Wondering what to expect

[CaringForMike]

I’m new to this forum. My husband was diagnosed with non-alcoholic fatty liver disease cirrhosis and HCC liver cancer in July 2018. He will require a liver transplant to survive and our surgeon told us he would not make it to a deceased donor. Our wonderful radiologist has kept him alive thus far. We have had many people offer to be living liver donors, but only 2 have qualified for testing and they both failed to pass. We are hoping our next candidate can go in for testing in January, (crossing our fingers again). However, he has recently began developing more of the symptoms of upcoming liver failure; ascites (drained once), itching, almost constant nausea with bouts of vomiting, signs of mental confusion, easily bruised, etc.

I have a good support team, but I’m reaching out here because, frankly, I’m terrified about his eventual mental decline. He is a wonderful person whom I’m very much in love with. I’ve read that encephalopathy can cause personality changes among other things. It would be so helpful to know what to expect from someone who has gone through this. I’m not sure how I’m going to handle it if I lose him before his body goes. We are hoping we can find a living donor in time, but as time goes on and the symptoms mount, keeping up hope is getting harder. Thank you, Laurel

[Curly_Girl Caregiver]

Welcome to the forum, Laurel. I'm hoping someone can share their experience with you -- I know sometimes just not knowing and imagining all kinds of scenarios can be worse than anything.

My husband was also diagnosed in 2018 (March) but our experience thus far is different (he doesn't qualify for a transplant, but so far his liver function is not affected). I sure hope your husband finds a living donor in time -- you guys are both in my thoughts.

Wendy

[CaringForMike in reply to Curly_Girl]

Thank you very much for your reply. You are exactly correct, I think my imaginIng how bad it might be is what is scaring me. I have done research to find out the stages he will go through, but I think talking to someone who has actually been though it will prepare me for the reality. I’m the kind of person that if I can get an idea of what to expect, even if it bad news, I can adapt to deal with it. I think the uncertainty is what is scares me. I was there when my husband’s mother died of pancreatic cancer. Her husband refused to bring in hospice (he was in denial that she was dying). On a day I came to help I could see clearly she was in terrible pain, but due to the backed up urine in her system she was to cognitively impaired to express it. I demanded hospice be called. Hospice sent a doctor that administered enough morphine that it helped her pass that day. The experience was horrifying and made me vow that if any of my loved ones were dying I would work hard to make sure they were free from pain. What I seem to have a harder time with is the mental decline. I’m not sure how I’m going to handle him losing his mind. Thank you again for reaching out, it helps.