Hello, Child4, and welcome to the forum. I'm sorry that your mom has liver disease, but I am sure you will find a lot of information and support here. Be sure to read the educational threads in the Hepatitis Resources folder at the top of the page. Also some of the older posts.
Where is your mom listed for transplant? What center? It's good that she has gotten offers already, so she shouldn't have to wait too long. I assume she's already been through all the evaluations, etc. If you've done any reading here, you know to keep salt to an absolute minimum. Her getting up and about will definitely help manage both her circulation and the accumulation of fluid. However, if she is standing for too long, her feet and ankles could swell. It's always a balancing act. She should abstain from eating beef as it's the most difficult protein for a damaged liver to process. Fresh fruits and vegetables should be plentiful in her diet. It sounds as though she had fatty liver which progressed to NASH (nonalcoholic steatohepatitis) and decompensated cirrhosis. In Dr. Palmer's Hepatitis & Liver Disease, she states that "Since people often gain weight after transplantation, all transplant recipients, but particularly those prone to NASH, must be especially diligent about maintaining a normal weight after liver transplantation."
If there's anything you'd like to know, feel free to ask. Someone can probably answer or point you in the right direction. Also, feel free to just vent. You have plenty of company here--more caregivers than patients.
Post Edited (hep93) : 6/1/2009 2:24:17 PM (GMT-6)
As I stated above, fatty liver can turn to NASH and decompensated cirrhosis, which sounds exactly like what happened to your mom. I've heard that UPMC has a short wait time for a liver, so that's in your mom's favor.
Many here can empathize with you about the Lactulose balancing act. If she's taking it without much of a fuss, that's half the battle. Fortunately, though I have hep C and cirrhosis, I've never had hepatic encephalopathy.
Child4, I suggest you take each issue as they arise. No use in worrying about dialysis when her kidneys haven't yet failed. The doctor will explain it to you if it becomes necessary. Basically, hemodyalisis is done at a free-standing clinic or at a hospital. It cleans the blood, which is necessary when the kidneys are no longer able to filter out toxins. It may be done through a subclavian catheter temporarily, but if it becomes a lifetime thing, they will create an access in the arm. It is normally done 2-4 x a week.
Fatigue is fatigue (very tired, sleepy, etc.) and encephalopathy is confusion, inappropriate behavior such as being very irritable, etc., and being "out of it." There's a clear difference.
Hope this helps a little.
Post Edited (hep93) : 6/10/2009 11:11:08 AM (GMT-6)
You are right. Your mom does need a liver. What you are describing goes right along with severe liver disease. I pray that she will be offered a good liver soon!
Post Edited (june17) : 6/18/2009 2:22:32 AM (GMT-6)
Thanks gateway 40!
I'm so sorry anyone has to have this awful ESLD. I guess there are a lot of us that were around to get infected without knowing it and before blood was tested. Like I said, I'm so sorry you have to go through this, but it's great to know I'm not alone. And it does seem like it's so hard to get a straight answer from the doctor. I don't even know if I have a MELD score - just really high ammonia. They're surprised I haven't had a coma yet, but retaining fluids hasn't been a real problem. However, I am starting to get bad scores on my kidneys. There's just so much I don't know and I'm very grateful to have found this site and especially people like you. I think the hardest thing for me is the fatigue. I want to be playing and helping my grandchildren like I used to. When they actually ask me for the old grandma that could do things it just breaks my heart. And I remember how I felt when I found out that my own mother was going to die - I see that same look in my two daughter's faces; they're scared, but right now no one really wants to talk about it - we all just kind of pretend. I feel so sorry for them and my wonderful husband of 34 years.
Take care and stay in touch