End Stage Liver Disease

[hippiemom]

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?

[cuteus]

There are some forum members with esld that might be able to offer you some suggestions if they drop by later, in the meantime scroll down to the question of 7/19 by aj999 hepatic encelophaty, those are some of the members struggling with this condition.
best to you

[mikesimon]

There are studies that indicate that fibrosis and perhaps cirrhosis can be reversed with interferon, particularly if SVR is achieved. Whether sufficient damage can be reversed to restore enough liver function so that you would no longer be ESLD is the question and I have no idea about that. I would maintain my transplant listing as long as I could just to be safe. Good luck. Mike

[new-sojourn]

I wonder that also.  I almost bled out when my varicies burst on 9-12-01.  Then I went into a heptic coma-encephalopathy gone wild.  2 wks later I was tested and 10 days later I was dx w/hep c.  So, I was told to just go home and die since I had no $$'s or insurance.  So, I said my 'good-byes' and 'I'm-sorries'-and then went to Paris (b/c that's the 1st thing I said when told I would die in wks if not days-'B/I've never seen Paris!')

In Jan 2002, I went over the mts to a big city spl 7 right before I left, I got the news I was treatable & a 2b.  I started tx in May and cl'ed in 18days.  fin tx and am still svr (test was to 200 not 50.  I was transfused in '67 in Alaska.

I called my doc and yesterday he answered and said that their was nothing else he could do to improve the liver, only have the symptoms treated.  Some damage can improve b/mostly the liver is just stabalized w/no further damage (hopefully).

Stay on the transplant list.  I'm not going that route b/w/or w/o svr, you still might need that liver.

[imkindly]

Hi Hippiemom
Whether or not you would need to be on the transplant list, is determined by your liver FUNCTION.
(How well your liver is functioning)

Here's some things that you might already know:


Inflammation can cause fibrosis (abnormal fibrous bands in the liver).....
Fibrosis can lead to scar tissue (cirrhosis)....
and as the liver attempts to regenerate, abnormal NODULES grow between the fibrous bands.

As time goes by, and more and more nodules appear in the liver, the architecture of the liver can become more and more distorted.

This distortion can interfere with blood flow (causing Portal Hypertension)

Cirrhosis has three stages:
---stage A (compensated cirrhosis)
---stage B (the beginning of decompensation)
---stage C (decompensated cirrhosis)

A person with Stage B cirrhosis, is starting to show the physical effects of portal hypertension. (Ascites and/or varices)

A person with Stage C cirrhosis has so much damage (so much distortion) that ---- along with the problems of portal hypertension--- their liver FUNCTION declines. (the liver can't produce enough Albumin for the body)


--- Ok, now keep in mind that a person can get on the transplant list if they have Stage B --OR-- Stage C cirrhosis.
(I'm not sure which one is your situation.)

--------- If you are Stage B cirrhosis, and you were to stop further damage from occurring (by clearing the virus, and taking very good care of yourself), perhaps you could turn this thing around.

--------- If you are Stage C cirrhosis (decompensated), even if you stopped the virus, you still need a transplant.


Hippiemom--- This is just intended to help you understand the reasoning behind some of this. (So that you'll know what to discuss with your doctor.)

If I were you, here's some things I would do:

1. Keep track of your bloodtests for Albumin, Bilirubin, and INR (or PT). Watch for any changes in those numbers. (Those are the numbers used to gauge liver FUNCTION)

2. Follow a low sodium diet, and take the medications your doctor prescribes (example- you may be taking a beta-blocker to reduce portal hypertension, or you may be taking diuretics to control edema, or you may be taking lactulose to control ammonia,... etc.)

3. Don't take anything (even over-the-counter meds or supplements) UNLESS you have your hepatologist's approval

4. Make a list of questions that are on your mind, and have your hepatologist go over them with you.


Here's wishing all the best to you
(((((Congratulations on being Undetectable)))))

[Sunag]

Hi!

