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10/02/2011 03:08 PM

Completely confused

depressed7
 
Posts: 4
New Member

I am 36 years old and I was diagnosed with NASH about 4 years ago, it took me 5 yrs. for them to listen to me and do a biopsy. I have this nagging pain in my right side. Lately I have been so tired, I can hardly function. I had a liver biopsy and I was in severe fibrosis getting ready to step into cirrhosis. That was 4 years ago. I am feeling worse. The doctor just did an ultrasound. I do not get the results until Wed. I have 2 children to take care of. What do I need to expect?
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10/02/2011 05:39 PM
bjlvls
bjlvls  
Posts: 1015
Senior Member

Hi, Welcome to the Group from a fellow NASHer (who is also cirrhotic). First thing you need to do is calm down. Wednesday will be here soon, and you'll have more to go on then. Right now the nagging pain in your right side could be from a number of things, but getting those ultrasound results will narrow down the possibilities considerably. If you are eating a low-fat, low salt diet, continue with that and plan on it being a lifestyle change, forever! Next, get a copy of your lab results (bloodwork) and a copy of the radiologist's report from the ultrasound to start a notebook for your own reference. You'll find it to be quite helpful as you continue treatment. If you are not seeing a hepatologist, consider getting a referral to one from your current doctor. There's a greater chance at your age that symptoms of liver damage can be controlled or reversed and your babies will have thier momma in their lives for a long long time! Keep us posted, Hugs, Bobbi

10/02/2011 05:53 PM
mpmom
mpmom  
Posts: 3278
VIP Member
I'm an Advocate

depressed7,

I know it's scary.

If you have progressed to Cirrhosis and are stable not much will change.

Usually Drs will follow you every 6 months to a year. They will usually do a US during the same time frame. Endoscopy (If nothing shows abnormal) every 1 to 2 years.

Treatment for Cirrhosis is determined by the cause. For NASH it consists of losing weight (Slowly) if needed, Controlling diabetes if needed, and basically living as healthy as possible

Cirrhosis patients can live a long normal life in what is called a Compensated state.

If the disease progresses to what is called a Decompensated state symptoms such as

Ascites (Free fluid in the abdomen)treated with low sodium diet and diuretics and if needed paracenthesis.

Varices (enlarged veins in the esophagus)Treated with banding and betablockers

Encephalopathy (mental confusion caused by toxins) Treated with Lactulose and Rifaximin

If the disease continues to progress Liver transplant offers a real chance at a new life.

Keep copies of all test results.

Being proactive in your health care is very important. Make certain that your Dr is either a Hepatologist or a GI that works with liver patients.

Below is a link to my site for general information on Cirrhosis.

http://livingwithcirrhosis.weebly.com/

Sorry about that it looks like Bobbi and I were typing at the same time.

Post edited by: mpmom, at: 10/02/2011 05:55 PM


10/02/2011 10:29 PM
tabbtech
tabbtech  
Posts: 697
Member

As usual Bobbi and Gail have given you great advice. I've found myself being very grateful for them lately. I would only add that you might want to try Dr. Sandra Cabot's book The Liver Cleansing Diet. It has helped me improve Liver function dramatically, and wheather you have progressed to Cirrhosis or not it can really help.

I pray that you have not progressed to Cirrhosis.

Peace and Joy

Paul


10/03/2011 06:56 PM
sammy566
sammy566  
Posts: 339
Member

Your liver has no nerve endings, therefore liver pain is not really liver pain.

What usually happens is as your liver gets larger, it can put preasure on other organs that do have nerve endings, such as your intestines.

A lot of times your enlarged liver can squish your intestine and trap gas.

The easiest thing to try is a product like gaviscon, if it gets rid of the problem then no further worry, it worked for me.

Good luck.

Sammy.

PS, I'm talking out of my own experience, and have no medical training.


10/03/2011 08:37 PM
mpmom
mpmom  
Posts: 3278
VIP Member
I'm an Advocate

Sammy is right sometimes the pain does come from the pressure on other organs.

The liver doesn't have any nerve endings However the membrane around it has plenty. In NASH the liver is full of Fat (steatosis) when the liver swells "Inflammation" (hepatitis)

As the liver expands, its membrane is stretched and the organ gets heavier.This causes pain as it is pressed against other organs & the ribs , If you also have a enlarged spleen you can have similar pain on the left side also.

It's also important to remember that pain can be a warning. If it gets worse or changes you need to contact your Dr. It can be caused by many things including gallstones and such.


10/08/2011 06:59 PM
depressed7
 
Posts: 4
New Member

Thank you all for the helpful advice. I have the results and they are pretty sure that I have stepped into cirrhosis. My MELD (?) score is good right now so they said I will not be put on the list as of yet. They did tell me that 75% of my liver is infiltrated with fat. I go in two weeks and do an ERCP. And have a follow up in six months. My #'s are elevated and my liver is inflammed. I am sorry that we have met under these circumstances but I sure am glad that we were able to meet. Can anyone tell me any warning signs to watch for with this?

10/08/2011 07:02 PM
depressed7
 
Posts: 4
New Member

One more question. I have developed a twitch in my left hand. Could this be a part of the condition?

10/08/2011 09:58 PM
mpmom
mpmom  
Posts: 3278
VIP Member
I'm an Advocate

depressed7,

Do you have copies of your labs and Ultra sound , if not get copies.

If you do ,What is your Bilirubin , INR and Creatinine?

It sounds like they think you have blockage in your biliary or pancreatic ductal systems.

This is what the ERCP is usually used for.

The "things to look for" vary with the advancement of the disease. If you do have Cirrhosis and it is in the early stages (Compensated). You should watch for edema in your lower legs, Follow a low sodium diet and basically try to be as healthy as possible.

The twitch in your left hand can be from a million different things. In Cirrhosis these type of things usually happen when the disease is advanced. You should ask your Dr. It needs to be checked out.

If you haven't already check out the link I posted earlier it contains tons of basic information that should help you.

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