end stage liver disease

My brother Marc is 48, and has just been diagnosed with end stage liver disease. His doctor said his 'window of opportunity' is closed. That there is nothing they can do for him. I refuse to believe this is true. He takes 30mg of lactulose 4 times a day, and lasix twice a day. the lasix is the water pill, that helps him get rid of water that he is retaining, but it's hard on the kidneys. The lactulose make him poop often, ridding his body of toxins his liver can't get rid of. He has gone into a coma 5 times.......his ammonia level has been up to 600....the norm is between 5-10. The ammonia causes him to go into a coma, because of proteins in his body....I can't remember the medical definitions for all of this........PLEASE if anyone has any info on this, or if you know of another site that can help .......PLEASE PLEASE EMAIL ME @ [email protected] He doesn't eat any meat, and very low salt.......even so he still builds up proteins causing his ammonia to rise, then the swelling of the brain, then coma........

Has your brother considered a liver transplant? My brother in law just had one he is doing great.

Ajustiniani

I don't have a lot of information on my mom.  We had taken her to a liver transplant hospital to be assessed and put on the transplant list.  We were there for about 4 weeks and she gave up.  She said she was tired and wanted to go home.  She refused all medication and told doctors she wanted to go home. 

She has been home for about 4 days but she spends her days and nights asleep.  She does not want to eat and when she does she only has a couple of bits.  She refuses to take medication.  She has not taken the lactulose since last Wednesday. 

I want to know what to expect, how long will she be like this, and what the next step is goingt to be.  Hospice has been wonderful but they can not tell what is going to happen next.

If you have any information or if anyone has information on what her days will be like and what to look out for please, please let me know.  Thank you.

Lyd,

The only thing that I can say is:  What would you do if she were your child and refused to take medication that you knew she needed? 

Sometimes we have to parent our parents, and spouses.  I remember many, many times that I had to raise my voice, get very tough, to reach Mark.  It's a difficult situation. They don't feel well, so they don't want to deal with anything; but, getting a little food and medication in them makes it easier to get a little food and medication in them.

The other option, because this disease will kill her if she doesn't take care of herself, is to have her re-admitted to the hospital.

I would also recommend that someone in the family be given Medical Power of Attorney. When she can't make rational decisions about her care, a family member can.

God Bless. I'm here if you have any more questions, or just need to talk.

Be careful how you interpret what the home care nurses are telling you.  Hospice is about comfort care for terminal patients. Their goal is keeping your mother calm, comfortable, and unstressed while she waits to die.  Don't take their advice as the best way to treat your mother's condition. They aren't there to provide disease management; that comes from her doctors.

Mark is doing pretty well, especially when you consider that in May 2004 he started receiving hospice care and was not expected to live through August.  We had his family fly in twice between January and June, because the doctors were pretty sure he wasn't going to make it.  Thank heaven for stubbornness - although, there are still days that I could rap him in the head with a frying pan!    (Did I say that out loud?!)

It was rough, but sometimes (looking back) it was really funny.  One day, in January 2004, he was in-patient and his ammonia levels were sky-high. (I think it was the day that he went into the coma.)  He was disoriented, dizzy, and just a royal pain in the butt.  At one point, he decided that he needed to use the bathroom, so I helped him out of bed and started leading him to the bathroom.  (It helps if you understand that I'm 6' and weigh about 135lbs, dripping wet.  Mark is 6' and weighed 260+ at the time. Got the picture?)

Okay, we're staggering around the room, now. I have no idea who was leading whom, but Mark had to pee. He tried beside the standing wardrobe and I pulled him toward the bathroom, "No, honey. The bathroom's this way." He tried IN the standing wardrobe and I pushed him toward the bathroom, "NO, honey! This way!"  He tried behind the door to the room and I pulled him toward the bathroom, "NO HONEY!! THIS WAY!!" After, what seemed like HOURS of this, we finally got to the toilet, got him situated, and HE COULDN'T GO.   I can only imagine what it looked like to his roommate - us staggering like drunks all over the room and Mark trying to get his pants down every time we stopped.

He was in horrible pain before the transplant. I used to rub his legs and feet, or put cool cloths on them, every day.  The doctors had to drain the fluid from his abdomen several times and he, to this day, has some pain from one of the procedures.  Now, with all of the side effects from the HepC treatment, he has a long list of pains and problems that changes every day. But we keep on keepin' on. His two youngest sons live with us now, so it's a three-ring circus!  I'm surrounded by testosterone!

Cheers! Keep your head up - you've already seen your shoes and the best view is ahead of you!

Yup, we've been at this, in one form or another, for just over 2 years.

I don't want to sound hard, but your mother is probably not going to live.  (Never say never.) She can improve and feel better than she is now, but advanced liver disease is considered terminal.  Her best chance, in my opinion, is a liver transplant.  Everyone's job, right now, is to keep her as healthy as possible until that happens.

If she hasn't taken any meds and isn't having bowel movements, her ammonia levels are probably way too high right now.  Lactulose can be given as needed.  I would strongly recommend that you don't wait.  Mark was really good about taking it, so I didn't have to worry about getting it into him.

Can you mix it in her juice or soda?  Mark suggested that you take a taste and see what you think you could hide it in that your mother would drink.  Remember, it is impossible to overdose on Lactulose.  You can't give her too much, if that eases your mind.

You know your mom better than anyone. Try hiding her meds in applesauce or pudding. Sneak the lactulose into her tea or juice.  If you can get the Lactulose into her, make sure she's also getting fluids so that she doesn't get dehydrated.  Try to stay away from plain water, it's bad for fluid retention and sodium levels. Juices are good; Ensure is good.

No one can predict how long someone with liver disease will live. I can tell you that not managing her complications will speed up / increase the damage.  You have two choices: do whatever has to be done to improve her symptoms, or keep her comfortable and let her go.  I can't advise you which is right; there is no right or wrong.

God bless. Let me know if I can help.

Well it is another hard day with my mom.  She is not doing so good.  She is asleep about 97% of the time.  I feel

that we are loosing her moment by moment.  It is so hard and I don't know how to handle this.  I am extremely exhausted.  I am trying to hold on and be strong but all I want is her pain to go away. 

Thanks for you concern and thoughts.

Lyd