What are the final stages of liver failure?

[a30pounder]

I have been told by my Dr. that I am in the begining stages of cirrousis of the liver do to haveing Active Hep B sence 1997. I have been on Epivir for two years plus had kemo and rads for Hodgkins cancer during the last 3 years.  I am starting to feel very sick and in pain. I got a list of my CBC's and what sticks out is that my white cells are at 2.2 and dropping. The Dr. is doing nothing for me and now I am getting very ill. I am sooo tired and sick feeling I cant eat except one small meal a day and i dont get pain meds. Can anyone give me any advice or tell me how long I have left? The Dr. will be taking me off Epivir next month and has stated that there is nothing left that they can do. How long has anyone lived once cirrousis is prominant? Please I need info. I am raising my g-kids and would like time to make arrangements if needed.

[cuteus]

I am so sorry you have reached such a painful threshold in your life, you seem strong enough to think of the practicalities while facing such a disabling illness.  we do have a  couple RNs that stop by and offer their experiences as well as other members who have faced liver failure and are here to share those experiences, check back often for their response

my prayers to you

[tina-b]

I'm sorry you are feeling bad. Nobody knows how long we have, not even the doctors "practicing the art of medicine". You need to be seen by a doctor who is willing to do something. Ask this idiot for a referral to a real doctor. If they won’t give you one, call around and find one yourself. Never trust the word of one person or doctor, the next one that you see will have a different answer. Get a second or third opinion.  Keep up posted. I wish you well

[new-sojourn]

There are many stages and grades of cirrhosis and even after liver failure, one can keep on truckin'.  The liver really might be the cause of all that pain.  Gall bladder(gall stones). pancritis and spleen problems often are the source of real pain.  If your liver is failing, its good to rule out other causes of pain b/c pain meds are very harmful to a sick liver.

My liver failed 9-12-01 and I'm still here.

[bystander2002]

cirrhosis can either be compensated or decompensated.
decompensated is end stage.

decompensated is when your albumin level goes down, bilirubin goes up, platelets go down, varices appear in your throat, and your belly swells up (ascites)

[new-sojourn]

I decomp'ed into failure and am still alive.  So if you are just 'maybe' starting cirrhosis, there is lotsa time to turn this around.  Remember, the pain and inconvience of treatment is nothing compared to the mounting sides-esp encephalpathy, that's the worse-and ESLD (end stage liver disease) and a slow death.  that's kinda your choices.

[a30pounder]

I have read the responses from everyone and wish to thank you all for the info. My doc said that there is no other trreatment that I can have because of several other internal med problems; kindey failure, recent pancreitis, gall bladder stones. spleen scaring, actually all of my insides are filled with systs and scaring for several bouts of kemo and rads during the last 15 years. I was told that I get one month more on the epivir because it does not seem to have helped after 2-1/2 years my hep-b is still active. I can not have innerfurron because I am allergic to it. I have become allergic to even common water. I just want to know what options that I have from here on. Herbs? Cant do surgery because my cbc's are too low unless something ruptures. Does any one know a doctor that could give me some advise, because mine is just going to stop treatment and let "things" happen.

[bystander2002]

Your best bet is to see a hepatologist at a transplant center.
They know alot more than the average gastro does.

Ask your doctor for a referral to a hepatologist (at a tp center)

[imkindly]

Everyone above gave you good advice, I just wanted to throw in my two-cents too :)

It's important for you to get a GOOD doctor (like you were told above---> get a second (or third) opinion, and a hepatologist (not gastroenterologist) would be best)

If you've been told that you have cirrhosis, there's some steps you should take to keep yourself a little safer:
-get vaccinated for Hepatitis A
-get an endoscopy done (to look for signs of varices)
-get an ultrasound done (to look for any irregularities)
-get an AFP test done
-and keep track of all of your bloodtests (always ask for a copy of your results everytime you have bloodwork done)

If your WBC is low---> make sure to watch out for any sign of infection (and see your doctor promptly if you notice any sign of infection)  
Remember that people with low WBC have a hard time fighting off infections, so it's important to get help (antibiotics) quickly.

[[e-mail]]

my father was just told today that he was in last stages of cirrhosis, but he was checked 2yrs ago and the doctor told him that it would be ok.  What is the symptoms of the end stages of cirrhosis because we cant talk to him because he is in a V A  hospital, we have no info on it

[ly224]

yesterday my father had his mass remove from his liver and he also at his last stage of cirrhosis. his skin is very yellow but he don't have any pain yet. He was also told that he was o.k  everytime he come to see an gastro, even though his hept. B was active for 2 years. You're right, we have to find a good doctor, it really depend on who is the doctor. If we found out that he had cirrhosis earlier and keep up with a heptitis specailist, my father wouldn't have cancer, and probably could of had surgery earlier to cut the bad part out! and his cirrhosis wouldn't be as bad.

Can anyone tell me, what happen if we can't find a donar for his transplant? normally how much more time does he has, when his good liver is less then 30%? His gum is starting to bleed and he does have rashes all over is legs...I heard that's a sign over liver failure???and I already know that it's impossible that we can get a liver transplant....because there's people that is been waiting over 7 years and still didn't get one.....

