Home › Forums › Main Forum › Patient Stories › Matt Joins the Fray!
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3 July 2016 at 12:56 am #20340
Hi Matt that’s true you have got a great doc on your team getting a script and all
All the best for the next few weeks from me19 July 2016 at 8:59 pm #21083Hello everyone! BOY! Did I take forever to get back here to update or what?
Anywho, I did my dr visit as scheduled and it went purdy much like I figured it would. The doctor was pleasantly surprised by my labs, said, “It looks like it’s working! You’re on your way to being cured!” He then walked me through the different results that were indicators of liver function etc. and said, … “everything is normal. I don’t doubt that you’re VL is probably undetectable at this point since this lab is 4 weeks old. …. What’s the name of that sight again?”
I told him Fixhepc.com, and he pulled it up and started looking at it.
Oh yeah, I asked about another lab at EOT and he stuck to his guns and said he prefers the “latest guidelines” and he’ll do one 6 weeks after EOT. kinda bummed me out a little, but HEY! He wanted to look at the web page!
As I was scheduling my next appointment with his staff I looked back into the exam room and the doctor was still seated at his computer looking at the website. SCORE!
The reason it took so long to post this is, my wife and I went off grid, electronically speaking, to do some long planned, emotional and spiritual restoration work. We returned home last night and that’s when I “plugged” back in. I listened to my voicemails, including one from my Doctors office, requesting I return the call ASAP. hmy: Kinda disconcerting, but I called back this am and I’m sure you guessed it! (I was hoping it’d be this and not some dire diagnosis) YEP! He wanted that website address again. He couldn’t remember it and he wanted it so he could provide access to treatment for his patients who are being denied by their insurance. Now they have the same opportunity that Fixhepc gave me. I told them to feel free to share my contact info with anyone they deemed could use it.
I’m dancing … Anyone care to join me … just jump right in
I added my doc in the above dance.
Now I’ll go catch up with the rest of you guys posts for the last week
GT1a; Got it some time in the 70’s; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA NOT DETECTED”19 July 2016 at 9:18 pm #21084That is fantastic, Matt! Welcome back!
Scored one for the home team, and for FixHepC! Booyah!!!
19 July 2016 at 10:47 pm #21087Thanks fitz! Though we thoroughly enjoyed our downtime together, It’s good to be back.
Hey! Just cuz I’m from the Pacific NW … are you assuming I’m a Seahawks fan????? I’ll have you know, I’ve ALWAYS been a Peyton fan, and I never liked seeing him get hit …. having said that … GO HAWKS!!!!
You knew didn’t ya? thanks for the vid.MK
GT1a; Got it some time in the 70’s; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA NOT DETECTED”20 July 2016 at 4:48 am #21099Great post Matt, good job! a doctor on side is such an important gain to make, thank goodness, one who will look at the website!
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
20 July 2016 at 6:32 am #21104Yes if you’re from the Great Northwest…….it has always been a Steve Largent toe dragging touchdown catch, a beast mode monster run and as we all know a bad call on the one 1 yard line! But that does not dim the lights for the…….Seattle Seahawks.
I’m with you….GO HAWKS!
Contracted HCV 1980’s
Geno Type 1a
F3 ( doc says once treated I’ll be F2 maybe F1)
Meds shipped 6/17/2016 arrived early 7/2016Viral count – 3,471,080
4 week quantitative bloods: August 17, 2016. I have been diagnosed as <15 (told undetected)
8 week quantitative bloods: September 14th. I have been diagnosed as <15 (told undetected)
11 week PCR RNA Qualitative bloods: September 26th 2016 – Undetected
December 19th 2016: Cured!
Viral count: zero!!!
2018 viral count: still zero!
Cured!20 July 2016 at 6:53 am #21111Yes Sven, I confess it hasn’t always been purty, or even fair … but it has always been fun!
