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Author Topic: New diagnosis  (Read 53636 times)

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Offline Lu

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  • Posts: 30
New diagnosis
« on: January 07, 2015, 09:35:52 am »
I was just diagnosed with hep C yesterday.  My question is, the lab report show my hep C virus antibodies are 11, but says the reflex test should be done for s/co ratios between 1.0 and 10.9.  Does that mean I don't need a reflex test to confirm viral load?  Hope that makes sense, don't really know what I'm talking about.

Thanks for being here.  It really helps to have people to talk to. 

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: New diagnosis
« Reply #1 on: January 07, 2015, 02:19:03 pm »
Hi Lu

Testing positive fir the hep c antibody only means you were once exposed to the hepatitis c virus. About 25% of people are able to beat hep c on their own. They don't have hep c but will always test positive to the antibody.
The only way to know if you are currently actively infected with hep c is to have the HCV RNA test to see if the virus itself is circulating in your system.

Not sure what you are describing and always your best option is to ask your doctor.

Good 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!

Offline Lu

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  • Posts: 30
Re: New diagnosis
« Reply #2 on: January 08, 2015, 08:15:42 am »
Thank you!  This is all so new to me, I don't really know what I'm describing either.  I wish my doctor had given me the info that you have given me.  He's giving me a referral to an infectious disease doctor where I'll get further testing, I guess.  But thanks for your reply, that makes me feel better.

Offline Mike

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  • Posts: 999
Re: New diagnosis
« Reply #3 on: January 08, 2015, 12:07:34 pm »
That CDC recommends that a reflex test be done to confirm a positive HCV finding. This will involve a PCR test which will confirm the actual presence of the HCV virus and will identify the genotype (which is important in making treatment decision).

You will also need a qualitative HCV RNA test which will determine your viral load (number of virus present in you blood) which is also important in making treatment decisions.

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

Offline Lu

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  • Posts: 30
Re: New diagnosis
« Reply #4 on: January 08, 2015, 12:59:58 pm »
Thank you, Mike.  I've learned a lot already but I'm still finding my way around this.  I suspect I was exposed to hep c by my ex-husband, as he shot up drugs during his stint in Vietnam.  That's the only thing I can think of.  I did drugs many, many years ago but not with needles and have never had a transfusion.  I guess it doesn't really matter where it came from.

Even if I am actually infected and not just an exposure, I'm thinking seriously of not having any treatment involving Interferon with all its side effects.  I gather that I could live quite a long time with the status quo.  If not, so be it.  I'm 59 years old, have had a good life, and I'd rather enjoy the rest of it to the fullest than endure a miserable treatment regimen that may not even work.

But this is all way premature.  I'm not going to dwell on it until I have more facts and info on prognosis, which could be a few months down the road, from what I gather.  My doc referred me to a gastro next month, who will refer me to an infectious disease doctor, and who knows how long the testing will take after that.
The wheels turn slowly.

Anyway, thanks again for the info.  Anything you can tell me helps.

Offline Nolurt28

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  • Posts: 4
Re: New diagnosis
« Reply #5 on: January 08, 2015, 03:18:26 pm »
How long did the reflex results take to come back? I tested positive for antibodies and went back for them to take more blood samples and am waiting for the followups test results. It's driving me nuts. I just want to know.

Offline Mike

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Re: New diagnosis
« Reply #6 on: January 08, 2015, 04:49:47 pm »
The test results can take 3 days to 2 weeks. It depends on where you live. We have a lab that can run the tests in my city so the results come back fast. If they have to be shipped out - it can take longer.

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

Offline Nolurt28

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Re: New diagnosis
« Reply #7 on: January 08, 2015, 05:01:52 pm »
Thanks,
Sorry to high jack the thread.

Ugh up to 2 weeks... Well I guess I should just calm down and settle in for the long haul. Ha everything about HCV seems to take forever. Trying to figure out when the best time to tell my girlfriend who lives with me. I was thinking of waiting for the RNA results but if it could take that long I may tell her sooner. I just didn't want to get her worked up if it's a false positive (crossing fingers).

Offline Mike

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Re: New diagnosis
« Reply #8 on: January 08, 2015, 06:56:22 pm »
Some will disagree, but if it were me - I'd wait for the confirmation.

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

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: New diagnosis
« Reply #9 on: January 09, 2015, 04:24:20 am »
Hi Lu

I am 56 and have likely had hep c for 37 years and cirrhosis for 7 years.

If you have had hep c that long you could also have liver damage. The new treatments are nothing like the old ones. For me I am taking Harvoni for 24 weeks and it isn't any different for me than taking a vitamin just maybe a mild headache or 2 that's about it.

Also if you do have liver damage going on I just want to say that end stage liver disease is a hard death and I personally am doing my best to go out some other way than that.

Once you know your genotype you will know what treatments there are and can go from there. For me though honestly if interferon were offered to me and had a good chance of working (which for me it does not) I would do it again in a second.

Good 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!

Offline Lu

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Re: New diagnosis
« Reply #10 on: January 09, 2015, 08:52:51 am »
Thanks, Lynn.  Assuming I got it from my husband, it could be as long as 30 years for me.  I'd take Harvoni in a heartbeat, but doubt my insurance would pay for it.  I read so many negative things about the side effects of Interferon, I'm very afraid of it.  Did you have a different experience?  I can't believe my hep C can be very far advanced, I feel great and am symptom free.  My AST is 48, ALT is 46, which doesn't seem all that high to me.  On the other hand, what do I know.

Thanks for your help!  I appreciate everything you can tell me.

Offline Nolurt28

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Re: New diagnosis
« Reply #11 on: January 09, 2015, 11:28:51 am »
I would at least try to get Harvoni. I believe Gilead has assistance programs in place. Considering its efficacy I don't see the point in not persistently pursuing it.

Offline Lu

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Re: New diagnosis
« Reply #12 on: January 09, 2015, 11:42:38 am »
Yes, you're absolutely right.  I have to see what my options are when I get to that point, probably a couple months from now.  The waiting will be hard. 

Thanks!

