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Author Topic: The battle is finally over  (Read 13624 times)

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Offline drummerman

  • Member
  • Posts: 538
  • For those regarded as warriors....
The battle is finally over
« on: March 26, 2016, 09:56:48 pm »
Just got my 24 week post EOT results.  "HCV not dectected"!

Course the comedy of errors continued to the bitter end.

Went in 2 weeks ago for my blood draw and my regular nurse was not there.  Another nurse had to order my test...  I should have known when she said "I've never done this before".  And I did think that was weird , so I checked the order , and it look ok, but I did not check it as thoroughly  as I should of.  Went to pick up results a week later and fortunately looked at the results in my car before leaving and noticed the test was for HBV!  What an idiot nurse,  had to go back in and tell my good nurse who was now back, that they did the wrong test.  Not only that , they tested for the hcv antibodies, (not necessary).  Nurse was very apologetic and sent me back up for another blood draw and told me she would call my insurance company and let the know it was their error.  I was pretty pissed and hated to have to wait another week.  I mean all that nurse had to do was read my chart and then double check her test order with the doc.

Anyway, I got over it pretty fast,,... cause this entire 10 year ordeal has been one mistake after another.

Been through 3 docs. 
I chose this last one cause he was very compliant, but not at all totally involved.  If fact at my last appt. he told me I had made a good decision to wait on the new drugs... uh...what?  I did interferon and riba and was an nr you idiot.  Do you even look at my chart before you walk in.   Every time I saw him or nurse I had to tell them what week I was in.

He basically said I did not have to come an see him anymore... yay!  But suggested I get a pcr quant test every 5 years..(huh??).  And let me know i would always have the hcv antibodies... really!!!??? Duh!!! 

I learned early on that I had to double check everything I was told and to always assume that people were going to eff up everything and I would have to advocate for myself ..... it was exhausting.   Thank god it is over.

Sorry for the rant,   if any newbies read this.... please research everything your tx consists of ..... don't assume anyone knows what they are doing.   Double check everything.  Especially if you are not with a specialist.   Where I am located it is impossible to get with a specialist unless you have severe liver damage.   All the specialists are making big bucks doing transplants and don't have the time to take on patients like me.  Sad.

My doc did tell me he just back from some big liver convention in LA and that there are new treatments right around the corner that are even more effective than what I went thru (viekira), and the treatments are cheaper and only one pill!

Hope all of you are doing well...been a while since I have checked in.  Been dealing with depression but am feeling much better.  I think I was subconsciously worried that I would relapse.... but at 24 weeks UND,  I am now accepting that I am cured!!

dm
Logged
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: The battle is finally over
« Reply #1 on: March 26, 2016, 10:01:37 pm »
Wow dm, at least you had some good news in there! How were your other numbers? So pleased you've made it. Me, I'm still waiting on my 24 week test results. The longer I wait for them the more anxious I am getting!!
Logged
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline drummerman

  • Member
  • Posts: 538
  • For those regarded as warriors....
Re: The battle is finally over
« Reply #2 on: March 26, 2016, 10:36:54 pm »
Quote from: Philadelphia on March 26, 2016, 10:01:37 pm
Wow dm, at least you had some good news in there! How were your other numbers? So pleased you've made it. Me, I'm still waiting on my 24 week test results. The longer I wait for them the more anxious I am getting!!

AST 19
ALT 21

I'll take it!  :D

Hope I don't sound like I am bitching too much... its just been a long frustrating trip... but a least the tx worked and I am thrilled about that.  Realistically I should not have even been considered for the the meds since  I had little liver damage and was quite surprised when I was approved.  I called the advocate nursed that went to bat for me and raised hell to get these meds for me.  She was so glad I called and said calls like that make her day.  She didn't even work for the company that was getting the meds for me (Acreedo)....

 
Logged
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: The battle is finally over
« Reply #3 on: March 26, 2016, 10:54:52 pm »
Nice! That dragon is deceased!

