stage 4 Cirrhosis of the liver w/ hep c

[deejay1024]

I have Hep C/ with stage 4 cirrhosis, and geno type 1.  I went thru a years worth of treatment of peg-intron shots, to no avail.  My question is: what is stage 4 of cirrhosis and how serious is it.  I only go to the Liver transplant clinic on yearly basis, and am considering stopping those appointments. I don't feel bad and I don't feel like this thing is controlling my life.  I would just like to know how  many stages of cirrhosis are there and how far along is stage 4?   I am tired of giving blood for them to look at and they say there is no change.  can you tell me about stage 4 of cirrhosis. I am 55 years old and I am ready to leave this world anytime the Good Lord thinks I should go, should I continue to torture myself with this liver clinic?

[wed1942]

Wow, don't give up. I'm also 55, Genotype 1 and between a stage 3-4. I just found out in Nov and haven't started treatment yet but will probably be talking to the doc about it next week. I also have no symptoms. I do have four kids though and am definitely NOT ready to "leave this world" so will do what the doc says for now. Are you just down in the dumps? Did your VL start to come down at one point because from what I have been told, if it's not down by the 12th week they stop the treatment. How come you go to a liver transplant clinic already? I'm so new at this that I don't have any of those answers for you but I'm trying to learn too. Keep your chin up.

[gauf]

Stage 4 is near the end of the line. You should find out the grade from your doctor. You sound like you are still compensated which is good, but you should consider another round of tox. Why did you fail tox? Were you a responder? These questions are important. good luck.

[nygirl7]

Well it's pretty simple - your liver is in serious serious trouble and if you don't continue on with the treatment plan that your doctors have laid out for you - you might as well start working on where your death benefits will go and making sure your will is in order and things like that.

That's NOT to say there are not options that can provide you a long healthy life but you have to be willing to do the work or you won't be here to enjoy them.  

My liver was at stage 3 wheN i discovered I was in trouble and there is a deal of wiggle room between 3 and 4.  I had NO symptoms at all but I realized that if you look at it in fourths my liver was a full 3/4 of the way gone.  GONE, DEAD.

I started treatment for hepC and treated for 72 weeks.  My liver quality and my life have improved if not for the simple fact that now I will have a life to live. I still have major problems and children with problems...that is just life.  But thankfully I will be here to work on those things.  If my treatment had failed I would have moved on to the next drug and the next. If they had failed I would have had to transplant. I would have.

STAGE 3 AND 4 MEAN YOU HAVE NO TIME TO LOSE.  GO TO THOSE APPOINTMENTS AND WORK ON THIS BEFORE YOU CANNOT.

A great friend of mine has been transplanted successfully and enjoys a wonderful life.
Another friend was transplanted but continued to drink and get high and did not do treatment for hepC and he died last year.

When you look at it that way - there is no question what you need to do.

Good luck. At stage 3 or 4 you do NOT have time to wait. Please take care of everything right now.

[wed1942]

I'm definitely going for the treatment. No question about it. And I'll put up with all the symtoms to be able to be around longer. Want to have grandchildren that I can tell all the stories about their parents to. Fortunately I have gotten all of my kids through college and they are on their own now so that is a big worry I don't have. Time to concentrate on me and getting better.

[philly934]

I am also geno 1b, stage 4 cirrhosis and was on 24 wks but taken off because my vl went back up so therefore, I am a non-responder.  That was in October 07 and I have an appt. with the dr on March 7th.  I get kind of squeamish because I feel they should be monitoring me a little more closely.  I have felt relatively good, a lot of fatigue but I just went through a divorce and so my stress levels sky-rocketed.  I am on my own now so I can begin to relax and get some rest.

I guess I am still pretty much in the dark regarding the stages of cirrhosis, I do know that stage 4 in the last stage and needs to be monitored very closely.  I do have a well compensated liver and the dr wants me to have an ultrasound every 6 months.

This disease won't go away but there are ways to make our lives more fulfilling and happy.

Have a great evening,

Phillipa

[somuchmore2]

My status is very similar to yours. I would, and I do, continue to see the medical experts.  One of the people who I know that has HepC and got it like me back in 1973/74. After receiving a transplant (4 years ago) and he tells me that he feels like a 35 year old.  There is also the hope that a treatment will be approved for you, me and all the other non-responders before it is too late.

