'End-stage' liver disease from Hep C

[lhoward]

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?

[caregiver68]

God bless anyone facing this horrible and painful disease. My Husband is in Hospice care at home with the final stages of Hep C. He is my 3rd Hospice patient in 9 years that I have cared for. I've lost both parents and now my Husband. When chemo does not work, please consider Hospice. My Husband was given 2 years maximum, but his disease is progressing much faster. He was only in remission 6 weeks, then went straight to 20% mortality rate. Now, 4 short months later, he is on 3 kinds of Morphine round the clock. Hep C is one of the most painful diseases I have seen. It affects every aspect of its' victims, physically and mentally. All I can say is, "have patience, but most of all, have faith and pray". Prayer gets me through each day. God bless you and your Father. Keep the faith

[pooh55811]

Welcome to the forum. I am sorry that you are having these medical problems.

This is an old thread. You may want to start a new thread in the cirrhosis of the liver forum and ask any questions there. People may have some answers or information for you in that forum. Or, you could start a new thread in this forum. Just go to the top of the page and click on the orange rectangular box. Then put in a subject title, something like end stage liver disease, and post your questions.

So if you wish, just start a thread in this forum or post in the cirrhosis of the liver forum:

http://www.medhelp.org/forums/Cirrhosis-of-the-Liver/show/1390

[opaw503]

i have a end stage liver disease but i dont have money to buy the medications, now im still working even its very hard for me i live in a country that liver transplantation is very expensive.now im waiting for my time looking to the stars maybe some of them will help me but i know its not gonna happen..maybe even miracles cant save me now..im thinking to make the suffering much less i dont really know what to do..well im young and life is good for me this past years and thats all i can remember thank you for the experience all i can say.

[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

[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

[Alive33]

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

[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....

[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.
.

[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.

[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.

[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

[rozeepozie]

sorry my previous comment was to lostfaith.

[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.

[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.

[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

[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.

[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.

[johnjack111]

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

[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

[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.

[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

[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!!!

[misty101]

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

[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