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: New diagnosis
« Reply #13 on: January 10, 2015, 12:11:49 am »
Hi Lu

Liver function results have no correlation to extent of liver damage. My test before I started treatment was ALT 78 and AST 54 and I have had cirrhosis for 7 years with edema and had to have esophageal varicies banded 3 years ago. The varicies are due to my liver damage and resulting portal hypertension.

I think of damage from cirrhosis like a slowly simmering pot of water on the stove. The water may not be very hot but it is evaporating over time faster than without the heat.

Some have high liver function tests and minimal liver damage and some have even normal liver function tests with extensive damage. The only way to know how much damage your liver has is either a liver biopsy or a fibroscan test.

When I did interferon I had the advertised "flu like symptoms" felt like I was just getting over the flu for 6 months was not super fun but I survived but unfortunately so did the virus.

Anyway good luck to you
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 BattleTheBeast

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  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: New diagnosis
« Reply #14 on: January 10, 2015, 02:02:14 am »
Hi Lu,

I am 56 almost 57, recently diagnosed and in treatment. I am 1a with cirrhosis and there is no way in heck I would just let this disease progress without fighting it. I was hit like a freight train in May 2014 with a ton of symptoms and felt like I was under the train for many many months. I am now slowly crawling out from under it. i personally wish I had known sooner and had the opportunity to try and fight it before I got sick. 

I highly recommend getting treatment, whatever it takes, whatever you can get. You do not want to wait for cirrhosis to show it's ugly side or end up with Liver Cancer because you were worried about side effects. The latest and greatest medications are very easy to take with minimal symptoms.

Just my 2 cents for what it's worth

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Lu

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  • Posts: 30
Re: New diagnosis
« Reply #15 on: January 10, 2015, 08:03:04 am »
Thanks, Mel.  Not getting treatment, at least with Interferon, was my initial reaction and not very well thought out as to exactly what that would mean.  I'm probably not even that brave, really.  I'm not so afraid of death but don't want to take the long road to get there.  I'm still really confused about the whole situation and my feelings change from day to day.  Still hoping for an exposure only.

You make very valid points.  Thanks for responding.

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: New diagnosis
« Reply #16 on: January 10, 2015, 09:59:58 am »
Hi Lu,

I hope along with you it's only an exposure but if not just know there are options besides the Interferon to help!

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Lu

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  • Posts: 30
Re: New diagnosis
« Reply #17 on: January 10, 2015, 12:33:28 pm »
Yes, you're right.  Thank you for your encouragement, Mel!  Keep all body part crossed for me, as I am for you.  You must be incredibly strong to endure all you've gone through.  I hope I can be as strong as you.

Offline BattleTheBeast

  • Member
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  • Female, 57 - SVR12 as of 7/23/15!!
Re: New diagnosis
« Reply #18 on: January 10, 2015, 12:38:54 pm »
Lu,

I am a relative newbie to Hep C and actually really fortunate. The real warriors are the ones who have known for years and their only option for treatment was the Interferon methods with a crappy SVR rate.

Anyone who is newly diagnosed is actually lucky because of the new drugs approved in the past year, VPak, Harvoni, Sovaldi and Olysio and more to come that are doing amazing in the trials!

Thank you for the encouragement, we need all we can get!

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Mugwump

  • Member
  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: New diagnosis
« Reply #19 on: January 11, 2015, 02:31:42 am »
Thanks, Lynn.  Assuming I got it from my husband, it could be as long as 30 years for me.  I'd take Harvoni in a heartbeat, but doubt my insurance would pay for it.  I read so many negative things about the side effects of Interferon, I'm very afraid of it.  Did you have a different experience?   
If you are infected and chose treatment then the specialist should advise you as to treatment duration and options. BUT and I emphasize this for good reason take a pro active approach to learning about your treatment options if you test positive for the virus!

If a short course of interferon along with an agent that inhibits and even blocks virus replication is viable then your chances of clearing the virus with a short combo therapy is good.

Interferon treatment does have higher risks attached but they can be managed if monitored correctly and moderated interferon is no where near as dangerous as straight interferon treatment was prior to pegylated (which essentially reduces the number of interferon dosages necessary by increasing the time that the interferon stays active in the body). 

There is good documentation here and online about how these therapies work and how to deal with most side effects, but before using any other medications or potent herbals please talk to a specialist.

I know that interferon treatment did me little real harm when it failed to clear me of the virus 11 years ago and I endured the full 48 weeks of weekly injections. Even though it knocked my blood cell counts for a loop and weakened me I believe it gave my body a chance to go a year with less damage being done to my liver because it kept the virus in check for a full year.

When the virus came back post treatment I was again resigned to having to live with the virus and changed my life and attitude accordingly. Certainly there was depression at the treatment failure but there was also a new perspective and respect for all who have to deal with this disease. And so came new resolve to not waste my time with the negative thoughts that cause depression.

I deeply hope that you have only been exposed and do not show as being HCV positive or active, however if treatment is called for please do not despair.

There were many times in the past 20 plus years post diagnosis that I have been at the cross roads but the smile I see on peoples faces when I do something that helps others, no matter how slight, the satisfaction of knowing that I have done a job well, the laughter and tears of all who I have both loved and known has kept my spirit from fading and falling into the funk of depression.

Above all do not let a diagnosis of this disease spoil your joy in life!  Only in this way can HCV be defeated even for those who do not respond to treatments or equally important, live with those who are infected.

I hope this post is in reality not needed in your situation and sincere best wishes in obtaining a simple antibody reactive response not a full viral detection result.
 

Eric



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

Offline Lu

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  • Posts: 30
Re: New diagnosis
« Reply #20 on: January 11, 2015, 09:52:42 am »
Thank you, Eric.  What a great post!  You all give me so much hope, and the information I'm getting is invaluable.  I wouldn't have had a clue what questions to ask about treatment otherwise and I'm so much more educated now, even though I was only diagnosed this past Tuesday.  I'm awed by how strong and resilient people are who have lived with this for a long time. 

Can you tell me what to expect when I go to the gastro next month?  My GP led me to believe the gastro would just give me a referral to an infectious disease doctor and the treatment would begin there.  Is that how it works?  Not sure why the gasto needs to be involved, seems like an extra step.  I didn't think to ask the GP, was too overwhelmed by what he had just told me.

