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autoimmune hepatitis, stage 3 fibrosis
I was just diagnosed with stage 3 fibrosis, stemming from auto-immune hep. My GI is sending me to a transplant center to see about trial drugs and/or getting on a transplant list. In October my liver enzymes were near normal and are now severe and am stage 3. My rheumatologist felt this seems to be moving very quickly. I have so much on my mind financially, whether to pursue as the bills are starting to add up. I also have CAD, glaucoma and rheumatoid arthritis. I have been started on interferon and prednisone. Just so many questions, my mind is full and ultimately want to make all the right decisions. I am sure the transplant center will help with a lot, but that may be weeks before I even see them. Hard to sleep as it is with meds, symptoms and now my mind won't stop racing. My pathology report shows a patcy bile ductular proliferation which says is most like related to the degree of fibrosis and activity. Can someone shed some light on what that might mean? can't find on the net searches believe it or not!
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446474 tn?1446351282
It is best to understand that liver disease is a slow moving disease. Very rarely do things happen over night. You are now treating your liver disease which is a good thing. Therefore waiting weeks or even months, as many of us have, until being seen at the liver transplant center won’t make any difference as far as your liver disease is concerned. Mentally it can be rough no doubt about that but unfortunately when it comes to liver disease waiting for what's next is a very common thing. Liver disease typically develops over many decades. So most of us have had liver disease for decades before we are first diagnosed with it.

The good news is that you only have stage 3 liver disease so your liver disease may still be reversal or at least can be slowed down if you respond to treatment. It is only when liver disease becomes advanced stage 4 (cirrhosis) that it becomes irreversible and a liver transplant is the only treatment option.

Your GI has done the right thing and referred you to a liver transplant center where there are experts on your type of liver disease. They will do whatever they can to slow down or stop the progression of your liver disease. They treat people with AIH and other liver disease on a daily basis and are aware of all of the latest advances in treatments and management. Should over time you need a liver transplant, they will help you to get listed for a transplant and help you manage your liver disease until you can get a transplant.

Please understand that ONLY people with stage 4, cirrhosis are listed for liver transplants. People with advanced cirrhosis that is. People with advanced complications from their liver disease. Many people can live with cirrhosis for many years before developing complications and needing a liver transplant. Since you have lesser disease it could be a long time before being listed and needing a liver transplant. Hopefully it won’t come to that. People that need liver transplants are very ill and have life-threatening liver disease and life-threatening complications that often require hospitalization to manage; luckily your liver disease is not so advanced.

Only your doctor who knows your history and your case can answer questions about your particular liver disease and its manifestations. While there are common generalities between  people’s liver disease how it manifests itself in each person is unique. Some people have certain complications others don’t.

Prednisone does have side effects which can impact your quality of life and depending on the dosage, can affect your mind and your thinking. Interferon also can have numerous side effects as well. You should let your GI doctor know if you are having problems some of the common side effects of these drugs.

Hopefully you will respond to current treatment or another one and your Autoimmune hepatitis (AIH) can be stopped before your liver disease becomes irreversible. The doctors at the transplant center will help you to educate yourself about you liver disease and what you can do to best manage it. Try to be patient (easy for me to say) knowing that you are on the right track to getting the best care for your liver disease available and that liver disease is a slow moving process that has already been going on for decades but thankfully now you are addressing it.

The best paper on AIH is the AASLD Practice Guideline for doctors who treat the disease. While not written for the laymen it does cover all aspects of the disease and may be helpful for those interested in learning about their liver disease it origin, diagnosis and treatment.
“Diagnosis and Management of Autoimmune Hepatitis”
http://www.aasld.org/sites/default/files/guideline_documents/autoimmunehepatitis2010.pdf

Hang in there.
Hector

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