Cirrhosis or Guessing?

[Magnum]

Dr. Gish, the Hepatologist has submitted a note to my Gastroenterologist that I have Non-alcoholic Cirrhosis 571.5.

The question is, he is basing this on a biopsy of two years ago, where the pathologist's report stated a possible beginning of Cirrhosis. How can a doctor state that I have Cirrhosis if the biopsy then didn't show that I positively had Cirrhosis? Also keep in mind that he did a thorough investigation of all my vital signs and liver functions and they are normal.

Could it possibly be that this what the doctor "thinks" the stage is that I'm at? For those of you who know numbers, I would appreciate any input. Here is what he wrote:

Alphafetoprotein of 34
Viral Load 2.4 million
Platelet Count 85,000
White Count 5000
Hematocrit 45
ALT 124
AST 100
Albumin 4.0
Bilirubin 0.4
Creatine on previous assessment: Negative and Normal

Thanks

Magnum

[HectorSF]

I'll be fine, (wishful thinking?) but I appreciate your kind thoughts.

Well it sounds like you are in good hands and have your bases covered. Your doc is the best judge of when and how different tests need to be done. And you are managing your illness well.

I know what you mean about feeling good even when having Stage 4. I never felt better when I was diagnosed with cirrhosis. I think it is a common misconception that at Stage 4 we suddenly are very ill. Amazing how much of the liver we can lose to fibrosis and have it still function well.

Since our (cirrhotics) platelets are low to start with and the interferon will drop them like a lead balloon, maybe a new drug to raise platelet counts will be out or available in some way by the time you start treatment? That would be awesome. It's is going to be an issue for me in the future I know because after 12 weeks my platelets where at 26k. So if the treatment had worked I would have had to stopped anyway. Catch 22.

Right now I'm waiting for new meds that work for null responders like myself. So I am trying to stay as healthy for as long as possible.

Let us know how you're doing. We can all learn from others experience.

Take care.
Hector

[Magnum]

Thanks for taking the time to help. Regardless of what I've been told, I feel great. I know that's not always a true indicator that you're ok. I saw Dr. Gish two weeks ago when he fully inspected me (skin, eyes, feeling the abdominal area, looking for rashes, etc...) and said everything was good and liver functions are normal. Urine color was normal.

I told him since I'm performing (I'm an entertainer) five nights per week now that I would like to wait until January to start the treatment he recommends because of financial needs now. That treatment is double-dosing of Pegasys along with 1200mg Ribavirin daily.

He feels I can comfortably wait, and in his own words, he said that chances of me developing liver cancer between now and then are 1%. He will do weekly bloodwork while under treatment, although I do have to sign a scary consent form, but that’s nothing new and I’m not afraid after four very brutal failed treatments.

He does want the varices test done, and I have been inoculated for both Hep A & B and given a flu shot as well. One thing I want to add, I survived a horrifying Infergen overdose, but afterwards, my levels dropped to 6500, and I had low counts for over a year afterwards. This told my Gastroenterologist that the immune system got a jump start and was strengthened.

Naturally, I’m concerned. Dr. Gish is a wonderful doctor who has my complete trust and has assured me he will help me in every step. I know, as many here know, that a biopsy is a tell all, but I’m not scheduled to have one until next year. Also, doctors, with all their good intentions, skills and knowledge have been wrong. However, he really feels the Pegasys double-dosing will do the trick and said that once I clear, the liver will start to heal back to normal. I pray your condition, as well as all other here improves. Who knows, miracles in medicine have happened throughout history and are sure to happen again. Although it was too late for Franklin D. Roosevelt, a polio vaccine was discovered. This could happen with Hepatitis C...

Magnum

[HectorSF]

I've had a long day and I'm starting to fade but before I do here are a few thoughts...

I think I understand what the doctor is doing. He is looking at the indicators for your liver disease.

MELD=7 (good)
The Model for End-Stage Liver Disease (MELD) is a numerical scale, ranging from 6 (less ill) to 40 (gravely ill), that will be used for adult liver transplant candidates. It gives each individual a ‘score’ (number) based on how urgently he or she needs a liver
transplant within the next three months. The number is calculated by a formula using three routine lab test results:
• bilirubin, which measures how effectively the liver excretes bile;
• INR (prothrombin time), which measures the liver’s ability to make blood clotting factors; and
• creatinine, which measures kidney function. (Impaired kidney function is often associated with severe liver disease.)

Your Bilirubin is going up indicating liver damage while your platelet count goes down which is consistant with your enlarged spleen. (I got one too along with varices and portal hypertension). AFP watching for indication of HCC. HCC usually only happens with a person with cirrhosis. A quick rising AFP or a AFP over 500 can (not definitive) indicate liver cancer. So we cirrhotics should get scanned every 6 months and have AFP monitored.

I'm not sure how long you've been with Dr. Gish so I'll just ask about a few things he either has done or will do at some point.
Have you had an endoscopy to look for varices?
Have you had Hep A and B and pnumonia, flu shots?

Do you have any other symptoms of cirrhosis?

