I think that my HMO(Kaiser-Permanante) is less concerned with providing information to the patient, than it is with keeping expenditures on procedures down. ....
Hi, Kaiser member here, Northern-California. I must be the exception then. I have been on an MS treatment for 16 years, at 5000 dollars a month, with a few other pre-existing conditions, you could estimate my monthly cost of care is close to 10K, a month. I'll be starting Epclusa soon, so add another 930 dollars a day for 12 weeks to that.
So let me say this. You need to advocate for yourself with Kaiser, they are a little slow on the uptake, but at least in Norcal, they will step up if you get in front of the right people.
Maybe contact Member Services or even change PCPs?
PM me if you like, I am an encyclopedia of Kaiser, at least for SF bay Area/Norcal
hrsetrdr said
May 6, 2017
hrsetrdr wrote:
Hi Canuck,
That is a really good question, but I don't recall if my doctor ever mentioned whether he did find, or was just "looking for" varices. Unfortunately, I've not had the presence of mind to ask.
I am still logged on to - website, while I'm thinking of it, I shall ask my doctor about the varices.
I did get a response from my gastro doc, funny- I've been reluctant to be 'too inquisitive' with this doctor, I guess because of his demeanor. But, perhaps I've just been reading him incorrectly.
His reply:
Gastro Doctor wrote:
No varices have been found so far. Varices, if present, tend to get larger in time. In that case two therapies are available, a medication to lower the pressure in the veins, or banding to put bands on the veins to cause them to clot off. We'll cross that bridge when we come to it.
Well, I am pleasantly surprised, all these years / all the endoscopies...I didn't think they would go to such efforts unless they had found something to look at.
hrsetrdr said
May 1, 2017
Canuck wrote:
Hi hrsetrdr,
Hey thanks for the update.
DOES sound good all in all!
So let me understand ... the purpose of your repeat endoscopies ... (aside from your doc wanting to keep an eye on your now-deemed innocuous gastric fatty thing) ... was just "to look for" esophageal varices, OR, were the endoscopies because "they did find" some esophageal varices? Didthey ever find ANY varices?
Hi Canuck,
That is a really good question, but I don't recall if my doctor ever mentioned whether he did find, or was just "looking for" varices. Unfortunately, I've not had the presence of mind to ask.
I am still logged on to - website, while I'm thinking of it, I shall ask my doctor about the varices.
hrsetrdr said
May 1, 2017
Tig56 wrote:
Hey Tim,
I would say you got some good news! Fibrosis regression, a gastric tumor resolved, routine ultrasounds are good, with our history we should welcome the chance to stay ahead of anything. The longer we maintain SVR, the stronger we become. I'm pleased to hear your excellent report. Come back when you get the U/S report.
I hope you're doing well. Keep bringing home the good news...
Hey Tig,
Thanks, yes good news for sure. I had labs done this past Saturday(routine annual check up); everything looking quite in the normal range, except my A1C was just at 5.7 percent, which might precipitate further investigation by my GP.
My ALT is looking like:
Your value: 44 U/L
Standard range: <=63 U/L
I just checked my messages on Kaiser's website, my gastro doc left me the following message:
"I am happy to report that your ultrasound results show no signs of cancer. Please call me if you have any further questions"
yeah, me too, I'm real happy to hear that!
Canuck said
May 1, 2017
Hi hrsetrdr,
Hey thanks for the update.
DOES sound good all in all!
So let me understand ... the purpose of your repeat endoscopies ... (aside from your doc wanting to keep an eye on your now-deemed innocuous gastric fatty thing) ... was just "to look for" esophageal varices, OR, were the endoscopies because "they did find" some esophageal varices? Didthey ever find ANY varices?
It's great you had the fibroscan and that it was only suggesting F2! Now, at least, you have that "number" to work from (to compare back to, over time) to help guage further indications of future lessenings in your liver firmness. I do hope your doc plans on repeating the fibroscans for you now, on a regular basis.
You might ask your doc what Fscores he had been "putting you at" (formerly), and by what "blood test methods" he used, to estimate his Fscore approximations in the past.
As I mentioned before, I am a little bothered when pt's are kept too much in the dark, with not enough feedback.
I for one, could not stand not knowing exactly what my CAT or U/S's showed (each one of them) over time, this too provides important clues and feedback.
I'm glad your doc (for the time being, is going to do the every-6 months U/S) as per the guidelines, the more info the better I feel. More info, more feedback, more reasurance over time is gleaned, when you have this info.
As for comparing "old to new" info, I would request my OWN copies of ALL the imagings I have ever had done, AND, the written radiology reports (the interpretations and impressions that goes with each set of imagings). I would want all my own records, old and new, for all my U'S's, to read and see (for myself) whether they had ever "noted" any telling things - spleen enlargement/acites, things like that, AND, to look for the improvements to date.
You have had maybe "about" 5 U/S's now, over time, lots of good info available, something worthy of a bit of study, being that you have been kept in the dark a bit. Just a thought.
I can go directly to the facility, where my U/S's are done (or a CAT for that matter), to the imaging dept where the imaging records are kept, and simply make a written request, to receive both - the written reports for, AND a CD of the images, for ANY U/S or CAT I have had done - and they will mail it directly to me in about a week or two.
It's nice you keep us posted. C.
Tig said
Apr 30, 2017
Hey Tim,
I would say you got some good news! Fibrosis regression, a gastric tumor resolved, routine ultrasounds are good, with our history we should welcome the chance to stay ahead of anything. The longer we maintain SVR, the stronger we become. I'm pleased to hear your excellent report. Come back when you get the U/S report.
I hope you're doing well. Keep bringing home the good news...
hrsetrdr said
Apr 30, 2017
Hi Jill, Thanks for the very informative links, after all these years, I got a better view of what fibrosis and cirrhosis are all about.
Hi Canuck, I've been getting the ultrasound scans annually, since EOT; was told basically that they are watching for signs of liver cancer.
And, even though the gastro doc started the endoscopies to check my esophageal varices, in recent times he was keeping an eye on a benign tumor in my stomach.
After my last endo the doctor proclaimed that the tumor was simply a 'fatty" type, and need no further scrutiny.
