'End-stage' liver disease from Hep C

My Father has been diagnosed with "end-stage" liver disease from Hep C.  I would like to understand what the descriptor "end-stage" means - what does this tell us about his likely duration and quality of life?

[lauraj593]

A very dear friend of mine has been admitted to ICU with liver failure, kidney failure.

He is 34 years old, is ventilated at the moment, he has varices that they have banded.

I know the prognosis is very poor but is there any chance of survival for him?

Laura

[alagirl]

Sweetie, I can't offer you any information on this one, and I don't know if anyone else who isn't a doctor and doesn't have all of his up to date info will be able to provide you much in the way of an answer.  My thoughts and prayers go out to you both.

[april78]

I read your post, and it sounds so much like my 32 year old husband who is also in ICU right now due to kidney and liver failure.  I may not get back to check this post but I wish you would check and let me know the results.  My prayers go to you and the family.

[Jody515]

My brother was also diagnosed with end stage hepatitis (not C) in April of this past year.  He was told at that time not by his Dr but by the PRN in Dr office that meant he had about a yr.  The Dr was really upset over her telling him this. He goes at least once wkly to have drainage removed from his abdomen.  Is your father on a transplant list.  If so that could save his life. Best of luck

[sapasunka]

I was in ICU in September and was told to get my affairs in order. I am now home, operating under my own steam, cleaning house, cooking meals, etc. The only thing I dont do is drive so my answer to those who have family in ICU is dont give up. As a patient I will say if it wasnt for my husband and  kids I would have given up. Dont let that happen to your loved one.
debbie

[bigpoppa1]

I was on the waiting list for a liver transplant for over 6 years, during which time I almost died from the effects of toxin build up in my body. After 6 years, I was finallly called and told that My name had come up on the waiting list and I was sent to an Oregon hospital. I waited there 3 months before a matching donor became available. Then I got the call from the doctors that they had a match for me and the transplant would take place that same day. 2 months after the transplant I am doing just fine, recovering well. So yes, there is always a chance for survival. If he is not on a waiting list for a transplant, see that he is placed on one, and then just don't give up. Stay strong and have faith.

[IMGregsWife]

My husband is going to be 53 next month.  He was diagnosed with "end-stage" liver disease in 2002, 6 years ago.  Though I have seen his health decline, it has been up and down.  They gave him 3 - 5 years without a transplant, and I immediately got him on the list.  His MELD score has gone from 7 - 10 in the past 4 years, but they don't transplant until 15 - 20, so he is still a ways away.  End stage sounds scary, but remember, God is in control.  You may have many years yet with your dad.  My husband cannot drive, but he does the laundry, dishes and basic house cleaning even today.  It is important to keep on going.  Greg loves to work out with light weights and perform with our band, as his health permits.  He has trouble remembering things, so we write out the words and chords for everything.  He has adapted and functions well.  I'm sure your dad will have some good years yet to share.  God bless you.

[tjwife]

My husband is 61 and was diagnosed with end-stage liver disease. We lost our health insurance last May when my job was discontinued.  He has not been able to work and is still currently waiting to receive diability.  The only insurance company that will even concider him is unaffordable.  I understand that even after a transplant, the medication can cost as much as 5,000.00 a month.  What do you do?

by: TJ's wife

[lostfaith]

I have hep C diagnosed in 1995. has anyone ever heard of this  disease causing maldigestion, malabsorption?  Severe , 40 pound  mysterious  weight loss and inability to gain weight back. Skeletal looking body?
Any help greatly appreciated
ceej

[fretboard]