Oh and how's your HBV looking? ;)
Logged
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline Mugwump

  • Member
  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: The battle is finally over
« Reply #4 on: March 27, 2016, 04:45:14 am »

I have had a little follow up foul up too, the other day I got another call for another ulra-sound. It would have been the 3rd in 2 months. So I got the clerk on the other end to check to see if there had been a problem with the one that I just had or something similar.


It seems that there is an overload and our medical system is under a little bit of strain causing more errors in communications because of the rapid increase numbers of tests being ordered regarding HCV treatments.


Much to my relief there were no red flags on the last ultra-sound report.


Keep on bangin' them skins Drummerman!

Logged
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline drummerman

  • Member
  • Posts: 538
  • For those regarded as warriors....
Re: The battle is finally over
« Reply #5 on: March 27, 2016, 09:21:41 am »
Quote from: Philadelphia on March 26, 2016, 10:54:52 pm
Nice! That dragon is deceased!

Oh and how's your HBV looking? ;)

I am pleased to say I do not have HBV.


dm
Logged
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline drummerman

  • Member
  • Posts: 538
  • For those regarded as warriors....
Re: The battle is finally over
« Reply #6 on: March 27, 2016, 09:22:53 am »
Quote from: Mugwump on March 27, 2016, 04:45:14 am
I have had a little follow up foul up too, the other day I got another call for another ulra-sound. It would have been the 3rd in 2 months. So I got the clerk on the other end to check to see if there had been a problem with the one that I just had or something similar.


It seems that there is an overload and our medical system is under a little bit of strain causing more errors in communications because of the rapid increase numbers of tests being ordered regarding HCV treatments.


Much to my relief there were no red flags on the last ultra-sound report.


Keep on bangin' them skins Drummerman!

Sorry to hear about your mixup....its common,...

dm
Logged
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: The battle is finally over
« Reply #7 on: March 28, 2016, 03:35:33 pm »
DM,

First congrats on svr24!  I have always thought of it as the real McCoy.  Ironically (or not), last week I was awaiting (nervously and impatiently) my own SVR 24.  Low and behold when they came through I down loaded on my smart phone (small screen) and the VL part looked weird (showed <20 and zero 'undetected') so I went to bed feeling strange about the results.  Woke up in a lather of anxiety, went to my comp (full screen) and downloaded the results.  They had tested me for HIV, which apparently I don't have (like you don't have HBV) which is good right? but dagnabbit I still don't know if I am clear of HCV.

Anyhoot...I went and got more bloods and the results in 2 business days.  The final results?

Undetected!!!!!! Ast/ALT 19 and 18.  woooohooo!!! we cleared.  This is the first post on this.  I really have worried more about this one.  When the results popped up on the screen my well trained eyes darted directly to the "undetected".  That shit is hard on the heart.  Hee hee. 

Party at Brees!!  Last one in the pool is a rotten egg!!  Cannon balllll!!!  ;D
Logged
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: The battle is finally over
« Reply #8 on: March 28, 2016, 03:40:43 pm »
Happy Day!!!!!! If you feel like celebrating and sharing hope, consider telling your Hep Story https://www.hepmag.com/category/hep-stories Enjoy your new freedom!
Logged
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline drummerman

  • Member
  • Posts: 538
  • For those regarded as warriors....
Re: The battle is finally over
« Reply #9 on: March 28, 2016, 08:52:13 pm »
Quote from: beto on March 28, 2016, 03:35:33 pm
DM,

First congrats on svr24!  I have always thought of it as the real McCoy.  Ironically (or not), last week I was awaiting (nervously and impatiently) my own SVR 24.  Low and behold when they came through I down loaded on my smart phone (small screen) and the VL part looked weird (showed <20 and zero 'undetected') so I went to bed feeling strange about the results.  Woke up in a lather of anxiety, went to my comp (full screen) and downloaded the results.  They had tested me for HIV, which apparently I don't have (like you don't have HBV) which is good right? but dagnabbit I still don't know if I am clear of HCV.

Anyhoot...I went and got more bloods and the results in 2 business days.  The final results?

