Post Edited (pug5) : 5/17/2010 8:07:52 PM (GMT-6)
Welcome, Pug5. NASH is an acronym for non-alcoholic steatohepatitis (also known as fatty liver disease.) And I believe you mean von Willebrand's disease, a bleeding disorder. Please refer to the Medical Word List for other words.
Pug, it's on the main page of the Hepatitis forum, near the top. The best thing you can do for your mom is to get educated about her disease, and also remember to take care of yourself.
Post Edited (pug5) : 5/17/2010 9:52:31 PM (GMT-6)
Pug, if she is on Lactulose and sleeping a lot, she is probably in serious shape. The Lactulose, in case you don't know, is for hepatic encephalopathy (mental issues) which result in confusion, agitation, and being "out of it." This is caused by a buildup of ammonia in her brain, and the Lactulose removes it through bowel movements. If she is sleeping 18-20 hours a day, she is in serious condition. Just because she doesn't have some of the things you may have read about, doesn't mean that she is not very ill.
Post Edited (hep93) : 5/18/2010 7:15:54 PM (GMT-6)
Pug, that's good that you are getting some family involvement. If you could get some of them to take her to medical appts., etc., too, that would be helpful. You should not have to do it all.
no one lives close enough to do that. but they each has taken her for short periods of time. so that i do have breaks. also my adult children lives around me so that helps. i really think doing what she wants with her kids while she can is a good thing not always does someone lucky enough to get that chance. she is pretty happy right now. i feel happy for her too.
It takes a lot of strength to raise 5 kids alone. Maybe that strength will help her through this difficult time.
Kathleen, doctors and others in health care miss things all the time. I think one reason for that is too many patients. They simply don't have sufficient time. Another thing is lack of communication---the patient not communicating effectively with the doctor and doctors involved with the same patient not communicating with each other. That's one thing I like about Mayo. Everything is in the computer system, so a new doctor will pull up a patient's history and be able to see all the diagnoses, meds, what has been done thus far, etc. They take their time. I have never felt rushed there. They also work as a team, so it is not just one doctor making decisions and treating. I know at Shands they missed a few important things with me. This is one reason it is so important for patients to advocate for themselves or have someone doing it for them.