Update on liver Dr. appointment.

Your mother is most unwell, is facing a difficult time, and has difficult decisions to make. It would be totally understandable if she changes her mind frequently about what to do. Perhaps you should stop thinking that “I’m a fighter” is a permanent decision to have major treatments, and just go with what she thinks at the time.

None of know if we will be dead tomorrow, make her time now as good as you can.

My friend’s husband had a liver transplant. He had cirrhosis brought about by years of heavy drinking. He no longer drank. The transplant went well, but his medical condition afterward was never good. He had many falls, could barely get around, his thinking wasn’t clear. When she could no longer care for him, he went to the VA hospital. He said he wished he’d never had the transplant because he never felt well afterward.

If her decision is not to be intubated, she’s not going to be able to go down for the spinal surgery and heart cath to even make it to a list. I think she knows that.

I'm so sorry you are having to go through this. Liver transplants are in better supply than many organs (since you can donate part of your liver). I have seen how much fluid they have to drain with liver failure and it is staggering. It could be getting close total liver failure at this point. Anthesisia on someone with a failing liver can be tough and maybe she realizes she is not strong enough for surgery and the rehab period. It can take up to three months to really begin to recover from a major surgery and she is already weakened by a infection. She could be concerned her body will reject the transplant and you do have to take anti-rejection meds for the rest of your life. What about her other organs like her kidneys? Does she have RBC problems?

It seems like even though she is 67 her body is much older. It really depends on what you do to your body in your younger years. Did she smoke or drink a lot?

Lea 's husband was lucky it only took a year to get a transplant. My neighbor aged out at 75. She passed within a year.

What stage is ur mother in? Usually, once the belly starts to swell your in the final stages. I would also think getting a live donor would not be easy.

A living person cannot donate an entire liver, for obvious reasons. Only a deceased person can. My DH had a liver transplant going on 2 years ago, from a deceased person in Arizona at the Mayo Clinic. The liver can be kept "alive" for a few hours once its harvested until it's time to transplant. But my dh waited on the list for a year before he was called. It was a huge ordeal, in reality, and we were staying in a hotel for 7 weeks while he recovered from the 2 surgeries that were required. Then he had to recover for another few months once we returned home. Not an easy thing to go through at all, and he was walking 5 miles a day beforehand. He STILL had a bunch of complications; drop foot, a blood clot, a blockage in his intestines requiring a 2nd emergency surgery, etc. And mom would need 24/7 care for the duration, period, or the doctors wouldn't agree to do it.

In any event, I can understand your mom's desire to bypass this surgery, 100%. The medications ALONE he had to take were mind boggling, and changed constantly. And still do 2 years later, with monitoring via blood tests every 2 weeks. I kept a binder of notes just to keep track of his meds....bc rejection is a huge concern with liver transplants. He had 152 staples in his stomach area.....times 2 for the 2 surgeries! At one point he was taking 54 pills a day that I had to sort out and put in pill boxes that barely contained them. Nobody realizes what's involved with a transplant.....its gruesome.

Best of luck to her with palliative care and whatever comes next.

Cdavis

Read “Being Mortal: Medicine and What Matters in the End” by Atul Gawande.

It might help you and mom.

My mother is 99, they want her to do dialysis, she just laughed in their face, it is bad enough that they convinced her to get a pacemaker at age 98, she is of sound mind so she made both decisions.

Support and accept her decision, why put her through more hell?

My plan would be to die. Were I her that would be my choice, yes.

I am 81. I have just had my second diagnosis with breast cancer.
I refused removal of nodes.
I refused chemo.
I refused radiation.
I accepted a simple lumpectomy, bounced right back, will carry on until when/if it spreads and then will enter palliative care (as in give me the GOOD drugs; I have waited so long) and then hospice. All my family is aware of my wishes. All know this is what I want.

I would never at this point in my life accept tube feedings, dialysis, heroic measures of any kind, any transplants, etc.
I am 81. We all die. I have been very lucky in my life and am very grateful.

Please support this.
My personal opinion is that pursuing these things given her condition means a meaningless and torturous prolonged death in all odds and likelihood. That is my personal opinion, and who knows, I could be wrong.
But if this is her choice please support her. I think it is a well thought out decision.

CD, I'm very sorry, this has to be so hard on you, and your family. Your mom sounds like she has a lot of medical issues.

I can't imagine how uncomfortable she must be.

I do know that when the liver is failing, it doesn't detox the poison out of are blood, and cause dementia like symptoms, which could be the reason for the , one minute wanting to fight, and the next giving up.

Good luck, and keep us posted