Diagnosed with End Stage Liver Disease (Alcohol related)

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JHawk
New Member


Date Joined Apr 2007
Total Posts : 2
   Posted 4/12/2007 12:19 PM (GMT -6)   
Hi Everyone,
 
Newbie here! My Sister just underwent hernia surgery and I guess the Dr saw the poor condition of her liver and took a biopsy. The results were ESLD and she was told a transplant is her only option. 
 
She's been a heavy beer drinker for years (a few bouts with intravinece drug use in the past), she's also been taking various anti depressants for quite a while. Either could be the cause of ESLD, but more than likley it's alcohol related.
 
She's making an appointment with the liver Dr and I'm going with her. I have no clue what questions to ask the doctor? Nor do I know what to expect as far as her declining health???
 
Any knowledge, tips, or personal experiences will be sooooo appreciated!
 
JH 
 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/12/2007 6:40 PM (GMT -6)   
Hi, JH, and welcome! I'm sorry to hear of your sister's ESLD. You mentioned that she had a few bouts with intravenous drug use in the past. She very well could have contracted hepatitis C or B, which could be the cause of her liver disease. Ask the doctor if he did a hepatitis test. Also ask what tests and treatments he has planned for her, and what might be expected in terms of progression of the disease.

Is your sister still drinking? That's the worst possible thing she can do with her diseased liver, regardless of whether that might be the cause or not. She needs to stop immediately.

Good luck and I hope you will come post again after the visit with the hepatologist.

Connie

ColoradoDoug
Regular Member


Date Joined Mar 2007
Total Posts : 34
   Posted 4/13/2007 10:53 PM (GMT -6)   
Hi JHawk
 
Here's a couple of suggestions for questions
Is the cirrhosis still compensated or has it started to decompensate? In other words, does she have such complications as ascites or portal hypertension?
Should she be referred to a transplant clinic?
I agree with Connie - has she been tested for hepatitis?
 
Make sure the doctor knows exactly what meds she is taking, the dosage, & how often. Also, he needs to know if she is still drinking alcohol.
 
Keep in mind that if she is still drinking, a transplant clinic will not accept her as a patient. They will not refuse her totally, but she will need to prove to them that she has stopped drinking & is doing something about it, such as going to AA, before they will accept her as a patient.
 
If I can think of anything else, I will post another reply. 
 
My situation is I have chronic HCV, ESLD, decompensated cirrhosis, & I have been referred to a transplant clinic where I am currently on the waiting list.
 
Doug   

wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 4/15/2007 9:02 PM (GMT -6)   
Hi and welcome JH,
The others posted some good questions, and I am going to add a few. Diet is an important thing to ask about, as is ANY medications your sister might take,such as over-the-counter meds, vitamins, etc. Many of these, though good for someone with a good liver, are horrible for someone whos liver is not funcitoning properly. Again as said before,she must quit drinking, ,,, maybe she should read some of the posts about end stage liver disease and what a horrible disease it is,,,,,,,,and drinking will just make it worse. Please post again and let us know how things go with the specialist. Also,feel free to post if YOU need some support, caregivers and family suffer greatly throughout the progression of this disease and many have found this a great place for support, as there arent many support groups in most areas.
Very quickly, I am a caregiver to husband, who has chronic active hep b w/cirrhosis, severe heart damage, and recently was diagnosed as being bipolar,( As if this is what we needed,more issues)
take care and hope to see you posting soon
trish 
Moderator for Hepatitis Forum 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 


JHawk
New Member


Date Joined Apr 2007
Total Posts : 2
   Posted 4/16/2007 9:40 AM (GMT -6)   
Wow!

Thanks for some very good advice and questions to ask the Liver Specialist.

I live in VA and my Sister in IN, she say's she's not drinking?

She takes several medications the ones that I remember are Adivan (sp) and a diurectic (sp), but I believe there's more. I ask her not to take them, but going through detox she feels she has to have them?

Not sure if her liver is compensated or decompensated? She was told and diagnosed with ESLD during a hernia removal surgery. The surgeon was not aware of her alcoholism (nor her family physician) so I can imagine the surgeons surprise seeing her severly damaged liver.

