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Author Topic: New to hep c hello  (Read 4418 times)

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Offline Thickandthin

  • Member
  • Posts: 12
New to hep c hello
« on: September 13, 2017, 10:48:32 PM »
  Hello everyone, just found out yesterday I tested positive for hep c in 2012. But the doctor told me my blood work was fine. Yes he did a hep c panel but for some reason he didn't tell me. I found out yesterday when I gained access to my medical records.
   Any way, was really hoping I could get some questions answered. If no one minds!
 I'm all the sudden dealing with mass anxiety, and some info may be useful in calming my nerves.
  I've been reading about it for 24 hours straight still awake fell asleep once for about a hour, but a bad dream woke me back up.
 Ok, so now with the questions!
1. Is it true that you have to qualify for treatment, if so how do You qualify, I'm on Medicaid?
2. What should I expect moving forward with treatment?
3. I have children how or what will affect them, should I just move out to insure thier safety?
4. How stupid am I for being scared and so strung out over it?
5. Is there any hope for, getting rid of it?
  Sorry everyone, just kinda freaked out.
Thank you for any information in advance.

Offline Thickandthin

  • Member
  • Posts: 12
Re: New to hep c hello
« Reply #1 on: September 14, 2017, 12:15:26 AM »
Ok, after reading some on the forum I have some answears? Still drawing a blank on how they say who gets treated and who don't?

Online Lynn K

  • Global Moderator
  • Member
  • Posts: 3,337
  • Get tested, get treated, get cured, fight Hep c!
Re: New to hep c hello
« Reply #2 on: September 14, 2017, 04:18:30 AM »
Everyone needs to be treated insurance companies have tried to prevent people from getting treatment unless they have liver damage but those rules are easing.

First have you had only the antibody test or have you had the test for the virus itself the HCV RNA by PCR test? About 25% of people who were exposed to hep c will develop antibodies but are able to beat the virus on their own without treatment.

If you have had the HCV RNA by PCR test you should have been told your viral load that is how many copies of the virus are in 1 mL of your blood.

You will also need a test to find out your genotype would be letters and numbers like 1a or 1b or 2a  or 2b etc... this will determine which of the treatments will work best for your specific genotype you are infected with. Then your doctor will prescribe an appropriate treatment and then you will learn if your insurance will approve your meds. If they do not approve there are many here who were able to fight and win treatment but first just go through the normal process and see what happens.

Also your doctor will need to do some type of testing to determine your fibrosis score which is how much liver damage you have would be between F0  no damage F1 minimal damage all the way to F4 liver cirrhosis.

So my questions are have you had the test for the hep c virus the HCV RNA by PCR test or similar that has a viral load? What is your viral load? Have you had the genotype test and what is your genotype? Have you had any abdominal ultrasounds to look at your liver? Have you had either a Fibrosure blood test, Fibroscan test using a machine which estimates liver stiffness or a liver biopsy to determine if you have any liver damage?

Also what kind of doctor are you seeing? Are they a hepatologist, a gastroenterologist or an infectious disease specialist experienced in treating hep c?

Anyway comeback with questions and we will try our best to answer.

Also get copies of your lab tests or if your doctor has online access like MyChart or similar.

Do you know your liver enzyme tests results? The test names are AST and ALT. People with hep c usually have slightly elevated above normal numbers for those tests.
« Last Edit: September 14, 2017, 04:22:44 AM by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline gnatcatcher

  • Member
  • Posts: 1,254
Re: New to hep c hello
« Reply #3 on: September 14, 2017, 05:11:36 AM »
Welcome, Thickandthin. Good questions, and fingers crossed that it'll turn out your only positive test was the one that says your immune system made antibodies to hep C, because that's not a problem, and it doesn't require treatment.

Lynn gave you great answers to your first couple of questions. As for the other ?s:
3. Just don't share your toothbrush, nail clipper, razor ... with anyone in case you occasionally cut yourself or have bleeding gums. (Even then, they are unlikely to catch it.)
4. If you DIDN'T get scared and strung out, I'd wonder if you're human.
5. If it turns out you do have active virus, today's medicines have almost 100% cure rates, and the few people who don't get cured on medicine #1 get a second med.

