Aa
Hello again - here's the bx info from local gastro
And it does not make me happy, but it is what it is. Sorry for the length of this.
1. I have cirrhosis - period, do doubt about it, dance all over the report and try to pretend I don't - but I do. Bridging fibrosis with all the other factors thrown in that are going on = CIRRHOSIS.
2. It is NOT early stage. I have serious liver damage. But it's not Stage 4. My liver isn't totally destroyed. I tried to pin him down on all that, but he said he'd just combine all of the info. and make it a Stage 3 since the report was rather garbled up in that regard (2+/3+).
3. After 40 years of harboring the virus and not doing tx'ing when I was diagnosed or soon after, this is no surprise to the doc. Actually, it's to be expected. The protocol now is, if diagnosed - treat - asap - no matter what the stage is. Treat. 10 or even 5 years ago it was "wait and see" if the numbers were low. Not anymore. I was under the old protocol the past 10 years when my tests (but only ONE biopsy) looked okay - when the protocol was to wait until the labs were literally screaming. Ah well.
4. At least I am still treatable
5. My age does not matter (he thinks) because I have no other issues, platelets are good although a bit low (142) but Procrit will handle that, I feel halfway decent, I appear to have good genes, I am slender (I only weighed in at 110 - but I'm 5 foot 3.5 and really small boned) I really do NOT seem my age in the way I act and think etc
6. I was testing him on "buzz words" - he caught 'em all - knows his stuff. Threw a few at me too - testing, testing, testing.
7. Told him that I had read that with compensated cirrhosis I had at best 62% SVR. He almost said BULLSHI!. lol. Told me to stop paying attention to numbers. That's the doctor's job. But for the record: I don't know why Ferritin wasn't checked - hmmm - but AFP was 15, down from 21; VL around 660,000 down from 770,000 eighteen months ago, but he said that doesn't matter anyway; it's now the baseline. That's what matters. Starting with tx, of course that's the number that's looked at.
8. He explained that although my liver is seriously damaged, it's a big organ and that I can function well even if 75% of it is forever destroyed. But tx CANNOT WAIT.
9. Probably too far gone to regenerate any of it but can at least slow the viral parade way down or maybe even bring it to a halt. If I take care of myself like stop eating junk food, drink water, etc., I still have quality time left even if tx fails.
10. Said yeah sure about seeing Gish Group. Said he'd be interested in their opinion (and he meant that in a good way). He knows who they are.
11. That said, he told me that tx is tx - I'm going to get the same thing no matter who's in charge of it. Just to keep that in mind. The new protocols are there - and situations are tweaked as they appear with each individual case.
12. My pdoc will handle any side effects meds needed - he knows what he's doing (of course they know each other).
13. Pdoc can always be paged - and he spends a lot of time in the ER in case I ever need to go there.
14. Re. the IL28B test - said - yes, it can predict, but it also might be wrong. Useless at this point - that's his opinion anyway.
15. Unfortunately for me, the new protocol (treat when diagnosed) was not in place until a year ago, but it is what it is.
I will go to Vegas on July 11 to see Gish's Group. I will see what their take is. Then I will decide whether to stay with Dr. Kahn or do the Gish trip, which would involve some trips up there, and I just hate even being in a car that long. 2 hours one way. Just how I am. I freak easily. Like Dr. Khan said, tx is tx. The rules are there, the rules are followed, and everyone in the biz. now is on the same page... or if not, they should be.
I have another appt. with Dr. Kahn on the 18th - when I will deliver my decision whether to stay local or go to Vegas. It probably seems that going with Gish is the way, but.. my husband and I are not getting any younger, and it really is a long haul up there and Vegas is INSANE - traffic is terrifying. I have more faith in my local gastro. after today, and my hub was with me and he has a sixth sense about people. He felt that the man was solid, real, good at what he does, and he cares.
Oh, last thing, I'm still alive.
1. I have cirrhosis - period, do doubt about it, dance all over the report and try to pretend I don't - but I do. Bridging fibrosis with all the other factors thrown in that are going on = CIRRHOSIS.
2. It is NOT early stage. I have serious liver damage. But it's not Stage 4. My liver isn't totally destroyed. I tried to pin him down on all that, but he said he'd just combine all of the info. and make it a Stage 3 since the report was rather garbled up in that regard (2+/3+).
3. After 40 years of harboring the virus and not doing tx'ing when I was diagnosed or soon after, this is no surprise to the doc. Actually, it's to be expected. The protocol now is, if diagnosed - treat - asap - no matter what the stage is. Treat. 10 or even 5 years ago it was "wait and see" if the numbers were low. Not anymore. I was under the old protocol the past 10 years when my tests (but only ONE biopsy) looked okay - when the protocol was to wait until the labs were literally screaming. Ah well.
4. At least I am still treatable
5. My age does not matter (he thinks) because I have no other issues, platelets are good although a bit low (142) but Procrit will handle that, I feel halfway decent, I appear to have good genes, I am slender (I only weighed in at 110 - but I'm 5 foot 3.5 and really small boned) I really do NOT seem my age in the way I act and think etc
6. I was testing him on "buzz words" - he caught 'em all - knows his stuff. Threw a few at me too - testing, testing, testing.
