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Fibroscan ad libidum; or, Who controls the controls?
Dear friends and long-suffering Medhelpers, in particluar all those who have accompanied me in the on-going drama of the "tests of fibrosis progression" to which I have been subjected, which in truth have been no sort of tests but rather a nightmarish maze of contradictory and confounding scores of pseudo-scientific claptrap, none of which, when taken together, appears to mean anything, to you this thread is dedicated.
You will recall - perhaps somewhat reluctantly given the already incomprehensible nature of my two years of conflicting biopsy reports, blood analyses, ultrasounds, ecodopplers, FibroTC, and other soundings and probings - that in my last submission on this subject I related how I had been given a Fibroscan at my hospital which had a result of F3/F4, a two-stage jump from the worst of the previous scores (F1/F2, given in May of 2008 to what was left of the biopsy material by a pathologist outside my hospital), placing me in the category of pre-cirrhotics, sending me into a panic which I was obliged to calm by doubling my daily dose of Valium, and exacerbating my fury against my doctors, hepatologists everywhere, and the entire evil profession of medicine. My question to the forum "F1 to F3/F4: is it possible?" was a plea for sane opinion from my friends here in the forum, and at the same time a sarcastic repudiation of my situation as victim of techniques and machines, and their operators, that seemed to be trying to kill me.
With what remained of my reason (precious little, I must admit, after two years of torture with ambiguous and erroneous information) and the immeasurable assistance of you Medhelpers, I decided that a result - F3/F4 - so strange and unexpected could, indeed must be in error. I therefore demanded a re-test on the same machine by a different operator, and was granted this demand after some thinly-veiled threats to titled pill-pushers of their exposure as incompetent quacks. In short, one week after the original Fibroscan I was given another. This second test repeated the same score as the first, F3/F4, apparently confirming the unthinkable: that I had progressed from F1 to F3/F4 in less than two years!
Persisting in my belief, however unsubstantiated, that there is an objective reality beyond the ravings of imbeciles and lunatics, I discovered that another Fibroscan machine exists in Buenos Aires, in a private clinic and in the hands of a long-time professional liver ultrasound specialist. In for a dime in for a dollar, I made an appointment for last Friday for a third Fibroscan.
This one was conducted in a very different manner from the first two. An ultrasound (ecographic) machine was used to orient the Fibroscan probe in relation to the liver, a procedure not used at my hospital. Furthermore the probe was not placed between the ribs, but in a more open space below the ribs. The operator also explained to me how the data gathering actually functions: that the probe is held more or less stationary while the patient is asked to breathe deeply and hold the breath at different points in the expansion of the abdominal cavity, allowing different parts of the liver to come into the field of view of the probe. In other words, it is the liver that moves not the probe, permitting the sound pulses to impinge on different parts of the organ. Armed with this knowledge, I was able to assist the operator in obtaining probings of a large area of my liver.
The results? F1/F2! And this was confirmed by the ultrasound done simultaneously, which, I was told by this proficient operator, showed that my liver is not yet appreciably enlarged, that the vena porta is only slightly wider than normal (the expansion of this vein - caused by blocked blood flow in the liver, consequence of the fibrosis - eventually results in the creation of new blood vesicles, the esophageal varices, which, I am told, can hemorrage and cause death even before the liver fails completely), and that my spleen, an organ that also eventually enlarges to accommodate a part of the excessive blood pressure in the vena porta, was still of normal size.
It seems, then, if this new Fibroscan score of F1/F2 can be believed (and it certainly does coincide more closely with previous tests, other than the first, repeated, Fibroscan), that my hospital has made yet one more false test and false diagnosis, that I am not after all cirrhotic, that my liver fibrosis is not progressing at an unusually fast rate, that I do not have to "go into standard antiviral therapy immediately" as my hep MD has lately been threatening, and that it is difficult, if not impossible, to believe anything that these tests or the individuals (members, it may be granted, of the genus homo erectus, if not of the species homo sapiens) who administer them say.
I should also report that, after receiving the F3/F4 Fibroscan result from my hospital a month ago, I contacted the authors of two recent studies of fibrosis progression, and was told by them that no case of progression from F1, or even from F2, to F3/F4 in less than four years has been recorded in an otherwise healthy non-alcoholic person with chronic HCV infection, no matter what his or her age, platelet count, or transaminase levels.
I am currently attempting to change hospitals. Having hepatitis is one thing; being driven mad by incompetent medicos and misused diagnostic procedures is quite another. I have had enough.
[Look for further installments of the exciting saga "A New York Hepatitic In The Third World" in upcoming issues of this forum.]
