WHAT SYMPTOMS IS HE HAVING NOW AND HOW LONG HAVE YOU KNOWN ABOUT IT?
Thanks for commenting....he is 46 years old, severe alcoholic , will not stop drinking, took him to hospital in March and he walked out after 24 hours, against Dr's advice, he has Hepatitis C, has had for 20 years from drug use, needles I guess, when he was younger. His legs and feet are very bloated, he bruises easy, has lots of scabs on his body that bleed, even without touching them, he lays in bed and drinks beer, his stomach is very tight and bloated and he says it is painful, has low back pain and is mildly jaundiced. He will not call his doctor, when I talk him into making an appointment for him, he just cancels it. He won't listen to ANYONE.....and to be quite frank, I don't see any point in taking him to the doctor because HE WILL NOT do what the doctor tells him to do.....I don't mean to sound like I've "given up" on him but I am very very tired, he hasn't worked in 6 months, and the burden is on me, and when he does work it is very erratic, and no, I do not buy him beer, but he gets it anyway......I don't know what "stage" of this disease he is in, but I would like to know what I am in for......any comments??? Thanks again.
gosh, i am so sorry. maybe he is in denial. he sounds depressed. the dr can give him medicine for that and he will feel better. my father has the same symptoms. he doesnt drink. never has. he has hep. b. he is in stage 4. that is what your husband is in.(i think) the swelling is called ascites. they can give him lasix for that. they can also give him a drug that will cause loose stools. it will get rid of the amonia that is building in his blood. the high amonia causes the mind not to work right. do you have any children? i am the only child and my parents have been divorced since i was 12. i am 33. this dieases is very hard to deal with even under the best circumstances. my heart hurts for you. the end of cirrohsis is very emotionally hard. i have seen it in patients i carried on the ambulance. they get very toxic and confused. they almost waste away. i know that is not what you want to hear but that is the facts. if you need to talk to some one, call me. 870-934-0770. i need a friend too. or keep in touch on the computer. my email is ***@**** ps. please be careful. hep c is highly contagious and at this stage is easy to catch. there is no vactcine to protect you. bleach everything. it can live in dried blood for months. bye for now. melissa xemt
Thank you so much for answering me, My name is Cathy, I am wondering how long he has to live, weeks? days? he will not go to the doctor so unless it's a medical emergency and he is scared, he will just lay in bed. Please be frank with me, I can take it, you've probably seen alot....Will he live through the summer?? The month?? Thanks
IF I HAD A CRYSTAL BALL ID ANSWER YOUR QUESTION. IT DEPENDS ON HIS WILL TO LIVE. SOUNDS LIKE HE HAS GIVEN UP. THEY TOLD MY DAD HE HAD LESS THAN 2 YEARS UNLESS HE HAS A TRANSPLANT. IF I WERE TO GUESS, ID SAY, 1 YEAR. HERE ARE SOME THINGS TO MAYBE LOOK FOR. DARK URINE(THE COLOR OF TEA), CONFUSION(NOT DUE TO BEER),YELLOW OR GREEN SKIN, LIGHT YELLOW STOOL AND FREE BLEEDING. I WISH I COULD TELL YOU EVERY THING IS GONNA BE OK BUT ID BE LYING. ALOT OF CIRROHSIS PTS EITHER BLEED TO DEATH INTERNALY OR GO INTO CONGESTED HEART FAILER AND THEY ARE VERY TOXIC. THE BRAIN CANNOT FUNCTION WHEN ALL THOSE TOXINS ARE IN THE BLOOD. THEIR PLATELET COUNT GOES ALMOST TO NOTHING.THE LIVER IS THE KEY TO ALL THINGS. WRAP YOUR ARMS AROUND YOURSELF AND SQUEEZ. THAT IS A HUG FROM ME. HANG IN THERE. YOU ARE NOT ALONE. MELISSA
CATHEY, ON THIS SITE, LOOK DOWN AT QUESTION FROM LIVERLOVER DATED 5-24-02, LOOK AT COMMENT MADE BY PATRIOT. READ WHAT DR SCHULZE SAID ABOUT THE LIVER IN HIS COMMENT. LET ME KNOW IF YOU FIND IT. MELISSA
TRY COUNCILING??? WHAT DOES HIS PARENTS SAY? FAMILY IS A STRONG INFLUENCE. WISH I COULD TALK SOME SENSE IN TO HIM. MELISSA
There are THREE stages to cirrhosis: Class A, Class B, and Class C.