So, I did get a message from my gasto doctor, it reads:
Hi Mr. Thomas. Your Fibroscan was "F2" which is intermediate- not normal but not frankly cirrhosis. However, since there was cirrhosis suspected on your prior CT, we should continue to do ultrasounds every 6 months. This was the recommendation at the recent liver conference I attended. I will order an ultrasound for you.
Well, so now my liver condition has a characterization- 'F2". Not cirrhosis, not normal...the story of my life.
Last Thursday, I had that ultasound that the doctor mentioned in the message; the technician said the doctor would be contacting me once he reviews the results.
That would be something new, typically in the past, I never hear about the ultrasound findings.
Canuck said
Apr 8, 2017
Hey hrsetrdr,
I'm still giving your situ more thought. It it is bothering me that folk are not given every opportunity (by their docs) to be informed FULLY, in order for a pt. to be able to gauge their conditions and levels of fibrosis/cirrhosis as best as they possibly can (for themselves) by good dialog with your docs, good explanations from them and actual copies of the results of their testings being provided to their pts.
Docs SHOULD, but do not always realize just HOW much stress a pt. can go through when they are kept at all in the dark. Sometimes the docs have a real good educated guess at where we are at, even in the absence of some of the tests other people routinely get, yet they still do not fully convey their reasoning with their pts. as to why THEY are satisfied that they are gauging you fairly accurately.
Harbouring HCV is a fear-fraught condition (even today, with our brilliant arsenal of the new DAA's with their near-100% cures rates), and for those of us who have gone through failures, the fears and doubts are doubly daunting to get through and past, to say the least, and pts. learn enough to know the varying degrees of health risks that still might follow us even after cure. Perhaps some docs figure they are doing us a big favour with our limited layman understanding of medical things, to relieve us of extra burden so to speak, that they they will do any required worrying for us if need be, but it does not work that way! Docs should always go out of their way with HCV and SVR pts. to keep them fully apprised and ensure their pts. know the nuances of their conditions every step of the way!
Lack of info, can breed doubt and fear, which we are already primed for. In your case a lack of definitive Fstatus's to rely on, all along, and all this time. And your first hand experience with someone you know who had liver ca and required transplant, really primes you for this fear I think your docs coulda/shoulda kept you better informed. Not meaning to demean your particular docs, they may be very excellent indeed, I have no idea - they did get you cured! And, they are following you, 2 of the main important things! It does seem though that they they have been slower than most nowadays to finally make use of the fibroscan tool for one reason or another. But good you have at least been getting annual ultrasounds, and good they did the recent endoscopy.
I am the same as you, and did not want to be subjected to a biopsy, if I could possibly avoid it, I had to circumvent it in 2015, it was the first thing in order they wanted, had I stuck with the first docs I could have gone to, but I already knew about fibroscans and so sought out the right docs/dif. docs who were already routinely using fibroscans. Fibroscans are only a good part of all the tools they need to use to gauge you, but I think they play a very useful part! (As do your labs, endoscopic exams, CATs, MRI's and ultrasounds!) Together they form a better guessing picture.
So, you had no biopsy, I assume no CAT scans or MRI's prior to treatment, and, only ultrasounds during and after treatment? And the recent endoscopy ... was that your first and only? They MUST have compiled a "blood based" guess at your Fscore back then via a "Fibrosure/Fibro-Test, Apri, Acti-Test", or one of the many other F-gauging blood tests.
Do you have another appoinment booked to go back and see your doc again for the purpose of finding out the endoscopy, ultrasound and fibroscan results? If so, i would try to use the appointment opportunity to let him better convey to you the specific details of your past Fscores, how many times he scored you all along, and what tests he used to deduce those aprox. scores.
I would also ask the doc/recptionist/nurse for copies of your ALL your "reports" written by the radiologists or technicians as case may be (past and current) for your 4 or so ultrasounds, your endoscopy, your fibroscan results (and for any other imaging, if you had CATS, etc.)
I am sure with your own reports in your own hands at home you can share contents with good advisors like tig and get a better feel for whether you looked merely fibrotic (could well be!) versus cirrhotic, way back when, that, coupled with a good review with your doc about how and what Fscore catagory he put you in, previously, via the limited blood tests he did on you - might be enlightening and quite reassurring! This vague ...."something" ... is not acceptable info to be inferring anything from!
For my CAT, xrays or ultrasounds I have had, I can simply fill out a request form (at the hospital facility that performed the tests and who stores the info) and within a week or weeks they will mail me a CD for each test (all the images AND the radiologist report with it), as I have a right to my own tests and records. You might also have similar access to your imaging and report data this way, if your doc office will not supply what you ask for.
I think you need more info and will feel better for it. That's my thinking anway C.
Cinnamon Girl said
Apr 5, 2017
hrsetrdr wrote:
Hi Jill! Good to see you here! I hope all is well with you, I see that your garden is producing some magnificent flora!
This morning I did get the Fibroscan done, it took all of 5 minutes. The technician said I should here from my gastro doc in a couple days. She said that the scan should be able to distinguish between any fibrosis and cirrhotic type masses. What is the difference between the two? Malcolm would be able to give a scholarly explanation. ;) I never really followed or seriously attempted to understand the various "stages" of cirrhosis, probably because my health care providers never put a 'label' on my condition. Maybe now that will happen.
Jill said:
Best of luck today, do keep in touch!!
Thank you, and may you as well.
Hi again Tim!
I know what you mean, I never had a biopsy either, it wasn`t considered necessary for me at the time, although I often wish I`d had it done.
Here are a couple of links to articles which explain the progression through fibrosis to cirrhosis....
I`m not around here much these days, but I`ll look out for your next post!
hrsetrdr said
Apr 4, 2017
Hi Jill! Good to see you here! I hope all is well with you, I see that your garden is producing some magnificent flora!
This morning I did get the Fibroscan done, it took all of 5 minutes. The technician said I should here from my gastro doc in a couple days. She said that the scan should be able to distinguish between any fibrosis and cirrhotic type masses. What is the difference between the two? Malcolm would be able to give a scholarly explanation. ;) I never really followed or seriously attempted to understand the various "stages" of cirrhosis, probably because my health care providers never put a 'label' on my condition. Maybe now that will happen.
