I would like to know why everyone I read about with Autoimmune Hepatitis is being treated and I'm not? I was sick for many years and finally diagnosed during a gall bladder surgery. In fact the surgeon was so excited to tell someone, that he told my "ride" I had alcoholic cirrhosis and that it would be better if she told me. So he violated my privacy AND told someone my business at the same time! But that's another story. Anyway it ended up that they said I had Grade B cirrhosis and Stage 3 fibrosis. That didn't make sense Grade A cirrhosis = State 4 fibrosis. So then I went to a liver specialist and she said I had State 3 fibrosis and not cirrhosis. My question? Why is everyone from Stage 2 on getting treated and I am not? Am I too far along; not far enough. Why would they push steroids on Stage 2 when just by diet alone you can get it under control? I actually got my enzymes down to normal this past year after almost ten of them being elevated. Now they have me on the Paleo diet and I'm not allowed any grain, legumes, sugar or honey. They never checked my panels this time but I was ill with the "bone" pain and not allow anti inflammatory drugs so... Again why is State 2 being given treatment and I'm not?
I've been reading other comments and questions, and it appears to me that the first surgeon might have been correct about my being in cirrhosis already. The pictures of my liver showed my liver covered in nodules. Others on here only have a few? It seems like no one is honest. I don't know what to do! I'm disabled now and finding out that if I need hospitalization and Medicaid that they will go after my property for payment of the medical bills. I worked my entire life to have this little piece of land to give to my son. Now I'm finding out it may have all been for nothing. I worked for almost 40yrs and missed so much just so I could provide for my family. And no one will answer how long do we have before we may need a transplant? It reads 5yrs for Stage 3. I've been sick for over ten; almost 15. Do I need to sell everything and give it all to my son now?!
Wanted to clear something up about what has caused my disease. It wasn't alcohol like the surgeon was saying because I wasn't drinking and don't drink. I have Autoimmune Hepatitis. My sisters and I were all born with this gene, and it comes out in each person differently. It came out as rheumatoid arthritis and thyroidism for my sisters. My father, two uncles and grandmother all died before 64 with similar autoimmune diseases. I don't know why I keep leaving the drs' appts without a clear picture. I felt better this past fall. My liver hurts right now for no reason. I lied I guess I did put a quarter cup of honey in the pumpkin last night. No sugar! Only meat, fruit and vegtables! I do feel better and my veins aren't blowing up, so the diet must be helping. I'm just so frustrated. It sounds like they can take my property in the end, and I so wanted to leave it to my son. With the economy the way it is they may have nothing without it....Another thing with this disease I'm sick of not being able to stay on task. Venting sorry.
You have to vent to somebody, it is so frustrating dealing with the medical community whose job is not only to diagnose and treat you quickly and correctly, but to make the process as easy as possible. They usually make it as hard as possible. I can say this because I have been the patient care coordinator for 3 top doctors at major hospitals and I fought tooth and nail for my patients, many of them late stage cancer patients. I am now having GI issues going on over 8 years and can’t get a test recommended twice over 6 years by radiologists despite symptoms now at a real crisis. Doctors would never wait themselves for necessary tests and treatment, or let their family or friends wait. Different story when it comes to fighting for their patients. If you are not satisfied with the apparent lack of treatment, keep searching until you get answers that make sense and whatever treatment that will make you better. I know they wear you down to shreds. Dump the loser doctors and find someone who actually takes an interest in medicine and cares about their patients. Hope it doesn’t take too long to get those answers. That doctor had no business or right giving out any info that you didn’t authorize and what he said was slander. If you have proof and your friend would testify, you might want to at least file a complaint with the medical board so this incident goes on record. To find out that was said had to make you worse physically and nobody has the right to do that to you, doctors especially.
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