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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
Hi, Bill. I think the bottom line is that I've got to treat soon anyway, to keep things from getting any worse. If I can get rid of the virus while my liver is still functioning, rather than wait until it collapses, I'll probably be okay for the future. The problem is finding the right trial, and being accepted into it. No small order down here in the "forgotten continents".
I've got a lead on a new hospital where hopefully there are some better hep MDs. That would be a step in the right direction.
But the docs here are very conservative, so there's not much chance of getting any of them to work with me on a home-brew Tx like what Gauf did (Alinia + SOC + CAMs), which is what I'd really like to try. So I may have to go back to New York eventually (oh my g*d!).
Anyway, thanks for your posting and your good wishes.
Mike
I've got a lead on a new hospital where hopefully there are some better hep MDs. That would be a step in the right direction.
But the docs here are very conservative, so there's not much chance of getting any of them to work with me on a home-brew Tx like what Gauf did (Alinia + SOC + CAMs), which is what I'd really like to try. So I may have to go back to New York eventually (oh my g*d!).
Anyway, thanks for your posting and your good wishes.
Mike
I am so glad to hear this! It is just great. But your platelets are kind of low. Did you hear anything from your doctors about this? Can platelets be low when the patient has F1-2?
I guess, every test can make a mistake. None of them is perfect. I am glad you retested. Keep an eye on the condition of your liver.
I guess, every test can make a mistake. None of them is perfect. I am glad you retested. Keep an eye on the condition of your liver.
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