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End Stage Liver Disease

I have end stage liver disease, have had esophogeal varices, etc.  I am presently doing treatment for HCV, and at last RnA Quant. there were no signs of the virus.  If I clear the HCV from my liver, do I still have ESLD and should I remain on the transplant list?
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1815289 tn?1316817914
IM at stage 4 of cirrious 20 percent of my liver how long do I have left
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92903 tn?1309904711
Geee.. Thanks.

I think :)
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Avatar universal
Actually, interim data was published in 2004. Many abstracts are online from the HALT-C trial. Final data (save for the ongoing ancillary studies) will be published in Nov as you stated. If you want to read some of the results from the first studies just search thru google or pubmed. Alot of participants were not cirrhotic, but stage 3, in the HALT-C trial and the data from that population adds another dimension. The final studies will be good reading I think.
Regards,
Mr Liver
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Avatar universal
The Child-Turcotte-Pugh scoring system (A,B,C) is a way to stage chronic liver disease and is used as a prognostic tool. It tells you how long you can expect to live on average (sans transplant), according to accumulated points which determine your classification of A,B,or C. It is not used to stage cirrhosis, but rather ESLD. You can go from a B to an A based upon elimination of encephalopathy. This is one reason why subjective parameters were left out of the MELD scoring system.

Those in CTP classification of A have a 2-year survival rate of 85%. Those in the A group have to have abnormal labs on the only 3 blood values they measure for the CTP. The prognostic values are right below the ABC table on this link.     http://en.wikipedia.org/wiki/Child-Pugh_score

Mr Liver
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Avatar universal
You'd think MedHelp would stop posts to threads over a 1 year old or some other figure.
Still an interesting thread. Even the additions got interesting.

Goofy your are nuts, probably why i like your posts.
CS
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217229 tn?1192762404
Sheesh... ROFLMAO!!!

Good one --- never even saw that one coming.... LMAO!
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92903 tn?1309904711
I've been worried about the old dates popping up. Not sure how folks are finding them.

Probably trolling through nursing homes and retirement trailer parks, plying the oldies  with promises of prune exilyr.

Or maybe Geritol with Viagra - that's how you get and old date to pop up.  
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217229 tn?1192762404
Youse guys know that hippiemom posted this 3 years ago?

just thought I'd let you know.

I've been worried about the old dates popping up. Not sure how folks are finding them.
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Avatar universal
I am guessing you are genotype 2.  I see no problem with geno 2's not getting a biopsy before treating.  The course of treatment can be really brief for geno 2's (12 weeks or so) and lead to acceptable odds for svr.  Your doctors could monitor you more frequently than non-cirrhotics on tx and use that information to stop your treatment if it looks like you are not handling it well.

If I were a geno 1 and out to treat for 48 or 72 weeks, though, I would want to know what condition my liver were in before starting.  I don't think biopsies for geno 1's who have bled is an irresponsible approach at all, and in general (if their liver is compensated, inr and platelets not at dangerous levels, etc.) I would not discourage someone in that situation from getting one if they were leaning towards tx and wanted  more information to make the decision.
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Avatar universal
Some of the posts here are concerning. There happens to be some misinformation and misunderstanding. I am happy to share what I know. First of all whoever said that it takes 7 yeasrs to go from Child's Class A to Child's Class B, I'd like to know where you got that infomation. I was diagnosed with Stage 4 Cirrhosis and Child's Class A in 1992. I am still Stage 4 and I am still well-compensated.

I was fortunate enough to have the ear of Dr Shiffman in May. He is one of the lead investigators on the HALT C Trials. Here are some of the things he told me. By the way, the HALT C info is going to be presented for the first time at AASLD in November. He said that approximately 80% of cirrhotics are still doing well 10 years after diagnosis. During the trials they biopsied 100's of patients at the start and finish of treatment and 5 years later. This is what they found. If a person was Stage 4, and they got an SVR, 5 years after treatment ended, 20% have a reduction in fibrosis, usually just one stage. If they were Stage 3, 80% had a small reduction. If they had minimal fibrosis, Stage 1 or 2, all of them had a reduction in fibrosis, some of them to Stage 0.

Also, biopsy is important for those who do not want to treat unless they have lots of liver damaqe. There are peoople who can pinpoint when they were infected. If biopsy shows Stasge 1 20 or 30 years later, they can safely choose not to do treatment at this time and maybe never. I am very pro treatment personally but I would never push anyone with a small amount of dammage to do it if they've had the disease a long time. Only 20% or so of patients will progress if not treated. That leaves a lot of people, if they take care of themselves, to do quite well, grow old, and die of something else.

Please be careful of all information on the internet. Always check with your doctor.
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Avatar universal
ESLD is determined by your symptoms and lab values.  What is your MELD score ? Have you had any varices banded ?

Generally, the only reason to treat with ESLD is to hopefully become undetectable before transplant.
Treatment has never been linked to a reduction in portal hypertension in cirrhotics as far as I know. It HAS been linked to pushing compensated cirrhotics into decompensation and ESLD, and is contraindicated in those with ESLD. However, many hepatologists are treating those with ESLD. Others won't. My doc developed  LADR (low accelerating dose regimen) for those with ESLD. He has met with success in clearing those pre-tp and maintaining SVR post-tp. The numbers aren't great yet, but at least there is some hope against re-infection post-tp.