Thanks for all your good wishes.  This is so much easier with all your support.

Offline Mugwump

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  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: New diagnosis
« Reply #21 on: January 11, 2015, 02:34:16 pm »

Can you tell me what to expect when I go to the gastro next month?  My GP led me to believe the gastro would just give me a referral to an infectious disease doctor and the treatment would begin there.  Is that how it works?  Not sure why the gasto needs to be involved, seems like an extra step.  I didn't think to ask the GP, was too overwhelmed by what he had just told me.

 
Your GP, like you, is most likely hoping that your HCV testing results are negative and is sending you to a GI specialist to ascertain the state of your functions to the best possible degree. He is not jumping the gun. The GI specialist is best at determining if you have any liver damage going on and ruling out other possible causes of liver damage. For example;  any bile obstructions and the like.  It is as simple as all that.

I would guess that in the states a GP might have trouble justifying the costs to some insurance corporations of some exams that a GI specialist would recommend.

That is exactly why you need to be proactive and informed as to what is going on especially if you need treatments. Fear and anger are a natural response and need to be put into perspective quickly so that any decisions you make about your health care choices are made in an informed rational way and you avoid the pitfalls.   

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

Offline Mike

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  • Posts: 999
Re: New diagnosis
« Reply #22 on: January 11, 2015, 03:12:14 pm »
A GI is well qualified to treat Hep-C and one of the 3 specialist who treat and manage this disease.

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

Offline Mugwump

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  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: New diagnosis
« Reply #23 on: January 11, 2015, 06:29:51 pm »
A GI is well qualified to treat Hep-C and one of the 3 specialist who treat and manage this disease.

Best wishes, Mike
Thanks Mike

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

Offline Lu

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  • Posts: 30
Re: New diagnosis
« Reply #24 on: January 12, 2015, 08:34:54 am »
Okay, that makes sense to me.  So the main thing I need to ask for at the GI is a HCV RNA test for genotype and viral load, right?  Is there anything else I need to ask for or about prior to getting that information?

Thanks.

Offline Mike

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  • Posts: 999
Re: New diagnosis
« Reply #25 on: January 12, 2015, 10:16:35 am »
Yes. And also: When are you going to write the script for Harvoni?

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

Offline Lu

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  • Posts: 30
Re: New diagnosis
« Reply #26 on: January 12, 2015, 10:24:59 am »
Yes, great point.  Thanks!

Offline yag1064

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  • Enjoy the life you have.
Re: New diagnosis
« Reply #27 on: January 12, 2015, 01:54:24 pm »
Nice words Eric,

    I share those thought you expressed. I remember when I first was told I had the virus back in 2007, peg interferon and ribaviren was the only hope at 48% cure. I didn't like the treatment but thinking it was better then death I got though it sort of. I was a non responder after 16wk of the 48wk treatment and was taken off the treatment. That was like "we did our best. Next..." There wasn't the alternatives like those present today. I know it took me a long time to get back up and walk through my life again. I know I struggled until I decided to live with the virus instead of fighting against it. I changed most naturally when I could be in sync with my life as it is. I found time for myself. I have a regular sitting practice and have been uplifted by the process. Fear is part of life and doesn't go away. You don't have to listen.
   Be proactive with the health issues in your life. Managing the fear is of big value. Better decisions are made when fear has been looked at and resolved. The only thing I could offer in addition to Eric's words are to be compassionate to yourself. Try not to be heavy handed. No such thing as right or wrong. Let that go.
   I go for my 6 month after treatment check later this month to confirm that the virus no longer is a resident of my container.

  Be brave. I have good a feeling you be able to handle whatever arises in your life. And there are others who care.

Rick
Tested positive 2007
Non respond-er to treatment 16wk of 48wk
Started I/R/Sol May 2014
Hep C returned as of Jan 2015
Started Harvoni Sep 16, 2015
1st Test V/L:20
2nd Test V/L: undetectable
Dec 2015 EOT V/L undetectable
12 wk SVR :undetectable  Mar 25,2016
24 wk SVR: undetectable  Jun 24,2016
52 wk SVR undetectable   Dec 16,2016   -- I,m past it!!!
Shambhala

Offline Lynn K

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  • Posts: 4,542
  • Get tested, get treated, get cured, fight Hep c!
Re: New diagnosis
« Reply #28 on: January 13, 2015, 12:12:13 am »
Lu

That would be assuming you have the correct genotype for Harvoni. As I understand your situation you have not confirmed you have hep C by HCV RNA test and do not know your genotype. Hopefully your HCV RNA comes back undetected and you won't have to worry about the rest

Good 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!

Offline Lu

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  • Posts: 30
Re: New diagnosis
« Reply #29 on: January 13, 2015, 08:09:11 am »
Thank you to all for responding.  The recent posts of and Eric and Rick and others are truths I know I can use whether I'm hep C positive or not.  Anxiety is an everyday issue for me anyway (but I'm working hard on it) and I can use all the help I can get.

Lynn, you're right, I have not confirmed yet.  What is the correct genotype for Harvoni?  Also, my GP mentioned a liver biopsy, but I'm assuming that won't happen if the HCV RNA comes back undetected, right?

Thanks again, everyone.

Offline Katie

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Re: New diagnosis
« Reply #30 on: January 13, 2015, 02:25:51 pm »
Hi Lu,  You first post brought back my feelings when I was first diagnosed 9 years ago.  It was like getting punched in the stomach as I couldn't figure out where I got this.  It was on my mind 24/7 and I spent hours on the computer reading everything I could and didn't feel comfortable telling anyone as it would have been horrible for people at work to find out. I needed to work.  It drove me crazy wondering where I got this.  A dear friend of mine was talking to me about her health issues and mentioned she had HepC and was cleared something like 10 years ago so I opened up to her.

She had a genotype 2b and the nasty old treatment works on that but my 1a had like a 30% or less cure rate, and that wasn't good enough for me.  One thing my friend told me after seeing how distressed I was about "how this could happen to me" and "where did I get it" was "It doesn't matter WHERE you got it just DEAL with it."  HA!  I thought...oh....that's true, and I felt so much better.  Guess I was really worried about what others would think of me.  That was the perfect thing for her to say to me.

