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mollyb1968
@mollyb1968

Posts: 50
Joined: Aug 31, 2016

NASH and cirrhosis of the liver.

Posted by @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.

REPLY

Hi @mollyb1968, welcome to Connect! It sounds like you’re going through a lot right now so I’d like to introduce you to some other Connect members who may be able to share some of their own experiences so you can better understand your situation. Please meet @rosemarya, @mnangelmom, @peakbagger, @lorettanebraska, @sandraf, @havithealthy1, @hurtle12 and @dianne1.

You may also be interested in taking a look at this past discussion where members are talking about NASH and cirrhosis of the liver http://mayocl.in/2bVRAY4

Molly, there’s a lot of information is the details of your diagnosis. Have you been able to sit down with your doctor and go through all the terms to develop a treatment plan?

@mollyb1968, I welcome you to this discussion. I want you to know that you are not alone. I’ve had a complicated history due to liver disease, and I can say that I know what you are experiencing. I’m here and will provide any support or encouragement that that my own experience might allow.
At this point, I say that it is highest priority for you to talk with the doctor who made this diagnosis; I am surprised that he/she did not give you a full explanation of what is happening inside of you. Are you being treated by your primary care physician or a GI? My primary care physician referred me to GI specialist, who often consulted with a liver specialist. If you are not being treated by GI, I urge you to do so. I’m wishing for the best plan of action for you. Rosemary

I would like to share the following link to information about NASH.
http://www.mayoclinic.org/diseases-conditions/nonalcoholic-fatty-liver-disease/home/ovc-20211638

@nategilbraith

Hi @mollyb1968, welcome to Connect! It sounds like you’re going through a lot right now so I’d like to introduce you to some other Connect members who may be able to share some of their own experiences so you can better understand your situation. Please meet @rosemarya, @mnangelmom, @peakbagger, @lorettanebraska, @sandraf, @havithealthy1, @hurtle12 and @dianne1.

You may also be interested in taking a look at this past discussion where members are talking about NASH and cirrhosis of the liver http://mayocl.in/2bVRAY4

Molly, there’s a lot of information is the details of your diagnosis. Have you been able to sit down with your doctor and go through all the terms to develop a treatment plan?

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I have talked to my gastroenterologist, however, did not understand enough to ask the appropriate questions such as how this will affect my life and life expectancy, what I will experience, medications for this disease, etc.

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?

Colleen, I would like to add (for anyone undergoing any kind of treatment) that you ask where/who you can contact if you come up with more questions afterward. Sometimes there can be a long span of time between appointments. Rosemary

@rosemarya

@mollyb1968, I welcome you to this discussion. I want you to know that you are not alone. I’ve had a complicated history due to liver disease, and I can say that I know what you are experiencing. I’m here and will provide any support or encouragement that that my own experience might allow.
At this point, I say that it is highest priority for you to talk with the doctor who made this diagnosis; I am surprised that he/she did not give you a full explanation of what is happening inside of you. Are you being treated by your primary care physician or a GI? My primary care physician referred me to GI specialist, who often consulted with a liver specialist. If you are not being treated by GI, I urge you to do so. I’m wishing for the best plan of action for you. Rosemary

I would like to share the following link to information about NASH.
http://www.mayoclinic.org/diseases-conditions/nonalcoholic-fatty-liver-disease/home/ovc-20211638

Jump to this post

Thank you for sharing your like. I found it very informative. I was kind of in shock when I got my diagnosis and she did explain some but I was not aware of the appropriate questions to ask. I know there are stages and I don’t know what stage I am in, however, the doctor thinks that I do have cirrhosis due to the fact that I have portal hypertension, gastric varices, fundal polyps and, of course, I am a type 2 diabetic which I am having trouble controlling. Please tell me more of what you have experienced and how you have coped with it. Thank you so much, Rosemary. I appreciate the dialogue.

Thank you both for your information. I know that I am concerned about all of this and I live alone so there is just too much to think about.

