Hello, Moonbeam, and welcome to the forum! I'm sorry you are having problems with elevated ammonia levels. What type of liver disease do you have and when were you diagnosed? Is there a GI doc you could go to? While a hepatologist is preferred, a gastroenterologist has more knowledge regarding liver disease than a primary care doctor. We have a member here in NC who had a similar problem, and he gets seen at a major hospital's transplant center, though he is stable and not in need of a transplant. (Sorry, I can't recall the name of the hospital.) I am in FL and seen at Mayo's Transplant Center, though I've never been a transplant candidate. So that is something you need to look into--a hospital that can treat your liver disease. A teaching hospital can be a great resource.
Regarding the "blackouts." That is most likely hepatic encephalopathy from elevated ammonia levels. This happens with end-stage liver disease, but that doesn't mean you will die next week. Patients can become quite beligerent and nasty during these spells. The treatment is Lactulose. Has it ever been prescribed for you?
There is a lot of information in the folder at the top of the page entitled Hepatitis Resources. I encourage you to read that.
Moonbeam, I'm really sorry you are having such a problem getting proper care. You are not the first person I've heard say that SC is not a good state to be sick in, especially without insurance or being underinsured.
I think you've gotten some good input from other posters.
If you can get the ammonia under control, you might want to see about the new hep C treatment becoming available next year that is having a 75% success rate and only has to be taken for 24 wks. But of course you need a good health care provider before anything else.
Everyone's system is different. When my ammonia levels reached the 60's, I would start noticing that I wasn't talking right, having problems not being steady. The first time I blacked out, my level was at 128. The last time, my ammonia level was at 395! When you blacked out, did your family not take you to the hospital? They should have, the physicians there would most likely have put you on Lactulose right away to bring your ammonia level down. You probably would have only been in there 4 days. If you have no insurance for hospital, they can get help from outside sources for you.
Next blackout you have, get to hospital. Tell your family to call ambulance. I more or less provided my primary care physician with information about Hep C. She would keep in touch with my liver dr. Now, since I had the transplant, any dr I see, has to talk to my transplant coordinators. But, they don't mind.
Good luck to you in finding you a doctor. Hope you find one, and soon.