Hepatitis C End Stage Liver Disease

[Slivy]

my spouse has hep-c genotype 1 with end stage liver disease... was on interferon and ribavirin but it did not work.  does not drink anymore at all.  53 years old.  probably need liver transplant.  is being followed by doctors... life expectancy in his condition, without liver transplant (no cancer now in liver just had liver ultrasound) could it be 20 years at least? because of his condition does that mean he is more likely to end up with cancer in his liver?  end stage liver disease, just what does that mean??? is the liver functioning at 40%, 30%, what percentage???  he works but does rest when he is tired.  
jvj

[FloridaMouse]

"probably need lliver transplant".  Is this what his doctor told him?  Did he have a biopsy?  Does he know what the Stage/Grade of his liver is?  What tests has his doctor performed on him?  Fatigue is a very common symptom of all stages of liver damage/Hep C.

Mouse

[Slivy]

thanks for responding.  his doctor did come right out and say he would need a transplant, its just they can't really say when... he did not have a biopsy.  when all this happened he was rushed to the local hospital for bleeding varices and banding and ended up being life flighted to a bigger hospital... almost died.  was in ICU on life support for a week.  at that time they were just trying to keep him alive.  finally got the bleeding to stop and i was told at that time he had advanced liver disease due to all the heavy drinking he had done over his lifetime.  he was told at that time he could NEVER drink again... if he expected to live.  so that was well over a year ago... after he came home from the hosp. in may 06 until the end of december he was trying to recover his strength, was in a super deep depression... got sick a lot... had a lot of doctors appts and tests.  in january they decided to have him do the interferon and ribavirin (did not work though) took him off in june.  he has good days and bad days, where every joint aches and he is feverish... tired.  has days of depression too.  just lately feet and ankles swell so he is on some strong water pills along with blood pressure medicine and lexapro.  his last EGD was done about 6 weeks ago and banding was good and ultrasound of the liver was the same as the last one, no cancer.  we meet with his doctor again to go over blood work and get another melt score.  the last one was 10.

[Mr Liver]

For cirrhotics, there is a reference scale that is used for prognosis. It is called the Child-Pugh-Turcotte scale. When you look at this prognostic chart you have to remember that these outcomes do not account for those who received transplants. There is another scale as you probably know that is used to determine liver health based on lab values and is used for transplant listing. It is the MELD score.

http://homepage.mac.com/sholland/contrivances/childpugh.html

regards,
Mr Liver

[reddawg]

End Stage Liver Disease doesn't necessarily mean someone will die soon. Don't know
if that means able to live "at least" 20 years.
Your husband should already be on the transplant list.
Mr. Liver is correct on MELD score. But I would be very surprised if he already has a high score and your Dr. knows what it is.
"Probably needs a liver transplant," would be a very unusual understatement.
Is it possible to get a second opinion?
Your most likely able to get all the CT scans and MRI's on a disc. This makes it easier for a second opinion.
I caution, getting on the actual list is very cumbersome, in Miami, FL. anyway.
I sincerely hope that your spouse hasn't just recently stopped drinking. He will not get a transplant until alcohol free for six months. Besides, to be honest, it is sad that he hasn't stopped many years ago.

[leptx]

Add a few years and I am  experiencing the exact same thing with my husband.  The Doctors say he is in the gray area for a transplant. His Lab work is to good for a transplant but not good enough for him to have much of a life.  He sleeps most of the time, no energy.  
I wish you luck.
LEP

[theresa807]

hi my name is theresa and my  mom was put  on  the liver  list her score is 18  and she has had a lot  of  things go wrong she got hep c through blood she was given in 1985.now she is  so  sick  and  yesterday they took  her  off the  list .she has  and  infection they can get

[SandDragon]

Never been afraid of anything all my life, I helped build highrise buildings,  I used to ride the crane ball to the top every morning. I stay out in the woods all weekend by myself and sleep out on the ground when i go hunting. Nothing has ever scared me, till....now. All the advice you can give me will be insprational to my old ears. the last Dr. I had let me slip through the cracks and I hope there is a last chance still available for me. I dont even know any of the info you guys yalk about. I dont know my scores or anything. all I know is I'm end stage and Pegintrol and ribavirin didnt work. I had fired my old Dr. and the new one told me I should have been off of it by 12 weeks. I just threw away my last ready pen. Number 25. So all I can do is tell everyone to keep track of anything you know is supposed to be dine, and dont let the Dr. call all the shots. get involved. This comes from someone that didnt know much about it all and trusted the Dr. to handle it all.

[misty101]

MY HUSBAN HAS HEP C WAS TREATED BY DID NOT WORK. NOW THEY TOLD HIM HE IS AT END STAGE LIVER DISEASE. AND HE WILL NEED A LIVER TRANSPLANT. HE HAS HAD ALL THE SYMPTOMS. HOWEVER RECENTLY HE HAS HAD A NEW ONE. HE GET SHAKY AND COLD AND CLAMY. AS IF HIS SUGER WAS LOW. IS THIS COMMON IN PEOPLE WITH THIS LATE DX.

[eureka254]

So sorry to hear the treatment did not work for your husband.  I'm not very knowledgeable about all of the symptoms of esld, but I've heard that high ammonia levels (caused by poor liver function) can cause shakiness as well as interfere with the thinking process.  Also, because lots of esld people have ascites (abdominal fluid), there's always a risk of infection, which could cause chills and clamminess -- have you notified his doctor/hepatologist of these new symptoms?  If he's been determined to need transplant (tp), and the evaluation process started and your husband has a transplant team, you should be communicating with them about your concerns so they can make him as comfortable as possible.

There are some members here who are post-tp, and hopefully those members who are more familiar with esld than I am will chime in soon.  I notice you are new to the forum, so welcome.  Don't be afraid to start a post of your own to ask a question -- sometimes comments added to existing older posts get lost in the shuffle. I sincerely hope your husband can make it to transplant -- stay strong, and my very best wishes to you both.  ~eureka

[orphanedhawk]

There are simple ways to check blood sugar. Diabetics use those finger ***** testers all the time.
I had a tp last April. Feel free to send me a private message or better yet, as suggested by eureka, post your own thread so others can reply. Many people will pass over an old post.