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Author Topic: It took ten years but the battle is finally over for me.  (Read 10444 times)

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Offline drummerman

  • Member
  • Posts: 538
  • For those regarded as warriors....
It took ten years but the battle is finally over for me.
« on: March 26, 2016, 09:59:30 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 slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: It took ten years but the battle is finally over for me.
« Reply #1 on: March 26, 2016, 10:16:15 pm »
 Great news DM! Glad to hear from You.  Comedy of errors is an understatement. It is so annoying that so called highly trained people can be so inept! Good to know Your depression is getting better. Hope You are feeling better also. Again , great to hear from You! Keep on getting better.
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 Flaco

  • Member
  • Posts: 56
Re: It took ten years but the battle is finally over for me.
« Reply #2 on: March 26, 2016, 10:26:31 pm »
And I was about to rant about these phlebotomists who invariably, and I mean every. single. time, go for the smallest vein they can find when I obviously have a firehose running along the inside of each elbow. At least they are correctable when I give 'em the old BRRRT "wrong" buzzer, so not a huge deal.

It's been a nightmare for you, bud, but you're done! Best of luck to you in your "new life."  8)
« Last Edit: March 26, 2016, 10:32:53 pm by Flaco »
Logged
Best Regards,
Jack

Diag 2001
Failed PEG-int/Riba 2002, 48 wks.
2015-16:
F4 compensated
VL 14.7 million
GT 1A
Alkaline Phosphatase(37-127 U/L): 12/23/15 216; 1/14/16 152; 1/29/16 103; 3/18/16 68; 4/1/16 70
SGPT (ALT) (15-78 U/L) 12/23/15 862; 1/15/16 753; 1/29/16 518; 3/18/16 48; 4/1/16 28
SGOT (AST) (9-44 U/L) 12/23/15 283; 1/15/16 226; 1/29/16 165; 3/18/16 24; 4/1/16 19
Start Harv 24 wks. 3/4/16
Undetected 2 weeks into Tx
Liver&metabolic nos. steadily improving since start TX
EOT 8/18/16

Offline drummerman

  • Member
  • Posts: 538
  • For those regarded as warriors....
Re: It took ten years but the battle is finally over for me.
« Reply #3 on: March 26, 2016, 10:39:04 pm »
Quote from: slats1056 on March 26, 2016, 10:16:15 pm
Great news DM! Glad to hear from You.  Comedy of errors is an understatement. It is so annoying that so called highly trained people can be so inept! Good to know Your depression is getting better. Hope You are feeling better also. Again , great to hear from You! Keep on getting better.

thanks Tommy!
Looks like you are coming up on your 24 weeks.  Sending good vibes your way!
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 KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: It took ten years but the battle is finally over for me.
« Reply #4 on: March 26, 2016, 10:44:47 pm »
Fantastic news drummerman! Congrats on your SVR24! :)
Logged
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline drummerman

  • Member
  • Posts: 538
  • For those regarded as warriors....
Re: It took ten years but the battle is finally over for me.
« Reply #5 on: March 26, 2016, 10:48:35 pm »
Quote from: Flaco on March 26, 2016, 10:26:31 pm
And I was about to rant about these phlebotomists who invariably, and I mean every. single. time, go for the smallest vein they can find when I obviously have a firehose running along the inside of each elbow. At least they are correctable when I give 'em the old BRRRT "wrong" buzzer, so not a huge deal.

It's been a nightmare for you, bud, but you're done! Best of luck to you in your "new life."  8)

thanks Flaco!




I got to where I knew who the good techs were and who the bruising techs were.  And I let the good ones know that they were my favorites.
I had so many blood draws over the 10 years that I developed some theories.
1. )  There are different gauge needles.  Some of the techs go for the big gauges.... faster but more likely to bruise.
2.)  Some of the techs go through the top vein wall and then pass through the bottom vein wall and then start pulling back until it registers.  The extra (unnecessary) hole results in a bruise.

3.) the good ones had me squeeze a ball or something rubbery to pump up the veins.

These are just two of my theories and I wish I had talked to some of them about this... but I was always too busy counting the the little dots in the ceiling tiles.  lol.

Any nurses or blood drawers out there with insight or am I way off base on this.  I just hated to bruise as I did not want my students to think I was a IDU and many times it was too hot to go long sleeve.

dm
« Last Edit: March 27, 2016, 09:24:35 am by drummerman »
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: It took ten years but the battle is finally over for me.
« Reply #6 on: March 26, 2016, 10:49:06 pm »
Quote from: KimInTheForest on March 26, 2016, 10:44:47 pm
Fantastic news drummerman! Congrats on your SVR24! :)

thanks Kim!

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 gnatcatcher

  • Member
  • Posts: 1,372
Re: It took ten years but the battle is finally over for me.
« Reply #7 on: March 27, 2016, 05:18:05 am »
Well-deserved, dm! Your words and Uma's face have done a lot for us, both in the righteous anger dept. and in the crucial reminder to check everything. (Twice, my hepatologist clearly hadn't read my chart carefully before coming in for those precious ten minutes. The earlier time could have caused me grave harm, so I stayed away for 11 years, getting my PCP to supervise the watchful waiting, until Harvoni came along.)

The really small-gauge needles that are called butterfly needles cost the lab more, but you might ask for them and explain why -- you just might be accommodated. OTOH, I once had a brawny man for a phlebotomist, he used a standard-gauge needle, and there was absolutely no bruising.
Logged
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline drummerman

  • Member
  • Posts: 538
  • For those regarded as warriors....
Re: It took ten years but the battle is finally over for me.
« Reply #8 on: March 27, 2016, 09:28:01 am »
Quote from: gnatcatcher on March 27, 2016, 05:18:05 am
Well-deserved, dm!
The really small-gauge needles that are called butterfly needles cost the lab more, but you might ask for them and explain why -- you just might be accommodated. OTOH, I once had a brawny man for a phlebotomist, he used a standard-gauge needle, and there was absolutely no bruising.

thats what I thought! different gauges!

thanks for the info.  Hopefully my blood draw days are over.

Funny thing is...my veins are huge!  The bruising didn't hurt... I just hated the way it looked.

Uma is the bomb.  Beatrix's face is the way I felt dealing with the constant screw-ups.  Hate to sound ungrateful....I am cured!  But it was absolute one screwup after another.  Amazing that with such an expensive treatment that there was such a lackadaisical attitude.

dm
« Last Edit: March 27, 2016, 09:37:14 am by drummerman »
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: It took ten years but the battle is finally over for me.
« Reply #9 on: March 27, 2016, 09:29:10 am »
 8)
« Last Edit: March 27, 2016, 09:36:34 am by drummerman »
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
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