What to do next?

What to do now? My sister needs a liver transplant. She was recently sent home from the hospital because they want her to attend a/a meetings because she drank for 6 months. Im new to this. Its like they just kicked her out of the hospital. We got her a hospital bed, and a wheel chair . Shes been home for about 3 daays and living at my house now. She is suppose to go to meetings but she is too weak to go. She has alotof fluid buiild up, not eating or drinking and she is sleeping all the time. How am I suppose to get her out to do the meetings. I dont have the know how to take care of her. I believee she needs to be in the hospital to be taken care of by the professionals. What to do?? All we can do is try to make her comfortable.

Hi TW,
Welcome! You found a good place for help as a caregiver for your sister.

It sounds like your sister was evaluated for a liver transplant, but not eligible until she meets her 6 month sobriety requirement. This is standard for alcoholic's needing a transplant. Can you tell us a bit more about her lab results and MELD score?

You will need to get her to AA meetings. I know she is tired and very sick, but it is very important not to delay. Can you let us know the transplant center she was evaluated with? Again, welcome. Big Hugs,

Hi TW:

Rest assured you are not alone. Listen to what the people on here are saying and do the best you can. I am going through the same thing except my husband has not seen a liver specialist yet we are in the process of doing that now.

Just take a deep breath and read everyone else's post and you will learn a lot. They are hear to help so just ask them they know what they are talking about.

Sasha's Mom

Thank you for all replies!

TW, You sound like you are her full time caregiver. Can you tell me what you meant with GI bi-pass and medications? Maybe a little more detailed history will help us assist you.

A lot of us have been caregivers for a loved one several years, before and after transplant. ESLD can be a long road. I don't know what other family or friends you may have to support you. Some planning and coordination on help for her medical appointments, AA, meal prep, and care you probably want to get in order. Get copies of her medical records and keep them in a 3 ring binder. A lot of us caregiver sorts get our information by doing it, finding out what did and did not work. A lot of experience here from the trenches, as it were. Please read some recent threads that have much info given.

She needs to eat, TW. Try Ensure, smoothies, yogurt, ice cream, applesauce. Some things go down easier. Basically, Xifaxan and Lactulose will help clear the toxins through elimination. Does your sister have HE? That is hepatic encephalopathy and Xifaxan and Lactulose are prescribed to help deal with that. She should have at least 3-5 loose bowel movements per day if she has HE. Everyone is different on what works and how much Lactulose it takes. Some of the sleeping may be due to HE.


At MELD 38, your sister's condition is dire. I am sure you know this. Big Hugs

TW,

Welcome to the forum. YOu ahve come to the right place for education about liver disease and for support as a caregiver.

You says you don't know how, and as themiz said, you have taken to it quite naturally. You have provided shelter and gotten her the wheelchair and bed, so now the fun begins.

You wish she was going to stay in the hospital, but they have sent her home for the 6 months sobriety waiting period. And so it is going to be rough. She will be tired, weak, and need a lot of help.

I ahve been there with my partner, Mike, who finally got a liver after his 6 months sobriety period and being very very ill. We did not think he would make it the 6 months and it was impossible for him to get to the AA meetings. He could not drive, could barely walk, could not control his bowels, and barely spoke. BUT, he got to those meetings many times a week!!!!! I drove him, got him in the building, took the nearest chair to the bathroom, and stayed in the parking lot while he was in there. The members were WONDERFUL. They helped him if he needed help, they took him to the bathroom, they saved the special place by the door, and they talked to me before and after the meetings. I wanted this to be his journey so after the first day I didn't go in. I wanted him to be able to say anything that he needed to say without my being there to hear it. Maybe I was the problem after all!

He didn't say much, the guys told me, but before and after the meetings, in one on one conversations with the AA folks. He got to care about them, and their stories, and they about him.

And, with ongoing sobriety, and the medications they put him on for HE, for blood pressure in the hepatic artery, for the fluid build up, his MELD score came down for a while He got a little better and started to make some sense of things.

But he was very weak.

He had to go to the hospital during that time about a week a month...his kidney's failed him, he got really high fever and had sepsis and they were afraid he would slip into a coma, he had a pancreatitis attack and was screaming his head off, and then the kidneys failed again. They would give him fluids and albumen and were thinking about putting him on dialysis but the kidneys perked up again.