I chose not to do the treatment at that time because of the slim chance of cure and the duration of treatment plus nasty side effects and kept checking the research and following, just praying there would be a breakthrough.  I am so grateful Harvoni came along in time for me to get treated and I am feeling better than I have in years and am approaching 7 weeks and scheduled for 12.

So after all of that, I just wanted you to know that once you have ALL of the information you'll be able to make a choice and your doctor will guide you.  The different tests take between 1-2 weeks if they have to send them out and they can be done at the same time, to determine if you are active, what the viral load level is, (and in the millions is common so don't freak out like I did) and what genotype you are if it is positive.  The genotype is what determines what kind of treatment works the best.

I also wanted you to know it is also common to go through some depression and confusion and worry anytime you are diagnosed with a serious illness.  I just reminded myself that there are many things out there that were worse than what I was going through, such as cancer, Lou Garhrig's, MS.  So much suffering and I was just tired and had some brain fog but could still function.

So hang in there.  This forum is a great source for information and the people here are wonderful. Wish I would have had them 9 years ago.  You'll be fine!  You aren't alone!

Katie

Sorry this got so long!
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Katie

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Re: New diagnosis
« Reply #31 on: January 13, 2015, 02:43:11 pm »
Lu, I wanted to add you do need to be pro-active as others stated.  Since it sounds like you have to wait to see the specialist, I personally would request your GP to run the test to at least see if you have an active infection and not just the antibodies.  It is a simple blood test and that would give you some peace of mind, especially if it is negative.  The unknown and waiting is the worse and one's emotion can take over.  Ask for that test and tell the doctor it is important for you to know, now!

Just my 2 cents and what I would do.

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Lu

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  • Posts: 30
Re: New diagnosis
« Reply #32 on: January 14, 2015, 08:48:54 am »
Katie, I'm glad your post was so long.  I am exactly where you were, confused and uncertain and ashamed.  I haven't told anyone yet either, so I'd be alone and isolated with this if it weren't for you all.  My thought process is that I want to get the HCV RNA and know exactly where I'm at before I "go public," but in truth, I'm embarrassed by the whole thing and don't want anyone to know my dirty little secret.  I know I have to get past that and forgive myself and whoever I got it from. 

I've never had a serious illness and I'm not sure I'm strong enough to handle it.  I have to work too, there's no one else to support me financially, and I'm so afraid that the side effects of Interferon could interfere with that.  I'm trying not to think about that until I have more information and know what my options are.

I'm so glad your treatment is working well for you.  It sounds like you made the right choices and I hope I am that smart when the time comes.  Great idea about getting the test now so I know where I stand, that would be a huge relief.  Or maybe not a relief, but at least I could narrow my focus and not have so many things to think about.

Thanks again for your perspective and telling me I'm not alone.  It really helps!

Lu

Offline Mugwump

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  • My number of posts means nothing, piscor ergo sum!
Re: New diagnosis
« Reply #33 on: January 14, 2015, 12:12:04 pm »
  My thought process is that I want to get the HCV RNA and know exactly where I'm at before I "go public," but in truth, I'm embarrassed by the whole thing and don't want anyone to know my dirty little secret.  I know I have to get past that and forgive myself and whoever I got it from. 


You have brought me almost to tears, but in so doing I remember how and why the fear of this disease can be as bad as the affliction. At first I thought this way until I decided to learn about the real nature of the virus and how to combat it.

My greatest fear is to spread this infection to others so I have learned to tell others that I have the disease. If this alienates them as a friend or keeps me from a job then the friend or job was not worth having.

This does not mean that one should be self absorbed and full of self pity living with this disease. It simply means that you need to be careful and responsible about how you have contact with others.  You do not have to isolate yourself from society.

With a true understanding of your concerns.
Eric
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline Mike

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  • Posts: 999
Re: New diagnosis
« Reply #34 on: January 14, 2015, 02:08:29 pm »
Hi Lu,

I would encourage you to be very careful who you disclose your HCV status to. This is because of the ignorance in the general population and the discrimination that goes with it.

I have experienced this first hand, and, unfortunately, with medical professionals.

For example, I have had a lot of blood work over the years. Being a diabetic, blood work is common.

The script for the blood work always has a diagnosis on it, and, when the diagnosis is for diabetes, no reaction from the phlebotomist. But give that same phlebotomist a rx that says Hep-C and I've noticed a distinct aversion, nervousness, no conversation, missed veins and so on.

I've had the same response from nurses, doctors and so forth.

Disclose to whom you may - but do so knowing that there is a lot of misinformation about HCV, a lot of ignorance and a lot of discrimination.

Best wishes, Mike
« Last Edit: January 14, 2015, 02:14:55 pm by Mike »
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Lynn K

  • Global Moderator
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  • Get tested, get treated, get cured, fight Hep c!
Re: New diagnosis
« Reply #35 on: January 14, 2015, 03:24:39 pm »
Lu

Harvoni is currently for genotype 1 but really if you don't have the virus all this information you have about hep c won't matter if you are not infected. As the test takes about a week to 10 days at least from my experience to get results just have you doctor get the test for you could be you are having stress over nothing. If you do truly have hep c take it from there.

Yes no hepatitis no biopsy. Also if you do have hep c there is another test if you can get access instead of a biopsy called a fibroscan. In office non invasive. But cross that bridge when you get there if you need to
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 Katie

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  • Posts: 784
Re: New diagnosis
« Reply #36 on: January 14, 2015, 08:09:16 pm »
Just checking on you Lu,

Did you call your doctor and request the blood test today?  Be proactive and stand up for yourself.  I know that is hard and sometimes scary but just do it and you will feel better.

After 9 years of living with this basically alone, I am now feeling OK about talking about it. I am retired (I made it) so no longer worry about my job.  It was stressful, as I worked for the government as a research biologist and supervised up to 15 technicians and then there is ALL of the politics, so even though I loved the work, I am glad to no longer have that responsibility, and the last couple years were difficult for me. 