That's a real shame that so many ppl know of others or they  themselves are going thru such a most difficult time.  I went to see my doctor one time around 6 or 7 years ago and I had to see his on-call.  At the time I was still using and drinking a bit.  Anyways to make a long story short the dipwad doctor told me I was dying.  I really got p-offed at him and I told my doctor when I finally did see him.  At the time my ankles were very swollen and I was sleazy looking.  lol  Nothing much different now except I don't use or drink. lol  Just kidding of course, I look like a complete square now and proud of it.  I wasn't dying and I didn't have cirrohsis like that dipwad said.  My doctor was really p-off at that dipwad doctor and he told me that number one I didn't have cirhosis and number two, he wasn't gonna let me die.  Within a month or so I became toxic and quit using everything, period.  I still don't have cirrohsis, but I do have HepC and need to get tx'ed.  My doctor told me at the time that a person could live for years with as little as 40% of their liver functioning.  It may not be good, but it made me feel better.  If you get a bad GI like I have currently look for another.  Also, here's some information, maybe useful for someone.  One last thing, there are drug companies that will help you with free of lead you in the direction of free tx drugs.  Maybe someone will chime in with that information later.  
God Bless

http://hcvadvocate.org/hepatitis/factsheets_pdf/Final%20Steps.pdf

http://hcvadvocate.org

[Bill54]

From ***@****

I've contracted Hep C iA from being vaccinated by same syringe as others in Air Force during Vietnam era.  Also, by Air Gun vaccination where method of injection passed blood and body fluid from one person to another.  In the year 2000 I found out that I had Hep C, the hard type to beat.  I've had no treatments or anything since finding out, but, my viral count is 14 million at present time, My physician recently told my wife and I, if I didn't seek treatment immediately I would not be alive by next year ?  I've had 2 liver biopsys, both were near normal, and I really don't feel bad now, but really don't know what the effects are to be expected of this disease.  Recently I've develeped memory problems, I can not remember things that have recently happened or I've experienced, but, can recall things from the past ?  At times I feel just alittle nautious, headaches behind the eyes, depressed, and have withdrawn from almost everyone and don't want to do anything or go anywhere.  This was never me !  Could this be the effects of my having hepatitis ?  I fear treatment because of the horror stories that I've read from others on the internet, and I want to wait for the new protease inhibitor coming out in fall of 2009, pills, no shots/ injections at all, and treatment is said to be less toxic and results more favorable in regard to reducing viral load.  Can my viral load of 14 million kill me in a year as my physician told me ?  I don't know what to do, who to believe, or where to turn, can someone help me in providing me with some form of information, maybe something they have experienced themselves while on treatment.  I'm presently 53 turning 54 in November.  Any advice would be appreciated. God bless and good luck to all who have this disease, I wish you well.

Bill

[RiverRandy]

I am a newbie with Hep C 1a stage 3 , I thing you need to see your hematogist (liver Specialist) and start treatment as soon as possible. I will start on treatment Sept 29th and I am very anxious and nervous about the side effects of the medication.  

[IAmTheWalrus]

I will venture an opinion of what end-stage liver disease means. This means Stage 4 or cirrhosis. This is where the tissues of the liver actually begin dying and necrotic. Usually this is considered irreversible. Most patients with ESLD are on, or trying to get on, the transplant list. This is a difficult time and process. The hope is that his turn will come up and a match found before he becomes too sick to transplant.

He should be seeing a hepatologist now. The hepatologist can tell you/him about where he stands with regard to qualification for the transplant list and chances for a match. He can also tell you what other options there may be. Depending on the progression of disease, it may be possible to treat with interferon and ribavirin now, whether or not a transplant is in his future. There are a lot of factors: age, genotype, severity of cirrhosis, other health factors, etc., that affect the outlook.

Good luck and God bless,
Brent

[kickboxingmom]

I noticed you posted on Ihowards thread.You people have some serious questions and I just wanted to say, you may want to OPEN a thread of your own.You'll get alot more responses.People can't see your questions on this thread unless they read Ihowards question.Just wanting you to find answers.Good Luck and ASK !

[dlogarcia]

My 50 yr old sister was diagnosed with ESLD, I was told that her prognosis is not good.  What precautions do I need to take as far a hepatitis is concerned?  She currently lives with my nephew and his family (wife and 3 children).  Is she contagious?  Can they contract anything?   Please help????  

[HCA]

No no one can catch anything.
Suggest you repost your question as a new thread as you are tacked on to an old post from year 2000

[carmen309]

Hi everyone. I have had Hep c for at least 10 years maybe over 30. They are not sure. I'm itchy all the time. I hear it is from the Hep C. Also they want to do a biopsy on me and I'm scared. I know that a lot of people bleed from it. How dangerous is it? I have Hep C type I   Does anyone have any information about biopsies and being itchy from this disease. Thanks  My blood test are still fairly normal also my liver ulrasound shows I have a fatty liver? ......

