Cirrhosis - Hep C induced - Grade 3, Stage 4

Lately I've been feeling terrible and am not sure what I need to do.  I quit a good job in 1998 for various reasons, one being I did not feel well.  After going for a biopsy (terrible 1st exp.) at Harborview Hosp. and being told I had plenty of time to wait for treatment.  WRONG ADVICE.  And then a second biospy later at Virginia Mason Hosp. in Seattle (WONDERFUL PLACE TO GO), I ended up finding out I was Stage 4, Grade 3, which upset me severely.  

I did a year of treatment for 1a, IT WAS HELL THE LAST SIX MONTHS.  I actually looked aneroxic (sp), dropped a lot of weight, couldn't even make it from the couch to the kitchen without my sons helping me walk.  

NOW... from the research that I have done, and people I have known, I know that there are some people who don't show a lot of symptoms previous to liver failure and then one day they get an upset stomach, and they die, with no forwarning.  

Then there are the people who get a lot of symptoms (as a friend of mine now has) and know they are in trouble, in trouble enough to know they better sign up for a liver transplant.

Why is it that I am not on a transplant list - IS IT AGAIN AN INSURANCE ISSUE?  I do not feel better after getting rid of the hep c - yes, i'm glad i was able to get rid of it, but.... i do not feel well and cannot see myself living my life on the couch.  I am 55 years old and used to be very energetic and a go-getter, now all I think about is how ****** I feel.  I try and have a positive attitude but it gets harder day by day.  I have two teenage sons that do not understand how sick I am and want me to wait on them all the time.  Please any suggestions that could help.    

[HectorSF]

“there are some people who don't show a lot of symptoms previous to liver failure and then one day they get an upset stomach, and they die, with no forewarning.”  

That is very, very usual and acute liver failure is usually caused by something other then HCV, plus the difference is you are aware that you have liver disease so that won’t happen to you.

A liver transplant why? You don’t mention any symptoms of decompensate cirrhosis. Do you have ascites and edema, varices, hepatic encephalopathy? What is your MELD score? You mention fatigue. Fatigue is a symptom of many diseases not only liver disease.

What are your current blood levels that would indicate the condition of you liver? Any imaging studies?

Are you sure you are SVR? When did you end treatment? If you are SVR the hp c virus should not be advancing your liver disease. Are you ingesting alcohol or any meds such as NSAIDs  (aspirin, ibuprofen (MOTRIN), , etc.) that are toxic to the liver?

Basically you need to see either a gastroenterogist or better yet a hepatologist to get to the bottom of your symptoms. We can not diagnose you. We can only direct you. First you need to find out what is causing your symptoms and then we may be able to help.

Go to a doctor and then let us know his diagnosis.

Best.
Hectosf

[sueb777]

Thanks for the advice.  This person I mention was being followed by a doctor.  He went out with his wife, got an upset stomach, and died that same night from liver failure with no forewarning whatsoever.

I absolutely do not drink.  I have not felt well for a long time, my not feeling well coincides with the liver progression.  

I have been off of treatment for two years now.  Since that time I've had numerious medical issues that I never had before.  My knee ballooned into a monster knee, I have chronic dry mouth, dry eyes (from treatment).  Wierd things have happened, that I know were caused from taking the interferon.

Sue

[HectorSF]

If you can not tolerate HCV treatment then a transplant is your only option as your cirrhosis progresses.

Find a hepatologist at a transplant center to manage your illness. They work with patients with cirrhosis every day and they know how to help you to stay as healthy as you can for as long as you can. When you get more ill they will help to get you listed for a transplant at that time. The longer they know you and you know them the more comfortable you will be. At some point you will need to be hospitalized for various complications from your liver disease. You want the best health-care available to help you survive these episodes until you get a transplant.

I have done this myself so I know what I am speaking of here. I have been going to a transplant center for over 3 years now and they have help make my life manageable.