The only way to get taken off the list is by choice, or the failure to meet the minimum requirements required for listing at your tp center. A minimum of a MELD score of 6 is the lowest UNOS requires.

Best regards,
Mr Liver
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229903 tn?1191082851
I can understand that you don't want a biopsy and I think you have a point about the greater risk with ESLD.  Have you thought about getting a Fibroscan?  They're not available everywhere yet, but it's an alternative to biopsy that can be very accurate and completely painless and risk free.  If you live in a major city you may have that option.  
Some of the people on this forum (Kalio, for one) have had them done.  There is a doctor, Hepatitis Researcher, who occasionally visits this forum, who actually has the machine.  
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Avatar universal
hi my dad has just been diagnosed with stage c liver disease...how long do you usually live with stage c?
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Avatar universal
you said you know what stage you are. Is it C? Or are you just talking about biopsy stage. You know cirhsosis stage and biopsy stage are 2 different things right.
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Avatar universal
The problem is that although the virus is cleared, my liver and spleen are not returning to normal.  CT scans show the stage of damage.  Dr. treated me w/o biopsy with pegasys.  Varices was big clue to damage.  I guess because I am a Medical Brat, (in the field) I tend to stand my ground when it comes to Doc's requiring invasive proceedures.  Of course, had a Dr. demanded a biopsy of me, I would have found another Dr.  I am the patient, they are just PRACTICING medicine, and I feel like they can practice certain things on someone else.  I am very aggressive about my medical care, been in the field since 1987, so I guess you could say I've earned the Brat status.(and I'm stubborn, too, when it comes to how I want to be treated because I deserve the best)
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Avatar universal
Right On, after all YOU are in charge of your health, they are there to assist in that pursuit.
I am appalled at the speed your infection has progressed, what do drs say to that rare event? Are you positive it was only last year? I have not read of anyone posting here progressing like that in a  matter of months from  the time of infection.wow.
Be well
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Avatar universal
I guess that is where our miscommunication stems from. Your perspective is the complicated cases of coinfection and ESLD, and mine is the large percentage that is coming to this forum who have none of those things to contend with, no clotting problems, and other multiple medical problems. We agree that a bx is not needed to get Tx, or should not be, i never argued differently. But some here have posted, and I'm sure you have some such clients, that all their blood work have been normal for years but their bx shows cirrhosis. If you waited for symptoms and blood work to catch up with the liver condition, you could be at deathbed. The bx is not without risks, neither is a molar extraction, but the benefits to many outweigh the risks. It is the best tool to gauge damage, at present, in the absence of external signs.
Many are choosing to wait on starting tx based on their bx result, many are choosing to tx on the same basis. From your words I gather all should tx based only on HVC infection and that is an advise we can give to all without discouraging their wish for the bx.  A good radiologist can make a complicated procedure, simple.
I wish the best to you on your way to recovering your good health.
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Avatar universal
I have dealt with many many patients who have ESLD and have to spend four days or more in bed suffering from horrible pain after biopsy, plus, the danger of bleeding at ESLD during biopsy is greater than at any stage.  What I am saying, is that invasive proceedures always carry risks, and biopsies are not necessarily required to proceed with treatment.  There isn't a reason, outside of the doctor's head to know what stage you are at...you have HCV...treat it, stage one, 2 or 3, the research shows that the earlier you enter treatment, the better the chances are that you will clear the virus.
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Avatar universal
I know exactly what stage I am at.  I DO NOT need a biopsy, nor will I ever have one.  I happen to work in the medical field and know how dangerous and inaccurate this proceedure can be.
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Avatar universal
that part of the post was directed at kabbala, I am not suggesting that YOU have one.
It is irresponsible of us to state beliefs as facts not supported by  statistics. we mostly state our personal experience with the procedures and meds backed with the background info from researching it. In a year 1/2 reading here, I have not heard of any complications needing hospitalization.
You deal with coinfected patients, the biopsy outcome and its stats might be different for them, i don't know, their stats cannot be generalized to all HCV monoinfected.

be well
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28293 tn?1213136950
"If I clear the HCV from my liver, do I still have ESLD and should I remain on the transplant list?"

If you're stage C, yes.
If you're stage B, hopefully not.

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Avatar universal
new sojourn is SVR, she took the meds that cleared hcv from her system. from the post that i mentioned earlier, it seems she feels her damage is catching up with her...her story has been an inspiration to many here.
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Avatar universal
Do you know there are two programs, Commitment to Care, and Pegassist, that will provide the medication for free to people who cannot afford or have little or no insurance?  Look at the Pegasys web site, and also the Scherring-Plough website, for toll free numbers to get started on the patient assistance programs. After I bled out from varices, a cowardly doctor told me the same thing...go home and write your will.  I searched until I found a doctor who would take me on.  I started at 2/10's dose in April, moved up steadily to i/2 dose, cleared virus in 12 weeks on 1/2 dose with no side effects.  It can be done.
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Avatar universal
Thanks for being so willing to share your info.  It's all stuff I know as I am a counselor for HIV+/HCV coinfected people.  I am really looking for the specific answer to the question I asked.  My doctor is the VP of UCDAvis liver transplant section and is really hard to contact.  I have been trying to find this answer for a long time.
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