything you don't understand or are concerned about.

Connie

Post Edited (hep93) : 8/28/2007 2:52:07 PM (GMT-6)

Posted 12/29/2007 11:06 PM (GMT 0)
confused  Hello to all,

            I have esld and am awaiting transplant. I also have swollen legs and abdomen but have not had any fluid drained as yet. Hoping someone can help me cope with some of the stuff I'm going thru emotionally and physically. I have 2 grandchildren I cannot even play with anymore which just tares me up. Don't know what to do or expect. Thanks from the mailman.

Posted 12/30/2007 3:46 AM (GMT 0)
Hello Mailman and welcome to Healingwell. You grabbed and older post. You may just want to start a new post yourself and introduce yourself to the rest of this forum. We have a lot of very nice and knowledgeable people on this forum that have been there and done that. So you are sure to get alot of suppore and information here.
It is great that you made the transplant list as that is not an easy task. Do they have you on any type of water pills to help with the fluid retention?
I also have 2 grandchildren. They keep me going too.

Take care......Thoughts and prayers.........
Posted 12/30/2007 4:05 AM (GMT 0)
Hi mailman, Welcome to the forum. I am so sorry that you are having to deal with this disease. My husband is also dealing with cirrhosis. He has swollen legs, stomach and lately has not had any energy at all. He has been complaining about his legs hurting lately.

I just want you to know my thoughts and prayers are with you. If you ever need to talk there is always someone here ready to listen and help if they can.

Take Care.
Posted 12/30/2007 6:18 PM (GMT 0)

For what it's worth, ascites and edema were ongoing problems for me.  I think the docs may have felt it was temporary, as it wasn't until after my liver surgery that I was finally placed on Lasix and Aldactone.  When I recently had the hernia repair (12/14/07) and blew up again, my Lasix and Aldactone were doubled.  I will see the liver surgery P.A. on the 3rd of Jan., and the surgeon on the 14th.  They will probably reduce the dosage again, but it does seem that I need to be on some form of "water pill" as an ongoing part of my treatment regimen.

Connie

Posted 12/30/2007 9:58 PM (GMT 0)
Thanks pinkgrandma, butterfly, and connie for answering my post. I'm new to chat rooms and message boards so please be patient with me. I am currently taking Lasix 40mg and Amiloride 10mg  once a day. They substituted Aldactone with Amiloride because of swelling and tenderness in the breast area. Mamo and ultrasound were Neg. Hurt so much I could not even hug my wife. Tomorrow I will have a CT scan of chest and on the 16th of Jan. will get 3 more exception points to bring MELD score to 25. I am going to the University of Pa. liver transplant unit. First diagnosed with hep c in Dec. 2000 Tried peg interferon and ribaviren for 6 months but was non responsive. They tell me I am at esld. I have 2 tumors in excess of 2.5cm and numerous others which have not yet reached 1cm. The cancer so far is confined to the inside of the liver located in both lobes. Pain in legs is now constant and have developed pain in abdomen. Not much energy left by 6PM. Please keep in touch as this does seem to help me express myself to others in the same boat. My Prayers go out to all of you. Thank You so much! Have a HAPPY, HEALTHY, NEW YEAR!  Delivered by the mailman :-)
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