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Has anyone had experience in how the decline works in steps?


Mom did not drink alcohol it was from extremely bad eating habits and no exercise. From what i read it doesn't seem like the decline is not painful and I'm struggling with that. Any advice is helpful. TIA

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I’m so sorry that you’re going through this.

My oldest brother died many years ago (2013) with liver failure. His was related to his addiction issues.

Wishing you peace as you continue on this difficult journey.
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I am so sorry.; you are correct that cirrhosis may be quite painful and debilitating. More so for some than for others, for some basically sleep their lives away.

Your Mom, if terminal and without hope of correction or cure needs to discuss palliative care (where you can get more medications), Hospice when there is less than six months expectation of survival, and perhaps, if your state allows it, MAiD help in dying. Also can look into VSED (voluntary stopping eating and drinking). The VSED handbook is quite good and this can be done anywhere. It is on Amazon about 14.00 and is Called VSED Handbook, written by Kate Christie, who helped her mother die in this manner. There are also guides and doulas now for people hoping to end their lives when pain is no longer tolerable and life no longer worth living. Ms Christie's book has a good glossary and appendix with information.

I hope your mother's paperwork for MPOA is in place now, and anything else she needs to accomplish. You cannot tell the progression, and the MD is the only one to give you any clue as to full diagnosis, treatment and prognosis. EACH INDIVIDUAL's disease is as unique to him or her as their own fingerprints.
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cdavis76 Feb 28, 2024
thank you for the information. I will look into each one of these. Information is comforting to me. and if it helps mother then perfect.
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Wait until you have seen the Dr.

And--take good notes. I promise you that whatever the doc says, you will not be able to remember much, after the fact.

My DH had a liver transplant 17 years ago. He had HepC, and was not really considered a 'good' candidate for a transplant, since at that time the tx for HepC was brutal and had poor outcomes. He developed Primary Liver Cancer.

We kind of forced our way into the program and got him listed.

Unless your mom is under 70 and meets all the criteria for a transplant, they won't even try to list her.

It sounds like you have a good handle on her current care. Keep that up, enjoy the good times you can still have with her. Honestly, until she has a complete workup, you can't make any plans.

I know with my DH, after the dx of liver failure due to the HepC he was given 6 months to live. He was 54. He never did get 'sick'--when the call came that the donor liver was available and it was 'his', we simply lived day to day. I took a very healthy man to the hospital and brought home a very sick one.

At age 72 (now) he would not undergo a second transplant. They are life saving, but at some point in your life--you have to weigh out the pros and cons.

As far as Hospice--the 6 month rule is not a hard and fast one. My MIL survived a year in active Hospice. After being told she had maybe 3 weeks. Truly, this kind of dx is very subjective.
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cdavis76 Feb 28, 2024
to be clear she was diagnosed with this almost 3 years ago. After doing weekly taps for almost two months we moved her here because I couldn't keep driving. so 2 liver doctors have told her she doesn't qualify. I keep telling her we just need to keep working on making your heart stronger, but the last couple of days it's been hard to get her moving. and yes I wholehearedtly agree with you, I'm taking in the good as much as I can.
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A friend of mines husband died from liver disease in November, he was uncomfortable but not in pain. Slept most of the last month. I think what was hardest was the mental confusion
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cdavis76 Feb 28, 2024
Thank you for sharing. I'm glad to hear he wasn't in pain.
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No matter how a person acquires cirrhosis, it's a terminal condition that is only cured with a liver transplant. My husband had non alcoholic cirrhosis also, but with no other preexisting health conditions, and developed liver cancer which is common. The tumor was ablated, and he was put on the list for a transplant in 2021, getting a new liver in 2022. He'd had no other symptoms of cirrhosis at that time, like ascites which is fluid build up in the abdomen. That fluid can be drained out of the body by a process called parascentesis.

Here is a link to the Mayo Clinic website with a video explaining the progression of disease with the liver:

https://www.mayoclinic.org/diseases-conditions/cirrhosis/symptoms-causes/syc-20351487

If mom is not a candidate for liver transplant, and the end of life symptoms progress to the point where she's suffering, you may want to get a hospice referral for her from her PCP. I'm sorry you're both going thru this. Sending you a hug and a prayer for peace.
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cdavis76 Feb 28, 2024
Thank you. Yes she has many other preexisting. We just confirmed her heart isn't strong enough for a liver transplant. Changing her diet and making her take her water pills properly after moving her here helped us not have to get the paracentesis (tap) each week. Nobody can give me a clear idea of how long she may have. She still talks normal and everything, until the last couple days. We see her new PCP tomorrow so I may ask about a hospice referred since she doesn't qualify for a transplant. I thought the doctors had to say she has 6 months or less before they gave that kind of referrel.
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