When Should I go for another ultrasound or possible treatment

[Blueyedbabes]

I found out I had Hep C through routine blood work 6 years ago next month. At the time I found out, I determined my genotype 1A. I also went for liver biopsy. At the time of biopsy I was stage 1-2 Fibrosis and 0--1 Cirrosis. I calculated I had probably been infected for 8 years at that time. My Gastro at the time did not recommend treatment for me, as my VL was load (93,000), I was healthy otherwise, and there were new meds in the works. He felt I should jusy take care of myself and see where we are down the road.

Here we are 6 years later. Probably 13-14 years since infection.I have kept an eye on my labs, alt's tend to run a little high, ast's run okay, sometimes slightly high. There have only been 2 times in the last 6 years ( I go for testing 1-2 times a year) that my alts and asts were normal but they never were so abnormally high that I was told to go back to my Gastro. The last time I had my VL checked, it had increased for the first time in 6 years to 225,000 but my dr told me not to worry about that. Back at the beginning of this year, I had an ultrasound done on my abdominal area for cramping and bleeding, they also did an ultrasound on my liver. My results were my liver looked fine through the ultrasound. I know thats not a great indicator, and only a biopsy can tell exactly whats going on.

I have some symptoms of hep c, I believe they are anyways. I am fatigued at times, not always but at times. I feel weak at times. My skin in dry. And when I press my fingers against my skin, I have a yellow color, though I am not sure if you can tell I am jaundice or not. I tend to think I have a slight yellow look to myself, but my mother thinks I am crazy. My eyes are def not yellow. I have seen a person who is truely jaundice and very yellow and I do not look like that at all. But in my mind I am slightly yellow.

I am concerned if I need to go back for another liver biopsy to see where the damage is now 6 years later. But I am without medical insurace and not sure if I should go through the expense or try to start treatment or what to do. I would love to try treatment, but I have 2 small childeren, 8 & 3. I work full time. I can not afford to be sick from treatment as I have to care for them and pay the bills, and I am afraid treatment will not work since I am type 1A. How often do you think a biopsy is needed? And is there any symptoms, or indications that my hep C is getting worse and I need to be treated.

And also, silly questions, but is a lot of gas related to hep c? I am such a gassy person and Ive never been able to find anything in my research that would confirm or deny this?

[eureka254]

I do think it would be wise to have another biopsy; progression of liver disease from hcv is not linear, and extent of damage does not correlate at all with blood results or viral load.  It's quite possible that your liver status has remained the same, and that you would have time to decide when to treat, but better to make sure where you stand.  

Your inner conflict about the timing of treatment, I think, will be greatly resolved if you get a current staging of your liver health.  You have valid pros and cons about initiating treatment at this time in your life, so getting the information from a biopsy is important, and it can help you in your decision-making process and alleviate many of your concerns, and maybe make you feel less yellow, too :).  Good luck. ~eureka

[Blueyedbabes]

Just located my paperwork and you were correct. It read...mild chronic inflammatory infiltrate. Ludwigs grade of inflammation 1-2 and fibrosis of 1. Reticulin stain negative for regenerative nodule formation. Iron stain negative for intrahepatocytic iron depostion. I understand the grades I don't understand rest of that. Biopsy done 10/25/05

[Blueyedbabes]

I am going to look at my report from my biposy 2nite. I suppose I could have been wrong, but I thought the first scale they graded me on was fibrosis and the 2nd was cirrosis. I will report back tonight when I have a chance to go through my paperwork. Again, this was 6 year ago so not sure if the scales they have used have changed? I know fibrosis leads to cirrosis so not 100% sure of that. WIll check back!

I guess my main concern is I don't want to just let it go knowing Ive lost my health insurance. I want to keep up with labs, keep my ast and alts checked, keep an eye on the viral load, and watch out for any sudden indications something could be going wrong. I hate not being with health insurance, I am sure many understand where I am coming from. I will be looking for help in anyway I can to keep a check on this.