Undetected!!!!!! Ast/ALT 19 and 18.  woooohooo!!! we cleared.  This is the first post on this.  I really have worried more about this one.  When the results popped up on the screen my well trained eyes darted directly to the "undetected".  That shit is hard on the heart.  Hee hee. 

Party at Brees!!  Last one in the pool is a rotten egg!!  Cannon balllll!!!  ;D

Thats cool Beato!  I was really worried about the 24 week mark as well.  Still hard to believe.    Also nice to know you don't have HIV and I don't have HBV!  lol.

dm
Logged
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline drummerman

  • Member
  • Posts: 538
  • For those regarded as warriors....
Re: The battle is finally over
« Reply #10 on: March 28, 2016, 08:53:03 pm »
Quote from: lporterrn on March 28, 2016, 03:40:43 pm
Happy Day!!!!!! If you feel like celebrating and sharing hope, consider telling your Hep Story https://www.hepmag.com/category/hep-stories Enjoy your new freedom!

Thanks Lucinda!  Will consider posting my story.  Lots going on now.... trying to retire!

dm
Logged
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Rosie13

  • Member
  • Posts: 297
Re: The battle is finally over
« Reply #11 on: March 29, 2016, 01:25:29 am »
Can I get a drum roll for the drummerman? You are all done YES!!!! I just love reading all the posts before I lay down to smile my way to sleep! You have been a big support all of my journey so happy you can relax now & have some fun! No Worries...fire that damn Dr.!
Logged
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline drummerman

  • Member
  • Posts: 538
  • For those regarded as warriors....
Re: The battle is finally over
« Reply #12 on: March 29, 2016, 08:42:58 am »
Quote from: Rosie13 on March 29, 2016, 01:25:29 am
Can I get a drum roll for the drummerman? You are all done YES!!!! I just love reading all the posts before I lay down to smile my way to sleep! You have been a big support all of my journey so happy you can relax now & have some fun! No Worries...fire that damn Dr.!

Thanks Rosie!
Don't have to fire doc cause he said I no longer have to see him!
Good luck on your 24 post eot!

dm
Logged
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: The battle is finally over
« Reply #13 on: March 29, 2016, 08:46:48 am »
 Hey DM! How are You feeling over all health wise theses days?
Logged
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline drummerman

  • Member
  • Posts: 538
  • For those regarded as warriors....
Re: The battle is finally over
« Reply #14 on: March 29, 2016, 08:51:12 am »
Quote from: slats1056 on March 29, 2016, 08:46:48 am
Hey DM! How are You feeling over all health wise theses days?

Pretty good.  Overall joint pain is gone.  Depression is better.

Just feeling old.  The tx left me pretty worn out.  but feeling a little better each day!
thanks for asking!

and you?

dm
Logged
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: The battle is finally over
« Reply #15 on: March 29, 2016, 09:01:01 am »
  Still having a lot of joint and back pain. Been going to Chiro. & PT for back and neck, seems to be helping. A few headaches now and then but not crankers like on Tx. Fatigues sets in mid afternoon. Hard to separate Sx. from old age though! LOL! Overall been pretty good most of the time. Sleep is greatly improved. General Malaise and brain fog has cropped up the last couple of weeks. Have chosen not to do anything Pharmacological for a while until things get back on an even keel. :)
Logged
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline drummerman

  • Member
  • Posts: 538
  • For those regarded as warriors....
Re: The battle is finally over
« Reply #16 on: March 29, 2016, 09:32:13 am »
Quote from: slats1056 on March 29, 2016, 09:01:01 am
  Hard to separate Sx. from old age though! LOL! Overall been pretty good most of the time. Sleep is greatly improved.

I hear ya!

dm
Logged
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Rosie13

  • Member
  • Posts: 297
Re: The battle is finally over
« Reply #17 on: March 29, 2016, 01:24:52 pm »
There's TOMMY! Glad you are getting better here & there. I still have some energy issues too but decided to get motivated later in the day & still get stuff done  just not right away! It's working for me so far! Happy Spring!
Logged
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!
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