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.
There are a number of things your doctor said that I do not agree with but the relevant point is you are going to see Gish.
Don't allow the GI to convince you that it doesn't matter who you do treatment with.
I began tx, my first time with a GI. Part way through I switched to what, was at the time referred to as the Gish group ( Gish has since changed his base).
I couldn't have made a better choice
My current hepatologist knows far more about liver disease than the GI did and is always available via email.
With cirrhosis, it's even more important that you have an experienced, knowledgeable doctor.
Don't beat yourself up about so-called protocol. There are plenty of people who are diagnosed and never have liver damage.
Many people die with hep C not of it.
This is the frustrating thing about hep C, it doesn't behave the same for everyone~not by a long shot.
Yes, eat as healthy as possible, meaning avoid processed foods. Read labels. Since our livers are filters, the less they have to filter, the easier it is on them. Try to eat as organic as you can.
Don't eat red meat and keep the salt intake down. ( that's where reading labels comes in, watch out for sodium)
BTW: I had a liver transplant in April 2009 due to hep C, I'm still alive too :)
Don't allow the GI to convince you that it doesn't matter who you do treatment with.
I began tx, my first time with a GI. Part way through I switched to what, was at the time referred to as the Gish group ( Gish has since changed his base).
I couldn't have made a better choice
My current hepatologist knows far more about liver disease than the GI did and is always available via email.
With cirrhosis, it's even more important that you have an experienced, knowledgeable doctor.
Don't beat yourself up about so-called protocol. There are plenty of people who are diagnosed and never have liver damage.
Many people die with hep C not of it.
This is the frustrating thing about hep C, it doesn't behave the same for everyone~not by a long shot.
Yes, eat as healthy as possible, meaning avoid processed foods. Read labels. Since our livers are filters, the less they have to filter, the easier it is on them. Try to eat as organic as you can.
Don't eat red meat and keep the salt intake down. ( that's where reading labels comes in, watch out for sodium)
BTW: I had a liver transplant in April 2009 due to hep C, I'm still alive too :)
Cat ,sorry about your diagnosis that is certainly very hard to swallow but as you put it ,it is what it is now, but things can be done ,you are stable ,you have a support from local MDs,family ,friends.and you will still see dr Gilsh.Seems like you will be in a good hands.Let us posted whom you chose .Reading all your article I feel you have a good chance to improve and heal your liver.Stay strong !Gooood luck!
The more I let this sink in and esp. after what Hawk wrote, I think I have a chance in a LIFETIME by being already in with Dr. Gish. Not many have this opportunity. Might have been different if I was Stage 2 or something but Hawk is right. It's cirrhosis. That means - getting the most expert care that I can. And it's only 100 miles away.
THANK YOU. I was kinda thinking you would respond just the way you did - and that is what I needed to hear. I'd be a fool not to have the Gish doctors treat this. If I have to, since it is a long drive, I can always spend the night as long as I can make the drive by myself (not easy for me, but I'm dealing with my life here). To get in with these people then to choose my local GI because it's more convenient.... well, I made that mistake by not treating sooner. It wasn't "convenient" at the time.
I am looking forward even though that sounds strange to meeting up with the docs in Vegas who work for Gish. Have a feeling I'm going to get a whole different take on all of this. I really just want to get on with it - the tx - but I have GOT to slow down and think right, not take the seemingly easier route (staying here) just because it means I don't have to go so far. I mean, I'm sure that e-mails and phone calls are commonplace with G docs. I'm sure a lot of people, like you, do what they have to do to get to them. Again, thank you.
I am looking forward even though that sounds strange to meeting up with the docs in Vegas who work for Gish. Have a feeling I'm going to get a whole different take on all of this. I really just want to get on with it - the tx - but I have GOT to slow down and think right, not take the seemingly easier route (staying here) just because it means I don't have to go so far. I mean, I'm sure that e-mails and phone calls are commonplace with G docs. I'm sure a lot of people, like you, do what they have to do to get to them. Again, thank you.
