Sign of end-End Stage Liver Disease

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

doglover1961
New Member


Date Joined Dec 2009
Total Posts : 3
   Posted 12/21/2009 2:46 PM (GMT -7)   
Hello Everyone,
 
First, its nice to meet you'all. Just sorry we all seem to be facing this horrible disease.
 
My father was diagnosed in February 2009 with liver cancer, hep c & cirrosis. He was given 3-6 months then.
 
What I'm needing to know is...without further treatment how long does he have? We aren't wanting to speed up his passing but we are getting so tired and do not want to see him suffer longer.
 
He's not a transplant candidate, can't be resectioned & has had chemoemobolization. He is also on Nexavar & Laculose.
 
He is only eating sweets and drinking tea. Anything else makes him sick and those two things don't always stay down. He is starting to have severe pain in the liver area now.
 
Thanks for all replies. We just want to know what to expect.
 
 
 

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 12/21/2009 6:56 PM (GMT -7)   
Hello Dog Lover and welcome to HealingWell. So glad you found us.

All journeys through liver disease are slightly different. My husband had HepC, liver cancer and cirrhosis also.
I can say is that about 6-8 months before he died he developed small focal siezures ....they gave him Keppra for those. They had to up the dosage a couple of times though. He also had a small stroke about 4-5 months before he died. His lactolose stopped working so well to control his encephalopy about late November or early December so they added Xiafaxan to his daily meds. It worked very well for him along with the lactolose until he passed in late April. He had all his facilities until he went into a coma ....about 48 hours later he died. Hope this helps..........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.


doglover1961
New Member


Date Joined Dec 2009
Total Posts : 3
   Posted 12/21/2009 7:06 PM (GMT -7)   
Hello and thanks for the reply. It sure helps to have someone to talk to thats been through this.

It seems like our doctors are too busy to just talk...they just kind of rush us through without really explaining anything.

I'm very sorry to hear about your husbands passing, how old was he?

Dog Lover

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/21/2009 8:13 PM (GMT -7)   

Hello, Dog Lover.  I also wanted to welcome you to the forum.  I also have hep C and cirrhosis and was diagnosed with liver cancer in '05.  However, Mayo did chemoembolization and then a study drug, TheraSphere, which shrunk and killed the tumor, as well as my rt. lobe, which was surgically removed several months later, in May of '07.   Aside from fatigue, I have been okay.  Last month, at a regular CT scan, I was shown to have a suspicious spot on my left lobe.  So I'm having an MRI to determine if the cancer has returned.  If so, it's very small and can hopefully be treated successfully.

Prior to receiving any treatment, I was told that without treatment, I had 6 mos. to live.  If nothing else, I've gotten 2 1/2 more years added to my life.  It's really impossible to say how long someone has to live, once diagnosed, as every situation is different.  It's common for a liver patient to go into a coma before dying.  If the doctors feel that your dad has 6 mos. or less to live, you might ask them for a referral to Hospice.  Hospice will provide comfort measures for your dad and be a great help to the family.

Hugs,

Connie


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


doglover1961
New Member


Date Joined Dec 2009
Total Posts : 3
   Posted 12/22/2009 3:02 AM (GMT -7)   
Thank you hep93...You have been very blessed to have good results. Do you feel it was because of the study drug? And of course, God.
 
Dad has already been near coma level once because of his ammonia. The doctor put him on laculose that has helped. But now he has constant diareahha even without it.
 
It is so nice to have someone to talk to that is experiencing the same things.
 
God Bless everyone and have a wonderful Christmas.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 12/22/2009 8:06 AM (GMT -7)   
Good morning doglover. I believe it's the best part of this forum......being able to communicate with others who have been through it or are going through it. ( Most people don't have a clue as to what you are going through , I know both my family and his didn't. )The information that others can give is priceless.......doctors are just too busy to fill in the blanks and answer the million and one questions people have about the disease. This forum helped save my sanity when I was going through it. The wonderful members guided me through the process by giving me support and information that I couldn't get from the medical field.

I agree with Connie.......hospice is a wonderful organization. The doctors should tell you if it's time to call them in..........It's one of the hardest decisions to make though. If his doctors hasn't mentioned it yet.....you may want to ask about it.

My husband was only 46 years old when he passed.

Take care.........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.

Post Edited (Pink Grandma) : 12/22/2009 8:09:35 AM (GMT-7)


Clear-sky
New Member


Date Joined Feb 2010
Total Posts : 6
   Posted 2/2/2010 7:27 AM (GMT -7)   
I had a friend few years ago and he had similar condition. We weren't very close but he was a good guy and always wanted to help. I stumbled on this thread and I want to tell you don't give up. My friend had a period of time where he had problem with alcohol and liver pain, so this made things worse. I read few post where people usualy are complaining on liver pain after binge drinking. www.steadyhealth.com/Severe_Kidney___Liver_Pain_After_Alcohol_t159457.html

Did any of you had any drinking problems?