Jill said:
Best of luck today, do keep in touch!!
Thank you, and may you as well.
Cinnamon Girl said
Apr 4, 2017
Hi there, Tim!!!
I`m so glad I saw your post, it`s good to hear from you again!
Great that you`re getting a fibroscan at last, as the years go by it`s natural for us to be slightly worried about the current state of our livers, post SVR.
I can really understand what you`re saying about going back into retirement now. Employment brings many benefits... as well as getting paid of course! But if the stress of the hours and the work is having a detrimental effect on your health that`s a different matter. One major thing we`ve all learned is that our health comes first, and we need to do what we can to take care of ourselves.
Best of luck today, do keep in touch!!
hrsetrdr said
Apr 3, 2017
Hi all! It's good to be here, in the company of such warm and caring people.
Canuck wrote:
You must have had biopsy(s) and the "blood methods" to give you Fscores in the past - what were your some of your old(er) determinations?
My HMO(Kaiser Permanente) never did any biopsies, my gastro told me that any benefit derived from the procedure[in my case] would not outweigh the risks. As a confirmed 'chicken' when it comes to needles, I can say that I wasn't too disappointed.
I remember when Malcolm got his fibroscan, I think that was the first I had heard of the procedure. It took Kaiser Permanente a long time to acquire the equipment, and hire the necessary technicians and such.
Canuck wrote:
How have things been going for you otherwise, I scrolled down a bit - how are your eyes now?
Nice you post, feedback from long cured folk is such a good thing!
Thanks so much, Canuck My right optic nerve was damaged by the interferon, I had to quit TX after shot #16. Fortunately, I attained SVR. The optic nerve damage didn't materially reduce my eyesight, just would occasionally see some weird 'artifacts'. Still do, will see a wispy white smoke in my right eye vision; in low light I'll see kind of dark paisley shapes. Hasn't changed, not gotten much better, but not worse.
Hi wendyo! Thanks for the .
Hey Tig! Great to see you, and I presume that you're doing well.
..about working: I've been on the job 2 years now, and I do enjoy the people and the work. And, I really like working a 4-10 schedule, with 3 days off. But, between 10(12+) hour days and long commute, I'm thinking about going back into retirement. I'll be 65 in June, my wife retired last September.
I've gained weight, likely due to increased stress(working in a prison), and not having the time to workout, like I used to. I really really want to get my BMI back down, below 29, like my gastro advises. The "big C"(as in HCV) scares me, for real. My Brother in-law had a liver transplant due to cancer, so anything I can do to dodge that bullet would be a plus.
As soon as I hear more, I'll bring it back here.
Tig said
Apr 3, 2017
How are you my friend? It's always nice to hear from you! Back when I was just a Pup around here, Tim was one of our Moderators. Then he got cured and got the urge to go back to work. That should tell you youngsters () how much energy is returned post treatment! Now Tim may think I'm nuts, but I remain impressed by his determination just the same!!
I'll be looking forward to your report, Tim. Good luck buddy!
wendyo said
Apr 3, 2017
Good luck tomorrow Tim.
Canuck said
Apr 3, 2017
Hey hrsetrdr,
Nice to see a post from you again!
Along with your good news that you will be getting your (first!) fibroscan?
Nice.
Quite a few of us "new ones" around here, seem to be getting them now, with some increasing regularity, as baseline and then for following (among the other usuals, like U/S's or whatever other imaging/bloods they decide!). The "new fangled" thing has finally managed to gain some popularity in use these last years!
Personally, I am partial to the use of fibroscans, as an important member of the toolkit (limited but valuable additional info I think), along with everything else, to help guage and guess at things.
Especially nice (and easy) feedback, ("numbers") to follow, when you have had them pre and post, and then continue repeating them after that for "perspective".
I hope you can keep getting more of them in the future. I really don't know why some docs are still reluctant to do them pre and post, must be a money thing, or a "value" thing of one sort or another - given some docs may not lend them as much credence as another doc does, or for various reasons they view other imaging/testing/biopsying having more bang for the buck, but in my book I figure they are a really good helpful bit of info to add, right along with ALL the other testing they should be offering to us going forward. The more (the more wholistic) the better I think. We are seeing a trend I think in fibroscan superceeding biopsying, in some cases.
I think it is a good thing that fibroscans have (slowly) come more readily available to us now. More machines around now, more access, more acceptance of their place and value. I only hope fibroscan use is not being relied on, driven soley by costs savings, over more telling all-inclusive multi-method combined assessments. I would definitely want my fibroscans, right along with all of the rest of the guessing tools being offered to me.
You must have had biopsy(s) and the "blood methods" to give you Fscores in the past - what were your some of your old(er) determinations?
Hope your fibroscan comes back with a good Fscore. May your kPa's be low! Good luck. Happy you will get one under your belt!
Let us know eh?
How have things been going for you otherwise, I scrolled down a bit - how are your eyes now?
Nice you post, feedback from long cured folk is such a good thing! C.
hrsetrdr said
Apr 2, 2017
Well, this has been a long-time-coming, this Tuesday(April 4th) my gastro doc has me set up for a fibroscan. He mentioned it a couple weeks ago, after doing a follow-up endoscopy.
4 1/2 years post treatment, and they want to know more about my liver. My too! The ultrasound scans they've been doing every year have indicated "something", but nothing conclusive enough to say that there is....some degree of scarring, or cirrhosis. I've not thought a whole lot about the mystery, just hoping they never find cancer, which I had been told as the reason for the continued monitoring.
This is interesting, I shall be wanting to know.....more about my liver's condition.
Judy S said
Dec 2, 2012
Hi Tim! Yeah, you're closer to Fontana and I'm a bit closer to P.C.; about an hour away. Believe me, I'm plenty nervous about the upcoming biopsy. Had a bad experience with one in 2000; bad referred shoulder pain. And of course watching the full video of a liver biopsy on youtube didn't help. Couldn't sleep well that night.