@mollyb1968

Thank you both for your information. I know that I am concerned about all of this and I live alone so there is just too much to think about.

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@mollyb1968, I do not think that living alone presents any kind of a problem, except as you say, too much to think about. I am happy for you that you have found us. We just love to chat. Please ask questions, anytime.

@rosemarya

@mollyb1968, I welcome you to this discussion. I want you to know that you are not alone. I’ve had a complicated history due to liver disease, and I can say that I know what you are experiencing. I’m here and will provide any support or encouragement that that my own experience might allow.
At this point, I say that it is highest priority for you to talk with the doctor who made this diagnosis; I am surprised that he/she did not give you a full explanation of what is happening inside of you. Are you being treated by your primary care physician or a GI? My primary care physician referred me to GI specialist, who often consulted with a liver specialist. If you are not being treated by GI, I urge you to do so. I’m wishing for the best plan of action for you. Rosemary

I would like to share the following link to information about NASH.
http://www.mayoclinic.org/diseases-conditions/nonalcoholic-fatty-liver-disease/home/ovc-20211638

Jump to this post

Yes, I remember feeling shocked at my diagnosis. My mind raced everywhere too. I am not familiar with the staging labels. How did I cope? Well, I cried a lot,; I tried to read all I could about my disease; I had to defend myself to friends who said I looked too healthy/couldn’t have a liver disease; I prayed a lot and I asked for prayers;; I learned to reach out to others for help and to accept help from others; I took extra good care of me. I know this doesn’t come close to the kind of information you seek. But I’ll continue to chat with you. For now, take it one step at a time. Stay positive. Eat healthy. Exercise. Develop a good communication between you and your doctor. When do you see doctor again? I know you said that doctor thinks you have cirrhosis, but do you know if that is going to be further investigated? Is the uncontrolled type 2 diabetes play a part in this? And sometimes, NASH can reversed: Ask your doctor about that, too. Our liver is an amazing organ! Rosemary

@nategilbraith

Hi @mollyb1968, welcome to Connect! It sounds like you’re going through a lot right now so I’d like to introduce you to some other Connect members who may be able to share some of their own experiences so you can better understand your situation. Please meet @rosemarya, @mnangelmom, @peakbagger, @lorettanebraska, @sandraf, @havithealthy1, @hurtle12 and @dianne1.

You may also be interested in taking a look at this past discussion where members are talking about NASH and cirrhosis of the liver http://mayocl.in/2bVRAY4

Molly, there’s a lot of information is the details of your diagnosis. Have you been able to sit down with your doctor and go through all the terms to develop a treatment plan?

Jump to this post

If you are not due for appointment, call and ask to come in and have a discussion. My doctor told me to call anytime. He is a real gem and one of my favorite people!

@rosemarya

@mollyb1968, I welcome you to this discussion. I want you to know that you are not alone. I’ve had a complicated history due to liver disease, and I can say that I know what you are experiencing. I’m here and will provide any support or encouragement that that my own experience might allow.
At this point, I say that it is highest priority for you to talk with the doctor who made this diagnosis; I am surprised that he/she did not give you a full explanation of what is happening inside of you. Are you being treated by your primary care physician or a GI? My primary care physician referred me to GI specialist, who often consulted with a liver specialist. If you are not being treated by GI, I urge you to do so. I’m wishing for the best plan of action for you. Rosemary

I would like to share the following link to information about NASH.
http://www.mayoclinic.org/diseases-conditions/nonalcoholic-fatty-liver-disease/home/ovc-20211638

Jump to this post

I see the doctor in October. I will start making a list of things I need to know. Thank you again for your help. This means a lot to me.

@nategilbraith

Hi @mollyb1968, welcome to Connect! It sounds like you’re going through a lot right now so I’d like to introduce you to some other Connect members who may be able to share some of their own experiences so you can better understand your situation. Please meet @rosemarya, @mnangelmom, @peakbagger, @lorettanebraska, @sandraf, @havithealthy1, @hurtle12 and @dianne1.