The fibrosis score is also assigned a number from 0-4:
• 0 = no scarring
• 1 = minimal scarring
• 2 = scarring has occurred and extends outside
the areas in the liver that contains blood vessels
• 3=bridging fibrosis is spreading and
connecting to other areas that contain fibrosis
• 4=cirrhosis or advanced scarring of the liver
• 0 = no scarring
• 1 = minimal scarring
• 2 = scarring has occurred and extends outside
the areas in the liver that contains blood vessels
• 3=bridging fibrosis is spreading and
connecting to other areas that contain fibrosis
• 4=cirrhosis or advanced scarring of the liver
After having a very bad several months with my local GI and the case manger, and after they bungled several things, I finally switched to a Hepatoloiost in Minneapolis/St. Paul, which is an 80 mile drive one way. I saw him on June 4th and my faith is now restored in doctors. He was friendly, understanding, knowledgeable,compassionate, and he did a good exam and took a good history. He was reassuring and competent. And he was Real!
All I can say is that I wish I had switched sooner. I just did not know any better when I started, and my PCP was zero help. He knew nothing, LOL.
So I guess what I am saying is that a knowledgeable and competent doctor is worth his weight in gold. I know my treatment would have been a lot easier had my local docs known what they were doing and had they treated my side effects. You will be on treatment for several months. It pays to get a knowledgeable and competent doctor at the beginning of treatment.
Best of luck.
All I can say is that I wish I had switched sooner. I just did not know any better when I started, and my PCP was zero help. He knew nothing, LOL.
So I guess what I am saying is that a knowledgeable and competent doctor is worth his weight in gold. I know my treatment would have been a lot easier had my local docs known what they were doing and had they treated my side effects. You will be on treatment for several months. It pays to get a knowledgeable and competent doctor at the beginning of treatment.
Best of luck.
Point 1.
As can-do says... stage 3 is NOT cirrhosis. There is a huge difference between stage 3 and stage 4. The blood tests showing liver function - serum albumin, clotting factors and bilirubin and even sometimes liver enzymes are still within normal ranges. Indicating the liver is functioning normally. Scar tissue (septa) at stage three connects between liver cell but do not surround and cut off the the cells from the rest of the liver as happens when a person has cirrhosis.
On the other hand for patients with cirrhosis, stage 4 liver disease...
Many people with compensated cirrhosis experience few or no symptoms and can live for many years without serious complications. But the structure of the liver is altered: the usual smooth texture (think of the shiny nutmeg colored liver you see at the supermarket) of the liver starts to become nodular and lumpy. Nodules are areas of liver cells that have become cut off from the rest of the liver by circular bands of scarring with liver cells unsuccessfully trying to regenerate inside the bands. The free flow of blood throughout the liver starts to be compromised (portal hypertension). This can be seen with ultrasound, CT scan or MRI. The spleen becomes enlarged. Varices develop.
Obviously very different stages of liver disease...
4. Yes you are still treatable. As person with compensated cirrhosis are too. But you have a better chance of SVR because you have less liver damage than a person with cirrhosis.
Point 5.
You do not have a low platelet count like cirrrhotic do. Usually below 100,000. You have plenty of platelets to do treatment unlike if you had cirrhosis. So platelet count is of no concern to a person with stage 3 cirrhosis.
FYI: Procrit is used to raise for low hemoglobin levels (anemia). Not platelets.
Point 7.
AFP is of no importance in your case as only people with stage 4 cirrhosis have an increased risk of HCC.
VL changes all the time. But there is no essential difference between 660,000 down from 770,000. This are log numbers. The only significant change is a one of two log change. If 770,000 went to 77,000 that would be significant.
Point 8. Your liver is functioning normally. Yes, you have fibrosis but it isn't enough to prevent your healthy liver cells from functioning normally. People with stage 3 liver disease should treat their hepatitis C before there liver disease gets worse and impacts the chances of SRV.
Point 9. Your liver is still functioning normally and will heal itself when you get rid of the hep C. That is the purpose of treatment.
Point 14. IL28B test is irrelevant is most cases of hepatitis C. It doesn't change the statistics of SVR that much except in a few very particular cases of disease.
Dr. Gish will explain all of this to you and that all your concerns about cirrhosis is not something that is an issue for you. Treat your hepatitis while it is still relatively healthy and it will heal itself.
Cheers!
