Aa
Aa
A
A
A
Close
Avatar universal

stage 4 liver disease

Hello out there! I’m 51 and was diagnosed with Hepatitis C just a few weeks ago. I had a biopsy last week. Today the doctor told me it is stage four liver disease. This is my first post so I would like to know from others what works and what is available to me. Again many thanks and hope to hear from you all. Best wishes-Willy
45 Responses
Sort by: Helpful Oldest Newest
683231 tn?1467323017
Hi Welcome

You have added a comment to a post from 2012. The best way to get your question noticed and get more answers is to go to the top right of the page and click om the green "Post a Question" link and start your own thread.

Just a couple of comments for you if you have Fibrosis level F4 that is indeed cirrhosis which by definition is called "end stage liver disease" this does not mean you are at the end of life only that this is the last stage of liver disease called cirrhosis.

I was diagnosed with cirrhosis in Jan 2008 and still work a full time job. I am 56.

Cirrhosis is not the end.

Once you have enough liver damage to have cirrhosis there are further break downs of compensated and decompensated.

Compensated is  when although your liver is dammaged it can still perform its important functions and you may have little to no symptoms or possibly tired a lot.

Decompensated is when your liver is so badly damaged it can no longer perform it's vital functions and you are in the biginning stages of liver failure. When this happens the first thing you may notice is swelling in your lower legs (I have had that since 2010) later you couild have fluid in your stomach either small amounts or very large amounts with a pregnant looking stomach. You may also develop over time enlarged bllod vessles in your throat caled esophageal varicies which if too large will require doctors intervention.

Also once decompensated you would be evaluated for liver transplant.

Bu likely you are not there yet so don't worry about that stuff for now.

The good news is there are new treatments approved in th elast year that are much better tolerated than the old treatments you may hear about. Treatment could be as simple as 1 pill a day in your case with cirrhosis for 24 weeks. The new meds are also much more effective than the old treatments.

Treatments are different for different genotypes of hepatitis c. I am genotype 1a and I am treating with Harvoni for 24 weeks I have just finished week 12 and feel more or less the same as when I am not taking medication.

Take a big breath and let it out slowly we have all been where you are now.

So post away with new questions and we will do our best to help!

Lynn
Helpful - 0
Avatar universal
i'm 59 and in Dec/14 was diagnosed with hepc and cirrosis of the liver.  Shocking to say the least.  Going to see hepitolist in March/15.  Stage 4 liver failure, is that the same as end stage liver failure?  I get confused about all the info right now.
Helpful - 0
1815939 tn?1377991799
I am sorry but I do not know the answer to your question.

However, I wanted to tell you that you have posted in a very old thread. It would be better if you start a new thread. More people will see it and respond.

To start a new thread, go to the top of the page, left side, orange rectangle where it says post a question. Click on that box. Then insert a subject title and post your question. Hopefully more people will see it and respond.

You can also go to the Cirrhosis forum and post your question there. It is okay to post in both forums.

Link to Cirrhosis forum:

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

I wish you and your father the very best.
Helpful - 0
Avatar universal
My father is a patient of liver desease. He has varics and enlarged spleen. In a fibro Scan it has been found that his liver has become stiff at 16 point. Hepatitis B & C has not been found in diagnosis. Probably it is a case of NASH. However, the liver size has been found normal. He is also in fine health without any complain about pain.

What can be the best treatment for him. We want to avoid Liver Transplant since that is too expensive for us to bear.

I will be obliged if some helpful guidence is got gtom you.

