Welcome back, Sunflower.
YOu have posted two types of posts.
I'll answer the Caregiver one here and recommend you post about
Cramping with ESLD in a NEW Post. More folks will respond I think.
Trust me, the tears will flow before this episode in your lives writes its final chapters. If you page back through the Caregiver threads, you won't believe what goes on!
In my case, my partner of 42 years had alcoholic cirrhosis, Hep C since 1969, and liver cancer found early in 2011. He was circling the drain in the fall of 2010 and told that as a drinking man with all these problems he would not make Christmas 2010.
But here is is, post transplant, doing very well. Of course he has Hep C, so this whole mess will likely start up again at some point if something else doesn't get him first.
Before I found this site, I think I cried every single day for months. He was mean to me, aggressive, nasty, and basically crazy as a loon. He would buy things and hide them around our house. He bought 4 pairs of new golf shoes, for when he got better (and hasn't played a round since 2009). He bought dozens and dozens of golf balls and then gave them away to all his friends when he thought he was going to die. He pulled the car in front of a passing vehicle to "teach the guy a lesson". When we made him stop driving, he went to the car while at a doctors appointment to get a sweater and took off...and there I was miles from home. Fortunately, he had a moment of clarity and came back for me. he couldn't get to the bathroom sometimes, and threw up most of the food he ate for weeks at a time.
When they got him on Lactulose AND Xifaxan things started to settle down. By Christmas 2010 he was acting more normal, just sick as a dog. He slept days and lurked all night. He had chronic pancreatitis and had to take enzymes with his food to avoid the stomach aches and diarrhea. He had intermittent kidney failure and spent weeks in the hospital. 5 weeks in 5 months...5 days at a time.
When in the hospital he was the most clear. Because those scientists took his blood a few times a day and tweaked his potassium or sodium or albumin or platelets or plasma or or or. At home, we do the best we can with the meds they give us and try to help them eat. But when he wouldn't take anything but canned peaches and vanilla mike shakes, there wasn't much nutrition to support electrolyte balance now, was there?
So, hang on, post often, and check the information at the top of the forum. There is good stuff in there about
I have a question, this doc who is ignoring his symptoms, is he a hepatologist at a Major Med Center that does transplants? If not, find one. They listen. They know way more about
liver disease than the general GI guy, who makes his money giving colonoscopies.
Like an alcoholic, us caregivers need a serenity prayer...take one day at a time, hon, and you'll make it through. Some of the journeys have happy endings, some do not. Prepare yourself.
Post Edited By Moderator (hep93) : 6/5/2012 8:59:11 AM (GMT-6)