[Dayzdreamer]

End stage liver disease is when your liver is so damaged it will not repair itself. Some with stage 4 liver diseases may have a chance of stopping the cirrhosis from getting worse but some not. After stage 4 is when they start calling it end stage liver disease. With end stage your liver is decomposed. With stage for some still have a composed liver. Your father should be or get on the liver transplant list.

It is good to get a biopsy if your father can with his condition. I wasn't able to do a biopsy as it may have caused more harm than good from bleeding if they did one. With my symptoms and a CT Scan it is enough to know I am at least 4 but more than likely end stage liver disease due my symptoms and the rough edges of my liver from the scan.  

The main symptoms of end stage are acites (ascites) (fluid retention in the stomach), edema (fluid retention in the legs and ankles). With edema you can press the place that is swollen and your finger prints will stay in the skin for some time like dimples. If your ammonia level is low you may have encephalopathy  (confusion/disease of the brain) if you have this symptom the doctor will put you on lactalose, muscle wasting bad circulation jaundice, portal hyper tension in the esophagus or stomach. As it gets worse more organs like the kidneys will malfunction and he may need kidney dialisis and so on.

You will find no doctor that will give him how much time he has left. They could guess but it isn't accurate. They could guess a year and he may live 5 more. That varies with each endividual. If he substains from alcohol and goes on a appropriate diet he has a better chane of prolonging his life. Again he needs to get on the liver transplant list if he isn't.

I am sorry you have to watch your father go through this. I commend you for being supportive. I will pray for you both.

[MariiMa]

Hello all,
First I would like to say good luck and may god be with all of you through your hard times.
My mother-in-law has HepC and has been fighting this battle with Liver Failure and of in and out of the hospital for a few months now. Recently, we made a trip to see her (she lives in a different city). Her eyes are yellow, she is super skinny, and she has retained a lot of fluids in her lower belly area, but all in all, she looked alot better than I expected and in very good spirit. The doctors said that they had 3 weeks to find her a liver or she would pass (This was almost 2 weeks ago) She is currently the FIRST person in the national waiting list for the transplant. After our visit, things just turned for the worst. Now her Kidneys are starting to fail! Is this a result of the Liver problem??? Does that kind of go together??? They have put her in RCU in the hospital (Respitory Care Unit), but why??? I dont understand? They called my husband last night and told him that he MUST take a trip out there today bc at 3pm they are going to have a meeting with the doctor and he needed to be there, but we were just there last weekend. Could the reason that it is so urgent be because they believe she is about to pass?? Has anyone gone through this or does this sound familiar to anyone???

God Bless.....  

[keepontruckin]

Hi and God Bless everyone! My friend has been told he has 3mths or less to go. He has had 2 episodes of encepolopathy (bleeding brain strokes), large fluid filled stomach (they drained it once), oedema (swelling) of the feet and legs. He also is in good spirits and seems to be doing ok. He is thin but eats well. It is hard to believe this might be the end for him most of the time. However, his sister went through this a few years ago and had her stomach drained 4 times in two week intervals. She died shortly after that. She was on a transplant list and was called but told she could not afford the meds. I too am confused by all the different info on end stage. Some say they can live for years, others say no.

[MariiMa]

Hello,
I had posted not to long ago about my mother-in-law. By the grace of god, they performed her transplant 1 day after they called my husband in for the meeting. Today she is already at home, walking, and she looks great.
I just wanted to let everyone know to keep praying, and to keep their heads up.... miracles happen!!! God bless all, and I hope everything works out for the best!

[newfie123]

Bill my name is Wayne. I've was diagnosed with Hep C 10 yrs ago. I was asked about  starting the treatment and when I asked about the side effects I was told the injections to your liver once a week could cause diabetes, blindness, kidney failure, no appetite as well as cancer. So I agree with you about waiting for the pill form of treatment. If you want to write back that's great. Good luck and god bless you. Stay strong.