Sorry if this is upsetting. It upsets me. Sometime I think I've come to peace with my cirrhosis but knowing what your going through reminds me how difficult this illness can be. At least we are not isolated and there are others here dealing with the same issues. Hopefully together we can share our experiences and knowledge and find the best options available to us. So hang in there. Somehow I feel we will find a way to manage and live good lives despite this burden. Remember there are many people worst off then us with decompensated cirrhosis. I used to see then at the transplant center and in the hospitals were I get my HCC scans and walk out of there saying to myself "I've got no problems". I can still work and see my friends and enjoy life. I'm not in pain every minute so I appreciate every minute of my life while I have it. I try not to take it for granted.

Best.
Hector

[orleans]

informative post, thanks jm

[Magnum]

Thanks for your reply. I'm hunting the 2006 biopsy result and will post when I find it. Here is the ultrasound of 2007:

Portal Vein Unltrasound = collected 08/02/07

The liver is heterogeneously dense without evidence of bilary ductal dilatation or mass. The left lobe demonstrates a 2.2 and 1.6cm hepatix cyst

The gallbladders demonstrates normal size, shape and confiduration. There is no evidence of gallstones, gallbladder wall thickening or free fluid surrounding the gallbladder. The common hepatic duct is within normal limits.

The kidney demonstrates no evidence of hydronephroris, mass leison or sones. 6.1cm cyst is identified in the right kidney.

The spleen is enlarged. The spleen measures 15cm in greatest dimension.

The pacreatic bed as well as visualized is unremarkable.

The abdominal aorta and IVC as visualized is unremarkable.

IMPRESSION:

The spleen is enlarged.

Right renal cyst is again identified and relatively stable.

This Chart Was Diagnosed by Dr. Gish and He Circled These Numbers (after the = sign) On My Last Visit And Gave Me A Copy:

July 17, 2007
= MELD 7
= Creat .09
July 17, 2007
= Alb 4.02
then March 19, 2008 = Alb 4
July 17, 2007
= Bili T .09
Then March 19, 2008
= Bili T 1.2
July 17, 2007
= PLT 111
Then March 19, 2008
= 85
March 19, 2008
AFP 34.7

Thanks,

Magnum

[HectorSF]

I'm sorry to hear about your advanced liver disease. Since you were "near" Stage 4 before and now the you have a low platelet count it is a pretty good indication of cirrhosis unfortunaetly. That is how I was diagnosed with cirrhosis. As Leah said low platelets and possible portal hypertension and enlarged spleen are indications of cirrhosis.

How it works:
Cirrhosis (scar tissue in the liver) causes portal hypertension (high pressure in the portal vein).
Portal hypertension cause the spleen to enlarge.
An enlarged spleen traps platelets. (The platelet count begins to DROP)
A low platelet count causes blood to not clot properly. (Blood takes longer to clot.)
(As the platelet count drops, The Prothrombin Time begins to RISE)
A high Prothrombin Time causes a high INR
(So as cirrhosis advances (over time)...... the platelet count falls lower and lower, the PT and INR rise higher and higher.)

From the blood test your cirrhosis doesn't appear too advanced. Your ALT is still higher than AST which is good. They reverse as cirrhosis advances. Your AFP is not too high which is also a good sign. Over 100 can be a predictor over time for HCC. Mine is 150 at last test. Albumin is still good so your liver is still functioning well as far as making protein.

Do you happen to have your biopsy report from two years ago? What Stage and Grade were you?

Here is the HALT-C Formula for Predicting Cirrhosis from common blood tests-  
http://www.haltctrial.org/cirrhosis.html

Our predictive model relies on a few standard laboratory values that are routinely available in patients with hepatitis C - platelet count, AST/ALT ratio and INR.
The regression formula for predicting odds of having cirrhosis is as follows:
log odds (predicting cirrhosis) =
-5.56 - 0.0089 x platelet (x103/mm3) + 1.26 x AST/ALT ratio + 5.27 x INR.
The formula to calculate predicted probability is exp(logodds)/(1+exp(logodds)).

The ranges used in our analysis are as follows:
Platelets 39-442
INR 0.8 - 1.6
AST 18 - 789
ALT 15 - 772

Best of luck Magnum. You have a good doctor which is worth it's weight in gold.
Keep us informed as to what you decide to do as far as treatment is concerned and how you are managing the cirrhosis.
Hector

[copyman]

i would think a very good doc like gish can tell and would not guess about something like this. these guys have a six sense when it comes to cirrhosis.  if you are in Cal why not travel down to southern Cal to get the fibroscan done with HR. Goood luck

[sldb]

The only way to confirm or stage cirrhosis is through a liver biopsy. If you recently had an ultrasound it will show a nodular or irregular surface.  A enlarged spleen is a sign of portal hypertension which usually goes along with cirrhosis, this will also show up on ultrasound. alt and ast are elevated, afp is also elevated, this is common in patients with hep c. Platlet count is low and this is a common occurence in people with cirrhosis. I would give my dr a call and ask how he came to this conclusion.  Is treatment something you are considering?  I have cirrhosis, treated and svr now.  Good Luck...Leah    

[HCA]

The most commonly used cirrhosis staging reference is Child-Pugh which you can easily check on Google.You have all the numbers you need except for the INR (clotting value).