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.
I just read this whole post, and one thing is clear, ditch your GI and head to Vegas !
This guy has scared you with mis-information. If nothing else, that should make you steer clear of him.
My GI, saw I had cirrhosis and immediately suggested I see a hepatologist.
As we've seen here over and over, not all hep C docs do tx the same.
My liver clinic has you first go to a meeting with a hepatic NP. Then you do weekly cbcs, and monthly see either the NP or the hepatologist.
We've had too many members not getting frequent enough labs, landing up in the ER due to doctor error, etc.
You are very fortunate to be able to see the renown Dr. Gish.
Good luck in moving forward and congratulations on NOT having cirrhosis.
Your chances of clearing the virus and your liver returning to health are much greater now.
This guy has scared you with mis-information. If nothing else, that should make you steer clear of him.
My GI, saw I had cirrhosis and immediately suggested I see a hepatologist.
As we've seen here over and over, not all hep C docs do tx the same.
My liver clinic has you first go to a meeting with a hepatic NP. Then you do weekly cbcs, and monthly see either the NP or the hepatologist.
We've had too many members not getting frequent enough labs, landing up in the ER due to doctor error, etc.
You are very fortunate to be able to see the renown Dr. Gish.
Good luck in moving forward and congratulations on NOT having cirrhosis.
Your chances of clearing the virus and your liver returning to health are much greater now.
Hector, thanks for the clarification. Excellent news for cat.
Advocate1955
Advocate1955
"I am unclear as to whether Cat means that her doc said she is between f2/f3 or f4 and some gradation within f4."
There are no degrees/stages/gradations of cirrhosis in a biopsy report. There are only stage 0-4. There is only one stage of cirrhosis that can be diagnosed using a biopsy. Stage 4 (cirrhosis). A biopsy can't tell the difference between compensated or decompensated cirrhosis. Cirrhosis is Cirrhosis.
The different classes of cirrhosis (which are diagnosed using the Child-Pugh system) are based upon the complications of cirrhosis and the degree to which the liver is able to function.
She has signs of both stage 2 and stage 3 fibrosis. Not stage 4, cirrhosis.
Hector
There are no degrees/stages/gradations of cirrhosis in a biopsy report. There are only stage 0-4. There is only one stage of cirrhosis that can be diagnosed using a biopsy. Stage 4 (cirrhosis). A biopsy can't tell the difference between compensated or decompensated cirrhosis. Cirrhosis is Cirrhosis.
The different classes of cirrhosis (which are diagnosed using the Child-Pugh system) are based upon the complications of cirrhosis and the degree to which the liver is able to function.
She has signs of both stage 2 and stage 3 fibrosis. Not stage 4, cirrhosis.
Hector
Stage 2 is peri-portal fibrosis with/without extension and portal-portal bridging.
Stage 3 is 3=bridging fibrosis the spreading and connecting to other areas that contain fibrosis
Best to post biopsy report word for word if you want accurate feedback.
Hector
Stage 3 is 3=bridging fibrosis the spreading and connecting to other areas that contain fibrosis
Best to post biopsy report word for word if you want accurate feedback.
Hector
;) ~ the first thing I did today when I went into the medical center for the appt. was stop by the lab and get their card - with phone and fax number and a name. Ha. I have an entire collage of cards for the good doctors in LV. I will actually do that but not too crazy. Put the originals on sheets of paper and copy them - pharmacy, pdoc, opthalmologist, radiation dept at hospital, imaging center therapist.... I have 'em all. Maybe I should get a card for the cafeteria too. Oh, my. I must go to bed.
BINGO! That post just did it for me. Totally. You hit all the "yes" buttons for VIVA LAS VEGAS. I don't know how you got so much good advice and information and remembered so much of my story (getting short of breath) into one post. With the GG (you all know what that stands for by now), patients can call 24/7/365 and .... talk to a .... DOCTOR. And THAT is what I need. I can get really emotional even now, not treating. I can work myself up into thinking I'm having a stroke - I can very easily trip myself up a level into panic. So.... yeah, I need a real doctor available to me ALL the time.
You make me realize how important it is - how SO important it is - to be treated by people who.... um.... treat HCV for a living. Colonoscopies are cool, I mean they are a way to make a lotta money too, I guess. But (pardon the pun) I am not seeing someone to find out if I have colon cancer or polyps or whatever.
Maybe I will find a place off the strip where I can stay with my two cats and we'll do a week up there. That will be Trip #2. Trip #1 is to have hub go and see what a hepatologist looks like. lol
I am getting blotto. Obviously.
THANK YOU EVERYONE.
You make me realize how important it is - how SO important it is - to be treated by people who.... um.... treat HCV for a living. Colonoscopies are cool, I mean they are a way to make a lotta money too, I guess. But (pardon the pun) I am not seeing someone to find out if I have colon cancer or polyps or whatever.
Maybe I will find a place off the strip where I can stay with my two cats and we'll do a week up there. That will be Trip #2. Trip #1 is to have hub go and see what a hepatologist looks like. lol
I am getting blotto. Obviously.
THANK YOU EVERYONE.
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