You may also be interested in taking a look at this past discussion where members are talking about NASH and cirrhosis of the liver http://mayocl.in/2bVRAY4

Molly, there’s a lot of information is the details of your diagnosis. Have you been able to sit down with your doctor and go through all the terms to develop a treatment plan?

Jump to this post

I will. I especially need to know what some of the terms are. They sometimes act like they are afraid to tell you anything. Answers will only inform me and maybe I can find something I can do to help this disease.

@rosemarya

@mollyb1968, I welcome you to this discussion. I want you to know that you are not alone. I’ve had a complicated history due to liver disease, and I can say that I know what you are experiencing. I’m here and will provide any support or encouragement that that my own experience might allow.
At this point, I say that it is highest priority for you to talk with the doctor who made this diagnosis; I am surprised that he/she did not give you a full explanation of what is happening inside of you. Are you being treated by your primary care physician or a GI? My primary care physician referred me to GI specialist, who often consulted with a liver specialist. If you are not being treated by GI, I urge you to do so. I’m wishing for the best plan of action for you. Rosemary

I would like to share the following link to information about NASH.
http://www.mayoclinic.org/diseases-conditions/nonalcoholic-fatty-liver-disease/home/ovc-20211638

Jump to this post

I feel confident that you will learn more when you return to your October appointment. . And it is not easy to wait and wonder. I am happy that this chat has helped you. I remember me and my husband feeling completely alone and frightened because no one was available at the beginning to talk to outside of the doctor office. I look forward to ongoing conversation with you. Rosemary

Thank you for tagging me in this discussion, @colleenyoung! And hello to you, @mollyb1968.

Getting a diagnosis of any type can certainly be scary, especially when it comes as a surprise. A range of emotions, including shock, sadness, and even angry are common. I can tell you that when liver disease came up in my family recently there was alot of denial and resistance to making changes/seeking care, which of course is not very productive.

It sounds like you are being proactive and very motivated, which is so wonderful. Ultimately you are your own best advocate. Yet navigating all the information being thrown at you can be a lot to digest.

As Colleen mentioned, there are a lot of great resources out there that may assist in learning more about NASH and feeling prepared for upcoming appointments. Mayo Clinic has a guide of high level questions to ask the doctor here. These are a great starting point!: http://www.mayoclinic.org/diseases-conditions/nonalcoholic-fatty-liver-disease/diagnosis-treatment/preparing-for-appointment/ptc-20211651

The American Liver Foundation has a wealth of information and resources. For example, here is a guide they have for those newly diagnosed with NASH. This may have useful information. http://www.liverfoundation.org/downloads/alf_download_921.pdf

-Melody

@caretothepeople

Thank you for tagging me in this discussion, @colleenyoung! And hello to you, @mollyb1968.

Getting a diagnosis of any type can certainly be scary, especially when it comes as a surprise. A range of emotions, including shock, sadness, and even angry are common. I can tell you that when liver disease came up in my family recently there was alot of denial and resistance to making changes/seeking care, which of course is not very productive.

It sounds like you are being proactive and very motivated, which is so wonderful. Ultimately you are your own best advocate. Yet navigating all the information being thrown at you can be a lot to digest.

As Colleen mentioned, there are a lot of great resources out there that may assist in learning more about NASH and feeling prepared for upcoming appointments. Mayo Clinic has a guide of high level questions to ask the doctor here. These are a great starting point!: http://www.mayoclinic.org/diseases-conditions/nonalcoholic-fatty-liver-disease/diagnosis-treatment/preparing-for-appointment/ptc-20211651

The American Liver Foundation has a wealth of information and resources. For example, here is a guide they have for those newly diagnosed with NASH. This may have useful information. http://www.liverfoundation.org/downloads/alf_download_921.pdf

-Melody

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Thanks Melody! I always appreciate your guidance to resources.

Liked by caretothepeople

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