Matt
GT1a; Got it some time in the 70’s; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA NOT DETECTED”12 August 2016 at 11:10 pm #22140Greetings to one and all,
I know this is just me but … I’m feeling guilty about my recent absences from the forum. Truth be told, life catches up to us all and as a few, (well, maybe just one of you) know, I had to briefly suspend my retirement from carpentry to help a former employer out. It came at a good time in a financial way for us but highlighted the fact that I’m not as young as I think I am and the work has proved harder than it used to be.
Also catching up to me is my treatment with the generic meds. I took my last pill Wednesday night.
It was, as others have said, mixed with emotions. I find myself in the unexpected circumstance of only having been tested at 3 weeks into treatment. “Unexpected” because originally my Family Practitioner, agreed to follow the testing guidelines as outlined in the Redemption e-trials, then decided to give my Hep C specialist the prerogative to make those decisions. He has decided to wait until 12 weeks after EOT to test. Since I have an appointment scheduled with FP 3 weeks after EOT including standard blood work, I’ve rescheduled that to coincide with 4 weeks after EOT and test to include Hep C levels as well. Have not heard back concerning the blood test request. Hopefully a on that.
Overall, I feel great, despite the return to work. Needed to get off my duff anyway.And now, this I feel impelled to write,
I really appreciate what you’re accomplishing here Dr. Freeman. Thanks to you, GP2U, and MonkMed for making this all possible. Words come hard, (I’m looking back at this post posting, and see that last bit … not so much as I thought) and you’ve heard them all before I know … I guess this must be in a sense, what it feels like to be a kid on the “Make a Wish” program that has been granted his wildest dream to come true. The ones who stepped forward, like yourself, Greg Jeffries and all those who bravely tested the waters for the rest of us and accepted the risks involved, (highly publicized and exaggerated by the Pharmaceutical giants as they were/are), and in spite of it started treatment. I’ve seen you referred to as Dr. Freeman’s “guinea pigs” but I prefer to compare you to the volunteer test pilots of our modern era, and not as witless animals, unaware of your potential fate as you march off to the lab. It indeed takes the same kind of well thoughtout courage and will that it took to step into those cockpits and cabins, not entirely sure how the test would end. Still you stepped up and made that choice. I will always be humbled and grateful for your selflessness and bravery in doing so. Thank you, to those who’ve been there from the beginning and who remain here, steadfast in your support of those of us who arrived later. Giving of your time, your experience, your knowledge, but even more so, sharing of yourselves, personally and literally to help total strangers feel like long lost friends. You may never truly understand the impact you’ve had/have on those who’ve landed here. We come from different countries with different customs and life experience but with one common goal that unites us like family, stopping Hepatitis C, in all its types and manifestations from killing us, and to support each other in the battle however we can on this forum.
You, “old hands” and not so, “old hands” from what we here affectionately refer to as the, “land down under”, I’m sure you’re familiar with the term are among those who went before many of us, and I single you out because you are among the most supportive who post here. You are the “best of the best” IMHO .. and I want to express that to you personally. Thank ye from a Yankee!
Thank you for this forum, especially those who moderate it and work all of us through the “glitches” common to such technology and those that can only be attributed to the “human factor”. I’ve PM’d some of you my thoughts toward you, but let me publicly praise you all for your self sacrificing attitude toward this forum and your indispensable place here and in my heart. Your efforts here are one of the foremost reasons I was able to place my confidence in Dr. Freeman and Fixhepc. In no small way I owe you a debt of gratitude I can only repay in these words and in whatever way I can pay it forward by continuing to support your completely volunteer work here.
Done for now.Matt
GT1a; Got it some time in the 70’s; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA NOT DETECTED”13 August 2016 at 7:01 am #22156Great posts Matt. I just wanted to say that I don’t think it’s right for the Drs to deny you a 4 week (after) EOT test. Maybe you could make the pitch that many of us do that, it’s common & useful, and it would relieve your anxiety. Also, you did save the insurance co. about 90 grand so, a couple blood tests won’t break the bank. When my doctor asked me to wait for insurance to deny me, I had to remind him that I’d been waiting for 20 years for a chance to get cured. I didn’t want to wait for even one more week. And maybe he understood a little better. He’s been great about labs. Anyway, maybe you already pushed as hard as you think is wise but if not, maybe it’s worth a shot.