I can talk about it because I now have GOOD news about the treatment and I feel I need to educate people to get the word out and help others.  You'd be surprised how many health care professionals know nothing about Harvoni, and how many of them are misinformed about Hep C.  Since they are at high risk you would think they would get updates.  I talked to the phlebotomist at my 4 week blood draw, and she was thrilled to hear about it and asked me to let her know what her results were.  Getting that info out is important.  As for my friends, I see the shock on their faces when I tell them, and a couple have said they knew something was going on with me, but as soon as I tell them about the treatment I am on, the relief on their faces spoke volumes!

It is difficult thinking of yourself as a biohazard and really, that's how I did feel.  I followed the research and just knew they would have a breakthrough.  I am delighted it came around before I had serious liver damage and is now available to cure me.  My blood won't be poison any longer!!!!  It was also surprising how many "friends"  I never saw again after they found out I no longer drank (which I wasn't a heavy drinker) but I guess it was their own insecurity.  No more invites to their Bar-B-Qs  etc, so I guess they weren't worth much.  :~)

So, hopefully you will not be active, but you are in such a good position if you are, because there is a cure available.  Genotype 1 is the most common in the US and that is what Harvoni can now cure.  That would be much easier to hear than it was just 2 years ago as the treatment available was unlikely to cure you.  So no matter what your results are, the news is no longer a life sentence.  Like my friend told me, just move ahead and deal with it.  We all have your back and are here for you.  Today is my 42nd pill, so I am half way there.  The weeks have gone by so fast!

Breathe deep and think positive thoughts.  Everything will be OK.

Katie

Another long one and I think I am venting for me as much as supporting you!  Hope that's OK.
« Last Edit: January 14, 2015, 08:11:15 pm by Katie »
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline BattleTheBeast

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  • Female, 57 - SVR12 as of 7/23/15!!
Re: New diagnosis
« Reply #37 on: January 14, 2015, 08:38:40 pm »
Katie,

Thank you for that post, it made me smile. Way to go Sister!

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline badbradley

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  • Posts: 294
Re: New diagnosis
« Reply #38 on: January 14, 2015, 08:44:55 pm »
Katie,
   Thank you for sharing that.     
Geno 1a
Sov/Oly 12wks - relapse
Har/Riba 12wks
Alt-16  Ast-17 SVR - 12
Alt-15  Ast-14 SVR - 24

Offline Mugwump

  • Member
  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: New diagnosis
« Reply #39 on: January 15, 2015, 03:00:18 am »
Just checking on you Lu,

 

Another long one and I think I am venting for me as much as supporting you!  Hope that's OK.
Great well thought out post Katie that was certainly not a vent.  And it should be posted to other media even the respectable medical journals!  Thank you for echoing my thoughts about the fear of isolating oneself because of this disease but in a clear and down to earth manner.

For those of us who are more like "space cadets" it is great that a forum like this can help us navigate back down to earth.

I too have been excused or excluded from many "social occasions" because I choose not to drink or smoke pot for that matter.
But if someone needs a designated driver then they are usually quick to give me a call, as long as they don't barf in their car or my vehicle I don't mind the conversations and find satisfaction in helping them safely back to earth!

Two thumbs up on that post!
Eric

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

Offline Lu

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  • Posts: 30
Re: New diagnosis
« Reply #40 on: January 15, 2015, 09:24:39 am »
I agree with all the comments, great post, Katie.  Everything I read here makes me feel so much better.  I no longer feel all the shame I felt initially since I can communicate with people who are so obviously intelligent, compassionate and wise and have gone through it before me and made this difficult road so much easier to travel. 

Katie, I'm so glad that your treatment is going well.  Your success gives me and others great hope for the future, and thank you for sharing that.

I called my GP this morning to request the HCV RNA test.  His nurse is going to call me back.  Fingers and toes are crossed!  I would really like to get it over with.

For now, I think I'll tell others on a need-to-know basis.  I'm in the process of getting a dental implant, so I think my dentist needs to know.  I might not tell my daughter until after I've seen the GI and know my status.  She's a worrier like me and already has plenty on her plate so I don't want to add to it.  I have one friend I might tell eventually who's very wise and nonjudgmental.  Otherwise, I can't see any benefit from anyone else knowing.  I'm self-employed and work at home, so no employer or coworkers to deal with, and not much of a social life so I'm unlikely to infect anyone else, no matter what my status is.  The only downside is that I live alone, work alone, I'm just alone 99 percent of the time and sometimes go long periods without even talking to anyone.  I don't even have a dog anymore since he died last March at 15 years old, broke my heart.  I'm not lonely, in spite of all that, but I'm not sure the isolation is such a good thing at this point in time.  Thank God for you all.  I actually feel connected to something.

Keep the great posts coming, please.  I really need them and you.

Lu


Offline yag1064

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  • Posts: 58
  • Enjoy the life you have.
Re: New diagnosis
« Reply #41 on: January 15, 2015, 11:17:41 am »
Morning Lu,

    I wouldn't worry too much about infecting someone. I am married and I probably had it all during my marriage. My wife was tested and so were my children. None of them have it. I have a loving relationship with my wife and we are intimate. That is what helped me. Knowing the one I sleep with has not been effected gave me the courage to feel normal with others. Certainly observe precautions. Be mindful, but it's no big deal. Enjoy the life you have. You can be alone and not be lonely.
   You know I have been thinking about your words and was thinking back to when it was fresh. I was deeply depressed. I had the good fortune to be able to talk to someone who had it. Its just the same thing we are doing in this forum. Maybe there is a way to communicate as a group. I think it would be easy for those who would like to get a group together on something like SKYPE. I saw a show that talked about the good the social media is doing for those with terminal illness. It showed how much it helped people who were alone. The need to be social is a human quality. It served that need. People enjoying the company, albeit remotely, helps some to feel connected. Everything I saw was uplifting and magical. I really have no experience, but it is worth looking into.
   Sorry I got off the original post, but the thought was strong.
Good wishes for your new journey. You will do well.
Tested positive 2007
Non respond-er to treatment 16wk of 48wk
Started I/R/Sol May 2014
Hep C returned as of Jan 2015
Started Harvoni Sep 16, 2015
1st Test V/L:20
2nd Test V/L: undetectable
Dec 2015 EOT V/L undetectable
12 wk SVR :undetectable  Mar 25,2016
24 wk SVR: undetectable  Jun 24,2016
52 wk SVR undetectable   Dec 16,2016   -- I,m past it!!!
Shambhala

Offline Lu

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  • Posts: 30
Re: New diagnosis
« Reply #42 on: January 15, 2015, 12:53:12 pm »
Thank you for that.  I'm concerned about my daughter and my granddaughter but I think the chances are very remote that I've done them any harm.  I really hope not, that would be hard to live with.  We have shared food and/or utensils a few times, not often.   I know my daughter has had blood work done since then with no red flags.  I'm just hoping and praying for a good outcome here.  No word from my GP yet on the HCV RNA test.