Best of luck to you.

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 9.4 kPa [F2-F3]
ALT 15
AST 20
ALP 85

Offline Mike

  • Global Moderator
  • Member
  • Posts: 989
Re: New to hep c hello
« Reply #4 on: September 14, 2017, 08:38:14 AM »
Hi Thickandthin,

Being diagnosed with HCV can cause a pleathra of emotions, which is a normal response that we all go though.

This is a great forum and, thorugh other's expereince and feedback, you can get many of your questions answered.

The one I think you need to hear first is: No. You don't have to move out and your kids will be just fine. HCV requires a blood-to-blood exposure to be transmitted, meaning it is very hard to pass on to others in your household without this type of exposure. You can still hug your kids, kiss your kids and do all the things you've done before. Simply put, you can be the parent you've always been.

The other thing to know is that HCV can be cured in a relively short time, with cure rates of 95%+. This is good news! This is the golden age for HCV treatment!

Best wishes, Mike
« Last Edit: September 14, 2017, 08:39:51 AM by Mike »
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Thickandthin

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  • Posts: 12
Re: New to hep c hello
« Reply #5 on: September 14, 2017, 11:35:43 AM »
Thank You, feel a little eased up today. Seen a doctor got the blood work done. So I'll find out tomorrow for sure. I seen a doctor for similar symptoms in 2012, he done blood work and told me I was fine it was normal, the only reason I found out was, I went back in to see him the other day. Same symptoms, I gave my email. So they sent a link to the patient portal.
  Well the doctor was really rude, so I politely said that he shouldn't be so rude and if he didn't care about my health to atleast act like he did, be professional. Told him I think I need to find a new doctor and left.
  I checked my email when I got home and had a summary of the days visit. So I was like cool, maybe I'll get some insight to his rudeness or atleast see if it carried through to his notes. Well he didn't write anything, but I noticed it said history, so I was like cool again I can see my medical history. When I clicked I seen it said that I had acute hep c onset 10/16/2012. I was like wow, why didn't this doctor bother to tell me that I had hep c. I was a little mad and probably could have handled the situation a little better. But I went up to talk to him. They said he was buisy that I need to make an appointment. So off the deep end I went, raised my voice a little louder than I should have. They asked me to leave, I told them to call the cops if they wanted me to leave. So they did! I told everyone in the waiting room why I was mad and how the doctor didn't even tell me I was sick in 2012. It got the doctors attention, he came out to try and calm me down.
  I waited for law enforcement and told them everything I apologized to everyone in the waiting room and recommended they find a new doctor. I didn't get violent just loud. All and all I said my piece and went home.
 Got a new doctor now blood work done today so I'll find out shortly more details!
I know I'm crazy could have handled it better.

Offline gnatcatcher

  • Member
  • Posts: 1,254
Re: New to hep c hello
« Reply #6 on: September 14, 2017, 01:12:22 PM »
Hi again, Thickandthin. As far as the "acute hep c onset 10/16/2012," you may have been one of the lucky people who had a strong enough immune system to cure yourself. The new tests will figure that out. Even if it turns out you have active virus, hep C usually does very little damage until a lot of years have passed, and even then (I had hep C for almost 44 years), it's amazing how well the liver can recover after treatment and cure.

You had quite a colorful way of dealing with the rude doctor. If you'd rather not handle similar situations as dramatically in the future, you can always vent your frustrations by posting them here.