Hector
As can-do says... stage 3 is NOT cirrhosis. There is a huge difference between stage 3 and stage 4. The blood tests showing liver function - serum albumin, clotting factors and bilirubin and even sometimes liver enzymes are still within normal ranges. Indicating the liver is functioning normally. Scar tissue (septa) at stage three connects between liver cell but do not surround and cut off the the cells from the rest of the liver as happens when a person has cirrhosis.
On the other hand for patients with cirrhosis, stage 4 liver disease...
Many people with compensated cirrhosis experience few or no symptoms and can live for many years without serious complications. But the structure of the liver is altered: the usual smooth texture (think of the shiny nutmeg colored liver you see at the supermarket) of the liver starts to become nodular and lumpy. Nodules are areas of liver cells that have become cut off from the rest of the liver by circular bands of scarring with liver cells unsuccessfully trying to regenerate inside the bands. The free flow of blood throughout the liver starts to be compromised (portal hypertension). This can be seen with ultrasound, CT scan or MRI. The spleen becomes enlarged. Varices develop.
Obviously very different stages of liver disease...
4. Yes you are still treatable. As person with compensated cirrhosis are too. But you have a better chance of SVR because you have less liver damage than a person with cirrhosis.
Point 5.
You do not have a low platelet count like cirrrhotic do. Usually below 100,000. You have plenty of platelets to do treatment unlike if you had cirrhosis. So platelet count is of no concern to a person with stage 3 cirrhosis.
FYI: Procrit is used to raise for low hemoglobin levels (anemia). Not platelets.
Point 7.
AFP is of no importance in your case as only people with stage 4 cirrhosis have an increased risk of HCC.
VL changes all the time. But there is no essential difference between 660,000 down from 770,000. This are log numbers. The only significant change is a one of two log change. If 770,000 went to 77,000 that would be significant.
Point 8. Your liver is functioning normally. Yes, you have fibrosis but it isn't enough to prevent your healthy liver cells from functioning normally. People with stage 3 liver disease should treat their hepatitis C before there liver disease gets worse and impacts the chances of SRV.
Point 9. Your liver is still functioning normally and will heal itself when you get rid of the hep C. That is the purpose of treatment.
Point 14. IL28B test is irrelevant is most cases of hepatitis C. It doesn't change the statistics of SVR that much except in a few very particular cases of disease.
Dr. Gish will explain all of this to you and that all your concerns about cirrhosis is not something that is an issue for you. Treat your hepatitis while it is still relatively healthy and it will heal itself.
Cheers!
Hector
Hi Cat,
Fibrosis 4 is Cirrhosis, but it isn't the end of the world. People can and do live with Cirrhosis for many years and as long as their liver is compensated they can feel very well, live active lives, and treat Hep C when treatment options are available. I'm not really sure what you mean when you say Cirrhosis and 2+/3+, since f4 is Cirrhosis, unless you are referring to various grades within Cirrhosis. Remember, a biopsy is just a slice of the liver and the pathologist can only read what is on that particular slice, so it is only their best guestimate based on all of the pieces of information that they have. I'm not sure that there is really a clear cut demarcation between one stage and another, since there has to be a gradual bridging or transition from one stage before damage progresses to the next stage. Overall, my take away from your post is 1) treat now while your liver is still able to handle treatment, and 2) make the switch to a hepatologist. Cirrhotics should be seen by hepatologists. Don't worry about the past, it's in the past. Focus on the future. It's probably normal to be afraid or feel angry to get the diagnosis of Cirrhosis. I remember that my husband and I felt scared (and angry) to learn that he had progressed from f1/f2 to f4 Cirrhosis in 3 years between 2007 - 2010. It seemed impossible to believe because progression of fibrosis takes many years and he was being monitored every six months, etc., but it happened. Gradually the fear and anger turned into a passion for doing whatever needed to be done to get rid of Hep C and take care of his liver. Fear and anger can be paralyzing, so don't let them grip you. I'd love to endorse your hubby's sixth sense, but you need a good hepatologist. Just hop in your car and head to Vegas. See the Phantom of the Opera while you're there.
