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, 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