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Posted 12/7/2008 2:43 AM (GMT 0)
Please help me understand my father's situation:

My father has been an alcoholic for the last 40 years. He is 55 yrs old. He was diagnosed with Fatty Liver 3 yrs ago, and ignored it. Two months ago, he had a lot of trouble breathing and some blood in stool. He went to the doctor, and they discovered he has ascites. He went back to a specialist and they said his liver is in very bad condition. He quit drinking when he found this out. He is on diaretics and has lost a lot of weight. He had a scope done of his esophogas and the doctors were very surprised that he did not have any esophogal varicies. I don't get a straight answer about any of this from him. He chooses not to communicate, and is dishonnest. I don't know what is the truth and I don't know or understand his prognosis. What is his prognosis? Will he go on living for 10 more years? What percentage chance does he have left at life? Any help would be sincerely appreciated. Thanks.

Posted 12/7/2008 12:09 PM (GMT 0)
HI Elaine and Welcome to Healing.

I am sorry that your father and family are having to deal with liver disease. I too have autoimmune hep which has caused cirrhosis. There are many educational web sites that can give you specific details or symptoms of the disease and ther are several posts on here that describe the stages of liver disease that may be helpful to you. Cirrhosis all like all forms of liver disease is very individual to each patient, but it is very important that your father see a good doctor who specializes in liver diseases, such as a hepatologist or a good GI. Living a healthy life style, watching his salt intake to help control ascities, and diet since the liver is part of the digestive system and purifies the body there are certain foods that make it work harder such as fatty foods, red meats, fried foods, etc. There are several old posts on here that discuss diets etc.
Your father is very lucky that he has not developed varicies, which can be very dangerous and life threatening. This diagnosis I think is such a shock for most people no matter how it is aquired that it is difficult to process yourself let alone be able to communicate with others. I know I was extremely frightened when I first heard that word. I hope that your father begins to process this all and is chooses to continue to not drink.

Good luck on thiis journey.

Lucy
Posted 12/7/2008 3:46 PM (GMT 0)
Welcome to the forum Elaine. Prognosis for cirrhosis is very unpredictable. Like Lucy said it is individual to each patient. Some people have cirrhosis for 10 years or more before severe complications from the disease occur, while others experience them sooner. It is really great that he has stopped drinking. That alone could extend his life, not to mention the quality of his life. It is probably a good idea that someone go to his doctor's appointments with him. Liver patients memories can be bad or they sometimes get confused about what they are being told.

You have come to a great place for support. There are many caring people here that can be of great help to you. I hope you decide to come back.

My prayers will be with you and your father.
Posted 12/8/2008 1:56 AM (GMT 0)
Hello, I am so happy to have found this forum today. My father has been through a series of liver failure symptoms over the past two years. This started out as bleeding from the rectum - which the doctors called diverticulitis, but.... portal hypertension with varices seemed more likely after reading about iiver failure. He gradually got to the stage where he is now.. currently sitting home, very thin, tired, weak, slow moving, wasted muscles, easy bruises, veins on the abdomen, a few hospitalizations for bleeding, (which they finally banded) and recently elevated ammonia and hepatic encephalopathy. I am so very sad for both him and my mother. He has stopped drinking, finally - because he is just too sick to drink. He is on a 29g. per day protein diet, but his ammonia levels are still constantly rising. I searched, hoping to find a home test that he could use to check his ammonia levels - but there isn't one. I searched for cookbooks to help my mom prepare foods to keep him eating that are very low in protein - and found only two. I am frustrated, and feel helpless. He is also facing the 4th month of having shingles to go along with all of the liver failure symptoms - which causes him a lot of pain. The hardest thing is that my mother feels so much responsibility for being the one to decide if he should go back to the hospital or not - he sometimes gets a ittle "disoriented" although not completely out of it yet. He was dizzy today, stayed in bed and she worries that she can't easily wake him.
I want to help her and him. I am thinking of trying to prepare foods (very low protein) to have available for him. He is wasting away - and the protein restrictions plus diverticulitis diet make it all that much harder. How important is diet really? I have read both sides to the protein thoughts. Do you have any suggestions of how I can help them from afar? My mom wants some kind of low protein drink like "ensure" and thinks Nestle makes one. Do you know of that product? I could order and send them a case to try. Thank you all for your help and support on this forum.
Posted 12/8/2008 7:29 PM (GMT 0)
Hello and Bonn and Elaine and welcome to HealingWell.

Bonn, diet is extremely important to the fight against liver disease. What I found out for my husband was that he needed a lot of protein to prevent the muscle wasting. But he could not process the red meat and would always end up with an encephalopathy episode if he ate it. So I gave him lots of chicken,turkey, fish and some pork occasionally. He seemed to tolerate nuts and beans well also. Is your dad on lactulose. If taken properly it should help with the encephalopathy. And yes they can do blood work for ammonia levels.
How you can help your mom is to get educated and be there for her to talk. The caregivers need to be able to express their fears to people who care and understand. If you can, try and give her a break sometimes. Between all the stress and appointments and other stuff that comes with this disease.....she's going to get worn out and sick herself.