7. Told him that I had read that with compensated cirrhosis I had at best 62% SVR. He almost said BULLSHI!. lol. Told me to stop paying attention to numbers. That's the doctor's job. But for the record: I don't know why Ferritin wasn't checked - hmmm - but AFP was 15, down from 21; VL around 660,000 down from 770,000 eighteen months ago, but he said that doesn't matter anyway; it's now the baseline. That's what matters. Starting with tx, of course that's the number that's looked at.
8. He explained that although my liver is seriously damaged, it's a big organ and that I can function well even if 75% of it is forever destroyed. But tx CANNOT WAIT.
9. Probably too far gone to regenerate any of it but can at least slow the viral parade way down or maybe even bring it to a halt. If I take care of myself like stop eating junk food, drink water, etc., I still have quality time left even if tx fails.
10. Said yeah sure about seeing Gish Group. Said he'd be interested in their opinion (and he meant that in a good way). He knows who they are.
11. That said, he told me that tx is tx - I'm going to get the same thing no matter who's in charge of it. Just to keep that in mind. The new protocols are there - and situations are tweaked as they appear with each individual case.
12. My pdoc will handle any side effects meds needed - he knows what he's doing (of course they know each other).
13. Pdoc can always be paged - and he spends a lot of time in the ER in case I ever need to go there.
14. Re. the IL28B test - said - yes, it can predict, but it also might be wrong. Useless at this point - that's his opinion anyway.
15. Unfortunately for me, the new protocol (treat when diagnosed) was not in place until a year ago, but it is what it is.
I will go to Vegas on July 11 to see Gish's Group. I will see what their take is. Then I will decide whether to stay with Dr. Kahn or do the Gish trip, which would involve some trips up there, and I just hate even being in a car that long. 2 hours one way. Just how I am. I freak easily. Like Dr. Khan said, tx is tx. The rules are there, the rules are followed, and everyone in the biz. now is on the same page... or if not, they should be.
I have another appt. with Dr. Kahn on the 18th - when I will deliver my decision whether to stay local or go to Vegas. It probably seems that going with Gish is the way, but.. my husband and I are not getting any younger, and it really is a long haul up there and Vegas is INSANE - traffic is terrifying. I have more faith in my local gastro. after today, and my hub was with me and he has a sixth sense about people. He felt that the man was solid, real, good at what he does, and he cares.
Oh, last thing, I'm still alive.
Cat your decision is now clear =Dr.Gish.I started with idiot doctor and had to stay with him till the end of 12 weeks nobody here would take over during that period,now I will see new MD on Friday.I read all the notes above about your bx report. -what a mess.My impression is that your whole liver situation doesn”t look that bad .Your GI got you too scared unnecessarily.In any case you sure have good chance to be treated and achieve SVR.Go and get some rest
I think that the radiologist who wrote the report was a trainee or something. It really makes NO SENSE to write that dreaded word parenthetically. Yep, you saw the actual verbiage from the report. It is just incomprehensible how they seemed to add 2 and 3 and get 4 but not show a 4. And I also think that if the GI knew his stuff he would have known he was looking at something just a tad flaky.
Absolutely, my chances of SVR have increased tremendously if in fact I am not cirrhotic. I can't see Gish fast enough, but I've got to just wait - it's only 2 weeks away.
Whavev's - I'm going to Vegas. Viva Las Vegas
Absolutely, my chances of SVR have increased tremendously if in fact I am not cirrhotic. I can't see Gish fast enough, but I've got to just wait - it's only 2 weeks away.
Whavev's - I'm going to Vegas. Viva Las Vegas
I just do not understand why the report has cirrhosis stated parenthetically like that. Nothing else you wrote seems indicative of that.
I know the first doctor told you to not worry about the numbers when you cited your chances for SVR but being treatment naive and not cirrhotic drastically increases the odds for your chances for SVR. As has been said you will see what Dr. G has to say but that is the reason I would be persistent about it. :)
I know the first doctor told you to not worry about the numbers when you cited your chances for SVR but being treatment naive and not cirrhotic drastically increases the odds for your chances for SVR. As has been said you will see what Dr. G has to say but that is the reason I would be persistent about it. :)
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I'll take it - you and Hector have done a great job with this, and I really appreciate it. Thanks to all for their time and effort. We can be done with this thing and I'll go see the Gish docs two weeks from today.
I have stage 2/3 fibrosis. Fine. Can deal with that.
And that GI scared the hell out of me for nothing. I should report him to the AMA or something. Naw. Just gonna move on. And how relieved I am - I have a good chance of clearing the virus because I am treatment naive.
THANK YOU AGAIN! All of you. What a damn shame I had to put all of you through this when I should have gotten the correct answers from a doctor. wow
I'll take it - you and Hector have done a great job with this, and I really appreciate it. Thanks to all for their time and effort. We can be done with this thing and I'll go see the Gish docs two weeks from today.
I have stage 2/3 fibrosis. Fine. Can deal with that.
And that GI scared the hell out of me for nothing. I should report him to the AMA or something. Naw. Just gonna move on. And how relieved I am - I have a good chance of clearing the virus because I am treatment naive.
THANK YOU AGAIN! All of you. What a damn shame I had to put all of you through this when I should have gotten the correct answers from a doctor. wow
Thanks, but... I have the report - I have every single report and lab for the past ten years. I posted on here the exact wording on the report (except for the stuff that I know is meaningless as far as deciphering it - just common stuff like I have chronic Hep C), looking at it and typing the words. It is very very brief. It's a short mess is what it is.
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