[Garyw723]

Ok, I see that Willbb already mentioned Fibrosure up above. Guess I need to read before typing.

[Garyw723]

If you are concerned about progression of Hep-C, and are without insurance, you could get a Fibrosure test. My gastroenterologist routinely uses it instead of biopsy. And it costs a whole lot less than biopsy.

[orphanedhawk]

There are ways to get care without insurance.
Many medical centers and universities offer charity care which can cover doctor and lab costs. Start either searching the net or getting on the phone and calling places close to where you live. Ask if they have a financial assistance of charity care program.
The pharmas, have programs for free meds.
You also might want to consider doing a clinical trial as the new meds being tested look so promising.

Many people are able to work through treatment. I'm sure it isn't easy but some do it.
You are facing a life threatening illness and the possibility of a transplant.
Who will support your kids then? Go get help.

Good luck,
OH

Good luck.

[willbb]

The METAVIR score helps interpret a liver biopsy. When this biopsy is performed, doctors need a reliable way to quantify what is seen under the microscope. This scoring system assigns two standardized numbers: one to represent the degree of inflammation and the other the degree of fibrosis.
What Does My METAVIR Score Mean?
The fibrosis is graded on a 5-point scale from 0 to 4. The activity, which is the amount of inflammation (specifically, the intensity of necro-inflammatory lesions), is graded on a 4-point scale from A0 to A3.
Fibrosis score:
F0 = no fibrosis
F1 = portal fibrosis without septa
F2 = portal fibrosis with few septa
F3 = numerous septa without cirrhosis
F4 = cirrhosis

Activity score:
A0 = no activity
A1 = mild activity
A2 = moderate activity
A3 = severe activity

[willbb]

Yes if insurance is a problem then there is assistance from the various drug companies...someone else will hopfully chime in there as I am from Canada..and not that familiar with the programs in the U.S.

I t would certainly be recommended at 6 years since your last biopsy that you have another one.There are also two other fibrosis markers that can be done which are Fibroscan imaging (however this is not  widely avail. and the fibrosure blood test)

It looks like from what you said you had st0(none) fibrosis and  grade 1  -2 inflammation   ..however they way you posted it  is a little confusing.. the grade is the amount of inflammation and the stage is the amount of liver damage(fibrosis)  I have put the scale below along with the article that explains.

6 years  for the most part is not a long time with HCV ..especially given the fact you  had no liver damage(if  indeed it was the one that scored  0  )   however very often there are no symptoms of the disease .until liver damage is qiuite advanced(cirrhosis) and then treating  can become more difficult.

Your other labs (ast and alt ) are not real good indicators of  how fast or slow fibrosis is progressing ...only a biopsy or the other two tests can indicate that

treatment protocols today are approx. 75% successful for geno type 1a with the arrival of the new meds this summer  and it looks like given all the reasearch happening now that  this may even get somewhat better in the future.

So...if you haven"t already you should be seen by a specialist to do some further testing and to then discuss treatment options given the results of these tests

Good luck  and welcome to the group...
Will.

[Boobert]

Biopsys are recommended every 3-5 years and is the best way to determine the amount of damage.

[Blueyedbabes]

I will probably not have medical coverage for a long time to come from the looks of it and I tried my best to keep up with my labs and such. I dont want to ignore the problem I have and be able to keep up with it. I will pay out of pocket twice a year for blood work, but I know a biopsy will not be cheap. I was wondering if there are indications that things are going wrong, or getting worse. Or how often a biopsy is recommeneded. Its been almost 14 years since infection I would imagine some problems or complications would be arrising from it at some point soon?

[Bali05]

Not sure where you are located but new meds for geno 1 are now available and from
what i understand that is what your gastro originally recommended waiting for.

I am not sure what options you have without insurance coverage maybe someone
else on this forum knows. If I remember correctly there might be some support from
from the drug companies.