[peachygirly]

my mom was so sick for the last couple of months and we couldnt' figure out why. (by the way we didn't know if she was serious or not because she is an addict always looking for the next fix may it be alchohol, pain killers, ect) but anyways we finally found out she has hep c. she is in the hosptial for about the 5th time in a few months and not doing well. her face is so swollen. she is out of it. i think from pain medication and they say this may be the last fight she has in her. she hasn't had a biopsy done we are tryin to get her on ssi but slow in the making. she also has COPD (emphysyma from smoking). i am so sad tonight and i was just looking at the internet trying to find out more info on hep c. i am 25 and don't want to lose my mom yet. i was lying bed thinking what would i tell my 5 year old who thinks the world of her grandma. she wasn't always a good mom to me, but she sure has made up by being a great grandma to my kids. i love her and and i hope all you who feel this pain find some kind of peace because i can't find it.

[Kristie43]

My mother has been diagnosis with end stage liver disease she has been on hospice since May 09 she lives with me, she is on lactalose and lasix, sometimes it works sometimes she stays in a coma state for a couple of days, other days she thinks it is 1999, no one will tell me exactly what to expect all that hospice says is she will go into a coma and go peacefully, she turned down a liver transplant because of her age she is 74 and says she has lived her life, hospice acts like they get mad at me because I call if she is no responsive they tell me she is getting some much needed rest they don't tell me anything else but continue her meds I want to know what to expect not she is resting.
Kristie

[Elsone]

Sept. 17, 2009  I have been infected with the virus for at least 35 years. I found out I was in Stage 4 when the results came back from donating blood through the blood bank. There were no obvious symptoms or signs physically or mentally with the exception of some on going depression and all of my joints were very tender and ached constantly. Finally in 2003 I started seeing an MD who referred me to a specialist, and more specialists, etc..etc... Now at the age of 57 yr old male, my days are slow and very painful. My free time is spent trying new diets, praying for a new life altering drug to at least slow the process of Hep C. I am finding that not all people will experience the same symptoms in any particular order. Only the end result. I have had some positive results with a persistent diet of greens, veggies, fruit and natural juices and lots of water. My ALT & AST levels have dropped tremendously and getting some other normal readings on my Lab results as well. Just watch your platelets. Mine dropped to 20,000 but brought them back up to 46,000 with some extras added, like protein in my diet. A good healthy diet does help along with a positive attitude and pamper your body. Treat yourself to a massage or two, saunas help eliminate toxins from your body. There is a lot of information out there on how to care for your ailing body-that actually works. I could talk forever, so signing off for now. Good luck to all! And never give up unless you're just plain tired or the body is saying it's time. I am one of these people who believes we have the power to heal ourselves to a certain degree. Whether it be through prayer, diet, friendship from others, believing in yourself and your Doctor, whatever it takes to lessen the stress of everyday life and dealing with your disease then go for it!
Take care, Elsone

[kmr252002]

hi my husband is in the ending stage of cirrhosis with hep he has been told he has the ending stage. im not sure what to expect he stay more confused most of the day i was just wondering if there is someone out there that maybe can help me see what is to come and a time line the dr told me i need to get prepared but how can i? god bless u all and i hope things work out
                          kathy

[smilehopelive]

Hello.

I wanted to ask if the person who's post this was' father is Okay.
Its not for a family member to have it and I hope that everything turns out good for everyone.
It's been 10 years since the person who wrote this post wrote on this. I wonder what happened.
Sometimes things happen and we don't even know.

Good Luck to everyone and Please Pray.

[misty101]

my husband has hep c and now cirhosis he is currently waiting to go on the transplant list. his meld is 10 he has all the symptoms how ever now he has a lg amount rectal bleeding they have done a colonoscopy that should nothing how ever the bleeding is getting worse we have told the dr with no results. and my husband has said when the bleeding happens he gets alot of pain in his abd is this a symptom of the disease

[misty101]

god bless all and you all are in my prays dont give up hope we are not

[kitcat597]