Advocate1955
Fibrosis 4 is Cirrhosis, but it isn't the end of the world. People can and do live with Cirrhosis for many years and as long as their liver is compensated they can feel very well, live active lives, and treat Hep C when treatment options are available. I'm not really sure what you mean when you say Cirrhosis and 2+/3+, since f4 is Cirrhosis, unless you are referring to various grades within Cirrhosis. Remember, a biopsy is just a slice of the liver and the pathologist can only read what is on that particular slice, so it is only their best guestimate based on all of the pieces of information that they have. I'm not sure that there is really a clear cut demarcation between one stage and another, since there has to be a gradual bridging or transition from one stage before damage progresses to the next stage. Overall, my take away from your post is 1) treat now while your liver is still able to handle treatment, and 2) make the switch to a hepatologist. Cirrhotics should be seen by hepatologists. Don't worry about the past, it's in the past. Focus on the future. It's probably normal to be afraid or feel angry to get the diagnosis of Cirrhosis. I remember that my husband and I felt scared (and angry) to learn that he had progressed from f1/f2 to f4 Cirrhosis in 3 years between 2007 - 2010. It seemed impossible to believe because progression of fibrosis takes many years and he was being monitored every six months, etc., but it happened. Gradually the fear and anger turned into a passion for doing whatever needed to be done to get rid of Hep C and take care of his liver. Fear and anger can be paralyzing, so don't let them grip you. I'd love to endorse your hubby's sixth sense, but you need a good hepatologist. Just hop in your car and head to Vegas. See the Phantom of the Opera while you're there.
Advocate1955
That's what doesn't make sense to me. The bx report says this...."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+)"
I asked the GI - what STAGE AM I? His response actually now that I remember it was, "maybe 2" What?
I told him I did not understand the 2+/3+ part - well, obviously neither did he.
I asked him directly, "Do I have cirrhosis?" He said yes.
???????????
I asked him if it was early stage. He said NO.
So the whole thing is not adding up now that several hours have passed. There is no 4 on there.
What's your take?
Then: "The submitted material demonstrates periportal and lobular chronic inflammation with moderate to severe piecemeal necrosis (2+/3+)"
I asked the GI - what STAGE AM I? His response actually now that I remember it was, "maybe 2" What?
I told him I did not understand the 2+/3+ part - well, obviously neither did he.
I asked him directly, "Do I have cirrhosis?" He said yes.
???????????
I asked him if it was early stage. He said NO.
So the whole thing is not adding up now that several hours have passed. There is no 4 on there.
What's your take?
I see your "list" now and what is on my bx report still makes no sense. What are the two numbers I have on there? My last bx in 2002 spelled it out: Stage 1, Grade 0 (now those were the days, weren't they?). I thought I would get a definitive answer today but... I didn't.
So I see the rest of you are gettin' this like I am now. As in, HUH? What are those TWO numbers - what does each one represent? And if my GI couldn't really answer it definitively and came up with "maybe 2" I mean, jeez.
So I see the rest of you are gettin' this like I am now. As in, HUH? What are those TWO numbers - what does each one represent? And if my GI couldn't really answer it definitively and came up with "maybe 2" I mean, jeez.
Hector,
I am unclear as to whether Cat means that her doc said she is between f2/f3 or f4 and some gradation within f4. Either way, her liver is compensated, that's the most important part.
IL28B: That is what my husband's hepatologist said about the IL28B as well, not very useful information in most cases they are treating.
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. Either way, her liver is compensated, that's the most important part.
IL28B: That is what my husband's hepatologist said about the IL28B as well, not very useful information in most cases they are treating.
Advocate1955
Hoping there was some misunderstanding with what your doctor said, maybe he mis-spoke. Reading between the lines it sounds as if your late stage 2 or early 3. As Hector pointed out your bloodwork does not point to someone with cirrhosis.
If I was you I would see doctor gish, you have the chance to see one of the best, as treatment goes there is much more then just taking the meds.
Your odds are much better then us with cirrhosis, you want to lick this thing before you become cirrhotic....... Best to you
If I was you I would see doctor gish, you have the chance to see one of the best, as treatment goes there is much more then just taking the meds.