BTW, it's possible you won't have all test results tomorrow. The one that measures how much active hep C is in the blood (the HCV RNA by PCR test or similar) can take up to a week if your local lab sends it out to a specialty lab.
« Last Edit: September 14, 2017, 01:17:33 PM by gnatcatcher »
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 9.4 kPa [F2-F3]
ALT 15
AST 20
ALP 85

Offline Thickandthin

  • Member
  • Posts: 12
Re: New to hep c hello
« Reply #7 on: September 14, 2017, 01:45:19 PM »
  I probably shouldn't have went off the way I did! But I'm very spontaneous and direct all he had to do was come out to begin with just so I could ask why he didn't tell me this to begin with. I would have just said your a lousy doctor explained how important health and life are to some people and walked out. No, but instead he told the nurse to tell me to make a appointment. 2 minutes that's all probably less, I talk fast. Anyway if that's true about my immune system beating it. I wonder why my feet are so itchy and I have so much fatigue and muscle/joint pain? Guess I'll be finding out soon.
  I'll be the first to admit I'm only kinda stable, but mostly when it comes to ethical standards in life. I believe all of us everyone that lives on this planet should do our very best to do what's right, even if it may not be exactly legal or a upstanding jester.
Sometimes what's right lays on a fine line of perception. Sometimes you have to cross that line.
  I just hope if I am positive, they approve treatment. If they don't they will very soon. I'm pretty sure that undermines my right to life liberty and the prusuit of happiness. And all those sleepless night I will endure will be dedicated to burning the insurance folks at the stake.
  I will contact everyone from the nonprofit organizations to the governor the president. Thier email will have no other email in it but the one I copy and past over and over and over again. I mean ever branch office and golf course.
  As a matter of fact I may just start doing that now!
Letting everyone I can know about thier stupid treatment and drug policy. If we all ebomb the with emails constantly, they will get so tiered of not getting thier emails for country club get togethers and golf tournaments. They will have to respond. And yes I might have lied about being kinda stable part. I'm a nut! LOL

Offline gnatcatcher

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  • Posts: 1,254
Re: New to hep c hello
« Reply #8 on: September 14, 2017, 04:35:33 PM »
. . . I just hope if I am positive, they approve treatment. . . .
These days, chances are good that an insurance company will approve treatment. Even in the bad old days, when many insurance companies had policies approving treatment only for the very sick, people on this forum explained how to get treated without having to go to war. In January of 2016, several major insurance companies made their policies much more humane, and things have continued to get better in that regard.

Even in the bad old days, caring doctors who specialized in treating hepatitis saw to it that their patients got approved somehow. Those of us who had hepatitis specialists who knew how to get their patients approved for treatment learned the tricks and passed them on here to forum members whose doctors were less experienced.

The trouble with an aggressive (as opposed to assertive) approach is that there can be "collateral damage": you'll make life miserable for people in the system who really do care and are trying their best to do what's right.

Yes, you'll find out soon whether you still have hep C. We can be with you every step of the way.
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 9.4 kPa [F2-F3]
ALT 15
AST 20
ALP 85

Offline Thickandthin

  • Member
  • Posts: 12
Re: New to hep c hello
« Reply #9 on: September 14, 2017, 08:23:43 PM »
Thank You, the doctor today done a hep panel and testing for RA and lupus. He felt my abdomen and said it didn't feel like my liver was enlarged or had inflammation. I don't know how many livers he's felt and couldn't tell you the difference. However, you never truely know how something feels till you have that something in your hand. You can go by explaination. But until you feel it you can never be 100% for sure.
  It's like looking at a picture of a apple, you know it's a apple but you can't tell how big the apple is in the picture. You can guess! But you never know unless you hold it.
  Sorry for my rambunctious attitude, I'm just chopping up air to keep from going crazy. Wait, never mind!!!

Offline gnatcatcher

  • Member
  • Posts: 1,254
Re: New to hep c hello
« Reply #10 on: September 14, 2017, 09:21:05 PM »
We have a lot in common. Before doctors knew much about hep C, I was having great fatigue and muscle/joint pain. They ran those same tests for me. I didn't have RA, but I had enough symptoms for a lupus diagnosis. My liver panel tests (AST, ALT, etc.) were in the normal range until I'd had hep C for around 30 years, and my liver felt normal whenever a doctor palpated it. That's why the HCV RNA by PCR test that looks for whether you have a viral load is important.

To make things still more confusing, hep C can mimic many other conditions. They call those imitation conditions "extrahepatic manifestations (EHMs) of hepatitis C." Here's some info: http://hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf

The medical scientists know there's a lot they don't yet understand about EHMs and autoimmune diseases and hep C.

