Can somewhat explain about the "end stage"

[tom502]

Recently my wife has been told that she needs to see a specialist at KU med center for her liver.  Everything i have read recently indicates "end stage"  Jaundice, ascites(?) in stomach and calves, nausea and vomitting almost daily, pain in feet from neuropathy, terrible sleep patterns (2 hours up, 1 sleeping, 5 up, 3 sleeping etc.) short term memory issues, sometimes gets confused on things that people have said or how events have occured, skin discoloration, loss of appetite but no weight loss, weakness, fatigue, loss of muscle of muscle mass and a general sense of depression. we haven't seen the specialist because this all just came about in the last couple of days.  Can someone help me with what to expect, treatments and such?  Also, can someone give me a list of questions for the specialist?  I have no idea what i am doing and she is terrified.

thanks

[KjFlicka]

Also, I don't really think you can bleed out through your menstruation. Just make sure to B line it to the ER if you see her throwing up copious amounts of blood or her bowel looks like coffee grounds or black tar. My menstruation disappeared completely for more than a year. Just came back 4 months ago!

[KjFlicka]

Hi Tom! Glad to hear back from you. I was in the hospital for about 5 days the first time. This is when everything was 'discovered'. It was all very sketchy at first when I got home. New diet, all these meds, etc. Almost 3 months after I was diagnosed with the alcoholic cirrhosis, I got my first bleed - a varix in my stomach - and was in ICU for 3 days of another 5 in the hospital. I was convinced this meant I was getting worse but, in fact, it was just another scary (and sometimes deadly) side effect of cirrhosis. Well, after that, I just got better and better. In the end it was pretty cut and dry - cut out the toxin and your liver should heal. I had my husband right there with me the whole time and my folks as well. You are doing an awesome job of researching! You will probably be able to teach a class on the liver in a couple months.

Your wife's symptoms sound like she needs to be in a hospital now. After rereading I noticed the confusion and basically every single physical symptom I had, she should go. She is having encephalopothy and, though she hasn't had a bleed yet, they need to take a look via endoscopy to see if there are any imminent varices. There are treatments for all these things but she needs to get on it now and maybe even the kick start at the ER.

I'm sorry it took me so long to respond. I am here for you both though, so tell me what's going on with her now.

Nicole

[CCRN34]

The heavy menstrual cycle may just be due to low platelet counts...as the liver is responsible for clotting factors.

Best of luck to you and your wife.

[tom502]

thanks for the information.  i'm really glad to hear you are doing well.  i'm finding out that the liver is very durable and this doesn't necassarily mean a death sentence.  she hasn't had a "bleed" through the throat or stomach but am wondering if it can happen through her menstrual cycle.  it has been heavy and very erratic.

how long were you in the hospital nicole?

tom

[KjFlicka]

I was diagnosed with end stage liver disease over a year ago with many of the symptoms your wife is having. I feel fortunate now that I was admitted to the hospital where they didn't let me leave until they knew everything (scans, biopsy) and even 'stabalized' me by draining the fluid from the ascites and monitoring the encephalopothy (brain fog). If you're able, why not just check her in the hospital so they can get everything done then and there?

The treatments are fairly simple and involve water pills, other meds, sodium restriction, fluid restriction and obviously no alcohol.  Then maybe an endoscopy and a bunch of scans and it's really simple.

UNOS is a great site. Best of luck with the treatments. By the way, I'm doing fantastic now and no longer need a transplant as originally thought. Again, same boat as your wife, but I was fortunate to have my liver return to normal function after about 6 months.

Feel free to write if you have more questions!
Nicole

[tom502]

thanks,  i'll take a look

tom

[Rachel_R]

Start here http://www.unos.org/resources/brochures.asp