finally got lab results -

[bandman54]

Well after another fight with the nurse (turns out she isn't even a nurse)  I got all of my test results.

I told them I was coming in today and wanted photocopies of all tests in an envelope for me to pick up... when I arrived the receptionist told me the doctor wanted to meet with me and after and hour wait ....I was in!

I told the doctor the whole story about her "nurse" and that she had even hung up on me today..doc seemed quite interested but who knows.

Anway, she went over the results with me (she had'nt even looked at them yet) and was very kind and careful with her explanations (which were right on the money).

The good news!  minimal liver damage - "minimal inflammatory activity (grade 1) and milkd portal and periportal fibrosis (stage 1-2)  no iron deposition detected.  no liaisons.

The doctor said she believed that the damage was reversable (I don't even think the hep caused this but quite a few beers did,  and yes I have completely stopped all booze of any kind).

The bad news -  genotype 1a.. of course.. kinda of suspected that.  I asked her, isn't that the toughest one and she seemed reluctant to label it as such....I also asked her if it was not true that the cure rate was 50/50 on that genotype and she said it is now a little higher.   Maybe she is just trying to keep me positive.
Viral load 6.405 - she said this is not high and not low... and it will fluctuate.

I then asked her what she thought about postponing treatment and monitoring my liver levels, which she now says are significant, since I had a biopsy... very low, slightly elevated, in fact that have slowly gone down..all are in normal range except ast with is 43 (slightly elevated) . probably cause I totaly changed my diet and cut out all booze.

I asked her about new treatment in 2 to 4 years and she said that was a definite possibility, and that I could just monitor my liver and postpone treatment BUT she does want to start treatment in a year or two.   She said that she thinks I would respond, I guess good health and a fairly healthy liver can help with the treatment... although she did not say so.

She said I should start treatment when I am mentally and emotionally ready, and there was no big hurry.  When I again brought up the new treatment she said it could be better or it could be worse.  I guess she wants to try the current treatment (which according to her has a new twist where they test for response after 4 weeks instead of 3 months... then I guess if that doesn't pan out , I can try the new treatment when it is available.

Here is my dilema... I love the doctor.... but hate her "nurse" who is the go between....as we mustn't disturb the sensitive genius known as the doctor... I always have to talk to  Lucy.

I have set up another consultation for a second opinion (with a hepatologist) but I really like this G.I. ....  opinions?

Sorry for such a long post, but I have waited for this info for a looong time.

I will probably start traditional treatment when I get back from NYC and Maine this summer... no sense in messing up a fun trip with tx.

thanks all for your words of wisdom, kindness and support.

bandman

[Marcia2202]

I'm happy for you that you finally got the results. You waited looong enough.

Yes, what a hard decision, I hope the hepatologist is going to be even nicer than the GI. And that he/she has a nice compassionate nurse. (Wouldn't it be nice not to have to deal with that grumpy one anymore)

I'm still waiting for my results, but no matter the outcome, I want to treat as soon as possible. I really want to get rid of this virus and get on with my 'normal' life.

I hope you will be able to take the decision which is right for you.

Best wishes,

Marcia

[nygirl7]

I agree word to word with Jim.

With minimal liver damage and a watchful eye with a good liver healthy lifestyle it might turn out that you never need to treat at all.  You know they say most of us will die of something completely different than hep.

I treated for 72 weeks and was diagnosed geno 1A and geno 1B.  I've been SVR for 16 months now.  So the odds with the "New Twists" included are very good for geno 1s to be cured.  You do have to be ready emotionally to commit but it is very possible to do it.

Good luck.

[jmjm530]

"Watch n' Wait" doesn't necessarily mean waiting for the next generation of drugs like Telaprevir. If your liver damage stays minimal, you could reasonably keep waiting for a day when some think interferon will be out of the equation. As to which doctor, liver specialists generally know more and are ahead of the tx curve. Your doc's reference to "a  new twist" re the week 4 test demonstrates that. My hepatoloigst was using the week 4 test (actually weekly tests from week 1) three years ago. Just keep in mind that some docs -- gastros's, hepatologists, etc -- have very strong opinions (like some here) on whether or not to treat. In the end, it's your liver, your decision. Do your research.

If you do decide to stay with your doc for now, tell the doc exactly what your problems are with the "nurse" and ask for a solution. I've had similar problems in the past and after such a conversation I've either been given permission to bypass the person in question or somehow a miraculous change in attitude occured the next time something came up. If it doesn't work out, you can always leave.

-- Jim

[Isobella]

I am hoping that you like the 2nd opinion doctor even more and that the nurses and staff there are all very nice.  That will at least make this decision easier for you.

If you stay with Dr #1, maybe you can get on Lucy's good side.  A littile brown-nosing can go a long way sometimes.  

When we start treatment, these are the people we are going to be counting on to pull us thru good times and bad.   Alot of times we will be feeling cr@ppy, so it if they make you frustrated now, it could be a good indicator of things to come.

Good luck with your decisions.  Let us know how it goes. :-)

Isobella

[comeagain]

Its a hard desision to make. wait for better option telaprevir much higher odds rvr . svr, shorter treatment but are you gonna cope with  telaprevirs sx rach etc. (some don`t get any)
And is it gonna be available at all? and when? or just for relapsers ?many ?  Glad your bx was as good as it was!
Hang in here educate on the topic.
I´m a geno 3 sec tx 48w first 24w gonna be 72weeks alltogether.
If the doc had given me less then 80% due to week 4 vl test would have stoped treatment after 12w , and waited for better option, my bx was even better then yours, no iron no fatty liver inflgr 1 fibrst 0

[JennyPenny]

I'm glad you got good news on your tests and can afford to wait until you're ready to do treatment. Just be aware that the treatments that are coming in the near future while they might give you a better chance at responding, they will all be used with interferon & ribavirin. As a geno 1 it might be best to wait.