You mention Virginia Mason Hospital. From what I see on their website they don't do liver transplants and they don't have a hepatology department so they will not be able to help you.

The only transplant center I see near you is...

Liver Care & Transplantation Services at UWMC

The Hepatology Clinic at UWMC provides:

    * Evaluation of abnormal liver tests
    * Viral hepatitis, such as hepatitis B and hepatitis C
    * Autoimmune and cholestatic liver disorders, such as autoimmune hepatitis, primary biliary cirrhosis, and primary sclerosing cholangitis
    * Metabolic and genetic liver diseases such as fatty liver disease, hereditary hemachromatosis and Wilson’s disease
    * Toxic liver injury, such as from drug and alcohol use
    * End-stage liver disease and cirrhosis
    * Vascular abnormalities, such as Budd-Chiari syndrome
    * Hepatocellular carcinoma

The Hepatitis C Clinic at UWMC provides:

    * Treatment for patients with Hepatitis C
    * Diagnosis and treatment for post transplant patients
    * Non-transplant patient medication management and side effect monitoring


The Liver Transplant Clinic at UWMC provides:

    * Liver transplant evaluation
    * Pre-liver transplant care
    * Post-liver transplant care
    * Acute liver failure
    * End-stage liver disease/cirrhosis from various causes
    * Hepatocellular carcinoma
    * Portal hypertension, including portosystemic shunt surgery


Best-
Hectorsf

[sueb777]

You are very kind to send me so much information on what I can do.  I sometimes don't explain myself well but I did do treatment for the year and the hepatitis c is gone.  

Sorta wierd, I had contacted the UW previous to reading your message (15 mins. to be exact).  

THANK YOU

[paen53]

Hi Sue,

Sorry to hear about the Stage 4 dx, but more concerning to me is the grade 3 which shows some pretty decent inflammation still occuring. When was your last PCR - at 6 months post, a year? Any mention of fatty liver from the bx? My thoughts are that if you did reach SVR, that something is amiss and causing continued inflammation and further deterioration of your liver status. Personally, this is what I would follow up on with preferably a hepatologist with plenty of experience with cirrhosis.

Sometimes tx can leave us with long term sx - but many can be resolved with a Dr. that really listens to us and our history.I had a similar huge knee thing going on that was quite a bugger. One of the things that kept popping up in my research was that this can be thyroid related. My thyroid test had remained within normal limits both during and shortly after tx. I asked for another test and sure enough, some problems had developed. Have been on Synthroid for almost a month now and the swelling has disappeared along with many of my joint issues - not all - but most. Might be a shot to get tested and talk to your Dr. about it.

As far as the dry eyes/mouth, perhaps google Sjogren's syndrome and discuss with your Dr. Here's one link - http://www.mayoclinic.com/health/sjogrens-syndrome/DS00147.
Auto-immune issues can crop up post tx, so something to look into in case you haven't already.

Best of luck to you!!   Pam

[fretboard]

Well it sounds like you came out of tx with an SVR which is a good thing and the end of your HepC, period.  My guess is that's the reason you're not on a liver transplant list, anyways.  So now we focus on your problem at hand which sounds like you still feel like you're on tx.ugh  The drugs are harsh sometimes and sometimes it takes a long time to get them out of your system, but 2yrs?  I think it's time for you to pull out the heavy artillery and get off that dang couch! lol  It could be something simple like finding the right amino acids to take to make you feel better and it also may be something a little more like maybe you need an anti-depressant.  I suggest you see your PCP prior to making any changes at all but I would definitely try some good supplements or amino acids.  Also, have your doctor test you for vitamin deficiencies and get a B12 shot while you're at it.    good luck!

[sueb777]

It is late, but I wanted to thank everyone for their responses.  It is nice to chat with people who can relate.  I'm in college and taking care of my 17 and 19 year old, hoping to get a good job again with good insurance, so not a lot of time to respond to each and every one of you.

But again, thanks.  Sue