Your odds are much better then us with cirrhosis, you want to lick this thing before you become cirrhotic....... Best to you
This is so frustrating. I hear all of you. I have NO IDEA what stage I'm in at this point. I'm going to read Hector's post a few times. I am not believing I'm cirrhotic since there is NO FOUR in there. Jeez. This is getting ridiculous. Dr. Gish's folks are the ones who will either be able to decipher this brief report or do another bx. I'm fine with that if need be.
Yeah, maybe I'll just drive my little self up there with ease since I know I'm headed for healing - spend a couple of days, see some shows......
I learned NOTHING today for the most part. I just posted what is on the report. Can anyone make sense of it since the GI bluffed his way through it? I am most definitely not any 2, ya know? I was sitting there with all the info. you all have given me going on in my head thinking, "What is this guy talking about?" Other than what I typed up there, the rest was just that there was no malignancy and that, duh, I have chronic Hepatitis C.
Yeah, maybe I'll just drive my little self up there with ease since I know I'm headed for healing - spend a couple of days, see some shows......
I learned NOTHING today for the most part. I just posted what is on the report. Can anyone make sense of it since the GI bluffed his way through it? I am most definitely not any 2, ya know? I was sitting there with all the info. you all have given me going on in my head thinking, "What is this guy talking about?" Other than what I typed up there, the rest was just that there was no malignancy and that, duh, I have chronic Hepatitis C.
Well, I'm guessing that since your report said "Trichrome stain demonstrates periportal and bridging fibrosis (cirrrhosis)" and then: "The submitted material demonstrates periportal and lobular chronic inflammation with moderate to severe piecemeal necrosis (2+/3+)" that you have moderate Cirrhosis (f4). When you asked your doctor what stage you are and he said "maybe 2" I wonder if he was referring to the gradations within Cirrhosis (e.g. beginning Cirrhosis, progressing Cirrhosis, further progression, end stage liver disease). That's my guess. But I'm not a doctor, so I'm not sure. It sounds like you have bridging fibrosis that form nodules of scar tissue. Let us know what Dr. Gish says about your stage of liver damage. Either way, there's nothing to panic about. Sleep. Rest.
Advocate1955
Advocate1955
You are the bomb! Okay, I got my labs today and now I am looking at them and typing from that:
Platelet count 142 L (range 150-450) - all the other CBC data was within normal range.... WBC, RBC, HGB, HCT etc oh, MPV 12.5 H (range 7.4-10.4)
Differential: Neutrophilis 40 L (range 50-70), Lymphocytes 48 H (range 20-45), Eosinophils 3 H (range 0-2).
Absolute Cell Count: all normal range
Coagulation: Prothrombine Time 14 (range 11.1 - 14.5); INR 1.1 (range .8 - 1.1)
I gave you the AFP (meaningless) and one HCV RNA PCR Quant 687,000 High (range >43 normal I guess however THAT relates) then under that HCV RNA PCR Quant 5.4 (High - range >43 normal I guess - again, huh?)
ALT 78; AST 61
This is crazy!
Now - last CT scan - salient aspects of:
liver is NORMAL in size, spleen NORMAL in size Everything else NORMAL except "a mottled appearance in the spleenic parenchyma in the acute phase of the contrast administration appears to be due to differential perfusion and not associated with pathology.."
And, "Decreased attenuation is seen throughout the hepatic parenchyma consistent with steatosis"
This is CIRRHOSIS???? Am I missing something? Boy, am I glad I came here to throw all this out.
Platelet count 142 L (range 150-450) - all the other CBC data was within normal range.... WBC, RBC, HGB, HCT etc oh, MPV 12.5 H (range 7.4-10.4)
Differential: Neutrophilis 40 L (range 50-70), Lymphocytes 48 H (range 20-45), Eosinophils 3 H (range 0-2).
Absolute Cell Count: all normal range
Coagulation: Prothrombine Time 14 (range 11.1 - 14.5); INR 1.1 (range .8 - 1.1)
I gave you the AFP (meaningless) and one HCV RNA PCR Quant 687,000 High (range >43 normal I guess however THAT relates) then under that HCV RNA PCR Quant 5.4 (High - range >43 normal I guess - again, huh?)
ALT 78; AST 61
This is crazy!