My father is the man of our life, he is such a good father... he tried really hard to quit drinking, and now been solber for more then 4 years....he tried really hard cause, he still had to take care my youngest brother that is autism, (aspurger syndrome) he's only 19 and he really need my dad. My dad is the only one my brother would talk too.

we really need to know if there's any other way to get help him live longer and does any herbs help?

[art701]

i know how you feel,i had hep b so long it went dormant the drs told me.hep c they figure came on in the late 70s or 80early.i was on treament shots capsules,my white cell count is around 2.0 he took me off .also said nothing more he can do,but he wants me to go to slu treatment for experimental treatment,if the drs think i can quallify

[MWSUNDAY]

watch those experimental programs, as they sometimes hurt more than they help.  VA has tried some on me and now my imune system is not functioning.  I go out to the clinic then I am in bed ill for three days.  I' had this since 1982

[sterlingsilvr]

I am a veteran also, I get NO HELP from the the VA, sadly to say they have no use for alkies no matter how severe there health is taking them away.  I been trying to get help from my Dr. for a year now, and I'm getting progessively worse,  They look at alkies like they are dirt.  I live here in Austin, and my VA hospital is in Temple, TX.  I was admitted 8 months ago and I walked out out of there after 1 day, if there is any way anyone of you or your family can get help outside the VA, PLEASE try to do so.  I had hopes that my new Dr. would help me, but I'm sick as a dog and I hope to God that the VA in whatever city you live in treats you better than they do here in TX.  May God Be with you all and your loved ones that are suffering.  

[Missmuffett]

My mother has had failure of the liver for almost 2 years.  They have told her several times she was going to pass away and she has lived six more months.  Now she is really doing bad.  I don't know if it is the final stage of her disease.  She gets sick a lot, can hardly speak, but understands what you are saying.  She is very weak now and can't walk.  She has to drink something called lactalose (sp?) 3 times a day.  It helps process what her liver is not doing, therefore, she has major blow out diarrhea.  Her face was a little yellow yesterday.  She has gone down hill within the past 2 weeks.  This is the final stage?  What a terrible disease.  And yes, get several opinions.

[tamintn]

Your dr sounds like mine.  He told me there is nothing we can do except treat the symptoms as they develope.I have had cirrohsis for 5 years.  I've had HCV for about 20 yrs.  I've only started feeling bad the last year.  Extremly tired.  My life now is that of my 75 yr old mother.  Seriously, that's how old I feel.  I think we both need to find new doctors!

[momma2786]

My husband is in stage 4 of hep.c and stage 4 of cirrhosis he had 17 egds done just had TIPS done (very painful) he had done got Steven Johnson Syndrone bc of so much infection in his body he is 45 yrs.old he had just started getting bedsores.He has started not knowing who we r are how to walk can someone tell me what is coning next so i dont freak out more than i am now. Thank you Karen Ray
         ***@****

[pmcg]

There are alternative treatments that have made a difference for people with end stage liver disease. It sounds like you don't have much to lose at this point.

There is a web forum at:

http://health.groups.yahoo.com/group/Hepatitis_Children_and_CAM_Alternatives/

in which alternatives to conventional treatment for Hepatitis are discussed.

There are also alternative treatments that can support you constitutionally. There are many alternative practitioners who have a lot to offer you if you are lucky enough to find one in your area. I'm VERY lucky that I live in Portland Oregon where we have a lot of them.

I would not recommend treating yourself based on recommendations from well meaning people on a web site...but if you join the group I posted above..there may be people who can help you find a professional who may be helpful and stories from people who have tried alternative methods.

Cheers,

Peter McGovern

[nat1984]

I am in the process right now with my mom. As we speak she is in the hospital. One doctor tells me she is going to die then when we get to icu the other doctor says otherwise. Her ammonia levels are 270, her blood count is 5.8, her potassuim is at 7. I dont know what to do. We have been in and out of the hospital. In the past 3 months she has been going in every 2-3 weeks. She starts seeing people and things. This time she is in a coma state. The way they are giving her meds is down and tube down her nose to her thoart. I just want her to be painless. She is not having the quality of life that she should. Is this the end?

[Polly2427]

My Mom has alcoholic cirrhosis.  The Dr. says there is nothing to do for her but call Hospice.  We are at a loss because he doesn't want to see her and doesn't talk to us.  My Mom has +3 edema in her legs and ascites in her stomach.  Her skin is a tinge of yellow but we really have to look for it.  This AM she got up with a nose bleed that lasted about 1 hr.  She can hardly walk and is extemely tired.  She was so active all her like and within 2 months has become almost bed ridden.  We get her up and she has therapy for her legs, etc but she wants to immediayely go back to her bed.  She hardly wants to eat and was confused a bit one day this week.  We don't know what to expect and what stage this terrible disease is in.  She is very VERY head strong and doesn't want any help at all.  WHAT DO WE DO?  Thanks for all the comments on here, it has helped me considerably