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Hepatitis C End Stage Liver Disease
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Hepatitis C End Stage Liver Disease

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
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23 Comments Post a Comment
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254544_tn?1310779332
"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
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319036_tn?1231455692
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.
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Avatar_m_tn
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
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350279_tn?1208017145
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.
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Avatar_n_tn
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
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Avatar_n_tn
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
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Avatar_f_tn
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.
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Avatar_n_tn
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.
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419309_tn?1326506891
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
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163305_tn?1333672171
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.
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Avatar_f_tn
my father's dr told him he has 1 to 2 yrs the treatments didn't work its killing every thing in him and his losing blood we don't know how to help him any body help has any one had this happen to you
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Avatar_f_tn
Some people use "endstage liver disease" as synonymous with cirrhosis but this is not the case. Compensated cirrhosis means that the liver is still working well and the person does not have any symptoms of end stage. That person may live for 20 years or even more. A cirrhotic person is at increased risk for liver cancer. A person with endstage disease is showing signs of decompensation . Unfortunately your husband is showing those signs....the excessive bleeding and varices along with edema in the ankles and feet. Your husband should be evaluated for a liver transplant. I hope he does well.
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Avatar_n_tn
I WOULD LIKE TO THANK ALL WHO HAS GIVEN ME ADIVCE AT HAS HELPED THANK YOU AND GOD BLESS.
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Avatar_n_tn
HOW EVER HE NOW HAS LARGE AMOUNTS OF RECTAL BLEEDING, HAS MORE WEAKNES AND ALSO HAS ACITIS. HE IS SEEING A TRANSPLANT TEAM. BUT HIS MELD SCORE IS ONLY 14 WHICH IS GOOD BUT THEY WONT CONSITER A TRANSPLANT UNTIL IT REACHES 15
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448147_tn?1269821687
hi, my mother is 55 and in the end stages of liver failure caused by hep c. she found out she had hep c a few years ago via transfusion in the 70's. interferon didnt work. her body couldnt handle it. She currently has ascities. she has fluid removed every other week approx, she has water on the brain which makes her confused (this occurs when toxins & fluids are up) she has been banded in the throat, she has open sores, scarred skin, her spleen enlarged and kidneys now affected. when she has a hepc flareup shes flu like, temp etc. she sleeps alot, her days & nights are flipflopped, shes been this way for the past year. its horrible to watch. just recently shes been getting tapped every other week (the fluid comes back faster & faster) the spleen & kindeys are also recent. this is my situation. I dont know when she'll pass. should be soon. I do know your hubby should be on a liver friendly diet (no red meat, high protein, fruits veggies, low sodium, no alcohol, etc)
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Avatar_n_tn
My dad got Hep C from a blood transfusion in 1985.  He has now been diagnosed with chronic hep C and end stage liver disease - how long he's had this I don't know as the dr never said it until he was asked out right.  My dad is bedridden now, he has tremors of the hands, sweet smelly breath, ascitis, jaundice etc etc.  We were told that he's going to die, he's terminal.  He's on morphine for the pain now, they doubled it last night as the morphine doesn't keep the pain under control!  For all of you out there ask the doctor all these questions - we trusted them and it didn't work.  He aslo can't get a transplant cause he's hep C +
I pray for you all and wish to hear from someone whose gone this route - I am desperate for advise and answers
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Avatar_f_tn
My mom is 74 and has had Hep -C for 24 years. Her stomach is bloated and she is retaining fluid meds are not helping any more. It looks like her liver is enlarged. No varices busting yet had a few tied off. No yellowing yet. has gained 6 lbs in a week of fluid.  So I have to ask will she be in allot of pain at the end not sure what to expect.
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Avatar_f_tn
daughter122,

I personally do not have useful answers to your question.  I did want to say you might need to post this in it's own thread to get an answer to your question.  The dates indicate this is an old thread and I'm not sure that the participants are active here anymore.  If you post your question in it's own thread, it will be more noticed and directly addressed by those who are still active here.

I hope you have some help and support through this.