My condition is similar to that of imkindly.

HepC positive with 3b and viral load of 29,000 copies/mL.
Cirrhosis- well compensated.
liver is smaller in size, few nodules seen, no acites (ascites), suspected varices (blue coloration on a small region of oesophagus), Spleen is normal in size

However, did not get biopsy done.

since diagnosis (May 1, 04)
On low sodium and low protein diet
On lactulose, aldactone and Nexium.
Started treatment 5 weeks ago with Peg-Intron and Riba.
A major difference after 2 months is that ,edema disappeared, which I had for 4 years.

Still very very fatigued, and sides are not too kind with me.

Reading the reports on reversal of cirrhosis, and reading Sojourn's story, I am hoping that I will not need a liver transplant. This hope is based on the fact that it takes 5-7 years to go from stage 1 (compensated) to stage 2 (beginning of decompensation).
However, reports also say that it is highly likely that SVR is attainable for patients with 3b, with low viral load, below 60 years of age , provided they are cirrhosis free----
So in my case (3b and Cirrhosis) time will be the best answer.

So bottom line, you need to get to know the stage of liver damage.

- Sunag

[snook_man]

Sorry to jump in on such a serious thread, but just wanted to thank everyone for wishing me a happy B-Day. The decision is made, and this WILL be the LAST year I live with HCV!!!

By the way, Rev:Thanks for B-Day wishes, but the election speach was out of hand. You are nuts. I could never see you in public office. It would be like what you see on those news reports, when a argument breaks out in the Chinese government.. Chaos!!! I see you as the pissed off postal worker, or the insurance guy that takes out the whole office. Actually, no, I see you as Larry Flint type, sitting in front of judge in a depends under garmet, and a f*ck America shirt!!! Ha ha ha ha

[Honey15637]

hahaha Loved the description of Rev,,,,Happy Birthday!! Do something special!

[Xenigma]

Happy Birthday Snook and many, many more!!
Hope you have a great day!!
Enigma

[jonihs]

I also had liver failure and dx. w/ ESLD. From the time I left the hosp. til I started tx., I took my meds, ate liver freindly, and my enzyme numbers kept getting better and after 6 mos., my G.I. told me I no longer qualified for the tranplant list!!! 12 mos. later I started tx. and even my inflamation (inflammation) improved to the point that my liver is back to normal size. I'm having another biopsy done next month, but I believe I no longer am ESLD. So, as the saying goes: Never give up. I'm sure not going to.      
        Love to all, Joni

[DH Bill]

That is so cool! My best to you on the bx.

[jonihs]

Thank you, thank you very much (Elvis LOL)    Joni

[fsplink]

I like the way you think. I'm glad you'll be rid of this virus this year! I'll be right there with you. Meds came in the mail today. Anyway, I did't get to say it the other day so "Late Happy Birthday"

[snook_man]

Looks like this might be our year, my friend. I'm going to start in August, then I'm kicking some @ss!!! Thanks..

[Sam Hall]

9/11 my arse ,if i ever tyuly found out that this was just aonther twist in the Popes plan i'm joing Hamas
Samm

[hippiemom]

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.

[hippiemom]

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.

[cuteus]

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.

[imkindly]

"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.

[hippiemom]

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.

[cuteus]

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

[hippiemom]

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.

[cuteus]

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.

[hippiemom]

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)

[cuteus]

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

[bystander2002]

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.

[Alzorro]

hi my dad has just been diagnosed with stage c liver disease...how long do you usually live with stage c?

[beckyv102]

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.  

[Mr Liver]

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

[Susie2007]

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.

[BThompson4]

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.

[meki]

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.

[GoofyDad]

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.  

[meki]

Sheesh... ROFLMAO!!!

Good one --- never even saw that one coming.... LMAO!

[CockSparrow]

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

[Mr Liver]

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

[Mr Liver]

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

[GoofyDad]

Geee.. Thanks.

I think :)