You're right, it's amazing how much the sympathetic ears and stories of hope help.  I wouldn't have believed it two weeks ago, but it's really been true for me.  Thank you for your good wishes!

Offline cider

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  • Posts: 2
Re: New diagnosis
« Reply #43 on: January 15, 2015, 03:35:13 pm »
    Thank you for sharing the different stories shared with  person who have hepatitis problem. It makes me feel better reading it. I am sharing my stories here too .I  am 35 years old now just had my second baby through C- section 1 month ago and was discharged with no problem. Unfortunately after 1 week I was admitted again in the same hospital because of too much pain and tenderness in my lower left abdominal area, low grade fever and chills and was found out that I had pelvic abscess confirmed through by CT scan, so I felt so sad and depressed that day that  I have to go through again all the procedure to be done. So I admitted in the hospital for two days for that and given three different antibiotics thorough IV line.My blood works were normal except  increase WBC count which is normal if you have infection. I Was discharged on the third day because I felt better and my WBC blood count decreased. I was prescribed 2 antibiotics at home the  Augmentin and dynapen 125 mg taken orally 3x a day for 7 days.I never take a lot of antibiotics before. I am not really aware If I have allergies of it not until 6 days of taking it I developed skin rashes/hives all over my body , had too much pain in my epigastric area and  itchyness. I did saw my obgyn right away and told to stopped taking the 2 said antibiotics and replaced with another one the Levofloxacin once a day for seven days. I had to wait 24 hours to take it. I took the antibiotic for seven days with out rashes but still have itchiness. Had my blood works done again to make sure everything will be okay but sadly my liver function test were high AST 257, ALT 172,  alkaline phosphatase 166. My obgyn refers me to my primary Dr. Because of the abnormal LFT And I saw my doctor  last Monday and done my blood work again.So  Yesterday my primary doctor called that I still have high LFT's  and my hepatitis c popped out. So I'm emotional right now of what's going on and worried . my doctor told me I need t o do more blood works again. If ever I really confirmed for having hepatitis c I think i got this from the hospital. I don't drink alcohol not even a sip . I don't smoke, I don't have a tattoo, i don't have blood transfusion,my husband has no any hepa problem. I'm bothered right now and still crying and thinking of my one month  old daughter. I did a lot of blood test during my pregnancy why it did showed up that my LFT's is high or they never checked it.

Offline Islandgirl

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  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: New diagnosis
« Reply #44 on: January 15, 2015, 04:05:58 pm »
Hi Lu, and welcome.  I first learned I had the antibody for Hep C when I got a letter from the blood bank as they stated the reason they could not accept my donation.  First time I'd ever tried to donate as I'd always felt I didn't have enough energy and was borderline anemic.   I was referred to a gastroenterologist and went through the testing way back when...  After that, my story is almost exactly like Katie's (except I wasn't a research biologist:))  Today is my 44th pill so we are basically on the same track with our treatment too. 

Reading Katie's story really grabbed me as I realized she could have been writing mine!  I'm also retired now, but was National Sales, Service and Training Manager for a manufacture of highly technical products and traveled extensively; I would certainly have lost my job and possibly alienated some business contacts and accounts if the company had known. So much ignorance, intolerance and misinformation out there.  Unless they wanted to become "blood brothers" and like in the old Westerns, they really had no risk, but few seem to realize that they would have to somehow have my blood mingle with their's to risk infection.

Thanks Katie for your generous spirit and informative post - thanks to all of you who have posted on this topic - the comfort, sharing of information and compassion in posts like these are essential to us all.  Good luck Lu, we're all hoping for good news when you get those tests done - knowledge is power - and please keep us posted.  ....Islandgirl

 
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline Katie

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  • Posts: 784
Re: New diagnosis
« Reply #45 on: January 15, 2015, 04:12:39 pm »

For now, I think I'll tell others on a need-to-know basis.  I'm in the process of getting a dental implant, so I think my dentist needs to know.

That's a good plan and yes all of your medical provides should be aware.  Remember, it isn't easy to infect someone.  It is a blood transfer infection so just don't share razors or personal hygiene things and if you cut yourself just put a band aide over the wound.  Casual contact will not infect anyone so don't get paranoid about it.

Glad you called you doctor and it shouldn't be a problem.  It surprised me that wasn't the first thing done as if it came back negative why see a specialist, unless you were having symptoms related to liver issues.

Taking some control, is good for your mental health as well!

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: New diagnosis
« Reply #46 on: January 16, 2015, 12:58:16 am »
Hi Cider

Sorry you are having all these issues just a couple of points hepatitis c is no from drinking or smoking it is a blood borne virus and is transmitted by blood to blood contact.

Not really sure what you mean " and my hepatitis c popped out. " but anyway there are different things that can cause elevated liver enzymes other than hep c.

To be diagnosed with hepatitis c commonly you would be tested for antibodies to the virus. If that tests positive that only means that at some point you were exposed to the virus but you could have cleared it on your own about 25% of people do. To confirm current infection your doctor will have and additional blood test called HCV RNA to check for the virus itself. If that test positive then yes that would mean you do have hepatitis c.

Anyway good luck you may want to consider asking your own question rather than tacking on to and existing conversation.

good 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!

Offline Lu

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  • Posts: 30
Re: New diagnosis
« Reply #47 on: January 16, 2015, 09:02:50 am »
Thanks for the posts and encouragement.  I suspect Cider's post is an attempt to get it all straight in her own mind by writing it out, and I think that helps.  What an awfully complicated situation.  I'm counting my blessings that I don't have so many things to think about, my brain's not that big.  Best wishes to you, Cider.