Thanking,

Aminul Hoque

Bangladesh
Helpful - 0
Avatar universal
so is stage 4 close to the end 3 times ive gone thru treatment and the last one insevick was added i am 1-a geno i have 3wks to wait to get labs and ill see if third times a charm, the incevick with the other two drugs was the hardest to handle for me.hep-c for over 20 yrs is to blame,became tired and weak,tjj61, ps just would like to know whats after stage 4.end stage,please the truth is all i seek thank you and god bless
Helpful - 0
Avatar universal
Hi. I read your comments and right now i'm so confused and worried because my husband just got the results back from his liver biopsy which were; stage 4 of cirrhosis!Where do we go from here?? He's60 years old and is feeling good, his coloring is good also, I don't understand how  a person could be so ill and not look ill!!He still looks good!Anyway I've been reading the comments and you seem to be very smart about the subject of Hep C and cirrhosis, PLEASE help us I don't Know what to do first!! Thank You , Joann54
Helpful - 0
Avatar universal
really need  to know more about stage 4 and hep c dont know all the detils bt my mother was digonas as hep c and stage 4 of liver trouble dont know if she has cirrhoius or not, her liver enzimers where 19,000 just a month ago so i really need help on what is going on with my mom any help will be great and good luck and god bless all of u in this time of need
Helpful - 0
Avatar universal
LOL! Thanks for the info on the song! I'll have to get it!
I'm going to get a record of all tests and response to questions I ask my doctor.
I am going to post it all! This was it will help others and hopefully I will get feedback by people that know to insure I am asking the right questions. HectorSF has been real helpful with things I should ask the doctor and demand from the University study if I take it.
I’m not going to do a study if I don’t feel it will be my best chance to rid my body of the HEP C.
I really wish we had doctors more involved in this site on Hep C. It really is hard to go through all this information without really knowing what works and who it works for.
Hope you are doing well! Thanks again-Willy 
Helpful - 0
517201 tn?1400906700
Thanks meNtoby! Wilko1956 plays the drums and I would like to see him get back in to jamming again. You will be sure to hear about our experiences with medicines and the study. The doctor explained that the study would kill to have Wilko1956 because he's never been treated i.e. a clean slate. I admit I'm still wrapping my head around it because you hear a new pill being advertised on tv every day but then a class action lawsuit five years later. I myself took depo provera and that was a big mistake. Still, Wilko1956 wants to do it and it's worth a try. The good news his liver can't get any worse as explained by the doctor so I'm hoping the betting the only way now is up! Thanks meNtoby!
Helpful - 0
Avatar universal
I think the title is "That's the way the world goes round"  Since I have to use a post anyway, here is some of it for you...everyone else, fast forward.

Some of it's too odd for here ;-) but fave vs. goes...

"I was sittin' in the bathtub countin' my toes, when the radiator broke, the water all froze, I got stuck in the ice without any clothes, naked as the eyes of a clown..

"I was cryin' ice cubes, hopin' I'd croak, when the sun-came-thru-the-window, the ice all broke, I stood up and laughed, thought it was a joke, tha's the way that the world goes round.

(chorus)
"That's the way that the world goes round, yer UP one day, the next your DOWN, it's a half-a-inch a water, ya think yer gonna drown, tha's the way that the world goes round."

I sang it for you in hillbilly too!  I've played guitar for many years.
A GREAT OUTLET I MIGHT ADD.

I like "Whistle and Fish" by JPrine as well.  ;-)   Won't bore y'all further with my singin'

To: luvsWilko, I will be interested in hearing more from you guys on the new drugs and
your experiences with this disease.  You make a great team, and thanks for your kind words.  I'm cheering from the sidelines for now..
sign me: "I'm Cathy and I have HCV antibodies"  
Helpful - 0
517201 tn?1400906700
To Wilko1956-Oh Lord here we go with asking what song again it will be blasting on every radio in the house. Btw Wilko1956, you left the stereo on maximum the other day and I almost soiled myself when I turned the ignition. You guys please don't encourage this, don't tell him don't tell him (just kidding!) That's the Wilko1956 I'm used to!

To meNtoby-you are absolutely right: true friends are hopeful and the party friends don't care. We've weeded out the haters for quite some time now and it looks like not a minute too soon. It is very funny but personally I stopped having bad luck when they left and I couldn't be happier with my life.

I'm beginning to see a new light on these treatments after telling Wilko1956 I don't want him being a guinea pig to some lab. But Wilko1956 brings up a good point: how do you ensure they give you the actual drug and not the placebo? I'm jotting down all these questions and bringing them with us to the doctor. I really appreciate everyone's help as we embark on treating this blood borne condition. It looks to me like in order for it to not kill you, one has to be broke with the high cost of medicine. However, I will settle for the latter since how can you put a price on life?
Helpful - 0
Avatar universal
Hang in there girl. We got your back. Hope is really all we have. I didn't know there is a WORLD HEP DAY?!? Sorry to hear about your mom. Even if it is 8 years, it really is like it was yesterday. You never stop missing them!  I'm so lucky to still have mine. By the way, What John Prine song are you talking about? Best wishes, -Willy :)
Helpful - 0
Avatar universal
You're something!  Good to hear from you, all that love got me going....you guys both
hang in.
Helpful - 0
Avatar universal
I'm actually living the lost weekend to a small degree...want to go somewhere, but where.
In fact, I dont' have too much optimism, based on all the things I've been thru, and emergency rooms telling me prev. surgeries is why I was having ab pain and throwing up but only occasionally thru nineties, till I quit going, and wasting money, and time.

