I have been lurking around this forum for about 6 weeks, and I can not tell you how much everyone has helped me through dealing with my fathers ESLD. Everyone's story is so different, and I thought I would share mine up until this point in hopes of helping others out there. The symptoms of this disease are terrible and to see someone go through the pain is unbearable at times. Here's how it started:
My dad was neither an alcoholic nor had hepatitis. He had developed the non-fatty liver which caused his cirrhosis. As much as the doctors would never admit this, about ten years ago he went through heavy treatment and medication to control a mental illness. As a family, we had no idea what all he underwent (long backstory), but I'm pretty sure it caused most of the the scarring of his liver what would eventually put him in the condition he is in today. My personal opinion though. about 4 years ago, he was diagnosed with the disease. He had moments over those years of encephalopathy and was in the hospital a couple of times with varices issues, but he would always bounce back to his normal self and be fine with the lactulose he was on.
Last July he was put on the liver transplant list, got a call on Valentines day for a liver, we waited around 14 hours for the surgeon as he was marked and ready to roll in to OR when we heard the news the liver was fatty. No go on the transplant. 2 weeks later he was in his local hospital when he started bleeding from every orifice of his body. Heavily. He was med flighted to the transplant hospital in our state, and after 14 pints of blood was transfused in him, they made the decision to do an emergency TIPS procedure in hopes to stop the bleeding. The surgery was successful and he remained in ICU for the next week, intubated, on 12 drips, slowly trying to recover. At one point during that week, they told us we needed to make the decision about taking him off life support as he was not getting any better. I think my dad heard this and thought "i'll show you", because he started to recover and eventually got off the air tube and blood pressure levelized and he was sent packing up to the step down ICU, which was a huge surprise. The difference a day makes, right?
During this week, he was able to eat food, breathe on little oxygen, and seemed to be doing much better. Towards the end of the week, he started sleeping more, not eating at all, and developed several infections (VRE), acites, endocarditis, etc. Back to square one. He then started having trouble breathing as fluid had built up in and around his lungs. Back on the tube and in ICU. During this time we learned that his kidneys had completely given up and were damaged during the time he was bleeding out a few weeks earlier. We were told the only thing that would help his kidneys were a new liver and dialysis (which would only be a temporary daily fix). After dialysis catheters were put in, my dad thought it would be smart to pull them out (the encephalopathy alone is his number 1 enemy as he knows not what he does), leaving a hole in his neck, causing more infection, and us heartache. This is now week 6, and he has gotten off of the breathing tube (yay!) and is now breathing on his own. He does have to continue with the pressor as his blood pressure is not maintaining. The transplant docs have told us that if he is infection free for 2 weeks he will be put back on the list. The antibiotics were completely yesterday and we should be getting back cultures to see what the infection status is tomorrow.
SO that is the backstory, and here are my questions:
1. Yesterday I walked in to see my dad talking to his late father...talking to "larry (his dad or my uncle, both passed away), talking to our Heavenly father saying "i don't want to go now, a little on down the road", talking about his balls hurt to a david, etc. I have never seen these kind of hallucinations before with him AT ALL. It scares me because there are so many accounts that in death your loved ones start to see things. Is this ICU psychosis or is this death right before our eyes? Have you ever experienced this before?
2. We have had the ICU head doctor straight up tell us that he would not be able to survive a surgery in his grave condition, yet the liver team will still evaluate him for a liver after he is 2 weeks infection free. Have you heard if someone who is gravely gravely ill survive a major surgery such as a transplant? I'm worried that if he gets the surgery and his kidneys don't regenerate because as they are too damaged that he will be on dialysis for the rest of his life. Would that even be worth it to have a new liver when you're in the hospital 3x a week for dialysis? The reason I say this, is because my family is not all in one place and would not be able to take him to the hospital that many times a week. Have you heard of someone have a new liver but still have to get dialysis for damaged kidneys? Is that a rare thing?
So many questions...a long post that I'm very sorry for...I just have 50 questions and am eager to hear your advice!!! Thanks so much everyone!!!