Elaine as Lucy and Butterfly said this is a very individual disease. Meaning each patient suffers with slightly different symptoms. As to his prognosis it all depends on his system and how well he takes care of himself and follows the doctors orders.
He probably does not want to worry you as to why he is being deceitful. Just get educated so that you know what he maybe experiencing. Let him know that you are there if ever he wants to talk about it.


Thoughts and prayers to both of you..........Take care.........and come back anytime............
Posted 12/13/2008 2:55 PM (GMT 0)
Hello All,
Hello Everyone,
Thanks for all the info. I do appreciate the help. I know that its an individual disease, I just am so tierd of never knowing what is going on and I am constantly searching for clarification because everything is so undetermined. I have a feeling that it will continue to go on that way until the end. I don't have any way to know the truth. There aren't any answers anywhere about what to expect, and its just very frustrating. It has been this way for a long time because he is an alcoholic, so lies and secrets are a constant and the truth is never relvealed. Yet, now that things are getting to this point, I just wish for once I could KNOW what is going on. But, I know that is not really foreseeable in this situation. So, I will go on pretending that nothing is wrong, and I will see how long that lasts.

Thanks again.

Bonn, I am sorry to hear that you are going through this. I know the pain you are feeling. All the best and stay strong.
Posted 12/14/2008 12:58 AM (GMT 0)

Elaine and Bonn, I just wanted to welcome you both to the forum.  I had to go out of town and am just now catching up on posts.

Bonn, Ensure is good and there are other supplements, also.  Personally, I like Slim Fast.  It has the exact same nutrients as Ensure, but fewer calories (220 a can) and tastes a lot better, in my opinion.  I can tell you that I never lost any weight on it, but it is a great substitute for lunch, or as a snack.  The fiber in it makes it very filling.  I think the chocolate royale flavor is the best.  There are also Ensure puddings, although regular puddings made with milk would also be good.  I eat very little meat.  I use it more as a seasoning, such as in soups and stirfries.  I also make meatless dishes, such as 3-Bean Chili.  Beans are an excellent source of protein and are easier to digest than meat.  Your dad should definitely stay away from beef.  Do a Google search for meatless recipes.  You will find many.

Elaine, there is no definite way to know how your dad's disease will progress; however, he can extend his life and feel better by taking very good care of himself.  I was diagnosed with hep C in '93 and with liver cancer in '05, but have been cancer free for 18 mos.  So I'm still here 15 yrs. after the original diagnosis.  I still have the hep C and also have cirrhosis.  I am stable and if it weren't for the constant fatigue, I wouldn't know anything was wrong.


Posted 12/17/2008 8:34 AM (GMT 0)
Bonn I am not sure these sites will help with low protein but they say low protein recipes http://www.recipezaar.com/recipes/low-protein http://www.mealsforyou.com/cgi-bin/recipeCategory?category.protein+orderBy.protein_o+dir.asc I am sorry we all have to see our family members suffering sure makes your faith be in question.
Posted 12/18/2008 4:37 AM (GMT 0)
I have been reading for some time about the low protein thing....and Connie, what you say makes perfect sense. When my husband was evaluated for the transplant listing, a dietician met with us and told us that protein was very important to help build the immune system, etc....but at the same time, meat is so hard for liver patients to digest. I let my hubby sneak some red meat every once in a while, and when he does, it sure makes him feel horrible. So, if he needs to eat meat, I make him stick w/ chicken, fish, etc...but do try to concentrate on beans, etc so he can get his protein and still be on a diet that is not so harsh on his liver. Boy!! It is such a hard thing to balance......

Autumnrain...Thank you for the website....I checked it out and there are some pretty decent recipes on there......it's so hard to stay out of a rut in the cooking world, if you know what I mean!!

Mer
Posted 1/17/2009 12:40 PM (GMT 0)
My husband as well was evaluated for a liver transplant and yes the protein is good and bad. Thats one resason why they have so many labs run. One visted we were told us hight protein then the next vist low protein diet. When you add that to low sugar, low fat, low salt. Boy is it hard to make dinner sometimes! THANKS for the site. I'll check it out. My husbands ammonia levels as been as high as 200. He has not drank anything in over 15 years, but he as hep c. Even with all the diet and medication there is just nothing you can do. He was in the hospital twice in December. Some days are bad and some are good you hope. I know where this is going, so I am just thankful for every day he knows me. For now we have some good ones. You may need to adjust the defiantion of "good day". It is like wikipedia alway updating. But we have them.
Posted 1/17/2009 8:46 PM (GMT 0)
Vasquez, I welcomed you in another thread, but wanted to tell you that lemon juice is a good substitute for salt.  Of course, you can't use it on everything, but it is very good on green, leafy vegetables like spinach.  It's also good in chicken-broth based soups and stews.  There is so much salt in canned goods that I try to stay away from them.  I rinse canned beans thoroughly.  There are now low (or no) sodium, low-fat broths and canned tomatoes.  Of course, you often have to flavor things a bit with herbs and spices.  Mrs. Dash has sodium-free herbs.  I hope this helps.

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