Hello!
My mother has Hep C, and has been diagnosed with end stage liver disease.  She has been in and out of the hospital for the past 8 months.  In this last hospital visit, the doctors are saying that she now has kidney failure.  They performed dialisis 5 out of the last 6 days.  Unfortunately, her kidneys do not seem to be responding.  
We have put her in hospice, and I am having second thoughts.  She was experiencing some confusion even with the dialisis, however once we mentioned hospice to her, it seems that her mental state has declined even further.  She is now hallucinating, and refuses to sleep, eat or drink anything.  In the meantime, I am wondering if I have made the right decision.  She never completed the steps to be put on the transplant list, however the hospital offered to have an evaluation done.  We declined the evaluation because the doctors made it seem that it would be useless since she has had internal bleeding, her platelette count is low, and the kidneys are now not functioning.  I dont know what to do.  Should i take her out of hospice, and her her evaluated?  Is it too late to save my mother?  I dont want to give up on her, because she would never give up on me...however I just dont know what kind of quality of life she's have if she were to have ongoing dialisis, and have to endure a liver transplant.  This is hearwrenching, and I dont want to live the rest of my life feeling that I made the wrong decision.  Please help!!!

[Bill1954]

Hi there,

So sorry to hear of your mother’s plight. I don’t have answers for you myself; it does seem that an evaluation by a transplant center would be a good idea though. There are other members here that are transplant recipients, and might be more knowledgeable than I on this subject. Please go to the top of the page, and start a new thread by clicking on the green ‘post a question’ button. This topic was originally started 10 years ago; your thoughts will be lost here.

My best to you and your family—

Bill

[onepebble]

I have read these posts and see my husband's story retold over and over. He has probably had his Hep C disease 35 years now, but we have only known about it for the last 12 due to routine bloodwork for a physical. I can see that he is coming to his end. His abdomen is full of fluid, his feet are swollen. He sleeps whenever he stops moving. He tells me everyday that he is going to change the belt in the car that was changed three days ago. My heart is broken for him, for our ten-year-old daughter, and all of you out there with lives damaged or destroyed by this disgusting disease.

[bransonangel85]

I came to this site looking for a clear answer about how long my mother has left, but I guess no one really knows. My mother has had hep. C for 35 years and is in end stage liver failure. She is currently awaiting a liver transplant. Her MELD scores are between 29 and 32, fluctuating. She did get a liver the day after she was put on the list, but unfortunatly it was too big for her small body. She gets her abdomen drained weekly and takes lactulase and lasix. Prayers to everyone

[johnjack111]

Reading about the platelet levels. Mine were at 32 and are now at 41
                                                                                 John 50 years

[delnel24]

My dad is dying from this now.  ESLD.  We never even knew he had Hep C.  He hid it from us.  I just found out today after he got the news from the doctor.

I feel so incomplete, lost, sad and devastated.

[Anne1717]

Hi - I am bumping you up to the top so hopefully someone with more knowledge than I can respond to you.  So sorry to hear your news and my best ot you and your family.

[Bill1954]

Hi there,

Welcome to the discussion group; I’m sorry to hear of your father’s plight. I assume he’s been referred to a liver specialist and perhaps been evaluated by a transplant center? If so, what was the outcome of the evaluation? How old is your father? If you like, go to the top of the page, and click on the ‘post a question’ button; this will open a new page and let you start your own discussion in here.

There are a number of other patients that have had similar experiences; perhaps they can share their wisdom with you. Again, so sorry your family is having to deal with this. Take good care,

--Bill

[greensmoothie]

What is your take on eating greens such as spinach, kayle, mustard greens? I have end stage liver disease and was told by a friend that is also diagnosed that he could not eat greens, ever.

[rozeepozie]

my father is also suffering from these same symptoms. We've gone through several different blood testing, X-rays, Hematologists, GI doctors,etc and none can tell us anything except to accept this is how he's gonna be. If you have heard anything different please comment back any advice would be greatly appreciated.

[rozeepozie]

sorry my previous comment was to lostfaith.

