We saw the liver dr today. He said her best bet is to use a living organ doner. But she has to see a spine surgeon first just for a plan on how she can comfortably lay flat with her compressions she has. He also wants her to get a right heart cauterization. he said then she's got to try to improve on her walking prefer without a walker (again she's so young) and then a surgical team would have to review to see if her PVT clots (multiple) would be an issue even connected the donor liver. So yes, lots of steps, but......BUT.....immediately she said NO, she does not want to be intubated - which confuses me, I get the preference, but I don't get how she thought she would be put under for surgery otherwise. HH nurse came by today, said when she is ready they can send a referral for palliative care. Meanwhile, she has recovered from her paracentesis infection (cellulitis) and we are scheduling another for next week because her belly is growing. But she is losing weight, so we are watching that HH nurse and myself. I am frustrated. I don't mind respecting her wishes, but her behavior just was so awkward at the dr office today and it really through me for a loop. Especially when yesterday she was talking about how she is a fighter (well this isn't fighting) and how she was here so she could get a transplant. Anyway, rant done. I'm just so frustrated. So now the plan is to die I guess. Anyone else deal with a similar situation have any advice?
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
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.
Support and accept her decision, why put her through more hell?
But I do respect her wishes to the best extent I can for her safety. I'm angry. she wants our son to come home in July and then she said she will be ready to die, but watching her die is something nobody should experience. anyway I think I am rambling. But she has not once tried to fight yet so it makes me feel , well, I'm not sure how I feel about it.
Read “Being Mortal: Medicine and What Matters in the End” by Atul Gawande.
It might help you and mom.
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.
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.
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?
None of know if we will be dead tomorrow, make her time now as good as you can.