I'm hoping your next eye exam shows improvement. Also that the future interferon-free tx will not affect the eyes. I went back to the Opth Dept in Kaiser Lancaster and my vision had worsened a bit after tx. I also don't expect a full muscle recovery after the PegIntron; it did the most damage there, for me. Just hope it improved our livers for the time we were on tx.
hrsetrdr said
Dec 2, 2012
Judy, The word "biopsy" makes my hair stand on the back of my neck; best of luck and hoping for no complications. Panorama City, looks to be about 10 miles further than it is for my trips to Kaiser-Fontana.
Not much going on with my 'case', just waiting to do labs in March. I go on the 18th to OPTH in Fontana to have re-exam of my rt. optic nerve, which incurred some swelling due to the Pegasys. Vision has improved 'somewhat', but honestly I don't expect a full recovery to pre-TX ability.
Judy S said
Dec 2, 2012
I live in Southern California, only about 15 - 20 minutes away from Tim and I also have Kaiser. I know exactly what you mean about running out the door to next appt; I always go to my dr with printouts of new info I have acquired. Since I brought it up with him last week, he ordered another biopsy for me. I'm getting it on Tuesday, Dec 4. (At the Panorama City Kaiser Hospital, Tim.) I haven't had a bx since 2000.
hrsetrdr said
Nov 17, 2012
Hi Meghan, I know what you're saying- "don't let them run out the door to their next appointment...." that's just what they do! I've always been the less-than demanding type, but here in my latter years(but, 60 IS the new 40!) I have gotten more aggressive. I had an appt just last week, had my "cheat sheet" list of concerns, and got them all addressed, to my satisfaction. After I was done, you should have seen him zoom out the door!
LanaiSurferGirl said
Nov 17, 2012
Hey Tim...I am just south of you in SD and know Kaiser!! I hate HMO's and I have to say that Kaiser has stepped up their game and I am impressed with their innovation in recent years. However, be the most convinceing patient you can when you see your doctor and don't let them run out the door to their next appointment without answering your questions. I learned from my dad to go in with a prepared list of questions and write the answers down as the doc talks so you can reference it later. As Tim said, radiology alone cannot be a detector of your liver status. The physician relys on their "toolbox" of radiology, CT scans, blood tests, biopsys, fibroscans, endoscopys, palpation, and patient history. Make sure you copy all of your medical records and keep them for yourself. Whenever I get image work done I ask for a copy, same with all blood tests and medical history so I can keep track myself.
The sad thing with HMO plans is yes...they keep their costs down so you have to watch out for yourself. Sometimes they will not recommend a test that you should have done. If your gut is telling you that you should have something done than bring it up and demand an answer. I know you do your own research because I see you on here so much and with all of your records you can look out for yourself too. :)
good luck,
Meghan
hrsetrdr said
Nov 17, 2012
mallani wrote:
Hi Tim, sorry I keep forgetting about HMO's. There's a real foreign concept for us, and I obviously couldn't cope. Glad to hear you're on the mend. Just for interest, if you wanted a post Rx 12 week VL, could you get one, and pay out of pocket? Cheers
I had thought about that, even thought of going to the county health dept. and requesting a lab. Even though I am of course curious about the VL situation I really can't do anything in the way of further treatment for 2 or 3 or...ever how many years before a non-interferon regimen comes along.
mallani said
Nov 16, 2012
Hi Tim, sorry I keep forgetting about HMO's. There's a real foreign concept for us, and I obviously couldn't cope. Glad to hear you're on the mend. Just for interest, if you wanted a post Rx 12 week VL, could you get one, and pay out of pocket? Cheers
hrsetrdr said
Nov 16, 2012
I think that my HMO(Kaiser-Permanante) is less concerned with providing information to the patient, than it is with keeping expenditures on procedures down. Indeed, there is dialogue amongst providers and politicians in the U.S. about the cost of healthcare, and questioning the necessity of many procedures. My gasto doc said that the biannual ultrasounds are just to watch for cancer, but it appears that the NP that supervised my treatment is still looking to better define the state of my liver. I doubt that Kaiser will do a biopsy unless my liver takes a turn for the worse; I don't believe that fibroscans are done in the U.S. at this time.
I have to wait until March for the 6 mo. VL; I was anxious over having to wait, but lately I am kind of glad to not be so focused on the whole HCV world, as I was when on tx. March will get here soon enough, in the mean time I'll enjoy the break and be happily ignorant and just relish doing stuff like living-my-life. ;) If the news is bad, I'll just begin another [longer] wait for the next latest & greatest treatment to become available.
BTW, I do feel normal enough to consider coming out of retirement and getting a job. I have a written test with the county next Tuesday; there is also a possibility that my old employer will take me back as a part-timer.
...fingers are crossed.
mallani said
Nov 16, 2012
Hi guys, there are indeed 'soft ' markers for cirrhosis on Ultrasound , CT and MR. I could list a dozen of them. If they are present, the report should read '.... if there is clinical suspicion of cirrhosis, followup with liver biopsy is recommended..'. Terms like 'early cirrhosis', 'mild cirrhosis', 'beginning of cirrhosis' should not be used by an experienced Radiologist. This is assuming the examination is done by an competent Ultrasonographer on an up-to-date machine ( same for CT and MR). Obviously, in advanced cirrhosis with decompensation , the shrunken, nodular liver with ascites, enlarged spleen and portal vein is a different matter. Such patients are not candidates for Rx. There is an endless list of formulae to calculate cirrhosis, mostly using biochemical data. None have gained wide acceptance. Fibroscan is accepted as being almost as reliable as biopsy- there is some overlap between the F2's and F3's . I'm surprised it is hard to find in the USA- perhaps the fact that it was developed in Europe plays a part.
I have had cirrhosis ( by Fibroscan) for at least 5 years, but have had a completely normal Ultrasound and MR since 1990. I have also calculated my cirrhosis score using the many formulae available- according to these, I do not have cirrhosis, so naturally I do not trust them.
For all the Clinical Trials, you must have a recent Liver Biopsy to be accepted. This says it all!
joe oil said
Nov 16, 2012
I had a biopsy and was determined to be stage 2 fib. 4 mos. later before starting tripple tx, had a ultra sound and was determined to be cir. Don't realy know what to think. Been und week 4, 8, 12, 16... thats all that matters now.