Class A cirrhosis is not very ill.....Class C cirrhosis is "end stage".
Class is determined by a CTP score.
There's several medical websites that offer CTP scorecards. We have some listed at http://forums.delphiforums.com/liverfailure/messages?msg=112.1
(You can scroll through about 10 of them there.)
CTP is what a doctor bases his "prognosis" on. (Life expectancy.)
It's also what is used to see if a person is ill enough to need a liver transplant.
(Only Class B and Class C are eligible for evaluation for the liver transplant waiting list.)
You need to know some simple blood test numbers, in order to calculate the score. (But if your husband won't have a simple blood test done......it's all guesswork.)
There's more information at http://www.expage.com/cirrhosis if you need it.
As for the comment above referring you to anything "patriot" recommends-----try not to do any "flushes" or anything else unless you know it won't kill your husband. (*If your husband is Class C.....you could easily kill him.)
The reason I say that is---
Hulda Clark has some "wrongful death" lawsuits against her.
Patriot seems to think very highly of Hulda's methods anyway.
HEPATITIS (inflammation) has four stages.
Stage 1 being not very ill at all.......stage 4 being the begining of actual "cirrhosis".
CIRRHOSIS has three stages. (A, B, and C.)
THANKS, IMKIDLY. THAT HELPED ME TOO. I WAS REFERING TO THE FUNCTION OF THE LIVER THAT HE WROTE. NOT THAT DIET STUFF OR ANYTHING ELSE. JUST THE SECTION ON THE FUNCTION OF THE LIVER. MY FATHER HAS 4 AND 4. 4 ON HEPB AND 4 ON CIRROHSIS. THEY DIDNT GIVE HIM LONG. I KNOW ENOUGH TO KNOW YOU HELP YOURSELF OR KILL YOURSELF WITH PITTY. AT THE RATE HER HUSBAND IS GOING, IT WONT BE LONG. BUT THEN AGAIN, ONLY GOD KNOWS. HIS WILL BE DONE. THANKS FOR YOUR LETTER TO CATHEY. IT HELPS TO KNOW PEOPLE DO CARE .ANY MORE INFO WOULD BE APPRICIATED. I HAVE LOTS OF QUESTIONS MY SELF./ MELISSA
Thank you so much for answering me, all of you, it's nice to know that there are people out there that know what this is like, I had to work yesterday, (overtime-these bill are piling up!) and when I came home there was a quart bottle of Southern Comfort on his nightstand with maybe an inch left in it, I THREW IT AWAY but the damage had already been done.....he was asleep or passed out, I don't know which.....he says he is having a hard time urinating or having a bowel movement, his stomach is SOOOO BIG and TIGHT....If it was me I'd be in an ambulance PRONTO...I don't understand, maybe he wants to die....thanks for listening ...Cathy
I sent this once but it didn't go through-----Thanks for all the comments. It's nice to know that there are other people who have experienced or know what I am going through....I had to work yesterday (overtime---the bills are piling up!! ) and when I cam home there was a quart of Southern Comfort on the nightstand with about an inch left in the bottle, I threw it away, I don't know if he was asleep or passed out. He tells me that he is having a hard time urinating or having a bowel movement, and his stomach is SO BIG and TIGHT....he says it hurts. I told him if it was me I'd be in an ambulance PRONTO.......but he won't listen, maybe he wants to die, I don't know....he's having alot of itching and his eyes are slightly yellow, sometimes worse than others.....What's next? Thanks again for all the comments, I am so glad I found this "forum" It helps just talking about it....Cathy
Having trouble urinating is a sign of hepatorenal syndrome.
(Kidney failure induced by liver failure.)
Your husband needs help.
