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.
Ask for a copy of your BX report from your doctor. I have copies of all the test results and all the blood test results. then you can post the BX results word for word and not have to worry about how your doctor translated it.
"She has signs of both stage 2 and stage 3 fibrosis. Not stage 4, cirrhosis."
Exactly
Exactly
There are bx slides in the radiology department, and I am more than sure that the Gish doctors will want and actually have to see them. That's where the real information will be - and they will study them and either arrive at a answer or do another biopsy up there.
I feel bad for taking all this forum space over this mess.
Thanks ALL of you. What a rip-off I got, didn't I?
I feel bad for taking all this forum space over this mess.
Thanks ALL of you. What a rip-off I got, didn't I?
Thank you, Hawk. Yes, for sure I've learned one thing. I am outta there. And secondly, I am REALLY fortunate I can see Gish since obviously the local GI knows not a whole lot about Hep C if he can't interpret the bx report, no matter how vague it may be. Two weeks from today - Vegas, baby.
When I asked doc point blank what stage I was in, he sort of shuffled around and said something like "around 2" - makes no sense - unless, as someone said, he was talking about cirrhotic stage. I wanted clarification on two things (1) why was the word "cirrhosis" at the end of that one sentence about bridging fibrosis, and (2) what did those numbers (2+/3+) represent. I didn't get answers to either of then, I now realize.
And WHY he said that I have cirrhosis when there is no "4" anywhere - well, now I am more than upset. I'm gonna just trash this stupid thing and see what Gish's docs in Vegas can make of it. The only thing that I really need to know is why the word "cirrhosis" is at the end of that sentence and why the doc would say I have cirrhosis when there are no 4's. I was also concerned, and still am, and THIS is where those numbers are and the ONLY place there are numbers, about this:
".... periportal and lobular chronic inflammation with moderate to severe piecemeal necrosis (2+/3+)"
Again, I am sorry for all this confusion. Forget the entire start of this post. I finally quoted the bx report, the ONLY relevant sections, and the relevant parts of the lab work. That's all I have. And what do I have? Nothing definitive. I'm sure you guys have never seen any bx report as vague as this one... so thank you for trying.
I'm going to go with you, Hector. I probably have signs of stages 2 and 3 fibrosis. The fibrosis is bridging but not at the cirrhotic stage yet - just don't know what that word is in there. God help me.
Vegas here I come.
And WHY he said that I have cirrhosis when there is no "4" anywhere - well, now I am more than upset. I'm gonna just trash this stupid thing and see what Gish's docs in Vegas can make of it. The only thing that I really need to know is why the word "cirrhosis" is at the end of that sentence and why the doc would say I have cirrhosis when there are no 4's. I was also concerned, and still am, and THIS is where those numbers are and the ONLY place there are numbers, about this:
".... periportal and lobular chronic inflammation with moderate to severe piecemeal necrosis (2+/3+)"
Again, I am sorry for all this confusion. Forget the entire start of this post. I finally quoted the bx report, the ONLY relevant sections, and the relevant parts of the lab work. That's all I have. And what do I have? Nothing definitive. I'm sure you guys have never seen any bx report as vague as this one... so thank you for trying.
I'm going to go with you, Hector. I probably have signs of stages 2 and 3 fibrosis. The fibrosis is bridging but not at the cirrhotic stage yet - just don't know what that word is in there. God help me.
Vegas here I come.
No "f" anythings. I wrote exactly what the report said as well as the doctor's interpretation which still does not make sense. I'm sorry this has confused everyone. The actual report verbiage is not what I "mean" - it's the clinical findings on the report. .~~~~~~~~~~
"Trichrome stain demonstrates periportal and bridging fibrosis (cirrrhosis)."
Then: "The submitted material demonstrates periportal and lobular chronic inflammation with moderate to severe piecemeal necrosis (2+/3+)"
Other than that, there wasn't much on there. The above are the only two sentences that said anything other than that I have chronic active hepatitis consistent with Hep C and there is no evidence of malignancy. Oh, and the description of the specimen - color - tan/red (that may be significant?) and size.
I am so frustrated because this biopsy and my GI's explanation were both a D-. I learned nothing. If you guys can't figure it out from the exact verbiage on that report, then... well, I'll wait until July 11. Gish people may not know what it means either since it's so ... lacking information.... clear information. I was so hoping I would know exactly where I am with this disease. And I don't. You guys have tried. I appreciate it. But we don't have enough to go on I guess.
Hector, make sense? I don't "mean" anything because I don't understand any of it - I am writing exactly what I'm reading. I feel like crying. My first biopsy in 2002 is so clear in meaning: Stage 1, Grade 0 - verbiage I can understand and even a photo of a stain slide. This one is sparse and uninformative. I't WORTHLESS.
Okay, so knowing that, knowing that what you see above is all that is on the report that is of any significance - are we just ..... well, we're guessing now, aren't we? I feel more angry than like crying. I hope my health providers knock the charges for this down to basement levels.
"Trichrome stain demonstrates periportal and bridging fibrosis (cirrrhosis)."
Then: "The submitted material demonstrates periportal and lobular chronic inflammation with moderate to severe piecemeal necrosis (2+/3+)"
Other than that, there wasn't much on there. The above are the only two sentences that said anything other than that I have chronic active hepatitis consistent with Hep C and there is no evidence of malignancy. Oh, and the description of the specimen - color - tan/red (that may be significant?) and size.
I am so frustrated because this biopsy and my GI's explanation were both a D-. I learned nothing. If you guys can't figure it out from the exact verbiage on that report, then... well, I'll wait until July 11. Gish people may not know what it means either since it's so ... lacking information.... clear information. I was so hoping I would know exactly where I am with this disease. And I don't. You guys have tried. I appreciate it. But we don't have enough to go on I guess.
Hector, make sense? I don't "mean" anything because I don't understand any of it - I am writing exactly what I'm reading. I feel like crying. My first biopsy in 2002 is so clear in meaning: Stage 1, Grade 0 - verbiage I can understand and even a photo of a stain slide. This one is sparse and uninformative. I't WORTHLESS.
Okay, so knowing that, knowing that what you see above is all that is on the report that is of any significance - are we just ..... well, we're guessing now, aren't we? I feel more angry than like crying. I hope my health providers knock the charges for this down to basement levels.
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