Trish
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Avatar_f_tn
Nobody really talks about all of the symptoms. There are truely horrifying. My husband was an alcoholic for over 30 years. He began drinking at 15 years old. I had no idea how bad his alcoholism was until about 10 years ago. He hid it pretty well. I thought he was just a guy who enjoyed his beer like most hard working men.
He is 44 now. In the past 6 months he began having chronic diarrhea....about 8 times a day. He vomits a brown color in the morning. He has soiled his underwear many times. His urine is orange. He's had huge bleeding hemorhoids for the past ten years He's often ice cold on a nice day. He's a heavy smoker and when he lights a cigarette, he faints for about 60 seconds. I have seen him flap his wrist during a seizure. That is caused from the toxins going to his brain now. He's often very mean and menacing. He stares into space and doesn't make eye contact with me anymore. His belly gets bigger by the day from the fluid retention. I've watched his muscular arms and legs turn into little sticks. All of the muscle is gone. He often holds his lower abdomen from the pain. I can't tell if he's jaundice because his face is so red from his high blood pressure. I have noticed that his forehead is a shade of gray. His breath smells sweet and musty. It's very nauseating and I do anything to avoid him being close to me.
This man refuses to see a doctor. I used to enjoy a glass of wine before dinner but gave it up when I saw what has happened to him.
Having a drink is fine...even two. The party was never over for this man and now he lives with the fear of what is happening to him.
He's also very depressed. I'm going to have to insist and call an ambulance for him very soon. I wish he would have listened to me all of these years. He always said that I was nagging him.
If God needs to take him, I pray that it goes quickly. Watching this is one of the hardest things I've ever had to do.
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Avatar_n_tn
Hi my name is lou I am now 44 years old.In 2007 I was diagnosed with end stage liver disease(cirrhosis)which was brought on by three decades of heavy drinking and drugging.Things got really bad really fast I had several bouts of blood ammonia levels spiking and causing instant and complete loss of any concious control of reality or even what reality was.I would lose all control of cognitive  process.I would hallucinate so badly, and rarely did I even have small bits of recall of the events that had ensued due to my condition.I was nearly dead before I made it to the emergency room on several different occasions.Upon the day of the placement of my tips(shunt placed in the portal vein of my liver)I was informed that there is no way to be sure of any life expectancey unless of course I continued my drinking.In which case I would die shortly and the quality of life I would have so little left of would surely make me wish Iwas dead.The first tips became and oclosed failed in 2008.I bloated up with severe edema I could not fit even my tennisshoes on over my fluid filled ankles the skin split due to the swelling of the edema and there our still scars on my shins from the wounds the splitting skin festered into.I was highly anemic had to have blood transfusions on 2 different occasions.
I developed a varcies in my esoughagus vommited copious ammounts of blood on 4 different occasions,dark blood which had the appearence of coffee grounds I was feeling propetuously illish in worse than a fluish way
was on morphine for pain and discomfort which also amplified my nausea.In February of 2009 a dueling tips(shunt in my portal vein)was placed in duelality with the shunt that had grown oclosed.It is allowing blood flow still up to this point.I take lasix,spironalactone,iron pills,folic acid,propanolol,multivitamin,everyday.I take lactulose when I become constipated,True my quality of life is dimminished but I AM ALIVE,I get an ultrasound every 6 months,have had 2 or 3 endoscopy,s 2 colonoscopys get blood work done whenever I am dirrected to do so,so far every 4 months,and my doctors have informed me that I will certainly eventually need a transplant.But as of yet have not deemed it due time to place me on the transplant list.My condition has made it impossible for me to continue working so I derrive my income from SSDI and my medical coverage through medicaid or medicare which ever it is the paper work is barried.I have been clean and sober for 4 years.AND I AM ALIVE!and hoping that the next stage of all of this will be a good step for me and not death.So anyone out there going through the same or simular thing I WANT YOU TO KNOW YOUR NOT ALONE.THERE ARE OTHERS OF US OUT HERE GOING THROUGH THE SAME THING.   GOD BLESS AND GOOD LUCK:  Lou    
      
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Avatar_f_tn
hi lou my nephew was sent home from hospital ...nothing they can for him now...I feel so sad cause he is only 37..abused drugs n alchol alot..so basically they told him to go home n die...I wish we can do something for him as he so young...he is up goin to washroom..sits on couch for 10 mins and back to his bed...We pray for him not to suffer...ty for listenin to me,,God bless you
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Avatar_f_tn
I am 60 and was diagnosed two and a half years ago, probably from a tattoo I got in 1982.  I began using an herbal supplement called milk thistle to help me "cleanse" my liver.  I have had a great deal of luck with this supplement in as far as it helps with the fatigue and may even be warding off other damage to the liver that I cannot see.

This is only my opinion but for those of you who are not being helped by other medications this may be something to look into.  As with any herbal supplement you need to discuss this with your doctor.  My doctor said he has not heard of anything detrimental about milk thistle and to keep taking it if I think it is helping me.
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163305_tn?1333672171
This is an old thread began in 2007 about ESLD.

Whether milk thistle is helpful to your liver or does nothing is up to debate.

What it will not do is cure you of hep C. It will not stop someone with End Stage Liver Disease from either needing a transplant or dying.
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1140115_tn?1348499315
Hi, lonela,

As orphanedhawk mentioned, this is an old discussion -- it's 4 years old.  Since the member was seeking support to deal with her husband's end-stage liver disease, a discussion about the possible benefits of milk thistle (even though it's intended to be helpful) is off-topic.  

The Hepatitis C forum is for questions about medical issues and research aspects of Hepatitis C such as, questions about being newly diagnosed, questions about current treatments, information and participation in discussions about research studies and clinical trials related to Hepatitis.  

If you'd like to talk about alternative or complementary medicine, you can find some great discussions here:
http://www.medhelp.org/forums/Alternative-Therapies-/show/685
and
http://www.medhelp.org/forums/Complementary-Medicine/show/86

Claire
MedHelp.org

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