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Author Topic: Fear, anger and Thank You!  (Read 5637 times)

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Offline TexasKrysia

  • Member
  • Posts: 4
Fear, anger and Thank You!
« on: February 01, 2016, 10:39:13 pm »
Diagnosed in August because my arthritis doctor says lets just check to be sure...imagine my surprise when it came back positive for Hep C, since really could only have gotten it in 1974 during emergency splenectomy . Needless to say the more I read the more scared I became.

Angry that in the 40 years since I probably got infected I have had just about all of the symptoms...tired a lot of the time, but insomnia at night, thrombocytosis, hypothyroid, months of awful muscle/body aches to the point of tears when rolling over in bed. Way early menopause,  arthritis disfiguring hands and tons of spidery red splotches on chest and arms. Bloody nose and bleeding gums...and nobody thought to,do a hep c test...even the Mayo clinic didn't think to do a Hep c test.

First gastro dr applied twice to my insurance never mentioning anything but the number from hep c test (280,00 and f1-f2), they refused to resubmit again even after I asked to submit all other medical issues...found a new doctor with a miracle working patient advocate, started Harvoni mid November. Occasional headache, good energy days and bad energy days. And quick big weight gain 13 pounds on an already overweight person.

Positive changes so far, taking less thyroid meds cuz numbers were better, splotches on chest and arms barely noticeable.

At least the diagnosis made me feel better about feeling not so great all the time, at least I had a legitimate reason .

Thanks to all of you, reading your posts helped get me thru the worst times of fear and feeling sorry for myself. Hoping that I will be cured , but greatful that is have a place to turn either way, and connect with people who understand.

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Fear, anger and Thank You!
« Reply #1 on: February 01, 2016, 11:50:50 pm »
You will be cured Texas and the feeling is wonderful. Stay positive and be patient.....it's coming


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline KimInTheForest

  • Member
  • Posts: 1,970
  • Believe in yourself
Re: Fear, anger and Thank You!
« Reply #2 on: February 02, 2016, 12:49:43 am »
Welcome to the forums, TexasKrysia. And congrats on getting treatment. You are on your way to being cured. That changes everything. :)

kim
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 gnatcatcher

  • Member
  • Posts: 1,372
Re: Fear, anger and Thank You!
« Reply #3 on: February 02, 2016, 05:52:49 am »
TexasKrysia, wow, do we have a lot in common, starting from transfusions during a splenectomy! I'd unknowingly had HCV for over 3 decades when my HMO urged anyone who'd had a transfusion during the non-A non-B years to get tested. I had a lot of other Dx's by then but, because I thought I was symptomless (not realizing other things might be extrahepatic manifestations of HCV), I had told myself, "This is one thing I don't have." Wrong! The shock of the diagnosis quickly turned to anger at the medical system for putting me in this predicament, even though I knew they hadn't done it intentionally.

I'm glad you found a doctor with a good pt. advocate. Did that person let you know about the Gilead coupon that covers most of the copay?

Harvoni gave me quite the appetite, too. Fortunately, the extra energy it gave me cased me to work a lot of the extra eating off, so I gained very little during Tx, but I gained quite a bit more after Tx, since the appetite remained but not the extra energy. I've been able to hold a steady weight for the last month. A few other things have definitely improved, and I'm looking forward to finding out which of my other Dx's are actually EHMs. Please keep us posted on your progress -- you're already nearing EOT -- congratulations!

Gnatty
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 Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: Fear, anger and Thank You!
« Reply #4 on: February 03, 2016, 04:25:34 pm »
Congratulations on obtaining a new doctor and getting treatment!!! 
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline BillT

  • Member
  • Posts: 573
Re: Fear, anger and Thank You!
« Reply #5 on: February 03, 2016, 09:11:08 pm »
Hi Texas,
            Doctors can be irritating. :) That being said,now that you've found a good one keep them,and concentrate on getting through the treatment.I'm sure there's a lot of people that are walking around with it that don't know they have it because they haven't been tested for it.I know the tests are a bit expensive but I don't don't understand why it isn't standard as part of a physical every few years.Anyway welcome to the club and one of the best group of people you will ever find.All of us have been through this so if you need a question answered just ask.If you just need to unload do it.We all understand.The knowledge and support here is second to none.Good luck.
Contracted 1973 Military
Diagnosed 1980
Pegintron treatment 2004 unsucessful
Genotype 1b
FibroScan 10 (F2)
Start Viekira 10.17.2015

AST 40 ALT 69
VL 440k
10.31.2015/Week 2 Labs : AST 14/ALT 17
No VL done
10.14.2015/Week 4 labs : AST 14/ALT 14
VL UNDETECTED!!!
12.11.2015/Week 8 Labs : AST 12/ALT 13
No VL done
01.05.2016/EOT labs : AST 15/ALT 13
VL UNDETECTED!!!

12 WEEK SRV:UN-BLOODY DETECTABLE !!!!!!!!

24 WEEK SVR:UNDETECTABLE!!!! Thank You God.

Fibroscan 6Mo. Post Treatment 7.15.2016-5.3(F1)

Offline TexasKrysia

  • Member
  • Posts: 4
Re: Fear, anger and Thank You!
« Reply #6 on: February 08, 2016, 01:12:51 am »
Thank you all for your words of support...took my last Harvoni today!

Had a bit of a scare earlier this week , such severe bloody nose (accompanied by some pretty high blood pressure) that I couldn't stop it, got light headed enough to call an ambulance the first day, the second day called a friend for a ride to the ER. Saw a ENT doctor who said there was a blood vessel way back there that kept bleeding, cauterized several times and it appears to have fixed it.

Now hoping that the worst is over and looking forward to some happy test results.

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Fear, anger and Thank You!
« Reply #7 on: February 08, 2016, 08:58:27 am »
-sounds like you had a posterior nosebleed. They are indeed scary. In case you're wondering whether the Harvoni caused it, I had two posterior nosebleeds about 8 months before I started on Harvoni, and I haven't had one during or after tx. Congrats on finishing tx.

Gnatty
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

 


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