Thanks for your post, as we are both sharing experiences that are very similar. Her rheumatologolist prescribed Plaquenil (200mg) twice daily about 3 months ago, and told us then that it would take several months to determine if the drug was going to help with her dry mouth, but that many patients have had excellant results with it. It seems a miracle that she is now complaining of "drooling" in her sleep, when before she would wake up in the mornings with her mouth so dry that she could hardly talk. She hasn't had any sores in her mouth for well over a month now. We can only assume that Plaquenil has made the difference.
She is also taking 20 mg's of Nadolol every day for portal hypertension. Her blood pressure is also checked and recorded daily, and normally averages around 110/70. Hopefully with the pressures under control, she won't have a GI bleed. I am looking forward to meeting with her Hepatologist next month to see what his opinion is regarding her stomach varices. Since he works with the transplant team, we will certainly adhere to his advice regarding banding, and/or a TIPS procedure.
We are very satisfied with the transplant staff at Baylor, as we get an email as well as a written report of her MELD score within days of her lab work. When she was in the Methodist system, I had to request her MELD score, and the canned reply was always, "We'll have to get back with you."
I am so happy to have found folks to communicate with that are traveling this same road. This site has been a mental lifesaver for me. Others who haven't walked in my shoes just don't understand what a caregiver is going through when trying to save a loved one from this terrible disease.