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Hep C Discussion Forum -> On Treatment -> Garbage in, Garbage out -- I'm very disappointed :(
Post Info TOPIC: Garbage in, Garbage out -- I'm very disappointed :(
Isiscat2011


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RE: Garbage in, Garbage out -- I'm very disappointed :(
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Gator Man wrote:

Tx of HepC doesn't require the Mayo Clinic, only doctors that care enough about patients to actually know what they are doing on their behalf.

I agree completely and I think the problem is that you don't find this "caring" and "knowledge" in the typical GI practice which is where most of the HCV tx is coming from.  It isn't my intention to disparage GIs who are in community based practices.  I simply don't think most are very interested in this disease.

HCV tx has, to a large extent, been thrust upon GIs due to a shortage of hepatologists and a large number of patients.  IDs are also treating HCV to a lesser extent, but they don't tend to have the interest or training in liver disease, which often goes hand in hand with HCV.  PCPs are too busy to take on HCV tx.

Healthcare systems aren't presently designed to deal with the magnitude of HCV at least not at anything approaching an optimal level.  Nothing much patients can do about that except to become as informed as they can.  Having better tx drugs certainly helps but tx will not be so simple for everyone.  



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Gator Man


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-- Edited by Gator Man on Wednesday 17th of September 2014 11:31:40 PM

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Geno 1b, compensated cirrhotic, 54 yo, prior null responder. Pre tx VL approx 595,000, tx with Sovaldi/Olysio (no Riba) started 1/8/14. VL 40 @ 2 weeks, UND @ 4 weeks. Still UND @ EOT + 1 year.

Gator Man SVR12, Dragon 0, Final Score.
Gator Man


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The good news is that these drugs work, perhaps better than some of the doctors and practices who prescribe them. I am fortunate in that the only one I interact with after a LPN takes basic vitals, is my hepatologist. He also personally called me with VL results while I was on tx and ultrasound and blood test values since then.

I see my doctor at his inner city HCV clinic, not at the university hospital up the road where they quarantine Ebola patients. I actually spent a month in the hospital's isolation unit when I had aplastic anemia and received lifesaving care. The HCV clinic treats many people who cannot pay and work to find trials to cover pharmaceutical costs for those without insurance. Tx of HepC doesn't require the Mayo Clinic, only doctors that care enough about patients to actually know what they are doing on their behalf.

 



-- Edited by Gator Man on Wednesday 17th of September 2014 11:15:17 PM

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Geno 1b, compensated cirrhotic, 54 yo, prior null responder. Pre tx VL approx 595,000, tx with Sovaldi/Olysio (no Riba) started 1/8/14. VL 40 @ 2 weeks, UND @ 4 weeks. Still UND @ EOT + 1 year.

Gator Man SVR12, Dragon 0, Final Score.
Isiscat2011


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I wouldn't be concerned about the result, Skewed.  At only 6 days it is still very good and proof that the meds are working.  Erroneous information from medical professionals is common in the world of HCV.  Very disappointing that this disease, and the patients who suffer from it, are still marginalized in medical practice.  Imagine if heart disease or cancer was regarded the same; the consequences of HCV can potentially be as serious.  

I recently spoke with a GI doc who said that he had no interest in treating HepC.  He casually stated that his nurse knew "10 times more" than he does about it so he will leave the HepC tx to her.  I appreciate his candor but I certainly wouldn't want to be one of the patients in his practice.  Unfortunately, this attitude is not unusual, from what I have seen and heard.  

 



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
OldenSlow


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Still a great result after only 6 days, Testiva. You are well on your way. It's a shame some of these "professionals" can't even read a report properly before blurting out results. She was clearly reading from the Standard Range column and ignoring everything else. Sheesh...

It took me 4 weeks to get a number that low, and 8 weeks to clear. You're way ahead of the game. wink

wayne



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66 y/o male - Geno 1b - F4 cirrhotic dx 2001 - 16 wk treatment w/ Sovaldi/Olysio/Riba - Und @ EOT+24 SVR

 
skewedButNotBroken


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By trade, I'm a computer programmer and I also teach computer programming. One of the first things that a programming student learns is that the output for the program will be no more accurate than the data that is input into it--hence the phrase: Garbage in, Garbage out. Well a few days a go I got a call from my doctor's RN and she told me I was undetected (Garbage in) and then I posted the results to this forum (Garbage out). Since then however, I received my results via the Epic electronic record system and my viral load was 127. While this is good for only 6 days, it is not undetected. I'm going to upload a screenshot of the quantitative VL results and my liver panel results. Thanks in advance for your comments.

Below the thumbnail images, you will see a hyperlink that says, "View Image" click that link and the image will open up in an external webpage. If you hold down your control key and press the plus sign on your keyboard you can increase the size of the image.                           



-- Edited by skewedButNotBroken on Wednesday 17th of September 2014 09:34:48 PM

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Diag. with hep c in 1992; A3:F2;  GT 1a; IL28B CT; VL 900k, ALT 150, AST 100 on 8/5/2014; SOT 9/5/2014  S/O ---VL 127 after 6 days; VL detected on day 18 but < 15.; --> UND @ EOT+ 1 year SVR!
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