As an aside---my husband has been in liver failure since August 2000. The key to keeping someone alive, is handling complications (as best you can), as they come up.
The three "main" complications are : ascites, varices, and encephalopathy.
If you don't try to keep those under control.....his time with you may be short.
You asked "what's next".
I hate to say what's next (because for anyone else reading this----I don't want them to think anything is hopeless.) Many of the complications of cirrhosis can be controlled.
But if you are wanting to know what to expect---from someone who continues to drink, refuses to try to keep complications under control, and won't see a doctor----
here's some possibilities of what you can expect:
1. He'll begin to vomit large quantities of blood. You'll need to call the lifesquad and hope they can control it before he bleeds to death.
2. He'll act crazy, slur his words, and fall into a coma. You'll need to call the lifesquad before his brain swells and he dies.
3. He'll get an infection in his ascites (swollen stomach). His blood presure will drop and he'll go into shock and sepsis (blood poisoning). You'll need to call the lifesquad and hope that after several days of IV antibiotics that they can save him.
4. He'll go into hepatorenal syndrome. (Can't urinate, kidneys fail). You'll have to call the lifesquad and hope that through dialysis or some other miracle that they can save him.
(Liver transplant is the only real "cure" for hepatorenal syndrome)
Most transplant centers demand 6 months sobriety before transplant.
5. All of the above, (or a combination of some of the above happening together).
Sounds grim, and if you have children, it will be a terrible thing for them to witness.
So what can be done?
For each of the above, there are preventative measures.
FIRST---remove anything that is making matters worse. No alcohol, no medications that may be hepatotoxic (examples: many medications, even OTC meds like acetaminophen or ibuprofen or aspirin)
And for the above:
1. Non selective beta blockers to reduce pressure in the varices.
Endoscopy to locate large varices and band them off.
2. Lactulose to remove ammonia and other toxins from the brain.
3. Watch blood pressure, watch for fevers, watch for pain in the abdomen. Be quick to go to the ER if any of those appear.
4. Go to the ER if he can't urinate. Hope for the best.
Your husband should be taking diuretics and avoiding salt. If you let him continue with the ascites (swollen stomach) without diuretics-----he'll need paracentesis.
If you don't get him diuretics.....and you don't get him paracentesis.....his prognosis is grim.
THANKS IMKINDLY, I KNOW YOU DONT WANT ANYOHNE BUT CATHEY TO READ YOUR COMMENTS BUT THEY REALLY HELP ME TOO. CATHEY, THIS IS IT IN A NUT SHELL. HE IS GONNA DIE WITHOUT HELP. DO IT NOW. IMKINDLY WAS BLUNT AND TRUTHFUL. SHE OR HE , EXPLAINS IT BETTER THAN I CAN. IMKINDLY, STAY IN TOUCH WITH US PLEASE. WE BOTH NEED YOU. HAHA. THANKS AGAIN. CATHEY, HANG IN THERE. IM HERE IF YOU NEED TO TALK. MELISSA
PLEASE KEEP IN TOUCH WITH ME AND CATHEY. YOU ARE VERY WISE IN THIS DIEASES. MY FATHER HAS AN APPOINTMENT AT LSU THE 27 AND 28. THEY SHOULD LET HIM KNOW IF HE GOES ON THE LIST FOR A TRANSPLANT. I READ HIS EKG AND I SAW ALOT OF PROBLEMS WITH HIS HEART. IF HE WERE IN THE AMBULANCE I WOULD HAVE SHOCKED HIM. HEART RATE WAS 45. HE HAS WHAT I CALL ISCHEMIA. WITH THIS INFO, I DONT THINK HE WILL BE A CANIDATE FOR TRANSPLATE. DO YOU? MELISSA
Thank you for being so straight forward about it....I am going to try to talk to him AGAIN today; but like I said before the last time he was in the hospital he left after 24 hrs, just got up and walked out....but now the symptoms are worse, so maybe he will stay and let them help him.....I never realized what an evil thing alcohol can be.........Thanks again, you sound like wonderful people....God Bless You....and I'll let you know how it goes this evening....Cathy
you go girl!!!! if he wont go put his butt on this computer and let me talk to him... if he does go, tell them he needs something for depression. maybe that will help to. GOD BLESS YOU BOTH. i will pray for yall. melissa
worried about ya. let me hear from ya
Each transplant center sets their own criteria for who they will accept. Some centers are stricter than others.