The stage 1, 2, 3 or 4 does not mean as much as "how is your liver function with your intake of food, medicine, etc...?" However, there is a list of things to watch for once you are stage 4 like us.

Keep in mind that HepC can take you from feeling OK to very ill very quickly. I nearly died last year and know too many others that have pass from HepC complications.

The Lord is putting you in a place to see the doctors and you should let him and them do their work to help you. Or, at least that is the way I get through this stuff day to day.

[sldb]

You need to pick yourself  make a drs appt. and getsome help.  I too am stage 4 and b/c very depressed when i first found out. I decided i wanted to live and txd 96 wks with pegasys. Believe me there were times when i thought death would be easier but i refused to give in.  iam now svr. I spent yrs not knowing why i as tired all the time and my joints hurt, thought it was due to old age.  My hep didnt even give me time to think about what i wanted to do. Ihad no time to research b/c i was too busy worrying .  1 month after my bx i was on tx and put into ths world of hep c which i was clueless about.

[lor325]

i am a nurse have knowledge of hep and the liver newly diagnosed 1a UR to tx they call it the silent killer at stage 4 there is no time to be ponder over appts. get to one due tx its killing even though you feel ok. just cared for a patient with stage while in end stages,they had the appearnce of a gloworm, the worst ascites u have ever seen, extreme pain. to proud "which is ok we all deal things in different ways" for morphine, believe me it is not something you want to go through if there is tx that could  stop or slow the progression, be an advocate for your self, take control, educate, ask. i still am learning about tx options it can be overwhelming and i went to nursing school

[susan400]

I am just curious from those of you who have had transplants, or know of someone who has....at what stage do they start considering transplants anyway??   Not that I'm anywhere near that yet, I've just got the bridging fibrosis, no cirrhosis yet.  I just want to know what to possibly expect, if I don't eventually be clear of this thing.

Susan

[sldb]

I too am 1a ,  u stated, iam newly dx. 1a ur to tx. have you tried txing or is this what u were told by your doc? what stage are u?  I  am an r.n. and have been one for 27 yrs. I quickly found out that i knew nothing about hepc  after joining this forum. i have taken care of liver pts for 25 yrs in the er setting.  Since joining this forum i have gained much knowledge on the disease process and what these pts are going through, i must say in some respect it has made me a better nurse. If u have any ?s about hep c try going back and reading previous post. post a question, the people in this forum are extremely knowledgeable, they are up-to-date on all the new txs nd are very willing to share  info.  jmjm530, hr, nygirl just to mention a few are the gurus of hep c, i bow down to them. their  post have helped me through some hard times.  thank u all  

[kcmike]

Tomorrow is the 3 year anniversary of my transplant.  I was diagnosed in June 2002 with HCV, geno 1A.  I was symptomatic with ascites and varices.  I did not have a biopsy, but from a sonogram and latter a CT scan the doctors said stage 3.  However, by April of 2003 after a trip to the ER to band my varices I was told I was in ESLD.  TX was ruled out and in September 2004 I began my tp evaluation.  Confusion from the high ammonia levels, fatique, itching and loss of appetite had consumed me.  At this point a tp sounded really good.  I couldn't go on much longer mentally it had taken away all the things in Life that I really enjoyed.  

I have completed tx this last September and am very happy to be alive with the quality of life I have today.  In March I will be 6 months post tx and will see if I have defeated this virus.  Until then I'm going to enjoy everything I do every minute of everyday!  I could use some help with my love life, but that's another thread.

Keep on keeping on!
kcmike

[kcmike]

HI Susan, it's unfortunate that the Vertex trial didn't work out for you.  I don't recall what arm you were in or if you get a chance to roll over.  Because you were in the trial though I'm assuming that you are seeing a gastro/hepatologist at a teaching/research hospital.  If this is the case then your doctor will know when to refer you to the transplant coordinator.  Once this happens you will begin a week of testing and evaluation from 10-12 specialists.  After all the specialists have assembled your case your gastro will present it to the transplant board who will approve you.  This process generally takes about 90 days.  Your only advocate will be your doctor or current specialist recommending you.  I was informed as I am quite sure you are and tried to make really good friends with my gastro/hepatologist to the point that you might say I was sucking-up to him.  Yea call me a brown nose, but I wanted every edge and I worked every angle to get approved the first time presented to the board.  I saw a therapist and my parish priest to let my doc know that my spiritual and mental being was ready for whatever lied ahead.  
kcmike

[kcrandy]

good to see you have not seen you lately. happy  to see you are doing good.  look forward to hearing about your 6 mth test.  i will get my post 3 mth in march 08.

all/ this is why i continue to stay with this group, great advice and thoughts and expierences from all.   : O )

[Alek07]

Hi Deejay, don't give up just yet.