So though they sent your sister home, it means she was stable at the time though very ill with a MELD of 38.

Unfortunately, they have a strict rule about alcohol and liver transplantation in the US. Since alcohol is so toxic to the liver, they know that someone who would drink after transplant might ruin that nice new liver, and thus they go on to a different person who has demonstrated they intend to live a sober life after tranplant. Some countries are less strict about this, but UNOS is very clear.

Some people with a lot of belly fluid are drained pretty regularly. Keep an eye on that.

If your sister is not eating or drinking anything and unable to take her medicines, she may be in trouble quite soon. Have you called hospice to see if they can help you during this 6 month period when you don't know how it is going to work out. With a MELD of 38, she could have a crisis at any moment.

At the top of this forum are some educational websites that might be good for you to check out.

My partner made it through the 6 months and go his transplant after all, AND they found out he had liver cancer, so the operation was the only thing that saved him. I hope your family has good forutune as well.

Hugs,
Mama Lama

TW,
I was concerned when you said she was not drinking or eating. Her condition is very serious, but we do see people make amazing recoveries. Good thing you are following through on the records. They come in handy so many times. Are her children minor's? Keep in touch as you can. Big Hugs

Hello TW. First let me say that I am so sorry it has come to this point with your sis - my heart truly goes out to you. I hesitated in replying because what is happening with her hits very close to home and I have to admit that I have tears in my eyes as I am writing this. You asked about her chances and I really hope that you are prepared for an honest answer. Your sister is exactly where my fiance was 4 months ago - total renal failure, coma, fluid, dialysis. He was in the coma for 11 days and then he was gone. Yes, miracles can happen. If you have any questions at all, about anything, please don't hesitate to ask me. You and your sister are in my thoughts and prayers right now.

In short, yes they can happen. My thoughts are with all of you.

Ziff

Thank you and yes I want to hear the truth about all of what to expect and what to do just don't know

David is right, there is no way to tell what the outcome will be for your sister. And even though your sister's current condition sounds almost identical to what Robert's was, it does not mean that their outcomes will be the same. Could you answer a few questions for me? If you don't want to or can't, that's absolutely ok. But I'd like to be able to give you the benefit of my experience so that it might help you through this.

The last MELD you mentioned for your sis was 38 - that is very high, has it changed? Have they told you she is in total renal failure? Is she producing ANY urine at all? She is currently in a coma - have they done an EEG? If they have, what did they say about the results? She is on a ventilator - is she taking any breaths above the settings of the machine? How is her color? Is she responding at all - to painful stimuli, to her name? Does she open her eyes at all?

I know that's a whole lot of questions, but the answers would help with any suggestions, info, or advice I may be able to offer. I did want to say one thing - keep talking to her! If you are not able to be there, call and ask the nurse if she/he could put the phone up to her ear - even just to say "good morning" or "good night" and "I love you".

We'll update my sister is still in ICU in Pittsburg and she is not likely to make she just keeps getting worse she is so swollen up her skins feels like a sponge. Wish it was this way but they said they have did everything they can do she just keeps going two steps back everyday they took her off dialysis last night to change the place they put it and now they say her blood is to thin they are afraid that she would bleed out so they are going to try to do it again tomorrow. She has another infection in her body they believe it's in her belly they don't know yet until they get all the test back. She is also seeping fluid though her skin now the odds are so against her it makes me cry every time we go to see her at the ICU unit. Also, they want us to make a decision on what to do. It will be the hardest decision in my life.

Honestly this is not good news. Her window of opportunities are getting slim to recover and you are gonna have to do what she would have you do. Not what you want but what she would want. Is she coherent? Has she signed a DNR? Will she? This was the first thing I done when I left the hospital with my prognosis (Death Sentence). Actually my father assisted me in handling the paperwork. Tie up any loose legal ends and funeral arrangements if you haven't already.

I personally don't want to linger beyond a period of time I have set, should things go bad. To each their own in those matters. I understand the difficulties and the extenuating circumstances with her children. You have to be strong.


Ziff