Now - last CT scan - salient aspects of:
liver is NORMAL in size, spleen NORMAL in size Everything else NORMAL except "a mottled appearance in the spleenic parenchyma in the acute phase of the contrast administration appears to be due to differential perfusion and not associated with pathology.."
And, "Decreased attenuation is seen throughout the hepatic parenchyma consistent with steatosis"
This is CIRRHOSIS???? Am I missing something? Boy, am I glad I came here to throw all this out.
hmmmmmmmmmmmmm ~ yeah, I think doc and I were talking oranges and tangerines. Since I'm the patient HE should have been clear what he meant by "maybe 2" - but I GUESS you may be right - Stage 2 Cirrhosis. How just absolutely ridiculous for us to have to be guessing when I saw a freaking GI to get the answers and either didn't or thought he was talking about tangerines and I was thinking about oranges. Good Grief. Dr. Gish here I come.
re. your phrase " I'm not really sure what you mean when you say Cirrhosis and 2+/3+, since f4 is Cirrhosis, unless you are referring to various grades within Cirrhosis."
I DON'T KNOW WHAT I MEAN. lol I don't mean anything. It's what the crazy report says and what the GI told me. I give him a huge DUH.
This is pathetic, isn't it? lol
I DON'T KNOW WHAT I MEAN. lol I don't mean anything. It's what the crazy report says and what the GI told me. I give him a huge DUH.
This is pathetic, isn't it? lol
Wow, sounds like you had a very productive day. I am glad you took your husband with you. I trust my husband's instincts when it comes to a lot of things too. Your hubby might be equally impressed with Dr. Gish.
You were right about one thing, if you think about it once you start treating much of the correspondence can take place via phone/fax/email. I know you realize this by now but: be sure to establish a contact person for labs on the first day with either doc you see. I like that you already have a good relationship with your PCP and she can help with rescue meds. :)
I am not sure I follow where cirrhosis is coming from. Is the word actually stated parenthetically on the report? Maybe the others can comment if this chart is too oversimplified to be meaningful.
It says this on the top:
Fibrosis usually begins in the portal area in HCV and in the central vein in alcoholic liver disease. Bridging fibrosis refers to the presence of fibrosis that reaches from a portal area to another portal area. Cirrhosis consists of extensive bridging fibrosis in the presence of regeneration such that normal portal areas and normal central veins cannot be identified.
http://www.sinomedresearch.org/hcv/Biopsy/stage.htm
**Either way you are sure to receive further clarification when you visit with Dr. Gish. I actually only kept the appointment with my second opinion doctor since I booked it so far in advance and I was curious. I thought I had already made up my mind. I ended up going with my second opinion doctor.
Stay strong!! :) :)
You were right about one thing, if you think about it once you start treating much of the correspondence can take place via phone/fax/email. I know you realize this by now but: be sure to establish a contact person for labs on the first day with either doc you see. I like that you already have a good relationship with your PCP and she can help with rescue meds. :)
I am not sure I follow where cirrhosis is coming from. Is the word actually stated parenthetically on the report? Maybe the others can comment if this chart is too oversimplified to be meaningful.
It says this on the top:
Fibrosis usually begins in the portal area in HCV and in the central vein in alcoholic liver disease. Bridging fibrosis refers to the presence of fibrosis that reaches from a portal area to another portal area. Cirrhosis consists of extensive bridging fibrosis in the presence of regeneration such that normal portal areas and normal central veins cannot be identified.
http://www.sinomedresearch.org/hcv/Biopsy/stage.htm
**Either way you are sure to receive further clarification when you visit with Dr. Gish. I actually only kept the appointment with my second opinion doctor since I booked it so far in advance and I was curious. I thought I had already made up my mind. I ended up going with my second opinion doctor.
Stay strong!! :) :)
It seems you are already getting conflicting info from the gastro who said, "tx is tx - I'm going to get the same thing no matter who's in charge of it." That's a bit of a red flag to me especially with you coming away with saying you have cirrhosis when he wants to stage it a 2/3 combo; is it cirrhosis, or not? It doesn't sound like it, or at least he left you unclear about that.