The true friends are hopeful, the party friends don't care--haven't partied enough with them enough lately.  Family is large, but dysfunctional.  Faith is very strong, but I miss my mom, gone now 8 years, and my best friend.  I found out the day after World Hep Day. Mom's birthday is Monday.  

Up one minute, the next your down.  It's a half-a-inch a water and ya think you're gonna drown.....John Prine song.  
Helpful - 0
Avatar universal
Thanks for all the info you sent me!
Helpful - 0
Avatar universal
I’m going to get busy with the weight issue. But I’m going to do it on my schedule, early in the day, not late at night.  Going
To the gym at night once in a while is okay but I have a big, big  problem sleeping so I really want to get my routine set up for during the day so I can slowly set my body up to fall asleep at night.
I also need to improve my diet.
My doctor told me I’m a prime candidate for treatment under a new study.
I think it may be this one mentioned in this link.
http://www.medicalnewstoday.com/articles/105495.php
He, the doctor, told me I am known as HEPATITIS C NAIVE. This means I never have received treatment for HEP C. Still even if the study is free and at the University of Miami I want to make sure of what I’ll be getting, the risks, the side effects and projected percentages of positive results.
I ALSO WANT TO GET THE DRUG , NOT A PLACEBO!
Still I have hope.
Again thank you!
Yes, I agree with you and HectorSF! If the new HEP C drug is proven to be a winner, any amount of money socked away in stock for a few years will defer the costs one has to spend on their own treatment.
I will post all my treatment options and treatment results in hope it will help inform others.
I REALLY THINK WE ALL NEED TO TELL THE ONES WE LOVE THE RISKS THEY HAVE BY DRINKING, DRUGGING, TATTOOS, and for the PEOPLE IN THE MEDICAL FIELD THEY NEED TO BECAREFUL AND REPORT UNSANITARY CONDITIONS IN CLINICS AND HOSPITALS
,
Helpful - 0
Avatar universal
Hello! Thanks for the support. I'm still trying to understand all the jargon. I'm going to research it all and print it up to add to my questions with the doctor.
I’m also going to request all copies and make a file and a scanned computer back up of all tests, visits, payments, etc.
I’m going to get busy with the weight issue. But I’m going to do it on my schedule. I would rather go to the gym early in the day than at night. Going at night once in a while is okay but I have a problem sleeping so I really want to get my routine set up for during the day.
My doctor told me I’m a prime candidate for treatment under a new study.
I think it may be this one mentioned in this link.
http://www.medicalnewstoday.com/articles/105495.php
He, the doctor, told me I am known as HEPATITIS C NAIVE. This means I never have received treatment for HEP C. Still even if the study is free and at the University of Miami I want to make sure of what I’ll be getting, the risks, the side effects and projected percentages of positive results.
I ALSO WANT TO GET THE DRUG , NOT A PLACEBO!
Still I have hope.
Again thank you!
Helpful - 0
Avatar universal
Thanks baby, I'm touched! :)
Helpful - 0
517201 tn?1400906700
Hi everyone! I am Wilko1956's girlfriend of ten wonderful years and I am devastated about this diagnosis. All blood work that Wilko did came back as elevated liver enzymes and thus he was not able to donate blood. Doctors dismissed any talk of hep c but here we are. Speaking positive things in to existence, Wilko has always been active, alert, and more of a social butterfly than me in his 51 years and I'm 27. It has always been me keeping up with him so don't let his age fool you! For about a year now I noticed when Wilko1956 came back from trips he was fatigued and his whole demeanor changed so he went to my university's clinic for blood work. Later they referred him for a colonoscopy and biopsy. I was aghast when during our last trip to the market he asked to sit down while I was checking out. That's not him.

I am accompanying Wilko1956 to his doctor in a couple of weeks and I assure you I will be prepared with questions, printouts and types of treatments to get a regiment underway. I need to know how to proceed. My concern is with stage 4 liver plus hep c, is this where you make final plans or is there still hope to live a normal life, within reason? I gather Wilko1956 will need to be monitored indefinitely but is this debilitating?