Biggyb said
Nov 16, 2012
I am going to ask my doc about a Fibroscan too.
2willy said
Nov 15, 2012
I respect the medical profession mostly but altra sound route is one of the reasons they never detected Hep C for so long, " you have a fatty liver, you have some scarring, but doesn't everyone" Yes right up until I had the second Biopsey 0-4 scale 4 cirrus I was 3.8 no major symptoms, I am going to get what they call a Fiber scan if treat ment does not work or if I have to come off, told this is ten times more accurate and will tell you where your liver is at and if and what can be done.
Biggyb said
Nov 15, 2012
I was told i had the start of cirrhosis from mri and ultrasound. Something they call markers on your liver.I did have biopsy in 1999.It was good back then.
hrsetrdr said
Nov 15, 2012
Today a nurse called on behalf of the NP that is handling my Hep C case; she reports that the recent ultrasound showed no change, just some suspected "mild cirrhosis". I pressed her to define "mild cirrhosis" in real medical terms,asking her if that was like stage 1 cirrhosis or something, and she said no, not even that severe. I don't know whether to be relieved or not; when I asked my NP about the status of my liver a few months back she said it was her belief that there was just inflammation. It appears that they are either being vague on purpose, in case of litigation, or they really don't know precisely the state of my liver. I suppose in the long run that it doesn't matter much having an accurate picture of my condition, but I do envy those of you that are allowed access to your own medical data, so that you are "in the loop", as they say.
mallani said
Nov 15, 2012
Hi Tim, I hate to say it, but you're a classic example of why people need an accurate fibrosis assessment before starting Rx. You've had HCV for 'decades' and an ultrasound in Jan 2011 showed 'some evidence of cirrhosis', whatever that means. You still have no idea whether you are F2, F3 or F4. Regarding your recent U/S, there is no such thing as mild, or Stage1 cirrhosis. Saying there is 'some inflammation' is also rubbish without a biopsy. While you're waiting for your next VL, it might be a good idea to get a full liver assessment. That includes the full range of liver tests, including INR- Prothrombin time, albumin, together with a Fibroscan. I would have a biopsy, but in a previous post, you did not seem keen on that. Working out a Child-Pugh score would be useful. If you remain Undet. ( as we all hope), this information will help with followup. I know it's not your fault but it just reinforces the need for Fibrosis staging. End of lecture.................................Cheers
-- Edited by mallani on Thursday 15th of November 2012 02:09:52 PM
I did get a response from my gastro doc, funny- I've been reluctant to be 'too inquisitive' with this doctor, I guess because of his demeanor. But, perhaps I've just been reading him incorrectly.
His reply:
Hi Canuck,
That is a really good question, but I don't recall if my doctor ever mentioned whether he did find, or was just "looking for" varices. Unfortunately, I've not had the presence of mind to ask.
I am still logged on to - website, while I'm thinking of it, I shall ask my doctor about the varices.
Hey Tig,
Thanks, yes good news for sure. I had labs done this past Saturday(routine annual check up); everything looking quite in the normal range, except my A1C was just at 5.7 percent, which might precipitate further investigation by my GP.
My ALT is looking like:
Your value: 44 U/L
Standard range: <=63 U/L
I just checked my messages on Kaiser's website, my gastro doc left me the following message:
"I am happy to report that your ultrasound results show no signs of cancer. Please call me if you have any further questions"
yeah, me too, I'm real happy to hear that!
Hi hrsetrdr,
Hey thanks for the update.
DOES sound good all in all!
So let me understand ... the purpose of your repeat endoscopies ... (aside from your doc wanting to keep an eye on your now-deemed innocuous gastric fatty thing) ... was just "to look for" esophageal varices, OR, were the endoscopies because "they did find" some esophageal varices? Did they ever find ANY varices?
It's great you had the fibroscan and that it was only suggesting F2! Now, at least, you have that "number" to work from (to compare back to, over time) to help guage further indications of future lessenings in your liver firmness. I do hope your doc plans on repeating the fibroscans for you now, on a regular basis.
You might ask your doc what Fscores he had been "putting you at" (formerly), and by what "blood test methods" he used, to estimate his Fscore approximations in the past.
As I mentioned before, I am a little bothered when pt's are kept too much in the dark, with not enough feedback.
I for one, could not stand not knowing exactly what my CAT or U/S's showed (each one of them) over time, this too provides important clues and feedback.
I'm glad your doc (for the time being, is going to do the every-6 months U/S) as per the guidelines, the more info the better I feel. More info, more feedback, more reasurance over time is gleaned, when you have this info.
As for comparing "old to new" info, I would request my OWN copies of ALL the imagings I have ever had done, AND, the written radiology reports (the interpretations and impressions that goes with each set of imagings). I would want all my own records, old and new, for all my U'S's, to read and see (for myself) whether they had ever "noted" any telling things - spleen enlargement/acites, things like that, AND, to look for the improvements to date.
You have had maybe "about" 5 U/S's now, over time, lots of good info available, something worthy of a bit of study, being that you have been kept in the dark a bit. Just a thought.
I can go directly to the facility, where my U/S's are done (or a CAT for that matter), to the imaging dept where the imaging records are kept, and simply make a written request, to receive both - the written reports for, AND a CD of the images, for ANY U/S or CAT I have had done - and they will mail it directly to me in about a week or two.
It's nice you keep us posted.
C.
Hey Tim,
I would say you got some good news! Fibrosis regression, a gastric tumor resolved, routine ultrasounds are good, with our history we should welcome the chance to stay ahead of anything. The longer we maintain SVR, the stronger we become. I'm pleased to hear your excellent report. Come back when you get the U/S report.
I hope you're doing well. Keep bringing home the good news...
Hi Jill, Thanks for the very informative links, after all these years, I got a better view of what fibrosis and cirrhosis are all about.
Hi Canuck, I've been getting the ultrasound scans annually, since EOT; was told basically that they are watching for signs of liver cancer.
And, even though the gastro doc started the endoscopies to check my esophageal varices, in recent times he was keeping an eye on a benign tumor in my stomach.
After my last endo the doctor proclaimed that the tumor was simply a 'fatty" type, and need no further scrutiny.