-enjoyed your sense of humor in your last paragraph.
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 9.4 kPa [F2-F3]
ALT 15
AST 20
ALP 85

Offline Thickandthin

  • Member
  • Posts: 12
Re: New to hep c hello
« Reply #11 on: September 14, 2017, 11:48:25 PM »
I'm hoping for good news, not really expecting it but hoping none the less! I think this doc might be hoping for the same. I like him good guy. Hopefully it works out. Finally broke down and told my wife today. The strange thing is it didn't phase her at all. Like she didn't care! Or she's been down this road at some point, odd, really odd!

Offline gnatcatcher

  • Member
  • Posts: 1,254
Re: New to hep c hello
« Reply #12 on: September 15, 2017, 05:04:06 AM »
I'm hoping for good news, too.

Glad your new doc's a good guy. Mine too. Even the best doc sometimes has a bad day, though. Mine occasionally has "compassion fatigue" and often gets behind with the record-keeping and notifying patients of test results. He likes to allow one and a half hours for the annual physical and 30 minutes for a regular appointment (that's when he can be a true doctor), but the hospital system he works for forces him to see more patients. So the poor guy posts test results to the patient portals in the middle of the night.

Without seeing your wife's face and body language, I have no way of guessing what she's thinking and feeling. But I imagine she's generally not as dramatic as you've been the last few days. It's rare for a spouse to "catch" hep C -- mine didn't, even though we'd been married almost as long as I'd had hep C (decades!) when I found out I had it. Is your wife more introverted? If so, words don't come quickly when faced with a shock -- it takes a long time to process things (whereas for an extravert that processing can be done in a flash). While the introvert is silently doing that slow processing, it can seem to an extravert that the introvert doesn't care.

Anyway, you'll have results soon, when your wife will have had some time to digest the initial news. I hope the two of you can have a really good conversation then, along the lines of "Honey, how are you feeling about all of this?"
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 9.4 kPa [F2-F3]
ALT 15
AST 20
ALP 85

Offline Thickandthin

  • Member
  • Posts: 12
Re: New to hep c hello
« Reply #13 on: September 15, 2017, 05:46:24 PM »
She was cooler than a polar bears toenails. No shocked look, no worried look. And all the reading I done over the last couple of days, I realized that her eating habits and diatary habits are consistent with someone who is concerned about liver health. I never really gave it much thought, I thought she was just worried about weight gain.
 When I asked her if she ever had been tested for hep c, she got real defensive, so I backed off. I do know she's had IV drug use in the past she said she only done it a few times. And some other guy did it for her, this was 15 years ago before we met. I'm not saying if I got it I got it from her, but it may be a possible vector. 5 1/2 years ago we had a were in a car accident wreck we both were bleeding pretty bad. 3 months before I made the first doctor appointment because I was stiffer than a 2x4 and had a lot of joint pain fever.

Offline gnatcatcher

  • Member
  • Posts: 1,254
Re: New to hep c hello
« Reply #14 on: September 15, 2017, 07:37:16 PM »
You've been through a lot. No one here can be 100% sure how we each got hep C, so we've had to focus on what's most important right now. We can't change the past anyway.

#1: As Mike wrote, your kids will be just fine.
#2: You're going to be okay. You've got a doctor who is doing the necessary tests. If you need treatment, it's probably going to involve taking a pill a day for a while. Most people have no side effects or only mild ones.
#3: Your marriage can survive this if you want it to. I'm glad you knew to back off. Every marriage has its challenges, and it's the rare spouse who hasn't occasionally felt betrayed for one reason or another. To get over the rough spots, it helps to remember the qualities your wife had that caused you to fall in love with her in the first place. Chances are, at least some of those qualities were real (love isn't 100% blind) and are still there.

I speak as someone who's been married probably longer than you have been alive. I've needed to be forgiven, sometimes big time. In our golden years, we enjoy each other's company, including the X-rated stuff (in slo mo because of our aches and pains), more than we ever imagined possible. It's worth hanging in there through this rough patch if you can.

