Pix, the drug is spelled Entocort. I found an explanation of side effects here:
Post Edited (hep93) : 4/4/2009 1:28:41 PM (GMT-6)
Dear psc wife,
Thanks for responding to my post!!!
I don't have any side effects (yet), but I've only been on it for a few days. I might have a transplant in my future, too, and I would like to ask "How long was he 'disabled' by end stage liver disease before his transplant?" (I think my question really is "When could he no longer live alone?", since I don't have a person to be my caretaker)
Sorry for the delay in getting back with you. I’ve been working too many hours.
Anyway, Harvey was a truck driver and he was becoming dangerous on the road due to his level of concentration. It just wasn’t worth it. This occurred May 31, 2006. His symptoms didn’t become debilitating until the end of October, 2008. He was pretty much bed ridden by that time. He was transplanted January 21, 2009.
I only work about 2 ½ miles from home. Before the surgery, he slept most of the day. I would prepare breakfast and see that he took his meds in the morning. He would sleep until I returned at lunch. Again, I would prepare him something to eat and have him take his meds. They he would piddle around for a bit and return to bed. I would come home after work and keep him up as long as I could. He would toss and turn most of the night. He simply couldn’t sleep. But he was so tired, he couldn’t do anything.
He was hospitalized in November, 2008 and ended up with a feeding tube. This was actually a blessing since he had lost his appetite for food. I could ensure he got the calories he needed and that he took all of his meds (especially his Lactulose).
I’m sorry you don’t have someone directly supporting you. Do you have friends or family nearby? You know, you will need a great deal of support after the surgery. It’s good that you are trying to get things in order. Understand that everyone is different. Harvey's case was extreme. I met several people at the transplant clinic 2 weeks after their surgery. They looked wonderful. The only thing that gave them away was their mask.
Wishing you the best.
Thanks, Penny. Of course I have family and friends, but I don't know how I would ever figure out how to ask for so much help, especially when I wouldn't know what I need, since I would be so sick. I will most likely just stumble along until I qualify for some sort of home care, or nursing home. I'm not there at all yet, and I'm not the sort of person to pretend it's not a possibility.
Dear Pink Grandma
Thank you so much for what you said to me in your post. I do have financial things in place (power of atty, advance medical directives) and stuff like that. My main person will most likely be my son, and I have actually talked about liver failure with him. The idea of getting help from you guys never even crossed my mind, and it is a beautiful idea. Maybe I will be able to get some sort of network going with my friends. I guess I'm afraid I'd scare them all away.
I am religious or at least I try to have trust in God. I suppose maybe its time to try to put that into action, huh...
You are a very beautiful person, PG