Mike
You will recall - perhaps somewhat reluctantly given the already incomprehensible nature of my two years of conflicting biopsy reports, blood analyses, ultrasounds, ecodopplers, FibroTC, and other soundings and probings - that in my last submission on this subject I related how I had been given a Fibroscan at my hospital which had a result of F3/F4, a two-stage jump from the worst of the previous scores (F1/F2, given in May of 2008 to what was left of the biopsy material by a pathologist outside my hospital), placing me in the category of pre-cirrhotics, sending me into a panic which I was obliged to calm by doubling my daily dose of Valium, and exacerbating my fury against my doctors, hepatologists everywhere, and the entire evil profession of medicine. My question to the forum "F1 to F3/F4: is it possible?" was a plea for sane opinion from my friends here in the forum, and at the same time a sarcastic repudiation of my situation as victim of techniques and machines, and their operators, that seemed to be trying to kill me.
With what remained of my reason (precious little, I must admit, after two years of torture with ambiguous and erroneous information) and the immeasurable assistance of you Medhelpers, I decided that a result - F3/F4 - so strange and unexpected could, indeed must be in error. I therefore demanded a re-test on the same machine by a different operator, and was granted this demand after some thinly-veiled threats to titled pill-pushers of their exposure as incompetent quacks. In short, one week after the original Fibroscan I was given another. This second test repeated the same score as the first, F3/F4, apparently confirming the unthinkable: that I had progressed from F1 to F3/F4 in less than two years!
Persisting in my belief, however unsubstantiated, that there is an objective reality beyond the ravings of imbeciles and lunatics, I discovered that another Fibroscan machine exists in Buenos Aires, in a private clinic and in the hands of a long-time professional liver ultrasound specialist. In for a dime in for a dollar, I made an appointment for last Friday for a third Fibroscan.
This one was conducted in a very different manner from the first two. An ultrasound (ecographic) machine was used to orient the Fibroscan probe in relation to the liver, a procedure not used at my hospital. Furthermore the probe was not placed between the ribs, but in a more open space below the ribs. The operator also explained to me how the data gathering actually functions: that the probe is held more or less stationary while the patient is asked to breathe deeply and hold the breath at different points in the expansion of the abdominal cavity, allowing different parts of the liver to come into the field of view of the probe. In other words, it is the liver that moves not the probe, permitting the sound pulses to impinge on different parts of the organ. Armed with this knowledge, I was able to assist the operator in obtaining probings of a large area of my liver.
The results? F1/F2! And this was confirmed by the ultrasound done simultaneously, which, I was told by this proficient operator, showed that my liver is not yet appreciably enlarged, that the vena porta is only slightly wider than normal (the expansion of this vein - caused by blocked blood flow in the liver, consequence of the fibrosis - eventually results in the creation of new blood vesicles, the esophageal varices, which, I am told, can hemorrage and cause death even before the liver fails completely), and that my spleen, an organ that also eventually enlarges to accommodate a part of the excessive blood pressure in the vena porta, was still of normal size.
It seems, then, if this new Fibroscan score of F1/F2 can be believed (and it certainly does coincide more closely with previous tests, other than the first, repeated, Fibroscan), that my hospital has made yet one more false test and false diagnosis, that I am not after all cirrhotic, that my liver fibrosis is not progressing at an unusually fast rate, that I do not have to "go into standard antiviral therapy immediately" as my hep MD has lately been threatening, and that it is difficult, if not impossible, to believe anything that these tests or the individuals (members, it may be granted, of the genus homo erectus, if not of the species homo sapiens) who administer them say.
I should also report that, after receiving the F3/F4 Fibroscan result from my hospital a month ago, I contacted the authors of two recent studies of fibrosis progression, and was told by them that no case of progression from F1, or even from F2, to F3/F4 in less than four years has been recorded in an otherwise healthy non-alcoholic person with chronic HCV infection, no matter what his or her age, platelet count, or transaminase levels.
I am currently attempting to change hospitals. Having hepatitis is one thing; being driven mad by incompetent medicos and misused diagnostic procedures is quite another. I have had enough.
[Look for further installments of the exciting saga "A New York Hepatitic In The Third World" in upcoming issues of this forum.]
Mike
Thanks Mike, I'm good. Will do the next and last PCR at 1 year post. So that's in about 4 months, since I'm 8 months post now.
I hope you will have been able to start tx by then with the best possible odds for you! I'm really rooting for you, as I always have! Hugs my friend and enjoy the summer!
I'm off to Mali in the beginning of January, can't stand this gray and yucky weather.
I hope you will have been able to start tx by then with the best possible odds for you! I'm really rooting for you, as I always have! Hugs my friend and enjoy the summer!
I'm off to Mali in the beginning of January, can't stand this gray and yucky weather.
Ha-ha :-) Yeah, I've backed off on the Valium. Until the next shock.
Felt a bit like a cyclonic storm... for a while I thought I'd been dropped into Oz by it, and I was looking around for Dorothy and the Tin Man. Only found the phony Wizard, though, and he turned out to be my hep MD.
M.
Felt a bit like a cyclonic storm... for a while I thought I'd been dropped into Oz by it, and I was looking around for Dorothy and the Tin Man. Only found the phony Wizard, though, and he turned out to be my hep MD.