I asked her if she was tested for HepC and she was, but the test was neg.

Thanks again for all the help and support!
JH

billybob
New Member


Date Joined Apr 2007
Total Posts : 10
   Posted 4/17/2007 7:42 AM (GMT -6)   
Hi. I'm sorry to hear about your sister. Signs of liver decompensation are fluid buildup in the abdomen, mental confusion, bleeding veins in the esophagus
impaired coagulation (easy brusing). That she is takeing a diuretic suggests that she may have the fluid problem. Ativan is used in alcohol detox to
keep a person from dying (from seisures). Model for end stage liver disease score or meld can be used tell the doctors how much time a person
has to live. Childs Pugh score is an indicator of mortality. Both can be found online. If she wants to live, she should do whatever it takes to be evaluated by
a transplant clinic for placement on the list, and then comply. Good luck, and god bless you both.

dianah
New Member


Date Joined May 2008
Total Posts : 1
   Posted 5/16/2008 1:40 AM (GMT -6)   
Hi,
I am new to this and was amazed to see how many people are going through similiar situations as me. I was feeling so alone. My dad has been a drinker for many, many years. His alcoholism created a lot of hard times for him as well as others in the family. Basically I have been the only one to stick with him trying to help him. From getting him off the streets of homelessness to rehabs (several) to just being there for him, involving him in my life, etc... Unfortunately nothing I did seemed to work. Last December he was diagnosed with end stage liver disease. Something that I wasn't deep down shocked to hear since I had been warning him about this for years. Anyway, he came to live with me in January 2008 after he got out of the hospital. We were told he had to wait 6 months before being able to get on a transplant list. Though he was weak, he was taking his medications and lactolose as prescribed. His appetite was that of a bird but he seemed to be getting a little better day by day. Of course he had to go into the hospital a couple of times to get blood transfusions as his white blood count was very low and his platlets were low as well. April after our regular doctor visit they suggested he go get another transfusion as he was getting low in his counts again. We thought this to be typical for the most part but since april 6th going into the hospital, things have gotten worse. He's been in the hospital now over a month. He's not eatting at all. He's been given a feeding tube through his nose. He's in a state of confusion which the doctors thought the feeding tube would help that because he's having regular bowel movements. He's been given all sorts of tests that don't show why he's still confused like this weeks later. I've been working with the social workers in getting him on the transplant list finally. But now I feel it's all too late. My dad is extremely thin. Almost as if he's wasting away. I ask the doctors what's happening and they don't give any real answers. They want him to be put in a nursing home until the confusion clears up. The problem is I can't find a nursing home that will take him with the feeding tube. He can't have a permanent one placed directly into his stomach due to high risk infection occuring. I feel like my dad is giving up and I just don't know what to do about it. I feel so many emotions. I have tried to help him for years and he didn't listen to me. I feel sad that others (my brothers mostly) never let my dad into their lives. Maybe that would have helped my dad not drink so much and ultimately end up like this? I see him and think this isn't living. He's completely unaware of his surroundings and today thought I was his mother (who's been passed on for the past 12 years). Yet I so desperately wish he could just get the liver transplant and he'd have a chance. Prior to this last visit to the hospital. We'd sit up at night and talk about how this whole liver issue happened. My dad would feel bad and say he wished it never happened. He would also express how he wanted to live and was happier now that he was living with my husband and children as he was so lonely before. I thought things were moving in the right direction and now it seems as if he doesn't have any chance after all. I just wonder how could things go down hill this fast? Why is he so confused, yet there are no real answers for this from the doctors? Is there anything that could be given to him to end this confusion and hopefully get him so he can eat again? I feel so bad about this whole thing. I just don't know how to handle it. One day I'll think I am accepting of it, the next day I am so afraid the end is finally hear and how do I move on?. Anyway, I am glad I was able to see others going through the same thing. Though I certainly don't wish this on anyone but am grateful to know I'm not alone. Thanks!