Every good wish,

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 9.4 kPa [F2-F3]
ALT 15
AST 20
ALP 85

Offline Thickandthin

  • Member
  • Posts: 12
Re: New to hep c hello
« Reply #15 on: September 15, 2017, 07:52:22 PM »
Yeah, jump to conclusions a lot. I got my hep panel back today. But it's says negative. I can't believe I'm in a group of people that are able to fight hep c that is less than 25% my white blood cell count was high. And I still feel like crap. The hep panel has a cut off range. So I'm guessing that is I've you have a low level infection it don't find it. I still think they are wrong. Not like I want to have it, but it's seems odd.

Offline Mugwump

  • Member
  • Posts: 628
  • According to my wife fishermen are aliens!
Re: New to hep c hello
« Reply #16 on: September 15, 2017, 09:05:48 PM »
Yeah, jump to conclusions a lot. I got my hep panel back today. But it's says negative. I can't believe I'm in a group of people that are able to fight hep c that is less than 25% my white blood cell count was high. And I still feel like crap. The hep panel has a cut off range. So I'm guessing that is I've you have a low level infection it don't find it. I still think they are wrong. Not like I want to have it, but it's seems odd.
With a quantitative hcv rna test the results should look something like this.
Virology
Hepatitis C
Specimen Description
Hepatitis C Virus RNA (PCR/NAAT)
Hepatitis C Virus RNA (PCR/NAAT)
Plasma
No HCV RNA
detected.
Not calculated

The assay is
quantitatively
accurate between
15 and
100,000,000
IU/mL.
 
Reference Range - Units
IU/mL
log10 IU/mL

These are the results of what I call my freedom PDF sent to my by the clinic I dealt with during Harvoni treatment.
Your results should indicate not detected and if they do it means that you do not have HCV.

FANFREAKIN' TASTIC 8) 8) 8) 8)

Just remember it is extremely easy to loose focus dealing with this f'in disease. What your results mean is that you cannot possibly infect anyone else and this is the most important part of the test results. And yes it seems that there might indeed be many more who have cleared the virus naturally than what is currently understood.

Be kind to your wife please and more so firstly be kind to yourself is the best advice that I can give especially when it comes to dealing with medical issues.

I know that being kind to others does little to advance ones political career but unless you are looking to become the president, being kind to others does wonders for your personal well being.

All the best

Eric
Freedom means not having to worry about having your new fishing bud offer to remove the fish hook he stuck you with when he blew his cast and the fly hit you in the head
https://www.hepmag.com/article/eric-reesor-27742-782589663
Below is a series of pictures of my Harvoni tx in action. DING DONG THE DRAGON IS DEAD!

Offline Thickandthin

  • Member
  • Posts: 12
Re: New to hep c hello
« Reply #17 on: September 15, 2017, 10:30:12 PM »
This is what it has on my file

NAME   VALUE   REFERENCE RANGE
F   HEPATITIS A IGM   NON-REACTIVE   NON-REACTIVE
F   HEPATITIS B SURFACE ANTIGEN   NON-REACTIVE   NON-REACTIVE
F   HEPATITIS B CORE ANTIBODY (IGM)   NON-REACTIVE   NON-REACTIVE
F   HEPATITIS C ANTIBODY   NON-REACTIVE   NON-REACTIVE
F   SIGNAL TO CUT-OFF   0.02   <1.00

Offline Thickandthin

  • Member
  • Posts: 12
Re: New to hep c hello
« Reply #18 on: September 15, 2017, 10:38:48 PM »
Oh, I'm pretty nice to my wife. Wish the dragon was nicer to me! I told her they said my hep panel was good she got kinda depressed. I love her she hates me! But it's ok I got enough for the whole family! It really sucks sometimes, knowing the only reason she's hanging around is for the sake of our kids. At least she loves them enough to let us be a family.
  I've been cheated on more than the IRS, called every name in the book. But I'm a gluten for punishment. Or a idiot! I'm still trying to figure that one out.

Offline Thickandthin

  • Member
  • Posts: 12
Re: New to hep c hello
« Reply #19 on: September 15, 2017, 10:44:29 PM »
Non reactive means it's negative for virus or antibodies. So something seems fishy, if the doc did blood work 5 years ago and said I had acute hep c, I should have antibodies, Right?
 Unless it was a mistake!