[Anne1717]

Hi - You have posted on an old thread and may not be noticed.  If you like, go to the top of the page, and click on the ‘post a question’ button; this will open a new page and let you start your own discussion in here.
Good luck

[tonza]

I was told in 2003 i had 2 to 5 years to live from end stage hep-c. My liver was damaged on a scale of 0 to 4 at-- 3 1/2 destroyed. I have so many side affects there are to many to mention. I eat right and took care of myself as best as i could but i feel the end is close. If my liver dosn't give out first my heart or blood vessels will. I have no illusion of a transplant because i am 60 years old and i doubt a healthy liver would be wasted on little old me! All i can say is i wouldn't ask any of my siblings to donate a portion of thiers as it would just be to dangerous. Don't kid yourself, cure it or forget it. Today they have a new drug that shows promiss but i will not take it as the same interfiron and ribaveron is still part of the cure. It almost killed me last time and i wont do it again. This is sad , i know, but i'm trying to be realistic. I'd rather see a liver go to a young person with a life ahead of them than to take one and die of natural causes a few years later. Just my oppinion.

[greensmoothie]

I new to this site. But been reading all your stories. You all are so brave and live with much Faith for healing. I love that.
I am at ESLD with hep c. I have had hep c for  more than 30yrs not knowing it.I had blood transfusions 2 seperate times way back in yrs when they did not know anything about hep c. So all these yrs I have had this with No symptoms at all until 2 yrs ago.
I have tried 2 times Rebavirian and Interferron, along with injections to keep my red/white cell count up enough to take it. My body still rejected efforts.
Dr took me off all meds for 6 months to give my body time to get back to more Normal, then I will try something new. Side effects are suppose to be worse than what I took before. My blood acct. went down to 5 and I had to get infusions. So in a couple of months I am going back on some new med that is suppose to come out. Not looking for ward to it, but I am trying. I am on a Transplant list already so if and when time comes, I will have all paper work and dr appts kept.
God is Good and He will never leave us. Stay encouraged my friends.

[Nancylee777]

My husband just died on March 11, 2011. He had Hep. C and so do I. We have five children. He was so healthy for so many years the at the end of February, he started feeling bad. I made him go to the hospital a week later. They told me he had end stage liver disease. His skin became so yellow. It all happened so fast.Hepatitis C is a sneaky disease that creeps up on you. You can be fine for years then all of a sudden, by the time you feel sick, it's too late. I am currently in the third stage and I am young with 5 children who will be losing their Mother before a year is up. If anyone gets diagnosed early, get help. I wouldn't want anyone to end up like us. Thank you.
.

[cadMT]

It is with a very heavy heart that I submit this post.  On August 6, 2011, my beloved brother who was 44 years of age passed away from end-stage liver disease.  I am compelled to share no matter what the docs state during this illness, never lose hope.  I truly believe my family gave in to this disease and hastened his death by putting him in hospice.  Prior to calling hospice, he fell, hit his head and then began to suffer from grand mal seizures.  No rescue was called, but the homicide warriors of hospice were called, and stated to bring him in... the end is near.  Since when are they GOD.  He arrived at the inpatient facility at 1 p.m. and was dead by 4:35 to be exact.  

I have completely detached from my family for this grave decision regarding the sanctity of his life, and their self-will run riot which lead to his demise.

I am now an advocate for Hospice Alliance and American League for Life.  

There is only ONE author of LIFE AND DEATH and that one is JESUS CHRIST.  

Never lose hope for your loved ones....

[Alive33]

My sympathies and sadness to all those affected by this disease.
God Bless you Amen.

[ziffy1]

Hi I've read all this post and I'm very sorry ,I just hope that some doctors can't predict the life expectancy.Personally I believe that  the faith of  persons can make the difference,sure until a certain point.But it's so important to don't lose it.My prob,, at the confront to all this pain ,became very small.take care all of you

[Nightvixen]

The weight loss, skeletal look, and loosing muscle, unfortunately are a part of the Hep C...at least for me it is. I was told by U  C  Anschultz in Colorado that I now have Muscle Wasting Disease. I was diagnosed in 1995 but have had it all my life. The last few years the disease is definitely progressing. Ask your Doctors about your concerns. I was looking up Muscle Wasting Disease when I came across your post. What I found is it is called Catabolic Wasting and normally goes with tumors, which I have.  Keep your chin up and never give up your  faith in God. With God's help we can get through anything...not saying it will be a easy, but whoever said life was fair and easy?! LOL!!!
Nightvixen