So, I did get a message from my gasto doctor, it reads:
Well, so now my liver condition has a characterization- 'F2". Not cirrhosis, not normal...the story of my life.
Last Thursday, I had that ultasound that the doctor mentioned in the message; the technician said the doctor would be contacting me once he reviews the results.
That would be something new, typically in the past, I never hear about the ultrasound findings.
Hey hrsetrdr,
I'm still giving your situ more thought. It it is bothering me that folk are not given every opportunity (by their docs) to be informed FULLY, in order for a pt. to be able to gauge their conditions and levels of fibrosis/cirrhosis as best as they possibly can (for themselves) by good dialog with your docs, good explanations from them and actual copies of the results of their testings being provided to their pts.
Docs SHOULD, but do not always realize just HOW much stress a pt. can go through when they are kept at all in the dark. Sometimes the docs have a real good educated guess at where we are at, even in the absence of some of the tests other people routinely get, yet they still do not fully convey their reasoning with their pts. as to why THEY are satisfied that they are gauging you fairly accurately.
Harbouring HCV is a fear-fraught condition (even today, with our brilliant arsenal of the new DAA's with their near-100% cures rates), and for those of us who have gone through failures, the fears and doubts are doubly daunting to get through and past, to say the least, and pts. learn enough to know the varying degrees of health risks that still might follow us even after cure. Perhaps some docs figure they are doing us a big favour with our limited layman understanding of medical things, to relieve us of extra burden so to speak, that they they will do any required worrying for us if need be, but it does not work that way! Docs should always go out of their way with HCV and SVR pts. to keep them fully apprised and ensure their pts. know the nuances of their conditions every step of the way!
Lack of info, can breed doubt and fear, which we are already primed for. In your case a lack of definitive Fstatus's to rely on, all along, and all this time. And your first hand experience with someone you know who had liver ca and required transplant, really primes you for this fear I think your docs coulda/shoulda kept you better informed. Not meaning to demean your particular docs, they may be very excellent indeed, I have no idea - they did get you cured! And, they are following you, 2 of the main important things! It does seem though that they they have been slower than most nowadays to finally make use of the fibroscan tool for one reason or another. But good you have at least been getting annual ultrasounds, and good they did the recent endoscopy.
I am the same as you, and did not want to be subjected to a biopsy, if I could possibly avoid it, I had to circumvent it in 2015, it was the first thing in order they wanted, had I stuck with the first docs I could have gone to, but I already knew about fibroscans and so sought out the right docs/dif. docs who were already routinely using fibroscans. Fibroscans are only a good part of all the tools they need to use to gauge you, but I think they play a very useful part! (As do your labs, endoscopic exams, CATs, MRI's and ultrasounds!) Together they form a better guessing picture.
So, you had no biopsy, I assume no CAT scans or MRI's prior to treatment, and, only ultrasounds during and after treatment? And the recent endoscopy ... was that your first and only? They MUST have compiled a "blood based" guess at your Fscore back then via a "Fibrosure/Fibro-Test, Apri, Acti-Test", or one of the many other F-gauging blood tests.
Do you have another appoinment booked to go back and see your doc again for the purpose of finding out the endoscopy, ultrasound and fibroscan results? If so, i would try to use the appointment opportunity to let him better convey to you the specific details of your past Fscores, how many times he scored you all along, and what tests he used to deduce those aprox. scores.
I would also ask the doc/recptionist/nurse for copies of your ALL your "reports" written by the radiologists or technicians as case may be (past and current) for your 4 or so ultrasounds, your endoscopy, your fibroscan results (and for any other imaging, if you had CATS, etc.)
I am sure with your own reports in your own hands at home you can share contents with good advisors like tig and get a better feel for whether you looked merely fibrotic (could well be!) versus cirrhotic, way back when, that, coupled with a good review with your doc about how and what Fscore catagory he put you in, previously, via the limited blood tests he did on you - might be enlightening and quite reassurring! This vague ...."something" ... is not acceptable info to be inferring anything from!
For my CAT, xrays or ultrasounds I have had, I can simply fill out a request form (at the hospital facility that performed the tests and who stores the info) and within a week or weeks they will mail me a CD for each test (all the images AND the radiologist report with it), as I have a right to my own tests and records. You might also have similar access to your imaging and report data this way, if your doc office will not supply what you ask for.
I think you need more info and will feel better for it. That's my thinking anway
C.
Hi again Tim!
I know what you mean, I never had a biopsy either, it wasn`t considered necessary for me at the time, although I often wish I`d had it done.
Here are a couple of links to articles which explain the progression through fibrosis to cirrhosis....
https://www.hepatitis.va.gov/patient/basics/fibrosis-cirrhosis.asp
http://hcvadvocate.org/hepatitis/factsheets_pdf/Disprogess_over.pdf
I`m not around here much these days, but I`ll look out for your next post!
Hi Jill! Good to see you here! I hope all is well with you, I see that your garden is producing some magnificent flora!
This morning I did get the Fibroscan done, it took all of 5 minutes. The technician said I should here from my gastro doc in a couple days. She said that the scan should be able to distinguish between any fibrosis and cirrhotic type masses. What is the difference between the two? Malcolm would be able to give a scholarly explanation. ;) I never really followed or seriously attempted to understand the various "stages" of cirrhosis, probably because my health care providers never put a 'label' on my condition. Maybe now that will happen.
Jill said:
Thank you, and may you as well.
Hi there, Tim!!!
I`m so glad I saw your post, it`s good to hear from you again!
Great that you`re getting a fibroscan at last, as the years go by it`s natural for us to be slightly worried about the current state of our livers, post SVR.
I can really understand what you`re saying about going back into retirement now. Employment brings many benefits... as well as getting paid of course! But if the stress of the hours and the work is having a detrimental effect on your health that`s a different matter. One major thing we`ve all learned is that our health comes first, and we need to do what we can to take care of ourselves.
Best of luck today, do keep in touch!!
My HMO(Kaiser Permanente) never did any biopsies, my gastro told me that any benefit derived from the procedure[in my case] would not outweigh the risks. As a confirmed 'chicken' when it comes to needles, I can say that I wasn't too disappointed.
