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?
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.
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.
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.
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??
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.