I've also heard of stage 4 referred to as end stage liver, but the doctor never mentioned end stage, only stage 4 as in the worst shape of the liver can be. Is stage 4 the end stage or simply the degree of damage where you can treat and move on? As I said the doctor never mentioned end stage of anything, just that there was significant scarring and fibers. Obviously we are hit hard and are digesting it all for the moment. I will probably think of more later but all I can say is I love you Wilko1956 and don't forget that you've always been the comeback kid! We're going to be alright!  
Helpful - 0
92903 tn?1309904711
I thought I would chime in here. I treated Hep C with 'Mild Cirrhosis' - including low platelets of 115 or so. I certainly developed low blood counts on treatment, but managed quite well, and acheived SVR.

I was a geno type 3a, which has a starting probability of 80% or so. A top-flight hepatologist gave me a starting probability of 60%, "If you take every pill". Based on that we can infer that his opinion is that early cirrhosis negatively impacts your odds by 25-30%.

I believe HCC incidence to be 5% per year - so that can become a significant number when viewed over a long period.  

Also - as someone noted above, your early days on treatment will be a good indicator of your chances of SVR.

Lastly - BMI is not an insignificant factor in the success of treatment. Dropping some weight now would be a good thing. I understand that it's not easy.

Good luck to you.
Helpful - 0
87972 tn?1322661239

Hmmm… this Swedish study from 2006 paints a slightly different picture regarding HCC rates in cirrhotic patients:

http://www.hivandhepatitis.com/2006icr/ddw/docs/063306_a.html

“1016 patients were diagnosed with liver cirrhosis during the study period; 69% were men and the mean age was 60 years.
Alcoholic liver disease was the most common cause of cirrhosis (45%), followed by hepatitis C (10%) and concurrent alcoholic liver disease plus hepatitis C (11%)
19% of liver cirrhosis cases were due to other causes, and 16% were cryptogenic (of unknown etiology).
During a median follow-up period of 19 months (range 0-118), 86 cirrhotic patients overall (8.5%) developed HCC.
HCC occurred in 27 out of 452 patients (6%) with alcoholic liver disease, 17 out of 102 (17%) with hepatitis C, 16 out of 115 (14%) with both, and 26 out of 347 other patients (7%).


Bill
Helpful - 0
Avatar universal
YOU ROCK!
Helpful - 0
87972 tn?1322661239
Pardon me; the incidence of primary liver cancer seems to be about 5% in cirrhotic patients.

Bill

Helpful - 0
87972 tn?1322661239
1) The HCV genotype will be determined by blood test; if you’ve already had a biopsy, the doctor most likely has already ordered a genotype test. Ask him for the results, and consider starting a file to keep all your records in.

2) Optimally, you should achieve and maintain a healthy body weight consistent with guidelines provided by the American Heart Association or the American Diabetes Association (BMI <25). There is a growing body of evidence that obesity, as well as insulin resistance reduce HCV treatment response.

3)
a) Yes, a diagnosis of cirrhosis does put you at in increased risk for HCC (Hepatocellular Carcinoma), or primary liver cancer. The rate of increase is about 5%, however.

b) Treatment response is dependent on many factors, the primary one is Genotype. Statistically, Genotype 1 patients are successful about 45% of the time, genotype 2 approx. 80%, and genotype 3 70%.

4) If you “get rid” of the virus with treatment, you will likely halt any further damage to your liver, assuming that your cirrhosis is currently compensated. Also, assuming that you have no other co-morbidities such as fatty liver, etc. Getting rid of the virus is termed SVR (Sustained Viral Response).

5) The best thing you can do for your health right now is to achieve SVR. Again, depending on the stage of your cirrhosis; you might be able to halt further damage, and in some cases, a modest reversal of damage isn’t unheard of.

6) Unless you achieve SVR prior to transplant, the virus will universally return to the new liver. However, some patients are able to achieve SVR post transplant. We have a member here that has one that, along with others.

“What am I missing”? If you haven’t already, take a look at the following site:

http://janis7hepc.com/

Excellent site to begin your education; just click on any item of interest in the blue box. This will answer most of your immediate questions.

Best of luck to you going forward, and let us know how things proceed—

Bill
Helpful - 0
2
Have an Answer?

You are reading content posted in the Hepatitis C Community

Top Hepatitis Answerers
317787 tn?1473358451
DC
683231 tn?1467323017
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Answer a few simple questions about your Hep C treatment journey.

Those who qualify may receive up to $100 for their time.
Explore More In Our Hep C Learning Center
image description
Learn about this treatable virus.
image description
Getting tested for this viral infection.
image description
3 key steps to getting on treatment.
image description
4 steps to getting on therapy.
image description
What you need to know about Hep C drugs.
image description
How the drugs might affect you.
image description
These tips may up your chances of a cure.
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.