I remember when Malcolm got his fibroscan, I think that was the first I had heard of the procedure. It took Kaiser Permanente a long time to acquire the equipment, and hire the necessary technicians and such.
Canuck wrote:
Nice you post, feedback from long cured folk is such a good thing!
Thanks so much, Canuck
My right optic nerve was damaged by the interferon, I had to quit TX after shot #16. Fortunately, I attained SVR. The optic nerve damage didn't materially reduce my eyesight, just would occasionally see some weird 'artifacts'. Still do, will see a wispy white smoke in my right eye vision; in low light I'll see kind of dark paisley shapes. Hasn't changed, not gotten much better, but not worse.
Hi wendyo! Thanks for the .
Hey Tig! Great to see you, and I presume that you're doing well.
..about working: I've been on the job 2 years now, and I do enjoy the people and the work. And, I really like working a 4-10 schedule, with 3 days off. But, between 10(12+) hour days and long commute, I'm thinking about going back into retirement. I'll be 65 in June, my wife retired last September.
I've gained weight, likely due to increased stress(working in a prison), and not having the time to workout, like I used to. I really really want to get my BMI back down, below 29, like my gastro advises. The "big C"(as in HCV) scares me, for real. My Brother in-law had a liver transplant due to cancer, so anything I can do to dodge that bullet would be a plus.
As soon as I hear more, I'll bring it back here.
How are you my friend? It's always nice to hear from you! Back when I was just a Pup around here, Tim was one of our Moderators. Then he got cured and got the urge to go back to work. That should tell you youngsters (
) how much energy is returned post treatment! Now Tim may think I'm nuts, but I remain impressed by his determination just the same!!
I'll be looking forward to your report, Tim. Good luck buddy!
Good luck tomorrow Tim.
Hey hrsetrdr,
Nice to see a post from you again!
Along with your good news that you will be getting your (first!) fibroscan?
Nice.
Quite a few of us "new ones" around here, seem to be getting them now, with some increasing regularity, as baseline and then for following (among the other usuals, like U/S's or whatever other imaging/bloods they decide!). The "new fangled" thing has finally managed to gain some popularity in use these last years!
Personally, I am partial to the use of fibroscans, as an important member of the toolkit (limited but valuable additional info I think), along with everything else, to help guage and guess at things.
Especially nice (and easy) feedback, ("numbers") to follow, when you have had them pre and post, and then continue repeating them after that for "perspective".
I hope you can keep getting more of them in the future. I really don't know why some docs are still reluctant to do them pre and post, must be a money thing, or a "value" thing of one sort or another - given some docs may not lend them as much credence as another doc does, or for various reasons they view other imaging/testing/biopsying having more bang for the buck, but in my book I figure they are a really good helpful bit of info to add, right along with ALL the other testing they should be offering to us going forward. The more (the more wholistic) the better I think. We are seeing a trend I think in fibroscan superceeding biopsying, in some cases.
I think it is a good thing that fibroscans have (slowly) come more readily available to us now. More machines around now, more access, more acceptance of their place and value. I only hope fibroscan use is not being relied on, driven soley by costs savings, over more telling all-inclusive multi-method combined assessments. I would definitely want my fibroscans, right along with all of the rest of the guessing tools being offered to me.
You must have had biopsy(s) and the "blood methods" to give you Fscores in the past - what were your some of your old(er) determinations?
Hope your fibroscan comes back with a good Fscore. May your kPa's be low! Good luck. Happy you will get one under your belt!
Let us know eh?
How have things been going for you otherwise, I scrolled down a bit - how are your eyes now?
Nice you post, feedback from long cured folk is such a good thing!
C.
Well, this has been a long-time-coming, this Tuesday(April 4th) my gastro doc has me set up for a fibroscan. He mentioned it a couple weeks ago, after doing a follow-up endoscopy.
4 1/2 years post treatment, and they want to know more about my liver. My too! The ultrasound scans they've been doing every year have indicated "something", but nothing conclusive enough to say that there is....some degree of scarring, or cirrhosis. I've not thought a whole lot about the mystery, just hoping they never find cancer, which I had been told as the reason for the continued monitoring.
This is interesting, I shall be wanting to know.....more about my liver's condition.
Hi Tim! Yeah, you're closer to Fontana and I'm a bit closer to P.C.; about an hour away. Believe me, I'm plenty nervous about the upcoming biopsy. Had a bad experience with one in 2000; bad referred shoulder pain. And of course watching the full video of a liver biopsy on youtube didn't help. Couldn't sleep well that night.
I'm hoping your next eye exam shows improvement. Also that the future interferon-free tx will not affect the eyes. I went back to the Opth Dept in Kaiser Lancaster and my vision had worsened a bit after tx. I also don't expect a full muscle recovery after the PegIntron; it did the most damage there, for me. Just hope it improved our livers for the time we were on tx.
Judy, The word "biopsy" makes my hair stand on the back of my neck; best of luck and hoping for no complications. Panorama City, looks to be about 10 miles further than it is for my trips to Kaiser-Fontana.
Not much going on with my 'case', just waiting to do labs in March. I go on the 18th to OPTH in Fontana to have re-exam of my rt. optic nerve, which incurred some swelling due to the Pegasys. Vision has improved 'somewhat', but honestly I don't expect a full recovery to pre-TX ability.
I live in Southern California, only about 15 - 20 minutes away from Tim and I also have Kaiser. I know exactly what you mean about running out the door to next appt; I always go to my dr with printouts of new info I have acquired. Since I brought it up with him last week, he ordered another biopsy for me. I'm getting it on Tuesday, Dec 4. (At the Panorama City Kaiser Hospital, Tim.) I haven't had a bx since 2000.
Hi Meghan, I know what you're saying- "don't let them run out the door to their next appointment...." that's just what they do! I've always been the less-than demanding type, but here in my latter years(but, 60 IS the new 40!) I have gotten more aggressive. I had an appt just last week, had my "cheat sheet" list of concerns, and got them all addressed, to my satisfaction. After I was done, you should have seen him zoom out the door!
