End stage liver failure: Mother-in-law wants to keep fighting

@dallains, Welcome to Mayo Clinic Connect where patients and caregivers share their experiences, find support and exchange information with others. I am sorry that your first entry is about your mother in law's end stage liver failure. I am a liver and kidney recipient, so I can understand how difficult this must me for you to be witnessing.

When my mom was in Hospice Care, we (her children) were provided with resources and support so that we could spend quality time with her during her illness. Hospice care provides services by a team of health care professionals who maximize comfort for a person who is terminally ill by reducing pain and addressing physical, psychological, social and spiritual needs. To help families, hospice care also provides counseling, respite care and practical support.

Have you had an opportunity to talk with anyone on her care team? Are you able to visit her or speak with her? How is her son (your husband?) handling this?

It's been a long road and she was stable a few months ago and then got covid which took out the remainder of her liver that was working. She's been in and out of hospitals locally and due to visitor restrictions it was very difficult for her to not see her family and she was not getting the proper care she needed. She just wanted to be home with her family which is where hospice came in. Now that she's had a week with her family she's questioning if she's ready to give up or not. We have an appt with mayo that we scheduled a month ago while things were still ok but it's a 5 hour drive that we aren't sure she can handle but also want her to have a fighting chance. It is very difficult to navigate

Hi @dallains I am glad you found this community on Mayo Connect. I am Scott and I was my wife's caregiver during her 14+ year war with brain cancer. The last 14 months of which was spent in home hospice.

Your post brought back many memories of those times. I just wanted to add my perspective from what I learned with my wife during those times.

First, she never, ever gave up. She continued to fight for the best quality of life she could have every day. When her doctor prescribed hospice he told us it might be 2 weeks, but she received that great level of care for 14 months -- and hospice gave her a much improved quality of life and medical services over her prior healthcare. Having her care in home was a real benefit to her. Travel, even to a doctor's appointment, was extremely difficult and those ended. Her management of her pain, concerns, fears, etc. were also much improved during her months in hospice.

Also in my wife's case, she always made choices of quality of life over quantity and was certain she did not want to be in hospitals any longer, but preferred her home and and our bedroom.

I'm happy to answer any questions you might have.

Strength, courage, and peace

@dallains, This has been a long road, indeed! Your dear mother-in-law sounds like a strong woman. Liver disease can be so complicated.

I transplanted 12 years ago at Mayo Rochester. I had PSC which affected my liver, and also my kidneys. I was in Kentucky, and had to be removed from the active transplant list for possible cholangiocarcinoma. Unable to get an accurate diagnosis, I was referred to Mayo, however I missed my appointment due to acute kidney failure / ICU / and potential brief stay in Hospice Care. After I was stabilized and on emergency dialysis, I was flown to Mayo Rochester from Kentucky, and spent several more weeks in the hospital. No cholangiocarcinoma; needed a wheelchair and walker; gained strength; then blessed with a simultaneous liver and kidney transplant in April 2009.

Maybe being home will give her renewed strength for the journey. Is medical transport an option?
Is this her first Mayo visit? Is she on transplant list? Which Mayo?
When is the appointment?

I'm glad to have found this community as well! I'm sorry to hear of your wife. She sounds like a strong woman. Yes, my main concern is her quality of life. It's no life to live if you're miserable.

You've had a long journey as well and happy to hear you're on the other side of this. This would be her 1st appt with mayo and it's this coming monday. Mayo in Rochester. We've looked into medical transport and have options. We are in Wisconsin and drs here don't think she would survive a transplant but Wisconsin also doesn't do partial transplants. I don't think she was ever put on the transplant list and for the life of me I can't figure out why. She had a lot of fluid buildup and bleeding in the last 1-2 months that drs couldn't control very well. Since she's been home almost a week now there's barely any bleeding a fluid is much better. She was originally diagnosed a year ago and told not sick enough to be put on the list. She was active prior to covid taking a toll and now she has lost most of her strength. I've heard wonderful things about mayo and was praying they could help her