Cirrhosis Support Group

My situation very much parallels yours. I had a CT scan a year ago for stomach/digestive discomfort. A colonoscopy was performed and they found some inflammation; blood work and stool samples were negative. Bottom line - the GI doctor misdiagnosed the problem. In December I began throwing up blood and went to the emergency room. It turns out I had bleeding varices from portal hypertension. A biopsy revealed I had decompensated cirrhosis.

The new GI doctor could not determine the cause of the cirrhosis; all known causes were ruled out although I had had the cirrhosis for quite some time. Since learning about my disease, I have done much research and have received a lot of information from the good people on this site.

Have they done an EGD (esophagogastroduodenoscopy)? This procedure will tell if you have varices. I am taking Nadolol to reduce my blood pressure as a means to prevent future bleeding.

I have found no information that reveals whether your liver has stabilized or is getting worse other than blood tests. I know of nothing that you can do to prevent the further progression of the disease especially when you do not know the cause. However, I am following a good diet to prevent the liver from overworking. Due to portal hypertension, I have to limit exercise but I do a lot of walking. Reducing stress and thinking positively also is helping.

The Steelers winning the Superbowl also helped (I grew up in the Mon Valley).

It seems it is quite common in cirrhosis for liver functions and enzymes, to be normal until it is too late to do anything. That is why there are lots of misdiagnosis.
What my doctor tells me is the earlier you start treating the cause, the better your odds of having a normal life.
The problem, sometimes, is identifying the cause.

I just wanted to clarify that the CT scan was normal. I was under the impression that cirrhosis would be detected on a CT scan. Anyone have any info on this?

I wouldn't mind talking with you at all about what I had to do to stay healthy when I suffered with cirrhosis. I would like to know more about what your doctor told you first. It would be more of a disservice to recommend anything contrary to your doctors wishes, in my opinion. I can tell you this: I FELT just fine up until about 3 months before being diagnosed. I worked 7 days a week, played golf, enjoyed going out with friends & the girlfriend....I lived a normal 33 year olds life. That changed so quick, I couldnt believe it.

It was last June I was diagnosed. I received my transplant this past Christmas Day. It was a lot of work, and if you wouldn't mind sharing a little bit more of what you're "restrictions" are at this point - I can tell you a little more on how I handled things.

A fairly common route, that I too followed, per doctors orders: No more than 2000mg/2g sodium per day. I was also fluid restricted to 32oz's day. Counting even the ounces of water in soups!

Now, keep in mind - I was already in severe stages of liver disease. The first week of diagnosis, my MELD score was already in the high 20s. I was in rough shape. If you are not as ill, your restrictions will probably be looser. And of course, absolutely NO drugs or alcohol.

Christopher

Christopher, Its about 18 months since I was diagnosed by a liver biopsy. I am 63 years of age and I still continue to have normal liver function and blood work. I also still have no jaundice, pain or symptoms. I guess we have to do what we can to live healthy and see how it goes. I take milk thistle two times a day and going to three times a day as suggested. I also read that taking too many supplement is not good as it is difficult for the liver to process them. IU still have days where I worry but I can't change anything at this point. My best to all.

Thanks, Coppa

Coppa,
Don't drink! Irrespective of how you may have contracted cirrhosis, alcohol will only make it worse. Believe me, you don't want that to happen. Here is some info I found while clearing out the garden shed........it may help......

Craig

There are four stages of chronic liver disease.

1. The commonest and mildest form of liver damage is a ‘fatty’ liver. This can be identified by blood tests, and is reversible with abstinence from alcohol.

2. The next step cannot be identified by blood tests, but a liver biopsy will show inflammation in addition to the excess fat. This is called steatohepatitis. In severe cases, jaundice may develop. A diagnosis of acute alcoholic hepatitis can then be made (see below).

3. At the next stage, fibrosis (scar tissue) is present. Again, this cannot be detected by blood tests or routine scans.

4. Cirrhosis occurs when the fibrosis reaches the stage when the normally soft liver is divided into thousands of pea-sized pockets of liver tissue, wrapped in fibrosis. Once cirrhosis develops, the prognosis partly depends on whether or not you continue drinking. People with compensated cirrhosis – meaning they have no symptoms – and who then stop drinking, have an 80% chance of being alive after 10 years.

Hello everybody.. just wanted to comment a few things. Finding the cause to the cirrhosis is the hardest part in my eyes. And if they can't narrow it down with all test results not confirming anything, then there is no real way for them to treat properly. THAT is where we are still. My son has been under review since Jan 2007 and there has been no cause determined. The docs call him - "the mystery" - and he truly is- Our last gastro. labelled the cause as autoimmune hep which had possibly burnt out, but not all tests agreed with this diagnosis. Our new doc says that previous diagnosis seems odd especially when it was more a guess than a diagnosis. Soooo.. thats where we stand.. undefined again... unpleasingly unanswered.. its tough when the specialists cant figure it out.. you know?

Hi, Just wondering if the drs. have tested his iron levels? They probably have but if not, that's a test I'd definetely want done. It's a simple blood test, but not regularly done when you have blood tests. Could be high iron is a problem.
Anne

prior to being hit with the cirrhosis label I was checked for Hemachromotosis. A hereditary liver disease caused by elevated iron levels sometimes confused with cirrhosis. It usually shows up on searches as a subhead for liver disease. A simple blood test crossed that off the list (as best they could because it is a tricky diagnosis).Ask your Dr, always nice to eleminate something.

Actually Hemachromotosis is one of the causes of cirrhosis.