I have had hep c for 35 years, I was diagnosis about 20 years ago. I have been seeing a gastroenterologist for 10 years. I just got my test results back from the lab.. My Alt 56 IU/L - AST 69 IU/L - AFP,Serum, tumor Marker 24.1 ng/ml . I do have a appointment with my Doctor in 3 weeks. I don't feel sick at all. I am very scared about these results. Can anyone tell me about these results. I do have stage 4 if not "End Stage Liver Disease. I feel my doctor just orders MRI and more lab work until it get worse.I have not had any trement for Hep c. I do not drink alcohol either. If anyone can tell me about my test results or a good web site to visit i would appreciate it. I have 5 beautiful grown children and 4 grandkids I want to live a long life for all of them.
It's normal for someone with Hep C to have liver enzymes over the upper limit normal range,Someone with cirrhosis sometime has an AFP over the normal range,it doesn't necessarily mean you have a tumor or cancer,that is why your doctor ordered you a MRI to further investigate.
Try posting your questions and concerns in the cirrhosis forum,you might get better answers there.
'I was diagnosis about 20 years ago with stage 4. About 4 years ago doctor said I have End Stage liver disease. I feel good except for my veins in my legs and my legs being swollen.'
Did you have a biopsy that said your have stage 4 liver disease?
What is your most recent platelet count?
What is your MELD score?
I am afraid you misunderstood your doctor or your doctor knows nothing about liver disease. A gastroenterologist should although they are not liver disease experts like hepatologists.
'I don't feel sick at all.'
No one has End-Stage Liver Disease without symptoms. End stage liver disease is an irreversible condition that results from chronic liver disease and signals that liver failure is imminent. People with ESLD are often hospitalized many times a year for the life-threatening complications of cirrhosis. End-Stage means you will die very soon if you don't get a transplant. The only treatment for end-stage liver disease is liver transplantation. If you had end-stage liver disease 4 years ago why didn't the gastro refer you to a liver transplant clinic?
Early cirrhosis for most people has no symptoms. (MELD score usually below 15) When the liver decompensates you will have fluid retention in your abdomen like will look like you are pregnant, you may vomit blood, you may become confused and behave strangely or go into a stupor or coma. (MELD score usually above 20) You will become disabled and be unable to work or have much of a social life. You will suffer and be in some kind of physical or mental pain all the time. And finally at End-Stage Liver Disease is when your liver will usually begin to fail rapidly. (MELD score in the 30s)You will loss all body mass and become skin and bones as your body will be starved since the liver processes foods and nutrients is no longer working. If you don't get a liver transplant end-stage liver disease is fatal.
'I have not had any trement for Hep c.'
You need to get treated now. Otherwise in time you will no longer be able to treat as you will be too ill. Your doctor should never have let you develop cirrhosis (if you do have cirrhosis) without at least trying to treat you. Unless you have other major illnesses you haven't mentioned. Cirrhotics have less odds of cure and more symptoms and abnormal blood levels from current treatment then those with lesser liver disease.
Find another doctor ASAP who is knowledgeable and experienced. A hepatologist at a liver clinic or liver transplant center is best if you already have cirrhosis. Do not wait any longer to treat. Untreated cirrhosis in time will lead to End-Stage Liver Disease and death if you don't get a life saving liver transplant.
Why have you not treated since you know you have HCV with high stage for all these years? What is your geno type and IL28B? I'm on my second treatment. I've gone from stage 0 in 1999 to stage 2 in 2005. That's when I changed Dr's and started fighting! 2013 I've only gone up 1 grade. I've been on PPC,NAC,ALA,TMG and all other HR anti-fibrotic regiments including diet. What have you been doing ? Your GI for last 10yrs? I've learned so much since being here and credit my hepatoligist and MedHelp HepC forum for making me a knowledge fighter! Welcome to this forum!
I am sorry this happened and I am sorrier to say it is not uncommon. The more you learn the more shocked you might be when you discover your treatment options. For starters I would see another doctor and find out your Genotype. Next would be to have an accurate assessment of staging for your liver fibrosis. There are several ways to do this with varying degrees of accuracy & pros/cons.
There have been vast and incredible advancements in the treatment of Hepatitis C the past few years and there are more promising and efficacious drugs coming down the pike.
I would NOT wait for three more weeks to see a doctor who does not appear to be experienced or knowledgeable about Hepatitis C. I encourage you to be your own advocate and take charge of your health.
Here is a rather lengthy yet recent and comprehensive PDF called Evaluation and Treatment of Hepatitis C dated March 2012.
I wish it were not published for the Federal Bureau of Prisons but it has tons of good info. Right down to ***** fibrosis & need for biopsy, Triple therapy & dual therapy (P. 5), base line labs (P. 42) and pre-treatment assessments & evaluations, managing side effects, managing cirrhosis (P. 21), MELD scores (p. 22)
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