Hey Tim...I am just south of you in SD and know Kaiser!! I hate HMO's and I have to say that Kaiser has stepped up their game and I am impressed with their innovation in recent years. However, be the most convinceing patient you can when you see your doctor and don't let them run out the door to their next appointment without answering your questions. I learned from my dad to go in with a prepared list of questions and write the answers down as the doc talks so you can reference it later. As Tim said, radiology alone cannot be a detector of your liver status. The physician relys on their "toolbox" of radiology, CT scans, blood tests, biopsys, fibroscans, endoscopys, palpation, and patient history. Make sure you copy all of your medical records and keep them for yourself. Whenever I get image work done I ask for a copy, same with all blood tests and medical history so I can keep track myself.
The sad thing with HMO plans is yes...they keep their costs down so you have to watch out for yourself. Sometimes they will not recommend a test that you should have done. If your gut is telling you that you should have something done than bring it up and demand an answer. I know you do your own research because I see you on here so much and with all of your records you can look out for yourself too. :)
good luck,
Meghan
I had thought about that, even thought of going to the county health dept. and requesting a lab. Even though I am of course curious about the VL situation I really can't do anything in the way of further treatment for 2 or 3 or...ever how many years before a non-interferon regimen comes along.
Hi Tim, sorry I keep forgetting about HMO's. There's a real foreign concept for us, and I obviously couldn't cope. Glad to hear you're on the mend. Just for interest, if you wanted a post Rx 12 week VL, could you get one, and pay out of pocket? Cheers
I think that my HMO(Kaiser-Permanante) is less concerned with providing information to the patient, than it is with keeping expenditures on procedures down. Indeed, there is dialogue amongst providers and politicians in the U.S. about the cost of healthcare, and questioning the necessity of many procedures. My gasto doc said that the biannual ultrasounds are just to watch for cancer, but it appears that the NP that supervised my treatment is still looking to better define the state of my liver. I doubt that Kaiser will do a biopsy unless my liver takes a turn for the worse; I don't believe that fibroscans are done in the U.S. at this time.
I have to wait until March for the 6 mo. VL; I was anxious over having to wait, but lately I am kind of glad to not be so focused on the whole HCV world, as I was when on tx. March will get here soon enough, in the mean time I'll enjoy the break and be happily ignorant and just relish doing stuff like living-my-life. ;) If the news is bad, I'll just begin another [longer] wait for the next latest & greatest treatment to become available.
BTW, I do feel normal enough to consider coming out of retirement and getting a job. I have a written test with the county next Tuesday; there is also a possibility that my old employer will take me back as a part-timer.
...fingers are crossed.
Hi guys, there are indeed 'soft ' markers for cirrhosis on Ultrasound , CT and MR. I could list a dozen of them. If they are present, the report should read '.... if there is clinical suspicion of cirrhosis, followup with liver biopsy is recommended..'. Terms like 'early cirrhosis', 'mild cirrhosis', 'beginning of cirrhosis' should not be used by an experienced Radiologist. This is assuming the examination is done by an competent Ultrasonographer on an up-to-date machine ( same for CT and MR). Obviously, in advanced cirrhosis with decompensation , the shrunken, nodular liver with ascites, enlarged spleen and portal vein is a different matter. Such patients are not candidates for Rx. There is an endless list of formulae to calculate cirrhosis, mostly using biochemical data. None have gained wide acceptance. Fibroscan is accepted as being almost as reliable as biopsy- there is some overlap between the F2's and F3's . I'm surprised it is hard to find in the USA- perhaps the fact that it was developed in Europe plays a part.
I have had cirrhosis ( by Fibroscan) for at least 5 years, but have had a completely normal Ultrasound and MR since 1990. I have also calculated my cirrhosis score using the many formulae available- according to these, I do not have cirrhosis, so naturally I do not trust them.
For all the Clinical Trials, you must have a recent Liver Biopsy to be accepted. This says it all!
I had a biopsy and was determined to be stage 2 fib. 4 mos. later before starting tripple tx, had a ultra sound and was determined to be cir. Don't realy know what to think. Been und week 4, 8, 12, 16... thats all that matters now.
I am going to ask my doc about a Fibroscan too.
I respect the medical profession mostly but altra sound route is one of the reasons they never detected Hep C for so long, " you have a fatty liver, you have some scarring, but doesn't everyone" Yes right up until I had the second Biopsey 0-4 scale 4 cirrus I was 3.8 no major symptoms, I am going to get what they call a Fiber scan if treat ment does not work or if I have to come off, told this is ten times more accurate and will tell you where your liver is at and if and what can be done.
I was told i had the start of cirrhosis from mri and ultrasound. Something they call markers on your liver.I did have biopsy in 1999.It was good back then.
Today a nurse called on behalf of the NP that is handling my Hep C case; she reports that the recent ultrasound showed no change, just some suspected "mild cirrhosis". I pressed her to define "mild cirrhosis" in real medical terms,asking her if that was like stage 1 cirrhosis or something, and she said no, not even that severe. I don't know whether to be relieved or not; when I asked my NP about the status of my liver a few months back she said it was her belief that there was just inflammation. It appears that they are either being vague on purpose, in case of litigation, or they really don't know precisely the state of my liver. I suppose in the long run that it doesn't matter much having an accurate picture of my condition, but I do envy those of you that are allowed access to your own medical data, so that you are "in the loop", as they say.
Hi Tim, I hate to say it, but you're a classic example of why people need an accurate fibrosis assessment before starting Rx. You've had HCV for 'decades' and an ultrasound in Jan 2011 showed 'some evidence of cirrhosis', whatever that means. You still have no idea whether you are F2, F3 or F4. Regarding your recent U/S, there is no such thing as mild, or Stage1 cirrhosis. Saying there is 'some inflammation' is also rubbish without a biopsy. While you're waiting for your next VL, it might be a good idea to get a full liver assessment. That includes the full range of liver tests, including INR- Prothrombin time, albumin, together with a Fibroscan. I would have a biopsy, but in a previous post, you did not seem keen on that. Working out a Child-Pugh score would be useful. If you remain Undet. ( as we all hope), this information will help with followup. I know it's not your fault but it just reinforces the need for Fibrosis staging. End of lecture.................................Cheers
-- Edited by mallani on Thursday 15th of November 2012 02:09:52 PM