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NASH and cirrhosis of the liver.

Digestive Health | Last Active: Oct 28, 2023 | Replies (94)

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@colleenyoung

Molly, I get that. It can be so overwhelming getting all that information, to not understand the terms, etc. How are you suppose to know what questions to ask? We, the members of Connect, can help you with that. Right Rosemary?
I'm going to bring @caretothepeople into this conversation. She is so amazing at finding resources to help prepare for appointments and questions to ask.

Here are my favorite tips to start the discussion.
1. Always bring pen and paper to your appointment. When a term you don't recognize is mentioned, get the doctor to spell it. In your case you can bring your report with you. Your doctor should take the time to explain each term and what they collection of issues means in your case in particular.
2. Say it back. When you doctor explains something. Ask to repeat it back in your words. This helps you remember better, and it helps the doctor understand how you've interpreted her/his explanation. Misinterpretations can be cleared up then and there.
3. Bring a second pair of ears. If you have a friend or family member who can go with you, they can help take notes and be a second pair of ears.

Anyone got more tips to add?

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Replies to "Molly, I get that. It can be so overwhelming getting all that information, to not understand..."

Does anyone know what the term: intracytoplasmic cholestasis means? or lymphocytic infiltrates within the portal tracts means?

Hi Molly,
Here are some explanations I found through a Google search. I would confirm these interpretations to understand how these results apply to you.

From the book "Biopsy Interpretation of the Liver" by Stephen A. Geller and Lydia M. Petrovic
"Cholestasis is the presence of visible bile in liver tissue... In prolonged cholestasis, the cytoplasm of liver cells also contains bile pigment (intracytoplasmic cholestasis)."

The portal tract is sometimes also referred to as the portal triad. It gets its name from the lliver's triangular shape and its three major components: the hepatic artery, the hepatic portal vein, and the hepatic ducts, or bile ducts. http://www.wisegeekhealth.com/what-is-a-portal-triad.htm

Lymphocytes are seen in portal tracts in the normal liver, and infiltration increases in many inflammatory diseases. http://www.nature.com/icb/journal/v80/n1/full/icb20027a.html

Did you get these results from a liver biopsy?

Yes, I took these from my liver biopsy. I understand that there are different stages of liver disease and I would like to know what stage I am in. A question for my doctor in October. Just trying to figure out where I stand. Thank you for the definitions. I really appreciate the help.

You are doing exactly what I did when my testing began! And unfortunately, all of those big long medical terms are indeed frightening! I think it is a good thing that you are already searching for information and becoming familiar with some of the terms. I believe you will be better prepared to hear and understand what your doctor says at your appointment. And also better able to carry on a meaningful discussion.
I urge you to keep in mind that, your doctor is the one qualified to interpret these results for you. She/he will be able to explain what is going on and your current level of liver disease, a treatment plan, and a possible prognosis. Stay positive - remember our bodies are each unique, and so they respond differently.
I was completely surprised when my primary care physician noticed abnormal blood results in a routine annual blood test. I was pretty scared and hoped it was a mistake. Then 1 1/2 - 2 years later, I had a name for my liver disease. That's when I experienced what you are experiencing now.
Keep in touch, Rosemary

What type of liver disease do you have? I know it was found on the blood tests but did you also have a liver biopsy done? Are these repeated? I was told that due to having portal hypertension and gastric varices that they would have to be watched closely? Do you have that also? If so, Rosemary, how often are you tested?

@mollyb1968, My diagnosing and early stages are very much like what you are going thru. I had routine appointments with my GI and labs drawn every 3 months. That is how he could monitor the progression of my disease.
Yes, I have had liver biopsies. And I cannot recall how many. They are not fun, are they? It is my understanding that that is how they can tell what is actually happening to the inside liver itself. I also had numerous scans, and other procedures. Some were related to my specific condition, and some were routine that all liver patients get. Somehow these lab results and biopsy results give a clearer picture of what is going on, and how far it may or may not have progressed. Then treatment and/or meds could be ordered accordingly.
Each person and each disease is a unique case. So keep that in mind as I continue my conversations with you. I will be sharing my own personal experiences because that is all I know.
Portal hypertension is common concern with liver disease. My blood pressure was closely monitored and medications adjusted as needed. Portal hypertension is watched carefully because serious bleeding could develop thru the varicies. I was once told to think of it as varicose veins along the gastric track. Take comfort knowing that your doctor is already on top of this!. The real problem is when people don't know that they have a liver condition or they don't seek treatment.
I hope this helps. And you are not alone.
Rosemary

mollyb1968, Here is reply Part 2 - About me, and my disease.
As I told you routine labs revealed something going on with my liver. I was referred to GI. I think that it took over a year for me to be diagnosed with Primary Sclerosing Cholangitis (PSC) . The prognosis for this disease is liver transplant if/when it progresses to liver failure. And for me it progressed after around 8 years. I am happy to share that I was blessed to receive my transplant in 2009. Life is good for me, and that is why I am eager to share my experiences and answer questions.
The information that I am going to be sharing with you is from the early 8 years of my condition. This is when the routine procedures and are pretty universal for all liver diseases.
You are already way more knowledgeable than me when I began!
Rosemary

I'm so sorry for all you have been through. I am so glad that I have found you and your support. The more I find out the more concerned I am. Thank you so much for all your help and I do know I am not alone. I will continue to research and do my best to resolve my issues. I will keep you in my prayers and would like for you to pray for me also. God will get us all through. mollyB1968.