No response from my GP yet on the HCV RNA test.  I'll call again this afternoon if they don't call this morning.  His nurse didn't know what the test is and maybe he doesn't either, not being a specialist.  He didn't say anything to me about it possibly being only an exposure and was very matter of fact that I have Hep C.   Seems a little cruel, knowing what I know now.  He did know there are alternatives to Interferon, but wasn't hopeful about my getting any of them since they are so much more expensive.  He said the GI would arrange for a liver biopsy.  So it's very obvious how right you all are that I must be proactive and educate myself.

Thank you all so much for making that happen!  I'd be a total mess right now if it weren't for you, but instead I have hope and a reasonably clear head.  Please keep the advice coming.

Lu


Offline Katie

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Re: New diagnosis
« Reply #48 on: January 16, 2015, 03:12:33 pm »
Hi Lu,  I am amazed if a GP doesn't know how to test for Hep C and he sounds negative when now there is so much hope.  Maybe print off some of the info and take it in with you. 
http://www.hepmag.com/articles/2014_pipeline_2502_25621.shtml
This is a good one.  You could use it for your reference while you talk to him and maybe he'd be interested in looking at it.  Trust me, I've done that myself.  They pay more attention when they see you are doing some research.

Also, I never agreed to a liver biopsy but had annual ultra sounds which showed my liver to be in good shape.  I would have had a biopsy if it was obvious that I had serious complications but I don't like the invasive procedures if they aren't needed.  Remember you are in charge of your treatment so the more you educate yourself the better questions you will ask and the better choices you will make.
Knowledge gives you power!

Enjoy your day and be diligent and strong!

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Islandgirl

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  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: New diagnosis
« Reply #49 on: January 16, 2015, 11:40:26 pm »
Hi Lu,
Just wanted to mention that if you don't like the gastroenterologist you are referred to, ask for another referral.  It's really important that you get someone knowledgeable about Hep C AND that you feel comfortable working with .  You may get someone just great, but if you aren't comfortable and feel you can trust and talk to them, there is no rule that says you can't change docs.  My first one years ago had no patient relationship skills and tried to force me into doing something I wasn't convinced was right for me.  I thought he would lose it when I dared to tell him NO, that the choices available were not appropriate for my genotype or worth putting myself through for so little chance of being cured.  He had no choice but to accept my decision but tried every scare tactic he could think of to force me into the treatment available. I terminated our relationship and found someone I could talk to and partner with.

 Not much was known about the disease back then, but studying everything I could find, and trusting my own gut, I still feel I made the right decision for myself.  My current doc and I finally felt the treatment and the time was right for me when choices became available for genotype 1 and that Harvoni was the right one for me.    The right doc will not try to push you into anything not right for you, but will help you find out where you stand, discuss the options (if you do have the virus active and not just the antibody) and then work with you to accomplish mutually agreed to goals.  As Katie said, YOU are in charge of your treatment and the more you learn the better you can work with your doctor to make the right choices.

Keep us posted on how things are going for you and stay positive - we're here for you.  .....Islandgirl
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline Katie

  • Member
  • Posts: 784
Re: New diagnosis
« Reply #50 on: January 16, 2015, 11:58:33 pm »
Hi Cider, I hope you are doing better today. It is normal to be overwhelmed, scared and confused and the best thing you can do is to educate yourself.  Please stick with this forum and share your concerns. This is a great resource with lots of support and people who understand exactly what you are going through.

We all help each other through the bad days and celebrate the good days.

You are not alone!

Katie

I just reread you post and wonder why he thinks you have Hep C?  Did you have the Hep C antibody blood test?  Be sure to get copies of all the blood work results so you have your records.  Antibiotics can raise your Liver tests.  Like Lynn said it isn't just Hep C that affects the ALT/AST.
« Last Edit: January 17, 2015, 12:03:38 am by Katie »
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: New diagnosis
« Reply #51 on: January 17, 2015, 01:33:20 am »
Here is a link to a patient level pamphlet from the CDC called
Information on Testing & Diagnosis
HEPATITIS

http://www.cdc.gov/hepatitis/hcv/pdfs/hepctesting-diagnosis.pdf

Hepatitis C Antibody Test
Results
When getting tested for Hepatitis C, ask your doctor when and how you will find out your results. The test results usually take anywhere from a few days to a few weeks to come back. A new rapid test is available in some health clinics.

Non-Reactive or Negative Hepatitis C Antibody Test

• A non-reactive or negative antibody test means
that a person does not have Hepatitis C.

• However, if a person has been exposed to the
Hepatitis C virus in the last 6 months, he or she
will need to be tested again.

Reactive or Positive Hepatitis C Antibody Test

• A reactive or positive antibody test means that
Hepatitis C antibodies were found in the blood
and a person has been infected with the
Hepatitis C virus at some point in time.

• Once people have been infected, they will always
have antibodies in their blood. This is true if even
if they have cleared the Hepatitis C virus.

• A reactive antibody test does not necessarily
mean that you have Hepatitis C. A person will
need an additional, follow-up test.
Diagnosing Hepatitis C

If the antibody test is reactive, an additional blood test is needed to determine if a person is currently infected with Hepatitis C. This test is called a RNA test.
Another name used for this test is a PCR test. If the RNA test is negative, this means a person does not have Hepatitis C. If the RNA test is positive, this means a person currently has Hepatitis C and should talk to a doctor.

Print him a copy of the CDC pamphlet gee hepatitis C 101 material there
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 Islandgirl

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  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: New diagnosis
« Reply #52 on: January 17, 2015, 08:52:45 am »
Wonderful post, Lynn!  Great information for everyone.  Thanks ....Islandgirl
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline Lu

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Re: New diagnosis
« Reply #53 on: January 17, 2015, 10:12:23 am »
Thanks for the links!  I printed both the Pipeline Report and the info from the CDC and will take them to my GP and my GI.

Unless my GP has communicated with my GI, which I doubt, she doesn't know anything about the Hep C and thinks I'm coming in only for a colonoscopy consult.  My GP gave me a copy of my blood test results to give to her.  Maybe I should ask my GP to inform her of this if he hasn't already?  I guess that's obvious.

