Leroy - I was in your same boat.  Was trying to start tx but Kaiser kept wanting to do more and more tests.  6 CT Scans, Ultrasounds, and MRIs in 2 years. Dr would refer me to Infectious Disease Dr, who in turn would refer me to GI, who wanted to do another Esophagogastroduodenoscopy, etc., etc..  They said they wanted to see if I had hypertension in my esophagus before they could do another biopsy, before considering tx, blah, blah.

Finally......last October I drove to see a major Transplant Hepatologist at USC.  (A favor from a family friend got me in, free of charge.)  This Dr was amazed with Kaiser.  He reached over his head with his right hand and grabbed his left ear.......said that is what Kaiser is doing.  Instead of directly fixing the problem, going in a roundabout way, making things more difficult.

I will mention that I incurred $1,100 in CoInsurance costs JUST for Labs!  They took 14 vials of blood one week, 11 the next, 14 a few days later.  This is CoInsurance.....on top of premium and copay.  I got the bill.....over $1,000 my share of costs.  Then......it would cost me another $600 to get the EGD and nearly $5,000 for another biopsy, with my insurance. 

So that's why I went to see the Transplant Hepatologist at USC.  It just so happened, he did his Fellowship with my GI at Kaiser, so he called my GI in front of me and reamed him, asking what the heck he's doing with his patient.  He told him to stop all the BS and just treat me.  Got the ball rolling and GI referred me back to Infectious Disease.  At my next appt, we started TX.

Don't be fooled by Drs or insurance companies trying to bleed you dry.  Get copies of ALL of your Radiology and Labs.  Look for actual Diagnosis, then Google it and do much research.  Once very informed, be relentless in your calls and emails to your Dr; they will see you are educated and determined and Not going to take crap.  ALL of our livers are trying to regenerate; we know that.  Good luck to you and please keep us posted.     Hugs,  Judy 

Thanks peantbutter  and Judys for the reply. Since my last post the Doc's have done a mri with contrast and a full blood work up and have come to the conclusion my liver is trying to regenerate itself and that is what they are seeing on the mri pics( no cancer can be detected). On May 16 I go in for a ct scan with contrast to confirm thier diagnosis and then in July they want to give me another ct scan with contrast to be sure.

 All i want to do is get on the tx cycle so I can move on with my life. but I keep running in to more and more tests. I asked the the dc. when I first saw him why they keep focusing in on liver cancer and the only thing he could say was that I was a classic case of Hep c progression and this was the next step in my disease. Never mind the fact that no test so far has indicated any cancer at all. the frustration factor is beginning to take affect and I need I final and definitive answer so I can move on.

There's no way I would even discuss surgery unless extensive tests were done and there was an extensive conversation concerning risks, extent of if any damage, etc. I'd flat out ask the doc what made them think of a transplant. I would hope when he said that he'd give an explaination, but apparently he didn't.

God bless, 

Mike

Have you had ultrasounds or CT Scans?  Viral loads and liver enzymes (AST & ALT) fluctuate quite a bit. 

My last liver biopsy was in 2000.  However, cirhossis has been suspected because my CT Scans for past 2 shows show likely Splenomegaly.  Enlarged spleen.  And hypertension in liver.  Basically means liver is backing up into spleen.

However, I have no ascites, jaundice, itching, or any of the other signs.  Drs have always checked my ankles and stomach and no fluid retention.  No yellow under eyelids.  Also palpated my liver and spleen and have never been able to feel them.  You normally can with cirhossis, particularly the lower tip of liver.  Mine never felt enlarged; 3 drs have checked.  I think biopsy is best indicator.

Thanks everyone for the reply. I agree with Greenqueen on the doc. opinion He has referd me to hep and surgery dept in orlando at fl. hosp. but  I'm going to ask for some second and even third opinions first before any sugery is done on me. Has anyone worked with any doc in the orlando fl. area that you trust? I have some really bad expiereinces with the doc. in my area and I don't feel they have my best interest at heart. The only doc. that have treated me well and with some respect have been at Shands in Gainsville but I haven't see them in so long that I will need another referral from a locale doc. to get an appointment.

Hi Titus and welcome

First of all, there isn't any correlation between viral load and liver damage. A person can have a very high viral load with little or no damage and vice versa.

A liver biopsy is the still the "gold standard" when it comes to determining the amount of liver damage, even though an ultrasound and blood tests can pick up on some irregularities.

People with cirrhosis often have to do treatment for a longer period of time than someone with very little damage.

If your doc has concluded that you need a liver transplant without even a biopsy, I would seriously question the basis of his diagnosis.

Love Steff xx

They can get some sense of your liver condition through an ultrasound.  And of course blood tests show how well your liver is functioning.  I had a biopsy in 2001.  The problem I have with biopsies is they generally don't change anything - the treatment recommendation remains the same. 

Thanks for the reply. I have heard that the only known way to evaluate cirrohsis is with a liver biopsy. RK6 what tx are you on and how are you tolerating the meds?

I have some similarities to your situation - very high (in the millions viral load) early on - (found out I had hcv in 1993)

First round of interferon in 1995-6 virus went negative but came back 

Start of treatment in Oct viral load was 397000 so surprisingly low to me but similar to you

Treatment is working for me now (UND at week 15 and since then to week 27 now)

Roberta

Is there a correlation between my viral load count and cirrohsis? When I first discovered I had hep c my viral load count was 54 million IU/ML's. That was in 1998 now in 2012 my viral load count is 537,000. MY doc seems to think I'm going to need a liver transplant soon. On what basis is he coming to this conclusion? I have had tx with interferon and was non responsive. I would like to try the latest tx if I can before taking such a drastic measure as a transplant