M.
Hi, Elaine. Thanks for posting. I followed the whole tragedy of your son's demise last year. I didn't post then because so many other people were and I didn't want to add to the noise level. But I was so shocked and distressed that I went into denial for a while and stopped posting or doing anything else. Are you holding up okay?
I can't tell you how angry it makes me to hear about the biopsy snafu with Nick. I really think medics don't want to solve this problem, they just want to get consult fees from the drug companies. How in g*d's name could they screw up biopsy follow-through like that? It's inexcusable.
That's why I've been going after all the fibrosis tests I can get. You can't trust any of them, so maybe if you get enough they'll make some sense. Sort of take an average.
Re biopsies, my own hep MD told me for two years that biopsy was a sure thing, the only way to go. Then, when he got the F3/F4 on his Fibroscan, he started saying "biopsies aren't trustworthy, they only take a small bit of the liver". What hypocrites they are, these MDs! Of course biopsy isn't reliable. No one ever proved that fibrosis is evenly distributed throughout the liver in the pre-cirrhosis stages, so how can they know that a biopsy means anything?
But there's nothing much we can do, Elaine. You did everything you could, just like the rest of us. We're all in the same boat, relying on fallible human beings and fallible machines. (Although I must admit that, since it's medicine that caused this epidemic, the lack of seriousness on the part of medical professionals is unforgivable.)
I better stop this rant before my blood pressure goes through the roof.
M.
I can't tell you how angry it makes me to hear about the biopsy snafu with Nick. I really think medics don't want to solve this problem, they just want to get consult fees from the drug companies. How in g*d's name could they screw up biopsy follow-through like that? It's inexcusable.
That's why I've been going after all the fibrosis tests I can get. You can't trust any of them, so maybe if you get enough they'll make some sense. Sort of take an average.
Re biopsies, my own hep MD told me for two years that biopsy was a sure thing, the only way to go. Then, when he got the F3/F4 on his Fibroscan, he started saying "biopsies aren't trustworthy, they only take a small bit of the liver". What hypocrites they are, these MDs! Of course biopsy isn't reliable. No one ever proved that fibrosis is evenly distributed throughout the liver in the pre-cirrhosis stages, so how can they know that a biopsy means anything?
But there's nothing much we can do, Elaine. You did everything you could, just like the rest of us. We're all in the same boat, relying on fallible human beings and fallible machines. (Although I must admit that, since it's medicine that caused this epidemic, the lack of seriousness on the part of medical professionals is unforgivable.)
I better stop this rant before my blood pressure goes through the roof.
M.
God Mike it's all so confusing but sounds like at least the news is getting better - just don't give up and honestly if it were me I'd figure I was somewhere in the middle of both tests to play it safe and be happy with that.
You haven't treated yet right - could that make a difference in being pre-existing after all we are all technically pre-existing when the majority of us have had it over 20 years right?
Just hope you get more good results.
You haven't treated yet right - could that make a difference in being pre-existing after all we are all technically pre-existing when the majority of us have had it over 20 years right?
Just hope you get more good results.
You may be right. In any case, it's all very mysterious. Personally, I don't think the operators are receiving enough training. I was once told that it takes thirty years for a liver ultrasound specialist to learn how to "read" the screen properly. And these Fibroscan screens are even more inscrutable than ultrasound.
I haven't yet switched hospitals. I have found a better one, but will they take me as a patient with a pre-existing hepatitis infection? I rather doubt it, but we'll see.
M.
I haven't yet switched hospitals. I have found a better one, but will they take me as a patient with a pre-existing hepatitis infection? I rather doubt it, but we'll see.
M.
I don't know what to think, Marcy. I must have had the most fibrosis tests of any hep C in history, and I still don't know what's going on with my liver. As tashka said, if I'm only F1/F2 why are my platelets down big-time? None of it makes sense. The only thing to do I suppose is to treat ASAP, in a PI trial if possible.
I had blood taken this morning, so I should have some idea this week how my CAM regime is working (I've been on full-dose Vitamin E, alpha-lipoic acid, silybin, and PPC for a month). It may be a pipe dream, but if I can just get the transaminases down and the platelets up, maybe I can hold the thing in bay for a while. And I'm still pursuing the idea of doing Alinia.
How is it going with you? Are you doing more VL tests to make sure you're still SVR? Are you feeling pretty much back to normal (whatever that is)?
M.
I had blood taken this morning, so I should have some idea this week how my CAM regime is working (I've been on full-dose Vitamin E, alpha-lipoic acid, silybin, and PPC for a month). It may be a pipe dream, but if I can just get the transaminases down and the platelets up, maybe I can hold the thing in bay for a while. And I'm still pursuing the idea of doing Alinia.
How is it going with you? Are you doing more VL tests to make sure you're still SVR? Are you feeling pretty much back to normal (whatever that is)?
M.
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