myfather
Regular Member


Date Joined Dec 2006
Total Posts : 87
   Posted 5/16/2008 11:28 AM (GMT -6)   

  hi dianah, i almost didnt want to post this, the confusion is still there because the liver must be in very bad shape. you need to corner the drs and ask what is going on sometimes you need to do that with them they need to give you some answers. maybe he has an infection going on, men do get UTI that will make them confused to. i lost my father to this disease to. but you have to be demanding with the drs, corner them if you have to, write down the questions for them to answer and make them answer them!!! and if you have anybody in the family or friend thats in the medical field bring them to ask questions, that would help. i learned more about my fathers disease from this forum after he was gone than i did while he was still here. its a horrible disease for your father and for the family. please do not let the drs give you the run around they will if you let them, now that your father cant talk for himself its up to you. you are in my prayers and thoughts, i wish you the very best of luck.

annette

myfathers child

 


autumnrain
Regular Member


Date Joined Dec 2008
Total Posts : 21
   Posted 12/10/2008 4:45 AM (GMT -6)   
My sister was a heavy drinker for many years got Hep C from a boyfriend, and it turned into ESLD. Now she is becoming more critical with ascities, varices and is in pain. Her memory is shot, and her balance is off, this has mainly been past two or three months. They have her on lots of diuretics, high blood pressure meds and all. It is disheartening to watch her suffer, and my heart goes out to anyone suffering this dreadful disease or watching someone go through it.

myfather
Regular Member


Date Joined Dec 2006
Total Posts : 87
   Posted 12/10/2008 9:50 AM (GMT -6)   

  autuminrain,  i do feel for u I know what u r going through, I do not post very often but i do read the posts a lot my prayers go out to everyone suffering from this disease and thier caregivers. it will b 2 years on the 18th of december that my father lost his fight with liver disease, this a minute to minute disease keeps u coming and going. l wish everyone happy holidays, merry christmas, happy new year. my prayers r with u and your sister.

 annette

my fathers child

 

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 12/10/2008 9:55 PM (GMT -6)   
Hello Annette, how are you doing? Hope you are doing fine. Glad that you posted. You have been missed.
As you see we have a lot of new wonderful members......

Have a very Merry Christmas and a Great New Year.........

Thoughts and prayers......
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/11/2008 5:59 PM (GMT -6)   

Hi, Annette from an Old Timer here!  smilewinkgrin    I can't believe it's been nearly two years since your dad passed.  I remember when you first came here and were dealing with his illness.  Glad you are doing well.

Dianah, I am so sorry about your dad.  It does sound as though he is in very bad shape.  I assume he is being given Lactulose for the confusion...I think that is what you meant when you said he is having bowel movements.  If he is not getting Lactulose, ask that it be prescribed.  And, as suggested, corner the doctors.  Find out who his Attending Physician is and ask him to give you an "educated guess" as to how much time your dad has left.  By their wanting NH placement, it sounds as though there is nothing more that can be done for him, unfortunately.

Does your dad have a Health Care Surrogate?  Since you have been the only one involved, I imagine it would be you.  Does he have a Living Will?  Since the HIPAA laws went into effect, it is very difficult to get information on a patient or to act on their behalf w/o a Medical Surrogacy and/or Power of Attorney.  Since your dad is not really aware of his surroundings, etc., he wouldn't be able to sign the papers now. 

I do want you to know that alcoholics will not listen to anyone or change for anyone.  I'm a sober alcoholic (for 22 yrs.), so I know.  He would really have to want to stop drinking himself and to go to AA immediately following rehab, even if he had AA meetings IN rehab.  They only scratch the surface.  Since he did not do this, he would not have been a candidate for transplant.

You have an awful lot on your shoulders right now, and my prayers are with you. 


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


sun7june
New Member


Date Joined Feb 2010
Total Posts : 2
   Posted 2/1/2010 8:44 PM (GMT -6)   
My dad has been a heavy drinker all his life and now has end stage liver failure, fluid retention, pancreatitis, kidney failure, etc.  He quit drinking in May but has started again because he found out that he probably will be at the end of the transplant list and won't live to see a new liver anyway.  He is drinking a LOT again and I'm wondering does anyone know what to expect?

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/1/2010 8:57 PM (GMT -6)   

Hi, Sun7june.  You picked up on an old thread.  It would be best for you to start your own, so you will get more replies.  Just click on New Topic instead of Reply and post what you posted here.

Welcome to the forum!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

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