I have had a really hard time finding information on the cycle of end stage liver disease, ESLD. The doctors said my mom was dying and she was doing terrible in the hospital. After a month they said they would do In hospital hospice and palliative care until I decided what I wanted to do. I decided to take her home and I thought she would barely make the drive- 2 days. Now that she has been home for a week she has started eating and swallowing food again. Still probably not more than 200-350 calories a day. She seems like she is getting stronger. Here is my question how long can she actually live with the Ascites? Her stomach is huge and painful and uncomfortable. She has had esophagus issues for years which some drs said was related to her alcoholism/liver problems and some said it was not related. So confusing. Could she actually get better?? Her confusion isn’t so bad but she is definitely not thinking clearly. She refuses medications. Some swelling in ankles. Her pain is in the right side and right lower back. She has had paracentesis 4 times in the past 5 weeks. How do I know how long she will live? Should I put her on a more rigorous treatment schedule?

Thank you all. Because of the move we are getting new doctors and new routines. The former doctors agreed home hospice would be better for her and gave me quite a bit of meds to tied me over through the transition from state to state with her insurance. Maybe it just seems like she is getting better because she is just so much happier here than in the hospital and that change makes me wonder if she can get better. This forum really has been game changing for me. I was feeling like I couldn’t cope and now I just read your responses and everyone’s stories and it gives me a lot of comfort. Thank you all.
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Reply to Homecare123

I believe as another poster stated. Only GOD really knows. I know this is a hard time for you and I am so sorry.

I can tell you a story about my cousin who had liver cancer. He had to have half of his liver removed. The doctors gave up on him and said he would not make it. They put him with hospice. This happened twice.

Can I tell you about 10 years later, he is still here? To God be all the Glory.

My advice to you is to spend as much time with your mother as you can, love her with all of your heart and do as much for her as you can. Put the rest into God's hands. That's all you can do.

Never lose faith.

Bless you.
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Reply to haileybug

I believe only God knows when one will die. Your mother is very sick and probably should be on Hospice to make her comfortable and have support. My mother was hospitalized in the past with a serious health problem, thought one Easter she was going to die or be left paralyzed from a possible stoke and within minutes after saying the Our Father with her, she moved, spoke and was back to baseline. She still has a lot of heath problems but we live a day at a time and pray often. The doctors were amazed and were ready to give her a potent medication for a possible bleed. The doctors gave my father two years to live and he passed within four days. I am grateful his illness was short lived and he had a peaceful passing with his family present. Enjoy the time you have with your mother and when the time comes when she passes it will be a blessing for she will no longer suffer and will be at peace, that is how I got through my dads death, although it was difficult I had my faith. I know when my mom passes my heart will be broken, but I certainly do not want her to suffer and I want her at peace. Wishing you and your mom peace and strength as you continue with this difficult journey. My thoughts and prayers are with your mom and you.
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Reply to earlybird

The ascites will infringe upon her shallow breathing and she may either feel short of breath needing oxygen or get sleepy from retaining carbon dioxide. Is she on hospice care? Get ready with the morphine. She is suffering and refusing now but as she gets sleepy, there are some liquid meds
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Reply to MACinCT

My dad had liver cancer. Drained five times in four weeks. Stopped eating because things felt odd in his mouth. Pain in his side.

He lasted six weeks from diagnosis to death. Please got your mom set up on hospice care at home. They can give her meds to make her transition more comfortable.
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Reply to MJ1929

I'm sorry you are going through this, you are at a very difficult juncture with your mom. No, she is not going to get better. Please consider in home hospice as they will support both your mom and you. They will keep her comfortable, and that is the main thing right now.

My dad died of liver failure after colon cancer spread to his liver. We had in home hospice the last several months. My dad had some decent days during those months where he could be up, and he ate some, and would talk to his family. But he mostly slept. One time he asked the hospice nurse if he would know when he was about to die. The nurse told him, if you are thinking about it, it's not going to be today.

This proved true. When he got closer to the end, as his ammonia levels increased his mental status decreased until he was barely conscious. The last two days he did not wake up, he was just breathing very shallow. Then he died.

I hope your mom's journey will be peaceful. I also hope that you can take care of yourself during this difficult time. Sending you a huge hug.
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Reply to ExhaustedPiper

My SIL is a GI doc---he has spoken of the sadness and pain that goes along with ESLD.

The liver is absolutely necessary to life. Personally, if this were my mom, I'd be looking into palliative care and only doing fluid draws for comfort, I would NOT make her go through a more rigorous TX.

I'm sorry she's so sick. As you state she is incapable of making her own decisions--you may have to do this for her.

Docs will push TX all the way to the end, unless the patient or family decide they are done.

You should have a serious talk with her GI doc and ask the hard questions. One is, would YOU want to be kept going with aggressive treatments yourself??
Helpful Answer (1)
Reply to Midkid58

Your Mom is dying but no one can really give you an idea how long that will be, days, weeks or months. This is very individual. The doctors and hospice personnel will be your best guide as they are seeing her and assessing her. I am glad they are removing the fluid because it is indeed very painful.
I am assuming you have hospice care in the home?
Treatment toward hope of cure doesn't happen in hospice, and I think you likely DO understand that your mother's ESLD is now too progressed and has moved, because of all the damage, to truly End Stage.
You should speak with your Mom's doctors and her hospice team. They will know more than we do. As a nurse I can tell you that putting your Mom through rigorous treatments of any kind would increase and likely prolong her torment.
I am so sorry. Do speak with your Mom's medical personnel. They know her best and can guide you best in what to expect, and answer all your questions.
Helpful Answer (1)
Reply to AlvaDeer

Hopefully someone will chime in. But from what I do know, the huge stomach is the last stage. Do you have Hospice? If not, I may bring them in.
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Reply to JoAnn29

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