I don't agree "tx is tx"....he may be referring to the meds and protocols, but how they are used, adjusted and how side effects are treated can be very different. We hear about all kinds of tweaking; it's the doctor's call/judgment and some have been known to over or under react, or to not be able to be proactive to prevent situations. Tx is different for everyone even if the drugs are the same.
This doctor seems a little flippant in his approach to tx'g HVC, like it's a no brainer if you simply follow "the directions".
My bigger concern is when or if things go awry for whatever reason and there can be many or none. If that should happen, that is when you will want the best...and one who can be reached. If this guy is the one who left town and was unavailable to patients....no way do you want to deal with him.
And your platelets....mine haven't been above 120 for years and they were about 85 when I started tx. If this doc is supposedly experienced in treating hcv I would think he would tell you 142 is really good going into this....he has to see a lot lower.
For your own peace of mind I hope you will decide to deal with the drive. You need a dr who really knows what to do when your labs start shifting around, someone who will attend to things immediately. Anxiety and so many unknowns play such a huge part in how easily you will go through this. It is as much mental as it is physical and it's a tx you will live with on a daily basis for a long ongoing time; not just a few weeks or months. Your peace of mind and sense of well being in rough times is highly dependent on your trust and confidence in your doctor.
When you need the doctor it is nice to know you can email him and get a response rather than have to talk to the office staff to find out how to reach the doc. I just have a feeling you need to go with Gish for the whole journey.
Best of luck and keep us posted!
I don't agree "tx is tx"....he may be referring to the meds and protocols, but how they are used, adjusted and how side effects are treated can be very different. We hear about all kinds of tweaking; it's the doctor's call/judgment and some have been known to over or under react, or to not be able to be proactive to prevent situations. Tx is different for everyone even if the drugs are the same.
This doctor seems a little flippant in his approach to tx'g HVC, like it's a no brainer if you simply follow "the directions".
My bigger concern is when or if things go awry for whatever reason and there can be many or none. If that should happen, that is when you will want the best...and one who can be reached. If this guy is the one who left town and was unavailable to patients....no way do you want to deal with him.
And your platelets....mine haven't been above 120 for years and they were about 85 when I started tx. If this doc is supposedly experienced in treating hcv I would think he would tell you 142 is really good going into this....he has to see a lot lower.
For your own peace of mind I hope you will decide to deal with the drive. You need a dr who really knows what to do when your labs start shifting around, someone who will attend to things immediately. Anxiety and so many unknowns play such a huge part in how easily you will go through this. It is as much mental as it is physical and it's a tx you will live with on a daily basis for a long ongoing time; not just a few weeks or months. Your peace of mind and sense of well being in rough times is highly dependent on your trust and confidence in your doctor.
When you need the doctor it is nice to know you can email him and get a response rather than have to talk to the office staff to find out how to reach the doc. I just have a feeling you need to go with Gish for the whole journey.
Best of luck and keep us posted!
The bx report says this...."Trichrome stain demonstrates periportal and bridging fibrosis (cirrhosis)." oops I put too many r's in there the first time - it has been a LONG DAY. Ha Right now I don't think I had a productive day at all except for seeing all the gorgeous young male nurses in the cafeteria. lol I want to work there except - gee, I am kinda sick so I'm told. And I doubt they're hiring esp. ppl 65 or older. I'll just go there for lunch a few days a week. I mean GORGEOUS YOUNG MEN. Ima Cougar at heart.
And I am more CORNfused than ever, so I will just be happy I'm alive, have a laptop, have a place to live and food to eat, wild rabbits that I feed and then watch and love to do so, have beautiful animals and can sleep at night. If anyone wants to take a shot at my insane labs and bx reports, have at it. Seriously, I DO appreciate all or your help. You made a helluva lot more sense to me than the GI did.
I wish Blue Man Group was still in Vegas....... or are they?
And I am more CORNfused than ever, so I will just be happy I'm alive, have a laptop, have a place to live and food to eat, wild rabbits that I feed and then watch and love to do so, have beautiful animals and can sleep at night. If anyone wants to take a shot at my insane labs and bx reports, have at it. Seriously, I DO appreciate all or your help. You made a helluva lot more sense to me than the GI did.
I wish Blue Man Group was still in Vegas....... or are they?
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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