1. < Digestive Health

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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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 19, 2016
In reply to @rosemarya "@mollyb1968, I welcome you to this discussion. I want you to know that you are not..." + (show)
@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

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@mollyb1968, I have been away, hiking (can you believe it!!!) in Utah. And I have had very sparse internet connection. I am wondering if you have had your October appointment yet. I hope that you have had the opportunity to discuss all your concerns with your doctor.
Prayers that you are feeling well. Rosemary

REPLY
mollyb1968 | @mollyb1968 | Oct 19, 2016
In reply to @rosemarya "@mollyb1968, I welcome you to this discussion. I want you to know that you are not..." + (show)
@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

Hi Rosemary. I am so glad you felt up to hiking and I hope you had a good time. I did have my October appointment and asked a lot of questions. She sent me for an ammonia level test, which was only slightly elevated at 38 and an ultrasound. The ultrasound showed enlarged liver at 19.4 cm. It did not show anything else, so do I really have cirrhosis? She said that I was stage IV fibrosis but my meld scorer of 6 was great. Still a lot of unanswered questions. She said it may take 20 years or six months? What does that mean anyway? I go back in three months and have another EGD in March to check for the portal hypertension and gastric varices. How often does one have to go back to see the progress? Any info you can give will be greatly appreciated. I do know that I am in the early stages. Thanks for lending an ear and I am glad to see you back on here. My children does not think this is serious? Is it or isn't it?

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 20, 2016
In reply to @rosemarya "@mollyb1968, I welcome you to this discussion. I want you to know that you are not..." + (show)
@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

@mollyb1968, You sound like you are going to be a proactive patient; the best kind!
Awesome that you are early stage and being treated. Everyone is not so fortunate.

Every three months sounds like the routine schedule for appointments. This will allow the doctor to do the labs, physical exam, and scans/scopes/whatever, to keep tabs on your liver. It is important for you to keep on whatever schedule that is recommended for you; don't let yourself become complacent about this.
It is extremely frustrating be told the span of 6 months to 20 years. Unfortunately that is how it is. And by these regular visits, your doctor can know if there is any sign of complications. Better to detect and treat early than to face unexpected consequences.

Keep your question list handy and add to it as necessary. Call your doctor if any significant symptoms or changes to your health.
Stay positive. Focus on taking care of you everyday.

Hugs and a hand to hold,
Rosemary

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 21, 2016
In reply to @rosemarya "@mollyb1968, I welcome you to this discussion. I want you to know that you are not..." + (show)
@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

@mollyb1968 I'm not surprised that your children do not think this is serious. First, mom's don't get sick. And second, if you don't look sick and you don't act sick (whatever that is), then you must not be sick!
I used to say that I had a liver condition that needed to be monitored. And so, because I did not look or act sick people assumed I was ok. Ultimately you and your doctor are the ones who will deal with this. Maybe one of your kids would accompany you to one of your appointments. It really does help to have someone who is aware of your condition for some emotional support..
Rosemary

REPLY
mollyb1968 | @mollyb1968 | Nov 30, 2016
In reply to @caretothepeople "Thank you for tagging me in this discussion, @colleenyoung! And hello to you, @mollyb1968. Getting a..." + (show)
@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

Jump to this post

I have a question: Since being newly diagnosed with cirrhosis, I have been having problems with my sugar dropping. It has never done this before and has always been high (200's, 300's) but now is going down in the low 50's. After my sugar drops, I feel awful. Sometimes I can tell when it is dropping and other times I can't. It woke me up this morning before 6 a.m., feeling bad, shaky, sweaty and feeling like I was going to pass out. Could my liver have anything to do with this or is it just sugar related? Does anyone know. I see the doctor in a couple of weeks but just looking for advice. My feet and legs have been swelling also. I was just at the lung doctor and he was stating that I had considerable fluid in my legs. I am on Lasix twice daily for that. Any suggestions would be appreciated. Thank you in advance.

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 1, 2016
In reply to @caretothepeople "Thank you for tagging me in this discussion, @colleenyoung! And hello to you, @mollyb1968. Getting a..." + (show)
@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

Jump to this post

@mollyb1968, I am so sorry that you are feeling awful. I do not have the answers that you are looking for. Even though have a scheduled appointment in a couple weeks, I would encourage you to call the doctor's office and relay your concerns to them. That way the doctor can let you know if this needs to be addressed now. Unfortunately, the reality is that changes can occur quickly with cirrhosis. You have been diligently monitoring your health; you do not want to become complacent now. You might need a medicine adjustment, or you might need your appointment earlier. Let your doctor make that decision for you.
Let me know what you find out.
Rosemary

REPLY
mollyb1968 | @mollyb1968 | Dec 1, 2016
In reply to @caretothepeople "Thank you for tagging me in this discussion, @colleenyoung! And hello to you, @mollyb1968. Getting a..." + (show)
@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

Jump to this post

I talked with my primary care physician and he adjusted my meds for the diabetes. I will keep my appointment on the 12th. Thank you for your advice.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 2, 2016
In reply to @caretothepeople "Thank you for tagging me in this discussion, @colleenyoung! And hello to you, @mollyb1968. Getting a..." + (show)
@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

Jump to this post

@mollyb1968 How great that you are being proactive!

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Dec 2, 2016
In reply to @caretothepeople "Thank you for tagging me in this discussion, @colleenyoung! And hello to you, @mollyb1968. Getting a..." + (show)
@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

Jump to this post

Hi @mollyb1968,

Swollen feet can be a common issue with diabetes. Although some of the causes for swollen feet and legs in the following discussion are different, you may find other members who have experienced some of the same symptoms as yourself here: http://mayocl.in/2gU3wsB

Also, according to Mayo Clinic, cirrhosis can lead to fluid accumulation: http://mayocl.in/2fSGiC5

@mollyb1968, I sincerely hope you find much-needed relief soon.

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 2, 2016
In reply to @caretothepeople "Thank you for tagging me in this discussion, @colleenyoung! And hello to you, @mollyb1968. Getting a..." + (show)
@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

Jump to this post

@mollyb1, I'm happy that you communicated with your primary care physician. I hope that soon the meds adjustment will help you feel better. As @kanaazpereira stated, swollen feet are a common issue with diabetes. Also with cirrhosis the body can retain fluids (ascites). I also was taking Lasix with my liver disease for the swelling. Be sure to read the link she provided for more information about that. I'm hoping the best for you at your upcoming appointment.
Rosemary

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