Offline gnatcatcher

  • Member
  • Posts: 1,254
Re: New to hep c hello
« Reply #20 on: September 16, 2017, 01:09:24 AM »
It could indeed have been a mistake. The HCV antibody test sometimes gives a false-positive result, and sometimes the lab makes a mistake. It's happened to a few people on these Hep forums.

Also, it used to be believed that once a person's immune system makes antibodies to HCV, the antibody test will always come back positive. Some recent studies show that that isn't always the case -- some people really do lose the antibodies, so even though they used to test reactive, they now test non-reactive.

Based on what's in your file, one or the other has happened to you. YOU DON'T HAVE HEP C! As Eric says, FANFREAKIN' TASTIC 8) 8) 8) 8)

I don't think they've invented tests yet to see if a person is non-reactive to rude doctors or unhappy spouses, but, hey, you're on a roll with this non-reactive stuff ;)  If the Buddha could learn to be non-reactive to all kinds of suffering, there's hope for the rest of us!
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 9.4 kPa [F2-F3]
ALT 15
AST 20
ALP 85

Offline MR 149

  • Member
  • Posts: 14
Re: New to hep c hello
« Reply #21 on: September 17, 2017, 06:01:54 PM »
  Hello everyone, just found out yesterday I tested positive for hep c in 2012. But the doctor told me my blood work was fine. Yes he did a hep c panel but for some reason he didn't tell me. I found out yesterday when I gained access to my medical records.
   Any way, was really hoping I could get some questions answered. If no one minds!
 I'm all the sudden dealing with mass anxiety, and some info may be useful in calming my nerves.
  I've been reading about it for 24 hours straight still awake fell asleep once for about a hour, but a bad dream woke me back up.
 Ok, so now with the questions!
1. Is it true that you have to qualify for treatment, if so how do You qualify, I'm on Medicaid?
2. What should I expect moving forward with treatment?
3. I have children how or what will affect them, should I just move out to insure thier safety?
4. How stupid am I for being scared and so strung out over it?
5. Is there any hope for, getting rid of it?
  Sorry everyone, just kinda freaked out.
Thank you for any information in advance.
Hi, first I totally understand your panic as I was also there. My rheumatologist did a HCV antibody test to give me a prolia shot for bones. Well it took her 4 wks to tell me. Boy was I upset I saw it on my computer but was not sure so got an earlier app. from 5 wks to 4. Won't be back to her. So then I went to gastroentologist. He ran tests that confirmed I was active. Then said " We are going to do a lot of tests and abdomen scan for liver damage, I am going to cure you" His assistant sent all the paper work in and he went through a special pharmacy, not the one I pick up other meds, they called and said I had been approved through aarp medicare plan. He said my co-pay would be $4000.00 a month. I told him my income was low last year being sick. He sent my income info to PAN Patient Access Network. They paid my full co-pay drug store said I have 0 co-pay. I also had your same thoughts how can I afford treatment. If you are active a good gastro doc and pharmacy you will get treated. There are organizations to help you. Don't send your family away  they are your support.
I was put on Harvoni for 12 weeks. The only side effect was some itching. This is a miracle drug. I am on my 5th week and doc called Friday I am clear NOT DETECTED
I am not married and do not have children so this forum has been my guiding light.
I also was sleepless over this; listen if you wake in  middle of night and want to write me through forum I will answer you. We are all here for each other.
Margot