Stage 4- cirrhosis is saying that your liver has become cirrhotic, in other words you have cirrhosis. However, there is a very significant difference between compensated and decompensated cirrhosis. From the information you have given us we don't know which one of those two it is.

Put simplistically, compensated cirrhosis is the early stage of cirrhosis and the end is by no means inevitable. Statistically, 80% of early cirrhotics will be alive in 8 years time. After that time, the odds are drastically reversed and this is approximately the time (very broadly speaking) that decompensation occurs.

Furthermore, using the Child-Pugh score, cirrhosis itself is graded into three stages:
A, B & C
Stage A ("compensated"; not too sick)
Stage B (beginning to decompensate; complications beginning to appear)
Stage C ("decompensated"; end stage)

Doctors use something called a CTP Score, to see what Stage of cirrhosis that a person is in.

The CTP Score is based on FIVE QUESTIONS.
You receive a point value (score) for each of the answers.

Here's how it works:

1. Total Serum Bilirubin
.....if Bilirubin is 3 mg/dl: score 3 points

2. Serum Albumin
.....if Albumin is >3.5 g/dl: score 1 point
.....if Albumin is 2.8 to 3.5 g/dl: score 2 points
.....if Albumin is <2.8 g/dl: score 3 points

3. INR
.....if INR is 2.20: score 3 points

4. Ascites
.....No Ascites: score 1 point
.....Ascites controlled medically: score 2 points
.....Ascites poorly controlled: score 3 points

5. Encephalopathy
.....No Encephalopathy: score 1 point
.....Encephalopathy controlled medically: score 2 points
.....Encephalopathy poorly controlled: score 3 points



   1. Total your score.

      Sum total score gives grades of:
      5 to 6 points = Stage A Cirrhosis
      7 to 9 points = Stage B Cirrhosis
      10 to 15 points = Stage C Cirrhosis

      A person has to be at least Stage B or Stage C, in order to get referred for an "Evaluation" for a chance at the liver transplant waiting list.  (Stage A Cirrhosis is not sick enough to think about a referral for an evaluation).

Hope this helps and good luck
Alex

[kcmike]

Hey Alek, very good response.  I assume that since the US and Austrailia are governed by UNOS that the process is very similiar.  The Meld Score is what elevates you up the list, while bonus points such as encepholapathy, ascites and varices influence the score.  

kcrandy I check in and read the posts quite often, however I usually only jump into the transplant questions.  There are plenty of people here to answer the treatment question with much more expertise.  My 6 month is due March 7 so I'll see you then.

kcmike

[kcmike]

Alex has some very good information posted.  Try this link out it reiterates the medical side of the issue and is much easier to comprehend than the policies and bylaws of UNOS.

http://www.postgradmed.com/issues/2001/03_01/habib.htm

kcmike

[Mr Liver]

"A person has to be at least Stage B or Stage C, in order to get referred for an "Evaluation" for a chance at the liver transplant waiting list.  (Stage A Cirrhosis is not sick enough to think about a referral for an evaluation)."


Actually, a MELD score of 6 is the minimum requirement and someone with a CTP of A can be evaluated. By the way, CTP is not a grading system, it is a prognostic tool. It does not grade cirrhosis, as all 3 classification are made up of cirrhotics. It grades complications from liver disease, their number and severity. The scores reflect the average length of time a patient can be expected to live.

[Mr Liver]

My understanding is that UNOS adopted the MELD system in order to eliminate subjective values that could be manipulated, such as encephalopathy and ascites. MELD,for the most part relies on certain lab values. The finding of HCC is the only medical condition that I know of that can get extra points added to the MELD.

[Mr Liver]

I didn't see your post about tp and tx until now and I wanted to wish you the very best with your upcoming test.

