I am trying to understand this business of being compensated. I had a biopsy this week that revealed stage 4 cirrhosis. Activity level 2. (Don't know what that is.) I have very mild symptoms, other than the need to sleep all the time. And my labs are good. So how long can I expect to live before liver failure sets in - I know these labs aren't going to stay this good forever. Please help me clarify this fairly devastating news. I just don't know what to think. I'm seeing my internist tomorrow so maybe he'll have some answers.
Sorry to hear of your diagnosis; it must have come as a shock, yes? Compensated cirrhosis differs from decompensated disease in several ways. The most important distinction is that compensated liver disease means the liver continues with it’s primary functions; it filters, synthesizes and metabolizes foods and proteins as it should.
Some patients are diagnosed with compensated cirrhosis and continue for many years while others aren’t as fortunate and become decompensated rather quickly. When you see your internist tomorrow, be sure to ask for a ‘MELD’ score; this can be determined from rather basic blood test results, and can help determine morbidity/mortality progression.
Another scale used is the Child-Turcotte-Pugh score; you’re likely in Child-class A, being compensated; class B and C are decompensated.
Have you had any swelling of the ankles, feet or abdomen? Any confusion or periods of combativeness?
How long ago were you diagnosed with HCV? Have you tried treatment for it yet? If so, which form(s) and how did it go?
For what it’s worth, there are a number of members here that have been diagnosed with early cirrhosis such as yourself, some of them nearly two decades ago, and they continue to do relatively well. Of course, this is the exception rather than the rule, but it’s possible to live for years without progressing into End Stage Liver Disease,
One additional quick thought that I missed above. Be sure to ask your doctor tomorrow if they feel an EGD is appropriate. This is a scope to peek down your esophagus to check for development of ‘esophageal varices’. These are enlarged veins that develop in the throat as a result of the cirrhosis (more directly as a result of portal hypertension) that are readily managed with band ligation. This is a relatively simple procedure, and almost risk free; the alternative is hemorrhaging of the esophagus with potentially catastrophic results.
Be sure to avoid all alcohol in the interim until this is all straightened out. Drinking booze right now will be the worst thing you could do to yourself. Good luck and let us know how it goes,
Being compensated is much better business than being decompensated... and though I'm sorry that it's for less than happy reasons, welcome to the forum. My husband was diagnosed with stage 4 back in 2007 and still is considered "compensated," so don't lose hope. No doubt hearing 'cirrhosis' is devastating, but it does not necessarily mean end-stage is around the corner. Besides my husband, there are a number of members who have lived for years, quite well, with Stage 4 disease.
Lots of good essential info from Bill above. Hopefully your internist will also provide you with some answers, but with Stage 4 disease, if you have access to a hepatologist, that would be the best GI specialist to handle your condition. "Activity level 2" most likely is referring to the grade of inflammation in your biopsy sample (inflammation/cell activity at any given time is measured on a scale of 0-5 with the low numbers meaning lower inflammation, so 2 would be moderate inflammation) and can vary from biopsy to biopsy because inflammation isn't constant.
Don't let this diagnosis paralyze you. I don't mean to minimize what you're going through, but there are options to prolong your life and live well even with a diagnosis of Stage 4. The important thing is to learn about what you can do to help yourself stave off decompensation as long as possible. That means low-salt, low-fat, no alcohol, plenty of exercise: a diligent course of healthy living can go a long way in fighting this disease. I'm very glad to hear that your blood results are good; there's a lot you can do to help keep them that way.
Decompensation refers to certain physical symptoms that may become apparent as the liver dysfunction increases. The classic signs of decompensation are signs of the following:
1. ascites (fluid buildup in the abdomen) and/or edema
2. encephalopathy (confusion and forgetfulness)
3. varices (collateral blood vessels that can bleed out)
4. jaundice (yellowing of skin or eyes)
If you have well compensated Stage 4 disease, there is possibly option to do treatment if hcv is the cause of your cirrhosis. Hopefully your doctor will give you more information about that as well, or refer you to a physician who can explore those options for you. Hope that helps, and let us know if we can help with any more questions. ~eureka
I received my cirrhosis diagnosis in 2004 or 2005. I was able to clear the HCV infection, and am doing just fine. I tire easier that I used to. But I work ful time, kayak, bike, and have no limitations other than no booze and a self-imposed restriction on dating women who own Pomeranians or indoors cats.
I believe I get healthier as time goes on.
If you have Hep C, getting rid of that should be your focus. Then hopefully the rest will take care of itself.
Try to find a top notch hepatologist. You want the best you can get in your corner right now. A teaching hospital is a good place to start. Post your city and someone here might make a recomendaion.
I got the news of a Stage 4 dx in November 2008. Yup, quite a shock at the time since I was mildly symptomatic at the time. I began tx in Jan. of 2009, did 72 weeks and ended in May 2010. I'm now 6 months post and awaiting a PCR in early December. Week by week, month by month, I am feeling better and better.
As the others has said, don't give up hope. Do try to see a Dr. that is well versed in HCV with emphasis on cirrhotics. Tx is still a viable option, but may need to be tweaked a bit as far as dosages and length of tx to give us the best odds of SVR. In the meantime, a healthy lifestyle is so important. The fewer assaults on our livers, the better.
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