Offline Thickandthin

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  • Posts: 12
Re: New to hep c hello
« Reply #22 on: September 22, 2017, 12:33:37 AM »
Hello me again, I just wanted to stop by and say thank you to all those who lent advice, didn't want anyone to think I just abandoned the forum being negative for have. Of wich I will add in not entirely convinced. Our state just legalized medical cannabis so I'm going out of state to be tested again.
  Maybe it's my over active imagination, but I think that they are not diagnosing hep c. I was talking to a friend that has chronic hep c and been dealing with it for about 6 years. He just went in to a doctor here as he just moved here from Ohio. They told him he was negative, he called his doctor from Ohio and had him send all his info to the new doctor. He said the doctor acted shocked that he had chronic hep c with a high viral load, but yet the test results showed him as negative. Our state is not diagnosing hep c. To cut a influx of people that have hep c that tested positive in the past but went untreated but now are trying to get medical cannabis.
  Dose anyone know who I can contact to have this looked into. I'm up to 3 people who know undoubtedly they are positive. But the Arkansas Medicaid program and health have told them they are negative. I will be in Mississippi this week getting retested if I'm positive what steps should I take?
   Thank You and I hope you all get better, praying for you.

Online Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: New to hep c hello
« Reply #23 on: September 22, 2017, 02:41:46 AM »
Hi

So I am just a bit confused. Are you saying you and your friend test positive for hep c antibodies but negative for the virus itself on the HCV RNA by PCR test?

Or are you saying you and your friend tested positive for the virus in the past with the HCV RNA by PCR test and are now being told you are negative for the virus on that same test?

People can test positive for antibodies but negative for the virus if the either they were able to beat the virus on their own or treated their hep c and were cured.

Would help me out if you could clarify which tests you are talking about.

If you and your friends were told you and they are not detected for the virus in Arkansas and subsequently test with the HCV RNA test elsewhere and have a viral load two thought come to my mind is either serious lad error or medical malpractice.

If you have proof of your not detected result in Arkansas and a later detected viral load on that same test that should be brought to the attention of your state medical board to find out what the heck is going on.

Do you have a copy of your negative HCV RNA test?

You have a right to copies of all your medical records that is your right as a patient although some doctor offices may charge to make you a copy which can add up if you have a large file.

Best of luck
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Online Lynn K

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  • Member
  • Posts: 3,337
  • Get tested, get treated, get cured, fight Hep c!
Re: New to hep c hello
« Reply #24 on: September 22, 2017, 02:46:10 AM »
Here is a link to the Arkansas State Medical board:

https://www.armedicalboard.org

https://www.armedicalboard.org/Professionals/pdf/mpa.pdf


Or is your concern the state is trying to deny medical marijuana requests for those with chronic hep c?

To me the greater concern would be not diagnosing people who have hep c and getting their hep c treated and cured with the relatively new DAA medicines like Harvoni, Epclusa and others. But in any event intentionally not providing information about positive viral load tests would be a serious violation of medical ethics and likely a felony.
« Last Edit: September 22, 2017, 02:52:28 AM by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Mugwump

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  • According to my wife fishermen are aliens!
Re: New to hep c hello
« Reply #25 on: September 26, 2017, 04:21:09 PM »
Here is a link to the Arkansas State Medical board:

https://www.armedicalboard.org

https://www.armedicalboard.org/Professionals/pdf/mpa.pdf


Or is your concern the state is trying to deny medical marijuana requests for those with chronic hep c?

To me the greater concern would be not diagnosing people who have hep c and getting their hep c treated and cured with the relatively new DAA medicines like Harvoni, Epclusa and others. But in any event intentionally not providing information about positive viral load tests would be a serious violation of medical ethics and likely a felony.
Having a medical system deny or falsify test results would require the cooperation of every single lab, clinic, medical practitioner and then in turn would require that all other out of state done tests be somehow hidden from the patients. Somehow I don't think you can corrupt an entire state's medical system even in a communist country without someone screaming bloody murder.

 Even though the US, and I speak as a Canadian, is undergoing an upheaval of conscience about a great deal of things there is no way that this sort of thing could happen without someone getting mad at the injustice and spilling the beans. Unless Arkansas has only one medical insurance provider and all the labs, clinics, hospitals, doctors and even the girl behind the desk are colluding there is no way that they could possibly be systematically falsify testing for HCV for segments of the populace.
Freedom means not having to worry about having your new fishing bud offer to remove the fish hook he stuck you with when he blew his cast and the fly hit you in the head
https://www.hepmag.com/article/eric-reesor-27742-782589663
Below is a series of pictures of my Harvoni tx in action. DING DONG THE DRAGON IS DEAD!

 


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