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/2/2010 11:33 AM (GMT -7)   

Hi, Clear-sky.  I think the majority of liver patients have or had alcohol and/or drug abuse problems, myself included (now clean and sober 23 yrs., but with hep C and cirrhosis.)  There is another class that has AIH (Autoimmune Hepatitis.)  There are also a few who contracted hep C from a transfusion. 

I have to say that I never had liver pain after drinking, but did have awful hangovers.

Connie


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


Tazdevil
Regular Member


Date Joined Jan 2009
Total Posts : 30
   Posted 2/3/2010 2:08 PM (GMT -7)   

Doglover1961, Welcome.

 

Having just been through this process with my father the journey ahead may be a rough one. My father was told he had 12 months to 3 years. He passed away after 14 months.

 

My father also had numerous encephalopathy turns and significant mood changes.

 

In a similar fashion to Pink Grandma my father slipped into a coma and passed away in less than 48 hours.

 

I did a lot of reading on end stage liver disease and found this forum to be fantastic support. Even from the perspective of knowing there are others out there in the same position as you.

 

In terms of what to expect – that is a tricky one. If your fathers situation is not good then it is very difficult to know what to expect. Part of my battle was to understand what the liver actually did and what happens when it does not work properly.

 

I found the information below in explaining some of the issues of increased ammonia in the body:

 

Hepatic encephalopathy is a major neuropsychiatric complication of chronic liver disease that occurs when large amounts of ammonia accumulate within brain tissues. Ammonia is normally produced by the breakdown of protein in the bowel, and in healthy individuals it is metabolized by the liver to form urea. In patients with significant portal hypertension, blood cannot pass into the liver and the ammonia enters the systemic circulation where it enters brain tissues. Hepatic encephalopathy and its final stage, hepatic coma, occur in 4 stages.

 

  • In the first stage, the patient may exhibit mild confusion, mood changes, inability to concentrate, sleep disturbances, and mild asterixis: rapid involuntary flapping of the wrists, also known as "liver flap."
  • In stage two, the patient experiences confusion, apathy, aberrant behavior, asterixis and apraxia: problems in carrying out familiar, purposeful movements.
  • Stage three is characterized by severe confusion, incoherence, diminished responsiveness to verbal stimuli, and hyperactive deep tendon reflexes.
  • Hepatic coma occurs in the last stage: the patient has no reaction to painful stimuli, no corneal reflex, dilated pupils, and assumes the flexion or extension posture characteristic of severe brain damage.

Correcting pH and electrolyte disturbances, restricting dietary protein, preventing constipation, and preventing gastrointestinal bleeding are methods used to treat hepatic encephalopathy in its early stages. When bleeding occurs in the gastrointestinal tract, bacterial action creates increased ammonia. Sterilizing the bowel by giving neomycin, a drug that is poorly absorbed from the gastrointestinal tract, may prevent ammonia formation by decreasing bacterial counts. Lactulose may also be given to help contain ammonia in the gastrointestinal tract where it can be excreted in the feces.

 

 

I hope this information helps - Come back to the forum and ask as many questions as you like.

 
 
Tazdevil,
 
The roller coaster has made its final stop...........


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 2/3/2010 2:56 PM (GMT -7)   
My sympathy on your dads passing, Tazdevil. I had problems with encephalopathy and was put on lactulose and neomycin. Later, I was able to change to xifaxin, rather than neomycin. My hepatologist said that neomycin may cause some diarrhea (added to the lactulose it was unreal) and xifaxin is not as likely to cause kidney problems. The problem with xifaxin is that some insurance carriers won't pay for it as the cost in my case almost $1,000 per month. My PA pushed them and I found it worked better than the neomycin. Having a doctor who's willing to fight for you is huge. Good luck Taz! **David**

fonics
New Member


Date Joined Nov 2010
Total Posts : 6
   Posted 11/23/2010 1:10 PM (GMT -7)   
I was diagnosed with liver cancer in 2008 and had y-90 therasphere tx. I'd like to get in touch with moderator 'hep93'. Is this possible? My case is very similar.

Thanks

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/23/2010 3:06 PM (GMT -7)   

Hi, fonics, and welcome to the forum.  You picked up on an old thread, so if you want the support of other forum members it is best to start your own thread (Hit New Topic instead of Reply.)  I'm still cancer free, 3 1/2 yrs. after surgery.  I'm considering the new hep C treatment that will become available next year.

Hugs,

Connie



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

Post Edited (hep93) : 11/23/2010 9:01:47 PM (GMT-7)

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 03, 2016 2:48 AM (GMT -7)
There are a total of 2,731,994 posts in 300,980 threads.
View Active Threads


Who's Online
This forum has 151146 registered members. Please welcome our newest member, LadyCapricorn.
200 Guest(s), 1 Registered Member(s) are currently online.  Details
LindaOZ


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer