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Post Info TOPIC: HepC SOT Anniversay coming up - health


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RE: HepC SOT Anniversay coming up - health
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congrats polosilver, it makes my heart sing to hear of your club zero status



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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Thanks for the kind words, Hoodietree, I will keep posting! 



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Female,1a,F2 mod fibrosis,HCV 06/2017,SOT 08/04/2017, Harvoni

HCV VL 414,000, AST 54, ALT 74.  4 weeks AST 34 and ALT 31, VL 4/8/12 weeks - UND, 90 day SVR, Jan 2018. 

12 week EOT, AST 20 & ALT 23 and still VL UND at 13 weeks and 6 months!

Club Zero Member.

PoloSilver



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"Who could ask for more", except .... for maybe that water-boarding (um, if that's your thing)?! confuse wink C.

https://www.youtube.com/watch?v=8AglUMCKyns



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Youre an inspiration to all of us Polo

thanks for sharing about your journey, I hope you keep posting  



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F, 51, GT3, HCV since 1989, no alcohol since 1999, Fibrosis score F0-1 (.36), VL 216,000, ALT 23, AST 26, Epclusa SOT 7/26/18 EOT 10/18/18. Thank you God. 



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That's me, the Warrior!! I've slayed the big Dragon and lived to love the experience of it! I appreciate your ongoing support here on this HepC Friends board, its wonderful and I hope to continue as a member of Club Zero!



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Female,1a,F2 mod fibrosis,HCV 06/2017,SOT 08/04/2017, Harvoni

HCV VL 414,000, AST 54, ALT 74.  4 weeks AST 34 and ALT 31, VL 4/8/12 weeks - UND, 90 day SVR, Jan 2018. 

12 week EOT, AST 20 & ALT 23 and still VL UND at 13 weeks and 6 months!

Club Zero Member.

PoloSilver

Tig


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Hi PS,

That’s a wonderful story of the success we enjoy reading about! Defeating the virus can and will bring about so many improvements, many beyond the eradication of the disease. The difference in and improvements of the brain fog alone are amazing. I was having way too many “senior moments” and knew something wasn’t right. I’m happy to say, like you, that improved greatly, after I had time to do some recovery following SVR. 

I wish you the very best going forward and know you will continue to witness the benefits from ridding your mind and body of this disease. You’re already seeing many improvements in your personal and professional life and that brings a smile to all of our hearts! With your obvious positive outlook and drive, I expect only great things for you. Looking forward to a fun and active retirement for you, too!

Well done, Warrior!

C598A293-A5AE-4299-A2CE-0BAE958F78E2.jpeg



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 5+ years!

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Hi Canuck,

Thank you for your words and good memory, about my pre-treatment. My brain function and ability to focus is much improved over a year ago, which is amazing since I'm a year older. Im 64! That ole' HCV was fogging up my head and I was lacking in ability to concentrate. I had this for years and it created much anxiety and I kept it quiet and to myself, since I am resourceful and could deflect in a way that others didn't realize how foggy I was. Make sense? I have had new capabilities to function this year that has given me a boost,,and I have that feeling of being in my 'prime', and more focused after years of this lack of concentration at times. So clearing the virus has had a major impact on me personally. I am reading more books, Ive given some inspirational talks, my boss gave me a nice bonus recently. I dont know if anyone close to me that Ive known for many years,noticed a change, its a change I have noticed. Its in the way I feel about myself.

When I was diagnosed with HCV, I was preparing to retire, and a year later Im still working. My job is allowing me to do what I want most of the time and its flowing along right now. My partner wants me to retire and that is what I wanted that too a year ago. A year ago I felt like, wow I have finally made it and can retire! Then on my routine physical they offered to check me for HCV and voila, we know the Harvoni story. Now, with my brain functioning better, I tend to want to have a greater sense of completeness, accomplishment, closure for me when I retire,,so hanging in a little longer. I never expected this for myself,,for the last several years I just wanted to retire, because my brain was foggy and tired. Now there seems to be a personal best that I want to finish and then retire. I have plenty of time for me right now, enjoying walks, trips, freedom to do what I want, and my job is offering me some mental exercises. Thats where Im atas for the paddleboarder,,,its not me, yet I thought it looked enough like me that it could be me. J

ps

 



__________________

 

Female,1a,F2 mod fibrosis,HCV 06/2017,SOT 08/04/2017, Harvoni

HCV VL 414,000, AST 54, ALT 74.  4 weeks AST 34 and ALT 31, VL 4/8/12 weeks - UND, 90 day SVR, Jan 2018. 

12 week EOT, AST 20 & ALT 23 and still VL UND at 13 weeks and 6 months!

Club Zero Member.

PoloSilver

Tig


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I’m so glad you got another interpretation of your CT. I can’t begin to tell you how often that goes on. Anytime a concerning diagnosis is found, it should always be confirmed by another set of eyes. It seems everything is going to way of artificial intelligence (AI), so why not run it by that, too? I hate to say it, but computers are pretty darn smart, so use that opportunity to be sure, then put eyes on it as well. The anxiety some dope with poor eyesight and a D average in medical school can be debilitating.

Following up in the future with carotid and aortic ultrasound, is a great idea. We perform those on our patients routinely. It’s an easy set of tests, that require nothing but 20 minutes of your time and a lot of cold gooey gel, lol! They can quickly determine if you have any plaques (hard or soft) and measure them for a baseline, if there’s anything there, that is. Easy peasy! I also have stroke and cardiac disease in my family, as well as a mildly crunchy liver, so I get these tests done routinely.



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 5+ years!

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Well! I could just about kill whoever that was in the radiology dept who wrote "severe" versus "slight" (and very minor) in regard to your aortic calcification! Who the heck wrote "severe", if it is not. Seems a little extreme to just be a difference of opinion between the dif docs who can look at these images and come up with their interpretations of. Made you worry unduly, not nice. But good you explored it all thoroughly (I knew you would) you are good with looking after the necessities and paying attention to detail. 

I am glad you will still go and get your circulation checked further, even though the images do not indicate you have any blood flow problem (like you say, just based on your family hix) - good to take good care of yourslef.

We seem to be back where we started (with many of us poor North Americans slowly calcifying up our innards)!  I am not very concerned about your "slight" calcifications at that area of your aorta, but I would have been if it HAD been severe, but .... I am still a little bit unhappy that you have any crispy bits, and have a renal stone (and a couple renal cysts), but ... like you say these things are not bothering you, they have been following them, they are unchanged/stable?, and they plan to continue to follow you, so that is great! I am satisfied and happy with that. But, we could do without the stone tho, thank you.

Regardless of the "scarey inaccurate description of your imaging", it WAS REALLY good that you had had the prior CAT imaging, to be abe to compare back to, with this and future CAT imagings - I am all for good frequent repeat care in following.

One of my pet peeves tho has always been "radiolog-eeze" - the semantics/language/and differing choice(s) of language (choice in words/phrases, terms) the radiology doc may use (the doc who is charged with interpreting the imagings, and spelling out his interpretation of what he sees). I think it is quite possible that reports can vary widely and confusingly, often by omission of words, the things described and how! One really is at the whim of what the radiologist cares to focus on! 

Also, even if you go to the same folks for imaging, it could be possible a dif radiologist doc will charged to "read" your images - possible that each imaging session could be read by a new and dif radiologist, or via within a "group" of differing radiologists everytime, to generate an interpretations  - so I (personally) take that as a a further possible lack of continuity (as a bonus). 

In my partners repeat imagings they "count and measure" - and it is not good if they do it (report it) differently each time via slightly dif methods, using slightly dif terminology! Semantics/nuances and thoroughness are important. 

I am glad you are relieved about the CAT and back to revelling in your cure.

BTW, one of your big concerns (pre-treatment) was about dificulty with ability to concentrate, or interference with your ability to concentrate, and how it might have been undermining your confidence with work and things - and subsequently, you said that that was better, got better, after treatment. But can you elaborate a bit? - are you still working and how has it been going on the concentration front?

Later, C.  (Is that YOU in your avatar?)

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Hello Canuck, Tig, & All --- 

Great news! Sooo,,I saw the doc yesterday and it turns out that I do not have Severe Calcification. It was an interpretation by someone in Radiology and should never have been in the report. Whew!

I do have slight calcification at the split where the arteries go down to the lower extremities, but it is very minor and all the flow of blood is there, (and they showed me on the imaging) and no interruption or anything to be concerned about, etc, etc. It reminds me a few years ago someone put in a report that a friend of mine had a spot on her lungs and it was nothing. 
 
However, I told this doc that my grandfather had a massive stroke at 65, so to be proactive. Towards end of Sept I'm going to have ultrasound to check circulation in both legs and then the carotid artery in neck and head. Wow, what a week, I was having a lot of concern, and the good part is it got me to look more closely at my diet and areas where I can improve. So overall I think it was beneficial even though it did give me significant anxiety even though I meditated and tried to be positive, I still had heartburn yesterday and then it went away after the doc visit, so it was all brought on by me. Its interesting how that works, eh? I do all the right things and yet I still had these symptoms like something was wrong.
 
Naturally, since I saw the doc, I feel great and can concentrate better, grateful that I am HCV free and part of Club Zero! Yay! A year ago I was in my first week of Harvoni. sigh.
 
Polo


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Female,1a,F2 mod fibrosis,HCV 06/2017,SOT 08/04/2017, Harvoni

HCV VL 414,000, AST 54, ALT 74.  4 weeks AST 34 and ALT 31, VL 4/8/12 weeks - UND, 90 day SVR, Jan 2018. 

12 week EOT, AST 20 & ALT 23 and still VL UND at 13 weeks and 6 months!

Club Zero Member.

PoloSilver



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The doc I see next week requested and already received my CT kidney, liver, pancreas, etc images from last July 2017, just before I started Harvoni. 



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Female,1a,F2 mod fibrosis,HCV 06/2017,SOT 08/04/2017, Harvoni

HCV VL 414,000, AST 54, ALT 74.  4 weeks AST 34 and ALT 31, VL 4/8/12 weeks - UND, 90 day SVR, Jan 2018. 

12 week EOT, AST 20 & ALT 23 and still VL UND at 13 weeks and 6 months!

Club Zero Member.

PoloSilver



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Hey Tig!

Good to see your e-voice here, encouraging and informative...thank you! I see a vein and vascular doc next Thursday for a consultation to review the findings on the CT scan. I with you on the going from no mention a year ago to severe this week. Last year the CT Scan was from another clinic, so that may be why there was no mention of calcification. Thank you for the explanation and I'm writing up my list of questions for the doc next week. I found a symptoms list on Mayo and the one out of several that I have are the leg cramps and sometimes strange sensations in my calf and ankle area. I'm not overweight, exercise regularly and take my meds, so I'm cutting out cheese and see if that helps and learn what the doc sees. Thanks for your responses. It feels good to be back here and checking in again. 

I'll let you folks know what I learn next week at the specialist visit. One thing that comes to mind, is I wish I could move the calcium out of the arteries and into my bones! They tell me to take calcium for bone health and I do and then I have too much calcium in my arteries? Wha??

--polo



__________________

 

Female,1a,F2 mod fibrosis,HCV 06/2017,SOT 08/04/2017, Harvoni

HCV VL 414,000, AST 54, ALT 74.  4 weeks AST 34 and ALT 31, VL 4/8/12 weeks - UND, 90 day SVR, Jan 2018. 

12 week EOT, AST 20 & ALT 23 and still VL UND at 13 weeks and 6 months!

Club Zero Member.

PoloSilver

Tig


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Hey Polo,

Congrats on the upcoming SVR anniversary! That's wonderful to know how viable SVR truly is. I have to tell you, even with my 6th year coming up, I still get a bit nervous every time they draw that darn PCR, lol! I guess we lived with it for so many years, it's a difficult thing to erase from the mind. It does make us stronger though, just knowing how tough our immune systems can be when given the opportunity to strut it's stuff.

As Canuck mentioned, it's not terribly uncommon for us at our age to start witnessing "bits and pieces" in places we don't desire. I would ask your doctor to review the last CT and search for evidence of this "severe" atherosclerotic condition in your iliac bifurcation. They don't just develop overnight and if there was no evidence a year ago, I'd want to have the severity of the condition confirmed. The calcification has to be preceded by atherosclerosis or fatty plaque buildup, which left long enough calcifies or hardens in place. They mentioned "without aneurysm", which is good. Typically in a calcified area in any artery, once the hardening prevents the blood vessel wall from receiving nutrients, it begins to fail and or swell, which can lead to further complications (aneurysm) or a stroke. That's a common reason (cause) in stroke patients. In atherosclerosis or soft plaque (before it calcifies) that can also cause heart attacks and stroke because some of the fatty deposits can break loose and then obstruct the vessel further down the line. With all of this explanation out of the way, know that we all begin to have degrees of this condition. There are a number of contributing factors, high blood pressure, high cholesterol, diabetes, poor diet, lack of exercise, obesity, blah, blah, blah. Don't forget our age has a lot to do with it. The best medicine is exactly what you're doing, eating right, exercising and following your doctors orders. Very often medication (Statins) is required to control cholesterol, the addition of further dietary constraints, etc. are warranted. It is what it is and we can only react once we are presented with such information. It sounds to me like your health is quite good and your routine is even better! You don't have to worry, just be proactive in meeting the situation head on. Find out why it wasn't discovered a year ago and ask why in such a short period of time, it's suddenly "severe". Like anything that goes south with our health, knowing you have the condition allows you to control and monitor it. Many don't and additional complications can mount. By knowing you may have something going on, allows you the opportunity to meet it head on and before there are any further complications.



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 5+ years!

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Canuck -- thanks so much for your response. I feel better after reading it,,,I was feeling down last night with reading the new info on my CT report, gawd. If it's not one thing its another with these aging bodies. I'm going to be calling the doc office today and see what if anything needs to be done. I'll let you know what happens.

I love the osprey family story! Sounds like a lovely walk indeed! Once again, thank you, thank you! I will also focus on all the good news I have and be continually grateful for a healthier liver and overall system today than I had a year ago. Hoorah! 

 



__________________

 

Female,1a,F2 mod fibrosis,HCV 06/2017,SOT 08/04/2017, Harvoni

HCV VL 414,000, AST 54, ALT 74.  4 weeks AST 34 and ALT 31, VL 4/8/12 weeks - UND, 90 day SVR, Jan 2018. 

12 week EOT, AST 20 & ALT 23 and still VL UND at 13 weeks and 6 months!

Club Zero Member.

PoloSilver



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Thank you Iris Dragonfly for the support! Glad to read you are taking that Harvoni magic and I love your quote...I will take the silence in the woods today. Good medicine.



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Female,1a,F2 mod fibrosis,HCV 06/2017,SOT 08/04/2017, Harvoni

HCV VL 414,000, AST 54, ALT 74.  4 weeks AST 34 and ALT 31, VL 4/8/12 weeks - UND, 90 day SVR, Jan 2018. 

12 week EOT, AST 20 & ALT 23 and still VL UND at 13 weeks and 6 months!

Club Zero Member.

PoloSilver



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Hey polo,

So glad to hear from you! smile

Well, me too, full of crunchy bits here and there, and none of my docs seem to be perturbed about them either. Mine in somewhat quite dif spots than you, mind you.

Calcifications eh, wish mine did not exist or would take a hike - don't need to spend any time fretting about them.

Tig and I talked about mine, and we concurred, I am not so dif than a lot of other people out there, so I have no choice but to live with the extra bits. But at the same time nor did I enjoy finding out about their existence, and I don't need them thanks.

Atherosclerosis or calcifications that happen in our vessels, seems common-place in our modern-day North American society, lifestyle/diet/genetics and our bodies just leading us there. 

I guess with you googling up things you have deduced the "area" of your body they indicate the calcification is -  a "lower" vessel,  perhaps where aorta splits off in two, one going down each side toward your lower extremities? As far as my aortic ones, i'll have to look it up again on my imaging report, but i think my aortic ones were higher up. Yours indicated "iliac" (as in iliac crest), as in more "hip" level versus mine was more chest level.

I guess we should not be surprised when we do find these calcifciations, in our vessels, or organs, or being told we have been developing atherosclerosis as we age.

Tig and I figured if I have no symptoms or disease or complaint about my crunchy bits, then I'm good. If my calcifications and atherosclerosis doesn't bother me, I don't bother them. 

I'm no doc, I can't begin to guess what;s going on with you - but ... maybe you are like many other aging North Americans?? The only part I fretted about was that it said "severe", now that doesn' sound good! But ... if your docs are not excited, and you have no signs/symptoms/complaints of anything because of what they see, then maybe they just leave things alone - I have no idea.

But I know you, you are thorough and attentive and you will be sure to discuss it with your docs more, and should you still be worried, I know you'll get second opinions and learn more.

Tell us when you find out more.

And, just tell us more period, what ja been up too?

Congrats on your SVR. Good you are getting good follow-up. Good you are cured and feeling good. Man, that's a lot of goods you delivered! heehee  wink C.

BTW - visited 2 osprey nest locations in our area lately. One nest not active, something wierd happened there. The other nest has a family, tonight on our walk we watched the youngens are being tempted out of the nest pateintly by their parents.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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I have not heard of this, so I won't be of much help. Except to say hang in there ...modern medicine is pretty amazing these days.

So I'm sure you are curious as to what may have caused this? I hope you get the answers you need as soon as possible. Waiting is such a bummer.

Is it making you feel unwell in any way? How are you feeling overall as compared to before treatment? So glad you stopped in by the way, it's good to see how folks are fairing. Praying this will just be a blip and you will be on to continued good health.

BB, Iris



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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)



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Hello Canuck/Tig/All -- polosilver here after several months of being gone away. I've tried to figure out where to post my updates and not sure where to do it, so finally decided to start a new topic!

I started treatment August 4 2017, so this time a year ago I had a lot of questions and concerns. I am happy to report that I am HepC free today! I have felt great for the last 7 or 8 months and feeling continually grateful to have slayed the HepC dragon!

However, last year during the process of testing me for damage from HepC, they found a couple of cysts in my kidneys and a kidney stone that seems to just hang out and not bother anything. I recently had a follow-up CT Scan since they want to keep a watch on the cysts and stone, and the report was posted online today that all looks stable and same as last year, and they recommend checking again in a year. However, at the bottom of the notes, it said, 'Severe calcification of the aortoiliac arteries without aneurysm'. This year the CT was with a different facility since my insurance carrier changed. Last year this was never mentioned, yet they did give me a stress test and said they were not concerned about my heart. I take meds for High Blood Pressure and I have Glaucoma. I am not overweight, I exercise regularly and eat a healthy diet. I felt alarmed by this comment, yet my doc didn't even mention the 'Severe calcification of the aortoiliac arteries without aneurysm' in the online notes to me. So I sent email asking about it and waiting to hear back on it. I looked online a bit for information on this and didn't come up with much information. 

I am hoping Canuck or Tig can't point me to something. Have you heard of this? Sometimes, ignorance is bliss, because I was all pleased about my health and now this, argh! 

Thanks for any insight someone may have. I am grateful to be HepC free! 



__________________

 

Female,1a,F2 mod fibrosis,HCV 06/2017,SOT 08/04/2017, Harvoni

HCV VL 414,000, AST 54, ALT 74.  4 weeks AST 34 and ALT 31, VL 4/8/12 weeks - UND, 90 day SVR, Jan 2018. 

12 week EOT, AST 20 & ALT 23 and still VL UND at 13 weeks and 6 months!

Club Zero Member.

PoloSilver

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