GI or Hepatologist?

[prettydamscared]

Hi all,  I posted Friday and didn't get back to the board till yesterday. I answered everyone but it's so far down the board now, I didn't know if anybody would even know I'd responded.  Anyway, thanks for all your welcomes and posts.  I have a couple questions.  Do most of you have hepatologists or GI docs.  My husband was diagnosed with hep C last April, 2B.  His GI doc gave him his BX results but never made mention of stage or grade of inflamation.  Until I was diagnosed just this month, I didn't even know what grading meant.  I'm still not crystal clear on what it means or how it impacts the stage of liver disease.  My husband was supposed to start treatment April 1 but decided to put it off until May 1st.  His treatment meds are in the frig waiting to go.  His doc doesn't even know that he's doing this.  He hasn't gotten a baseline viral count since he was initially tested last April.  I would have thought his doc would have requested more recent blood work before starting treatment. I noticed nygirl asked someone if they were getting regular CBC's.  I don't even know what a cbc is & I'm quite sure my husband's doc hasn't mentioned getting them and he thinks my husband is currently undergoing treatment.  Anyway, I chose to go to a different GI doc in the practice.  My doc isn't going to report bx results in grade or stage either.  I can tell by preliminary conversations.  Is this to be expected or should I be looking for a hepatologist?  BTW, hubby is perfectly fine with his GI doc so that's his choice.........Thanks everyone. Char

[prettydamscared]

Thanks everyone for all your replies.  I'm going to look into another doc, if possible, a hepatologist.  

nygirl, so you're almost a stage 3.  Do you know your grade?  How does the grade factor into the bx results?  I noticed you were undetected by week 24, (if I read your earlier post correctly) Is this the first time you've treated?  It seems to me that I've read numerous places where the stage can be reversed or regrssed through treatment and taking care of ourselves, right?

ALT and AST - is normal 40 - 50 or below? I was panicked when I learned my vc was over 5m - Now, I'm getting it that that's not a sign of damage, just of probability of svr at 12 or 24 weeks.  Correct?

missmiss, thanks for your welcome and for the heads up about the rescue drugs.  That seems really important to me.  When I've heard you all talk about rescue drugs, I've seen Procrit mentioned.  Is that the main one that you were referring to?

[lilmoma]

Well hello everybody. Hope all of you are doing well.
I just got off the phone with my boss, told him I would be back in next Monday morning. I have got to give this procrit time to work. I know I will not be 100% or anything like that, but I will probably be better. If I had a job that was not running all day, lifting, pushing, moving, non-stop. maybe I would get through it, but it is just so physical, that I am making myself sick, and then throw into that mix, I am feeling guilty about it, and Im still not doing myself any favors. Just talked to my hubby as well, who really went nutz telling me to "Stop worrying about that f$$#@#g job!!!! If it falls apart, it falls apart!!!
I get myself real stressed sometimes, Im a worry-wort, want everything to be just right, ya know?
lilmoma

[prettydamscared]

You and everyone else have mentioned getting copies of everything.  That's exactly what I'm going to do for myself and my husband, who, I might add, continues to drink like a fish.  His doc told him he had very little liver damage - nothing specific, no info about grading or staging.  In hinesight, his translation of the bx seems very vague.  I do want to know exactly what I'm dealing with.  I'm 1a, hubby's 2b, which is why I think he's not taking it as seriously as I am.

[NYgirl]

Well first off don't worry about your ALT and AST too much - mine were in the 200s before I started treatment and then in a few weeks only they went zipping down to like 16 & 20.

You see what happens is when your liver is being damaged and the cells are being killed (from hep or alcohol or something) when the cell dies it releases this enzyme. So that is what the number is reflecting - how much of that you have in you. So the lower the number the better. However 40 is not dreadfully high at all!

I am Grade 2 - Stage 3. I have two different genotypes of the disease (lucky me I was always a great partier the "more the merrier" type girl so I guess I carried that straight in to getting disease too!  ;) so it was hard for me to get to the Undetectible - and after failure and failure I was so SURE I wouldn't get it that I did LOL.

I really think at some point, we've done all we can and just have to let it GO and let our bodies do it on their own. But me...Miss Stubborn well I was going to will it away :)

Did you ever go to this website?   http://janis7hepc.com    I am not so great at explainning things and the Janis site has the answer to EVERY question you might have pretty much and is on the money.  It helped me understand so MUCH better and I was glad to learn all I could. I printed it all out and studied it when I first started out LOL (sort of anal I guess!)

This link  http://janis7hepc.com/learning_about_liver_fibrosis2.htm  
has info on fibrosis being "reversible".  I've always figured worse case scenario if I could get that stage down from a 2/3 to a 1/2 then it would be worth doing treatment you know?

http://janis7hepc.com/biopsy.htm
This link has all the info on Grade and Stage.

I hope that they help you understand stuff better. KNowing what you have to deal with with all of this...really DOES help.

Debby

PS Viral load isn't really as much of a predictor of SVR as your GENOTYPE - ie: 2s supposedly have an 80% chance and 1s a 50%.  I've seen people like me with VERY LOW starting vl's (only 568,000) who had a TOUGH time getting to UND while others with VERY HIGH did it in 4 weeks.

[prettydamscared]

Thanks for explaining all that.  I am going to really study that website.  I'm pretty anal too.  HOpe you have a good rest of the day.  Char

[sfbaygirl]

Yes,  get copies of all tests.  My insurance co.  wouldn't pay for meds b/c they had no RNA test, and neither did the Dr, lab somehow misplaced the results.  Thankfully, they faxed one to me as soon as they had the results,  so I had to fax it to my Dr. and insurance co.

Do you think it stange that my GI has not ordered a BX?  I had an ultrasound and he said I have a fatty liver.  Said to lose 15lbs, and that may be the problem.  Does TX help fatty liver?

Linda