Wish I had the knowledge to answer your question but I don't. Some others out here may know but I truly just don't.
What is that other condition you have with your liver? What caused that & was much damage done as a result?
What I do know is that there are 3 types of autoimmune hep, but not even sure what those 3 types are.
Do you see a hepatologist or a reg dr?
Thanks for your response. I have already been for a transplant eveluation. They say I am at ESLD . As I said before I really don't at this time have any symptoms. My labs have been checked for 20 years due to the gallbladder, and the hypertension that I have had. The labs have always been normal. Yet they tell me the condition has been there for many years to be as far along as it is.
Oh my, that is serious. What causes the type of disease you have? And are your labs being done on a monthly basis or how do they stay on top of it with it being ESLD? I take it a biopsy gave them this info as far as the progress & the type of disease? Are you sure that Crytongenic disease is not an autoimmune disease in & of itself? Guess I am going to have to go out & find out what it is. Please stay in touch.
I just typed in your disease in the medhelp search & came up with a little bit of info. It could be aih you have, you do have a hepatologist right?
I suppose I do have a hepatologist, I have every other type of Dr. you can think of . We do not have liver transplant center within a 600 mile radius . I have to travel to Mayo Clinic to see Dr.'s there. I have blood drawn every 3 months and go to Mayo every 6 months in order to stay on the transplant list.
Cryptogenic liver disease , is basically an unknown disease. They do not know how I got it since I do not have hep. A B or C. Never have done drugs of any type and do not drink. All of my labs are Ok except for platelets being a bit low and my ammonia levels high. The ammonia is the only thing I take for the liver.
The biopsy and various scans are the tests they have used to come up with the severity of my condition.
Thanks for trying to help. Some times it just helps to talk to someone about everything. Right now I have another problem. I had surgery on my feet for bunions and hammer toes.
The right foot was done first then the left foot. After the swelling did not improve on my first surgery and going to therepy the did an MRI and found out my toe was fracture where the surgery had been done. So they did surgery again. this time they inserted a pin in my second toe and two metal plates on my big toe. Well on sunday while getting out of bed the pin got stuck in the blankets and was accidentally pulled rather hard. Now I can barely walk , It's worse than before. Have to cally Dr. tomorrow . Who knows what next . Remember 1st surgery hammer toe bunion spur. 2nd surgery bunion hammer toe, 3rd surgery right foot again pins and plates. Now this????? What next. ????
Thanks for reading. cat
Sorry, I did type you a big long response earlier, but it didn't take I supposed because there was an outage here yesterday when my computer was on & shut off by the outage so I had to totally sign in again & couldn't remember my password.
Just to say that yes I did notice that they aren't sure what caused your disease & so sorry you have to travel so far to get to the Mayo clinic but you are in good hands. I am not & never was a drug user so how I got certain diseases I do suspect but really do not know for sure.
Sorry about your surgery & all the problems related to it since. I really don't even know what hammer toes are.
As I said before I had typed quite a response earlier but it wouldn't take because it wanted my password & I couldn't remember it so will do better next time. Stay in touch.
The reason I asked about AIH is because if my disease is an auto imm. they could offer some kind of treatment. Right now I only take Lactulose because my ammonia levels fluctuate so much . And when they do I can not think properly.
To say it simply hammer toe is when a toe or toes are crooked therefore get callused or get corns. So they opperate on them to straighten them out by removing some bone or releasing some of the ligaments. In my case it was just one toe and the bunion on the side of my big toe. They didn]t heal properly and had to be done all over again.
Got to go now talk to you later.
I am really confused Cat & I guess it is just because God is on your side that you are fortunate enough not to have any of the other serious side effects with ESLD other then the ammonia levels. I do remember When my brother's ammonia levels would rise & he would kind of talk out of his head & see things that weren't really there.
Well, at least I know what hammer toes are now, more then I knew before, doesn't have anything to do with arthritis does it? My older brother has had surgery on almost everyone of his toes, plus other parts of the body due to rhuematoid arthritis.
Take care of yourself, eat only good things, stay away from any harmful things, but I really don't need to say that to you do I. Later, Jody