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Author Topic: I've been in denial/now I'm scared.  (Read 5701 times)

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Offline CharlieM

  • Member
  • Posts: 8
I've been in denial/now I'm scared.
« on: June 05, 2015, 02:41:16 pm »
Diagnosed 10 years ago, 1a, high viral load, stage 2.  LFTs barely elevated - it was a fluke my pcp even picked up on it.  Been sober for decades,running marathons, feeling good, so just went on living, avoiding trans-fats, blah blah.  My wife kept an eye on the new treatments, and I've been feeling smug about waiting.  Two weeks ago, a killer pain under my right rib, thought it was a stitch or pulled muscle.  Wife says, you know you should go to PCP and ask for referral back to that GI, we can talk about treatment now.  Well, PCP ALARMED about the pain, AND the LFTs in the triple digits, viral load 6.5 mil.  Now wife, freaking out, had an ultrasound this AM, no results till next week.  Not feeling so smug anymore, worried I waited too long.....  I'm 57, been feeling run down, but still going, just figured it was age.

Has anyone else had right rib pain that was part of stage 2 or 3 fibrosis, but not terminal?   Trying hard to not think the worst here, but can't seem to get a real fix on what I might be looking at.

Best of all to all of you.  Glad I found this forum.  Thank you.
Diagnosed 2005,
Acquired virus @ 1977
VL @ 2million
F3
treatment naive
Began Harvoni on 10/2
4 week SVR Undetected!!!!
appealing insurance for 12 weeks vs. 8.

Offline KimInTheForest

  • Member
  • Posts: 1,939
  • Believe in yourself
Re: I've been in denial/now I'm scared.
« Reply #1 on: June 05, 2015, 03:29:09 pm »
Hi Charlie. I wouldn't worry too much about any of these recent developments you describe. Many of us have been living (at least intermittently) with those conditions you describe for years and even decades, and are still functioning, and still able to benefit fully from the cure now that it is finally here. I also don't think you were necessarily in denial. Many of us have been deliberately waiting for years or decades for a better treatment to come along - something that is all-oral, has high success rate, and comparatively low side effects. I have been waiting for 20 years, since being diagnosed in 1995.

I have had HCV for 40+ years and am now Fibrosis Stage 2 or 3 (depending on which fibroscan you want to believe) - which in theory is reversible once I am cured.

So, DO follow-up with your GI, get the results of your ultrasound, and discuss treatment options. The good drugs we have been waiting for are here. Do what you can to get started on one of them. Many of us are doing it through clinical trial, so that is always an option. It is the only way I would have been able to get Harvoni into my body at this time. And I am very happy I am doing it.

best to you. And keep us posted on your news.
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 CharlieM

  • Member
  • Posts: 8
Re: I've been in denial/now I'm scared.
« Reply #2 on: June 05, 2015, 04:04:22 pm »
Thank you for your kind and reassuring words!!!  Since I have no point of comparison, I can slip into a dark place. 

It's a miracle to believe I might really be able to get rid of this thing!  That many of us can!   

And I hope your recovery is also going well and strong.
Diagnosed 2005,
Acquired virus @ 1977
VL @ 2million
F3
treatment naive
Began Harvoni on 10/2
4 week SVR Undetected!!!!
appealing insurance for 12 weeks vs. 8.

Offline Mike

  • Global Moderator
  • Member
  • Posts: 993
Re: I've been in denial/now I'm scared.
« Reply #3 on: June 06, 2015, 09:46:28 am »
Hep-C seems to wax and wane, attacking the liver in spurts. The pain in the right side (next to the short ribs) was most likely liver inflammation, which puts pressure on the abdominal cavity that can cause this type of pain, as well as low back pain.

I've experienced this, off and on for decades (I thought it was due to an old sports injury when I sprained my right short ribs).

It wasn't. It was due to HCV liver inflammation.

I've been virus free for 1 year and the rib pain is gone (but not forgotten).

I was an F2 at biopsy, with grade 2 liver inflammation.

I would encourage you to move forward with treatment and, once cured, this type of pain will be gone forever!

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: I've been in denial/now I'm scared.
« Reply #4 on: June 06, 2015, 10:16:21 am »
Viral loads wax and wane. My liver markers were pretty high (see sig below). I'm still standing, working, having treatment and best of all, here.

I'm a glass half empty person too, so I know where you are coming from, nothing I say will really help in the long run, so you just have to breathe and find the best way through this for you.

Start treatment, get moving on it now, this is our time!
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 CharlieM

  • Member
  • Posts: 8
Re: I've been in denial/now I'm scared.
« Reply #5 on: June 08, 2015, 08:17:43 am »
Philly, Mike and KimIn.  Thank you all for your responses.  Really helpful in getting my head back on right!

Should get ultrasound results today or tomorrow, GI appt. sched on July 6. 

Wow, Mike virus free for a year!  Philly and Kim, I'll be interested in hearing how treatment goes for you and sending prayers and good wishes.

This is a miracle.
Diagnosed 2005,
Acquired virus @ 1977
VL @ 2million
F3
treatment naive
Began Harvoni on 10/2
4 week SVR Undetected!!!!
appealing insurance for 12 weeks vs. 8.

Offline brotherjoeg

  • Member
  • Posts: 7
Re: I've been in denial/now I'm scared.
« Reply #6 on: June 11, 2015, 10:39:38 am »
Hey Charlie M!!
 When I was tested for the virus 10 yrs ago I was given about five yrs to live. At that time I thought all was lost. Wanted to crawl in a ditch and well watch the blue sky's turn to gray. I did the interferon treatment didn't work so really went into isolation(2000). Kind of said to myself oh well, wondering when the end would come. The last few months(2015) have really been difficult and have been displaying the emotional signs of Hep C.  I am now on HARVONI AND RIBAVIRIN,
hoping it will work. But having doubts and living with the virus for so long it is sometimes easier to live with gloom cause I know what that is and it sometimes became a friend to me, so the thoughts of impending doom would not be so difficult to handle. Cause in the beginning every thing was new to me, hope, trust, believing and most of all faith.
Hang in there and most of all share with your wife, she sometimes will be your only support and helper. When the dust settle's she will be by your side, and you will find the new road we travel is even more exciting then the one we left, leave, behind. Maybe now when you run your race the distance is not the important thing, but rather the destination will be the feather in your hat.

 


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