[kcmike]

Hello Mr Liver.  I have seen you here on the forum in the past and with that moniker of yours I trust in your authority.  I agree that the Meld Score was to make placement on the list as objective as possible and it does take time on the list out of the equation.  However, the CTP score is to my understanding a bit subjective in interpretation, isn't it?  Anyway in my case since I was in my younger years an occassional user of recreational drugs most hepatologists have an "attitiude" towards those of us with HCV.   Also prior to evaluation I was required to take the "Michigan Test" ( I think this is what they called it) to determine if I was Alcohol Dependent or an Abuser of Alcohol.  Abuser is a much easier route to evaluation.  For these reasons I "sucked-up" to my doctors to show the mental, spiritual and emotional states were in order in order to pass that evaluation.

One thing I cannot recall is how one reaches status 1A.  I don't recall exactly the UNOS wording, but it deals with the number of days left to survive without a transplant.  
Is this strictly elevated Meld Score?

Oh and unfortunately one must have financial matters arranged and even with insurance this can be difficult.

thank you for the well wishes,
kcmike

[Mr Liver]

I think all of the scoring systems ultimately are trying to determine the same thing,i.e.,the length of time before death is expected without transplantation. I know at the tp center near me they did about 80 OLT's last year and I believe every patient was already in ICU prior to tp with a prognosis of just days to a few weeks if they did not receive a transplant. I've been told that during the last few years handing out beepers has not been necessary at my tp center. Everyone with top eligibility is already there in ICU.

Some day they might allow good Samaritan living donors as they do currently for kidneys. In spite of the excellent survivability rates for living transplant liver donors, it is still major surgery (with a major scar as you know) and the surgery carries many risks including serious post-operative problems. I think the day may be coming though, as I've seen my tp center relax the requirements somewhat on who may be a living donor. Sorry for rambling off the subject. Good point about finances. There are some resources available, and those on the list should definitely see what is and what isn't covered per ins, now and in the future.

regards,
Mr Liver

[thepreacher]

Hi, I'm still new to this forum. And I'm not even sure I've figured out how to do this right.    I've been looking for guidance in regards to my husband.
This MELD scope thing drives me crazy.  Currently, I waiting to hear what his current MELD  is.  Its been between 17-20... even though he is "decompensated"... ascites, low platelets, edema, encephalopathy, jaundice and tons of other stuff. Sometimes the meds are working, sometimes they are not.   I'm beginning to think he will die waiting, cause even though he is very sick from all the "side effects" of liver disease, his MELD score isn't high enough.  We would like to make some future plans.  Like funeral stuff and other things.  When we ask the doc's if its time to do these things, they all kind of shuffle their feet and don't say too much.  I wish someone would just tell us how long they expect him to live.  From what I am finding, his chances of surving more that a yr or two without a transplant are low.  Does this sound right?  I'm getting very frustrated.  
thepreacher

[Mr Liver]

I can understand your frustration and anxiety. The unfortunate part of the organ shortage situation is that we usually have to get very sick before we have the opportunity to get better.

There is alot of information on the internet about the MELD and other scoring systems, such as Child-Pugh-Turcotte. These are prognostic tools with one important factor to keep in mind---they predict outcomes based on averages if a transplant is not received.
Those on the waiting list ( I am on it myself) currently have an excellent chance of receiving a new liver (about 90%). So, while they have value as prognostic tools and for assessing the necessity of transplant, the prognostications are arrived at by following the outcomes of those who did not receive a transplant. This is important to remember if you look at these scoring systems.

As I just recently posted to another member inquiring on this same topic,only the attending doctor(s) are in the position to give you the exact information you seek. If you ask his doctor(s) for the full range of possibilities and the probablility of each outcome I cannot imagine not getting an answer. I believe a patient and their spouse are entitled to any relevant medical information if it is known to the doctor.

Unfortunately, it is quite common for patients to undergo worsening medical conditions leading up to transplant, as I stated above . But positive outcomes are much more common than negative ones, and I would keep my focus on that fact. Good luck with finding the answers you deserve, and keep the faith that all will turn out well.
regards,
Mr Liver

[beny55]

Hello everybody, My husband has HepC, cirrhosis, portal hypertension, and has been in and out of the hospital these last month, I'm very scared of this diasease, he was diagnose with hepc 6 year ago and he was not treated at that time, now he has cirrhois, he is only 35 years old, never been a drinker, but he was overweigth, He had varicois veins in the esophagus and those rupture, he almost beed out is the most scaryest thing I had ever experience, we have three beautiful children, and my husband is a fighter, DR say he will be o.k but that we need a lot of patience, but that is something my husband don't have, he is used to be up  and above and the more important, provide for his family, well any advice will help thank you so much, Lorena