Mom at end stage liver failure, wondering where to go from here

The last few months have been kind of a blur. My Mom has end stage liver failure. She was actually diagnosed about 5 and a half years ago, she quit drinking for about 6 months but then slowly went back to it. She found her reasoning in that it helped her cope or it helped with her blood pressure. Anyways she was prescribed diuretics at first and then all symptoms stopped. I suppose that's about when she started drinking again and has lived without complications since. Now to the present.
She has been going in for the paracentesis since end of November. It started about every two weeks and since about new years its been about every 6 days. I have been reading what I can just to have an idea of what to look for. She does not have a primary care physician so this has been a very difficult process in that respect and trying to get any information. Multiple times after going for the paracentesis, her sodium levels would be low. I began to think she had hepatic encephalopathy as she seemed confused about events that had just happened and she was beginning to get the shakes as if she was always cold. Last Tuesday my dad decided he would take her in the next morning for the paracentesis. She threw up that night and it was very dark. She said she was drinking juice and he assumed that was the reason. By the time they arrived at the hospital she had thrown up one more time. At the hospital, she threw up a large amount of blood as she had bleeding in her esophagus. They were able to band the areas that needed it, there were a couple. The next day I realized how bad the HE could get. It was awful seeing her like that. She is still in the hospital. She is becoming more coherent a little more each day but still very drowsy most of the time. She has a lot of muscle wasting and now is working with a physical therapist at the hospital to try to regain some of her strength just so she can be released to come home.
I'm not sure what I'm asking or if I'm just venting, I don't know what other information I am leaving out that may be pertinent. She has in the last two weeks gotten some sort of medical assistance, not sure medicaid or what.
Any feedback is greatly appreciated.

Hi, Tq85, and welcome to the forum. You seem to be very knowledgeable about ESLD. As you must know, nothing will help her if she continues to drink. Do you think she would go into a rehab? Is she taking Lactulose for the confusion/assumed HE? Her low BP could be the result of low sodium.

She really needs to get a PCP to refer her to a hepatologist. She would not be considered for transplant until she has 6 mos. of documented sobriety in AA or outpatient treatment. Perhaps one of the docs seeing her in the hospital could recommend someone.

I suggest you read the info in the thread entitled Hepatitis Resources. It touches on all types of liver disease and is pinned at the top of the forum page. There is a thread for support and info called Caregivers Sharing. Please check that out, also. And remember to take care of yourself.

Hugs,
Connie

They did say she has HE and she has been taking lactulose since Thursday. I did read that she needed documented sobriety, which a couple months ago the discharge nurse or doctor when she was in the hospital told her she just had to wait a year to be put on a transplant list without saying anything about AA meetings or the like. So I did ask the doctor about this also and he just said he would talk more about this with us when it came time to discharge her this time. Unfortunately I can't be there all the time and while I live close I don't live with my parents and I have two girls to take care of also. Sometimes if I'm not there,I don't know how accurate the information is when its relayed thru my dad. And I need to remind him to sleep and such too.. I know she would be willing to go to meetings, but its getting her healthy enough to get there. Right now she is very weak.

 I can't predict how the medical community will deal with the dilemma of her getting healthy before moving on to sobriety . Most everyone I've seen on here had to fight the addiction and liver disease simultaneously . The trouble being that when someone usually does something about getting better it's brought on by extreme illness from the liver issue . Forced to face the fact the addiction is killing you , so to speak .

 The medical community generally views alcoholics with skeptical eyes and a bit of disdain , After all we usually know way ahead of time that the addiction is killing us or at least having some nasty effects . We chose to self medicate for all our problems mental and physical . Physician's often take the stance that we neglected our bodies and come complaining when our form of medicine no longer works . I'd venture to say you want ever hear that from one but be assured that's what it comes down to .

 Lasix and Aldactone are often prescribed for fluid issues and getting the combinations of dosages are essential . Lactulose and Xifaxin are to combat HE in most case . Down side of using diuretics is that it can cause kidney problems so her meds will need to be monitored to ensure she gets the correct dosage ( HE doesn't help that situation ) . You mentioned paracentesis and the fact they are monitoring albumin . I can tell you that when I received paracentesis they always administered Albumin afterwards . There is a ratio to be given by the volume of fluid removed as far as I know .

 A. Ziffle

   

TQ,
I am sorry that your mom is suffering from liver disease. The others that have given you good information. The best chance your mom has is to stop drinking. Hopefully, she can get into a program to assist her. Mr. Ziffle has been through all of this, and has stopped and regained his health. He can offer valuable information about his journey to health. Also, how old is your mom?
As the others have said, welcome to Healing Well. Sorry that you had to find us.
Emma

tq85 , As you see the HE thing is highly unpredictable as with the rest of liver disease . It keep's caretakers on their toes and at the edge of insanity also . You have to learn how to not let this get into your mind and wreck your own life as much as possible , We have a nice group of caretakers here who have been through it all . I swear when I listen to some of the stories it makes me whence because I was that person ( The patient ) and it was my wife ( the caregiver ) . Remember you are the only stability in this situation for so many people , You can't afford to be caught up to deeply in this .

Minimize the damages as much as possible right now . Get a pen and paper and make a list of things you need to do .

 Examples : Need to * Gain access to her medical records , Create a place where your father can store them ( Box or Binder ) , Get the ball rolling with Social Security and Medicaid / Medicare , Start researching retirement homes in the area , Find a mayo clinic or hospital that has a transplant department , Get her started in AA now , Get a pill box labeled for weekly/daily med distribution , Make sure her legal affairs are in order should something happen . I'm sure I missed something and others will add more .

 I know it's seems daunting but you guys situation isn't totally doomed , You just got to clear your head and get organized . Have you considered moving mom to a home closer to you ? Hope this helps .

A. Ziffle     

I definitely know I need to keep paper with me at all times. Once the doctor is there I can barely remember half of what I want to ask especially after hearing whether she's doing good or bad.
Thank you so much for all the responses. I have some organizing to do over the next few days...

If your mother isn't taking xifaxin along with lactulose, she needs to have the docs prescribe it. It will help the lactulose with her HE. Xifaxin is an antibiotic that helps lower ammonia levels. At one point, I was taking 8 doses (30 cc) of lactulose each day. It kept me on the toilet, but at least I was cognizant of what was going on. You cannot overdose on lactulose, but you need to stay hydrated, as constant diarrhea dries out your system.

Definitely a regular part of her medications...and yes, the xifaxin that David speaks of, works in tandem with the lactulose and will make a huge difference. If you wait until the confusion and disorientation become apparent, then you have to play catch-up and give twice as much lactulose or more.

Remember this, the sick liver can't process the toxins that build up in the body and the resultant ammonia is what causes hepatic encephalopathy. After repeated hospitlizations for HE I asked the doctor what to do in the future to avoid the ER, he said "lactulose, lactulose, lactulose" and that's exactly what they do in the ER, albeit sometimes rectally.

At that point the patient usually isn't conscious enough, nor is it safe enough, to give it to them orally. Trust me, she won't want to have it rectally, or even through an NG (naso-gastric) tube if she can help it.
So that may be a bargaining chip if she starts to refuse to drink it.

Good luck and keep us posted, but God knows you have your hands full.

Hugs, Mae