NASH and cirrhosis of the liver.

Posted by mollyb1968 @mollyb1968, Sep 1, 2016

I have type 2 diabetes and have been diagnosed with chronic non-alcoholic steatohepatitis with mild intracytoplasmic cholestasis. Minimal lobular actvity. Scattered lymphocytic infiltrates noted within the portal tracts with minimal hepatocyte necorsis and mild portal fibrosis. Due to also having portal hypertension, gastric varices and stomach polyps, it has been suggested that I may have cirrhosis of the liver as well. Does anyone else have this diagnosis and should I be greatly concerned? Is there treatment for this? Any help would be appreciated.

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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?

Jump to this post

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.

REPLY
@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?

Jump to this post

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

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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?

Jump to this post

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?

REPLY
@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?

Jump to this post

@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

REPLY
@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?

Jump to this post

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

REPLY
@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?

Jump to this post

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.

REPLY

HI,
You can take a look at clinical researches on NASH, it may interest you in some technical ways?
go to nashbiotechs dot com (haven't the right just now to post URLs ...)
some clinical studies are in late stage before drugs will be available on markets.
We have lots of hopes with ELAFIBRANOR, phase III study is "RESOLVE IT" ...

Take care.
JM

REPLY
@jmlfr28

HI,
You can take a look at clinical researches on NASH, it may interest you in some technical ways?
go to nashbiotechs dot com (haven't the right just now to post URLs ...)
some clinical studies are in late stage before drugs will be available on markets.
We have lots of hopes with ELAFIBRANOR, phase III study is "RESOLVE IT" ...

Take care.
JM

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I have tried going to that web site but get nowhere. Also, I am new to NASH diagnosis and have been reading about the MELD score. What is that and how do I get mine. I had liver biopsy May 17th of this year but the doctor has not told me what stage I am in. My biopsy did not say cirrhosis exactly they said but I have portal hypertension, gastric varices, fundal polyps and NASH. It did mention some portal fibrosis with minimal hepatocyte necrosis. The PA stated that the doctor felt I had cirrhosis but how do I know for sure?

REPLY
@jmlfr28

HI,
You can take a look at clinical researches on NASH, it may interest you in some technical ways?
go to nashbiotechs dot com (haven't the right just now to post URLs ...)
some clinical studies are in late stage before drugs will be available on markets.
We have lots of hopes with ELAFIBRANOR, phase III study is "RESOLVE IT" ...

Take care.
JM

Jump to this post

@mollyb1968, I think that you are putting the 'cart before the horse' . Yes, it is a good thing to learn about your condition, but only your doctor can apply all of this to you. Be aware that there is a fine line or balance between being informed and being confused by too much information that might or might not apply to you. So be careful not to try to read too much into it. Trust the professionals.
Cirrhosis is a general term for inflammation in the liver. Many things can cause inflammation (cirrhosis): over the counter meds; certain prescription drugs, alcohol, injury, liver diseases (including NASH). And inflammation (cirrhosis) can even be reversed with proper treatment, depending on the cause for the inflammation. How will you know for sure? Your doctor is the only one who can determine this and what level you are at.
The MELD score is a numerical system developed to prioritize adults who are waiting for liver transplantation. The score can go up or it can go down over time. There are numerous MELD calculators sites available. I was only aware of my score if my doctor mentioned it, and that was when I was placed on transplant list. How I felt was way more informative to me as a patient: When I felt good - I didn't care; and when I felt bad - it didn't really tell me anything either because by that time I knew how sick I was.
Those other things you mentioned are happening inside your liver. Your doctor can explain that, and if more information is needed you might need more tests done.
I will tell you what I was told early on by my doctor. He told me that my primary job was to take care of myself by healthy eating, getting regular exercise, and keep my appointments. This is my advice to you.
Yes, it is so hard to wait! I encourage you to put aside the research today and use the time doing something healthy that you enjoy!
Rosemary

REPLY
@jmlfr28

HI,
You can take a look at clinical researches on NASH, it may interest you in some technical ways?
go to nashbiotechs dot com (haven't the right just now to post URLs ...)
some clinical studies are in late stage before drugs will be available on markets.
We have lots of hopes with ELAFIBRANOR, phase III study is "RESOLVE IT" ...

Take care.
JM

Jump to this post

Thank you Rosemary.

REPLY
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