Cheers
3a for 35 years
Dx 1996, tx naive, ALT 46 AST 38 VL 140K
Started Sof/Dac 1/23/16
Kingswood generics AUS
2/19/16 4wk lab HCV Undetected ALT 14 AST 19
EOT 6/1/2016
TX was 18 wks (w/some 1/2 doses & 1 skip dose after 11 wks
while waiting for +6 wks to arrive)
SVR4 6/30/16
SVR12
SVR24 Redeemed13 August 2016 at 7:23 am #22157Matt – you have zero to worry about, you did it! Now just relax, pat yourself on the back and high five the air above you. I applaud you for taking had last pill, and you probably said “I did it” quietly to yourself, because you did. I commend you for taking your future into your own hands and leaving a trail for others to follow. Matt you did what you had to do and I expect nothing but greatness from you moving forward. I hear it in your written words, the future is nothing but blue sky now.
Contracted HCV 1980’s
Geno Type 1a
F3 ( doc says once treated I’ll be F2 maybe F1)
Meds shipped 6/17/2016 arrived early 7/2016Viral count – 3,471,080
4 week quantitative bloods: August 17, 2016. I have been diagnosed as <15 (told undetected)
8 week quantitative bloods: September 14th. I have been diagnosed as <15 (told undetected)
11 week PCR RNA Qualitative bloods: September 26th 2016 – Undetected
December 19th 2016: Cured!
Viral count: zero!!!
2018 viral count: still zero!
Cured!13 August 2016 at 7:29 am #22158Thanks MtG, that’s good advice and indeed it may become necessary to put it to use with my specialist, since he seems to think otherwise regarding what’s required, or the “norm” for EOT testing. Everything I’ve ever read says 4 and 12 weeks after EOT.
I’m waiting to hear back from the office per my request. I have a feeling I’ll get the 4 wk test as requested. If not I’ll order it myself and submit it to my insurance company myself with the reminders you’ve suggested concerning how much money I’ve saved them already.Thanks to you too Sven,
Very encouraging words from you. You’ve become a one man cheerleading section on the forum and I’m happy you’ve included me in your cheers.Matt
GT1a; Got it some time in the 70’s; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA NOT DETECTED”13 August 2016 at 2:46 pm #22162Welcome back and congratulations on a great lab result!! Those hundred or so leftovers have long since been destroyed. You have got this whipped!
I have been away as well, but working instead of relaxing. It happens every year at this time for a Fall sport coach and public school teacher. The only difference is this year that old coach is not sick.
What a year its been! I was waiting on word about Ledipasvir being available in India and planning a trip there at this time last year. Then the rumors started about Tasmania. I had to look it up on a map….
Crazy…..
m
Curehcvnow@gmail.com
http://forums.delphiforums.com/generichcvtxG 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 2413 August 2016 at 6:22 pm #22168Where there’s a will there’s a way, Matt.
My GI doc would only order tests per Gilead guidelines, and refused to order 8 week VL tests. In retrospect, she’s probably sticking her neck out to follow me in the first place and doesn’t want to rock the boat.
Another doc ordered the test for me, and long story short, I got 6 week, and 8 week VL tests (important for me, since I needed to know whether to extend tx, and EOT is too late to make that decision).
Good luck buddy. I have a feeling you’ll get it worked out. Anyone determined enough to have found FixHepC, and to have completed treatment with generic DAAs probably couldn’t be kept away from testing with a team of wild horses
14 August 2016 at 6:43 pm #22190Congratulations on getting UNDETECTED. Best Wishes for a youthful and healthy life from entire MonkMed Team!
14 August 2016 at 7:09 pm #22192Thanks for the thoughts MonkMed team … though a little premature …. I haven’t been tested yet, but maybe your speaking prophetically I sure hope so
Matt
GT1a; Got it some time in the 70’s; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA NOT DETECTED” -
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