Cirrhosis Support Group

My husband has been in the hospital for 25 days, with an infection and complications from cirrhosis. Ironic thing, until he went to the emergency room, was never told he had any liver disease. He had regular liver enzyme tests and a complete body CT scan in February 2009, but nothing other than some elevated levels. Now, he has had bleeding from esophogeal varices, jaundice, and hepatic encelepothy. (forgive the misspelled words. I'll learn them soon enough) His original hospital admit was due to a bacterial infection in his blood. From the long hospitalization, he can barely walk at all. I am confident, with some assistance at home, he'll recover fasting. It's the signs and symptoms from the cirrhosis that fear me most. Guess I am looking for a bit of advice but mostly, a place I can vent without lectures or pity. (I don't know which is worse) We understand he can no longer have any alcohol at all, but in truth, it will be his decision. If you drink, you will die sooner. No idea how he will react once at home.

Again...thanks for letting me vent. I read most of the discussions here last night and this seems to be the best support on the web that I've located..

Jackie

So sorry to hear about your husband. This is the best place I have found as well. There are lots of caregivers (like me, to my mom age 63 - cirrhosis with varices, currently non bleeding and chronic HE among other fun things.) and also patients, so you really get a well rounded group to talk to.

Please check the www.mysickliver.weebly.com website, it is great and full of easy to understand explainations of what to expect, symptoms and complications. It was made by a member on this board.

Welcome.

MMac, as you and many of us have found, cirrhosis can sneak up on you like a thief in the night--even if you have a guard dog (or blood tests) and burglar alarm (or CT scan). People with early-stage cirrhosis can actually have normal liver enzymes for a long, long time, and apparently the damage isn't always visible on CT scans. My own early scans showed iron deposition (from hemochromatosis) and isolated spots of hypervascularization (which look like tumors on a scan), but the images overall apparently did not look "cirrhotic" till several years after diagnosis. The website mentioned above is absolutely wonderful. I've found so many helpful details there that I didn't know--even though I've been dealing with this illness for ten years.

Hi Jackie

sorry to hear about your husband, you will most defintely find a place here to vent, not be judged and get information, support and questions asked. x

Hi, Mo.....he has just the opposite problem. He's been dealing with chronic anemia for the past five years.

Thank you ,Weenell

@ IronCelt - Well put mo! so very well written - like a "thief in the night..."

@ MommaMac - A HUGE welcome to you - you've found the perfect place in my opinion and you'll find many respond with knowledge, insight, encouragement, much more! May I ask what symptoms he was having that sent him to the ER? Ru (ruth8890)

Post edited by: ruth8890, at: 04/23/2012 07:53 PM

Wow....I just wrote a page or more of what happened and POOF, disappeared. Long story short, he went to the ER with back pain and no sign of liver damage. He ended up with bleeding varicies, HE, jaundice, and after 25 days in the hospital with 8 of those in ICU, he's home. Cannot walk or even stand, but he's happy at home. He does not want to go back to the hospital ever again. It's a scary tightrope I'm walking.

I found the ER was good for stabilizing my daughter. But no follow up or explainations.When she would get admitted to the hospital, the docs assigned to her case were pretty judgmental and didn't seem interested in her except to stabilize her enough to send her home. (exception U. Of New Mexico)

When she was accepted in a liver program, everything changed and we didn't feel so lost.

Thanks, Virginiamom. When we went to the ER, he had never been diagnosed. He was having complications of anemia and have so many IV iron infusions and blood transfusions. But yes, they seemed to change when looking at his liver. He's home now and confused. Just gave him his lactulose. Very difficult as he is bed ridden so I must change him with the bowel movements. I thought I could do this at home but am afraid he will need to go to a nursing home.