And once again you have given me so much help. I will read and re-read your last post many times. I can't even take an anti-D because I'm BP II and they make me manic. I do take Klonopin which used to keep me smooth, but with all this going on and knowing more anxiety is to come, I will need some "quick fix" meds - Xanax. Psych. says she doesn't prescribe that... will not prescribe it. Okay fine, I am sure my Hep Dr. will just make a call to my pharmacy and order it.
Again, your post spoke to me so powerfully. This forum is going to be my lifeline, no doubt about that.
I don't think the pain is all that unusual; I had it before tx, but it's gone while on tx. A friend of mine who cleared six years ago still complains she has it, but a recent re-check confirms no HCV
Even if you weren't prone to anxiety before, you will be now. :) That's a big part of the mental battle that goes along with the physical battle of HCV tx (and I don't think the meds help with some of the mental stuff.) It's a double whammy in the anxiety arena.
When I hit the "OCD/Anxiety" bump in the road I quickly resolved it by taking faith in what I was told by our "experts" on this site; they were invaluable and ultimately correct. And second, I resigned myself to the fact that regardless of what my HCV journey entails, it is what it is, and it will not be the end of the world given my liver status and other options to help me continue on to SVR. So many on here have faced far less promising prognoses than ours (at least yours does not seem to sound like the worst), but have persevered, carried on and slayed the dragon.
I hope you can find that place in your mind that will allow you the patience to endure the "wait time" for the definitive and accurate word from Gish. Waiting on pins and needles for lab results will be an ongoing event as you go through tx so I hope you can find a way to comfortably get through it. Just know there are no guarantees for anyone who starts, disappointments are not uncommon, but at the same time so many have regrouped, gone to plan B, and succeeded.
Once I "got there" in my mind I was able to get back to my life and concentrate on other things. :)
Now that you have a good doctor you won't have to try to interpret what your reports "really mean"....you will have faith in what he/she tells you. You won't have to spend time second guessing everything, and that should help put your mind at ease.
Sorry to be so "preach-y", but concerns about one's mental well-being is as much a concern about one's physical well-being. In many ways only you have control over the mental part, and the first step in taking control of that is getting a doctor you trust, and thankfully you have done that! The second step is a long talk with yourself on how you are going to move away from worrying about the "what ifs" and unknowns. You have taken the best first step, and now it is "what will be, will be". Just know that if and when possible disappointments come, they will be resolved by you and your doctor.
It's not an easy road, and it is a rather long and slow moving one, but one way or another you are highly likely to beat this. (I just know you will!!)
FFH
Ah, you know how it is; laughing one minute; sobbing the next. Nothing's really changed there. I'm still in a state of not knowing from a doctor what is going on.
I've had the aching going on for 3 years, for one thing. It's been a constant source of not only discomfort but of stress - until the past year, it would sometimes be very sharp - like a ripping cramp. The past year, constant aching. No definitive answers. I know the liver feels no pain. I have no gall bladder. So it has to be the liver capsule. But that doesn't explain WHY. Also, hubby will not go to Vegas. Long story and I'm not happy about it but neighbors are going to take me. I can't drive that far and back. Panic disorder.
So - yeah, I GUESS things are better than the GI portrayed them but as the dust settles. But I'm still in the gray zone and very frustrated. The bottom line is that after undergoing a biopsy, which although aren't that bad but are not fun either, and getting a rather flaky report, and having a GI who quite obviously is either not on the same page I am or is just plain not able to read bx results or may just not competent to treat heppers, I'm still waiting for answers. Going on three months now since all this reared up as far as signs that hep was progressing and still really don't know for sure what is going on in my liver.
Between that and that constant ache - I'm sometimes just flattened out by the stress - and sometimes I am enraged because my local doctor should be able to answer questions, which he didn't, and just maybe the bx report was a bit sparse and confusing. No way will my healthcare providers pay for another biopsy so soon.
So - dear heart - this is one of those days when I just want to cry. I think Hector and can-do are right as far as their interpretation of the bx, but then I second guess myself and wonder if it's really that I WANT them to be right. ONLY a hepatologist will be able to give me answers. The shining light is that I will be seeing one on 7/11. But I would bet they will need the bx slides to make sense of everything since that report is just not clear or specific enough. They are going to need the slides, and they have to order them. I can't get them myself - I've tried.
Thanks for writing. I wish things were as good as I thought they were. Hub not going to Vegas is really upsetting. He's gonna have to go another time though. I'm sure the Gish dox are going to want a chat with the "caretaker". I just want to KNOW WHAT IS GOING ON IN MY LIVER - give me the FACTS. I can't take much more of not knowing for sure. Again, I trust Hector and can-do, but at the same time, as they will tell us any time, they are not doctors. And they told me what I wanted to hear. I don't trust MYSELF.
hey girl! sounds like a whiz bang day. It' so good to have all the wonderful people on this forum. It does sound like things are not as bad as they seem- although you were having that pain a few weeks ago, so maybe that scared you too?
i think just clear the skate and go to Gish and get the real mc-coy.
everyone is right about getting a good doc- the one i had for two rounds was not all that, either, so now i'm going to drive 100 miles to go to a research center with a real hepa doc. worth every mile.
glad the hub is going along and that your are sorta laughing by now.
rest, breathe, trust and hope. you will do great!
thanks. Nightmare on Elm Street it has been.
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
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. :)
copy
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
p.s. It's up there in my post to Hector an hour ago (as of now anyway)
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.
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
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?
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.
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.
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.
Hector, thanks for the clarification. Excellent news for cat.
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
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
;) ~ 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.