Your father will have to pass LSU's own evaluation, to be accepted there.
Generally, an evaluation is a series of medical tests (cardio included) that show whether the patient will be able to survive transplant surgery.
Some centers list their criteria online (on their website), but I checked LSU's site, and they don't have details listed.
(That's at http://www.wkhs.com/rtc/liver.html )
My husband is listed at Baylor Methodist in Houston. They're pretty strict. Along with the physical evaluation, we also had to do a psychosocial evaluation (right attitude).
Good luck to your father :)
If I can be of any help, let me know.
thank you. i will probably have many more questions. how long have yall been on the list or have you already done the transplant thing? my father never had a drink in his life. we think he got hep.b off the ambulance. he too was a medic. but back then you didnt take universal precautions nor did you take any shots for hep.b. he was tested in 95 and the dr told him he had the antibodies. he didnt. he had the antigen. the dr made a mistake in reading the results. now we are where we are today. we just found out a month ago. cirrohsis!!! caused by hep.b. wish cathey would let us know something. i am worried about her. melissa
My husband went into liver failure very suddenly (August 2000) after a botched kidney stone operation. At that time, I knew very little about livers, or scar tissue, or liver failure. We were dealing with a local doctor that told us my husband wouldn't live past Christmas 2000. (The local doctor offered NO treatment whatsoever).
That was my incentive to begin learning all that I could. (And also to drop that doctor and find a better one.)
We did find a better doctor, and began seeing him in Nov. 2000.
He explained that my husband's liver and pancreas had been perforated (during the kidney stone operation)...and that my husband's liver had been "insulted" and shut down. (10% function). We also found out that my husband has Hepatitis C. (We had no clue, until then.)
He also explained that there were many things that we could do, to treat complications as they arose.
We went through the evaluation (for the transplant list) in Feb. 2001 and got accepted. We were given a beeper....and we are still waiting. (On the waiting list for 16 months now)
During the past 16 months, we've experienced alot of things.....urosepsis, peritonitis, septic shock, bleeding varices, encephalopathy.
My husband's ascites is large, and has caused two hernias (one hernia is in his navel, and one is above his navel). They can't be repaired until he gets the transplant. (Anesthesia right now could kill him, with his liver not functioning right.)
He takes alot of medication to keep everything under control---Inderal (beta blocker) twice a day.....Lactulose twice a day.....Ferrous Sulfate (iron) twice a day.....mag tab (magnesium) twice a day.....Lasix (diuretic) three times a day.....Spironolactone (diuretic) three times a day.....Noroxin (antibiotic) once a day.....plus two vitamins. (All under doctors orders----everything he takes was prescribed by the hepatologist).
I read all that I can, and post alot of it on my board at Delphi (support group). I've got two homepages ---
Both link to the delphi messageboard.
I come to this board (MedHelp) pretty regularly too.
You mentioned your father's pulse only being 45....
Is he taking any heart medication?
The reason that I ask that is----
Since my husband began taking Inderal (beta blocker), his pulse stays around 55 to 60. It's actually a good thing (the doctor wanted to reduce his heart rate---in order to reduce the risk of hemmorhage from his varices)
gosh. yall have been through the ringger. i am so sorry. my dads ascites is getting worse by the day. so far they have him on lasix 80 mg. and aldactone 200 mg. his amonia levels are increasing. last week they were 40 now its 54. they may have to put him on laculose(spelling isnt my high point.) i understand how that works. he is mentally ok so far!! i live 4 hours from him and i am on the road alot now. i have 2 children. 18 months and 13 years. the 13 year old is my best friend. (both boys) my husband is very supportive of me. he knows how much dad means to me. my step mom is blind. i am an only child,so it kinda falls to me. what is varices? is that internal bleeding? please explaine. i learned alot in medic school but not all this. your friend, melissa.