I've only been seeing this GP since November of last year when I went for a basic checkup, so I'm not sure how much confidence to put in him.  I've always been healthy and have never seen a GP on a regular basis, but at 59 years old and since I now have insurance, I thought it was time to start.  He ordered all the normal stuff, lab work, GYN, mammogram, colonoscopy scheduled for February, and everything is normal except elevated liver enzymes (AST 48, ALT 46).  I did have a liver scan after that and the only thing that showed was a small polyp in my gallbladder.

I called his office again early yesterday afternoon about the HCV RNA test, still no response.  I'm stymied by that and wonder what's really going on.  Even if he doesn't want to order it, they could at least call and tell me that.  Normally I would shrug my shoulders and wait to see what happens because my natural inclination is to be a wimp, but that's not going to work this time.

You all are helping me be strong.  Keep the encouragement coming, please.

Offline yag1064

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Re: New diagnosis
« Reply #54 on: January 17, 2015, 11:24:27 am »
Lu,
    If there is a university near you may want to see if they have a hepatology department. I live in western NY and I went to the University of Rochester for treatment. Maybe you have a medical school near you. Worth looking into. Nice to have a doctor with the latest technology.
    I think you will do well since you have become enlightened to what is available to cure you of the virus.
   
 Best Wishes and stay strong.
   
Tested positive 2007
Non respond-er to treatment 16wk of 48wk
Started I/R/Sol May 2014
Hep C returned as of Jan 2015
Started Harvoni Sep 16, 2015
1st Test V/L:20
2nd Test V/L: undetectable
Dec 2015 EOT V/L undetectable
12 wk SVR :undetectable  Mar 25,2016
24 wk SVR: undetectable  Jun 24,2016
52 wk SVR undetectable   Dec 16,2016   -- I,m past it!!!
Shambhala

Offline Red Hen

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  • Posts: 187
Re: New diagnosis
« Reply #55 on: January 17, 2015, 12:26:13 pm »
Hi, Lu, and all. The stories here really took me back to when I was first diagnosed about a year ago. My regular doctor actually cried when she told me I was hep c positive. That was really upsetting. I asked her (and this was by phone) if I was going to die. "No, But you are going to be very sick for a long time." She compared the treatment to chemo. Then I got on the internet and scared myself silly. I already have anxiety issues anyway...So, then, when I went to the her office, this doctor said that I needed to see a gastroenterologist or the infectious disease doctors who do all the aids stuff. She said she really didn't know much about hep c and she didn't. Thank God that I chose the aids doctors! Absolutely excellent doctors, nurses, etc. etc. Plus they are used to doing drug trials. Realistic, dedicated, well informed people. The sovaldi, I believe, had just come on the market recently with the $1,000 per pill price tag. My insurance would not cover anything but the interferon treatment which was 33% effective for type 1A. Screw that, I thought. I was 60 years old, probably infected when I was 18 years old and trying injectable drugs. Doctors helped me decide on watchful waiting and I applied to be a candidate for drug trials. Got on the Abb-Vie Viekira pac (and ribavirin) trial last fall. I feel so lucky to have gotten any chance at treatment. Already, though, new drugs have been approved including Viekira pak and Harvoni! So, if you can find university or good infectious disease experts, check them out. I think we all will find better treatments and more affordable treatments soon! Wishing the Best to us all!
genotype 1a
completed 12 weeks Viekira pak and ribavirin
final results due around the end of April
Undetected 12 weeks post treatment!

Offline Red Hen

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Re: New diagnosis
« Reply #56 on: January 17, 2015, 12:42:16 pm »
Sorry, Lu, for writing so much. I meant to say, that this whole diagnosis process including blood work, liver scans, etc. and getting those appointments took about 3 months. It was difficult. Hang in there!
genotype 1a
completed 12 weeks Viekira pak and ribavirin
final results due around the end of April
Undetected 12 weeks post treatment!

Offline Lu

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Re: New diagnosis
« Reply #57 on: January 18, 2015, 09:09:30 am »
Absolutely no need for apologies, Red Hen.  I need all the perspectives I can get and yours is also a good one and a story full of hope.  I don't think I've heard about Viekera till now.  How are the side effects of your treatment?  What genotype are you?  If I don't feel good about what the GI says, I may request an infectious disease team, based on what you've said.  I feel exactly the same way about Interferon, screw that!  The watchful waiting part sounds wise, as well.  I'll have to be careful to take my time and not rush into anything I'm unsure of.  That will be hard since I'm a little on the gullible, unassertive side.  I'm a pushover, frankly.  That's not going to work in this situation and I have to change it!  Maybe that's the upside here, I'll have to learn to be more assertive and proactive.

There is a university here in my small town in Florida but I don't believe they have any sort of medical program, and there are certainly not as many doctors as a larger city would have.  My choices may be limited in that way, but we'll see.  It's too soon to think about that, I think.  But I'm glad I'll have lots of time to weigh the options if I am Hep C positive and those types of decisions have to be made.

Thanks again for your story!

Lu

Offline Kat83

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Re: New diagnosis
« Reply #58 on: January 18, 2015, 01:29:35 pm »
I was just diagnosed with hep C yesterday.  My question is, the lab report show my hep C virus antibodies are 11, but says the reflex test should be done for s/co ratios between 1.0 and 10.9. 

I received the exact same reading on December 31st when I went in for a pre-pregnancy checkup and was wondering the same thing.  I was tested due to suspect liver enzymes (32/55), but have read that this really means nothing more than the fact that my liver is not functioning properly.  I have not had a viral load or genotype done yet, but have an appointment with a Gastro scheduled for the 31st of this month.   

Is it possible that even a reading of 11 is incorrect?

If I am positive, it is likely I have had Hep C since I was 12 or 13 when I routinely changed my mother's chest tube.  She had Hep C and was suffering from cirrhosis.  I was never told what genotype she had and was never warned by her doctor or the nurse who lived with us to wear gloves or take any preventative measures.  It seems like a massive oversight when such a simple step may have prevented this, but what can you do now.  Ce la vie.

In good news, it seems my husband - whom I have been with for twelve years - tested negative for the antibodies, which is a huge relief to me. 


Offline Katie

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  • Posts: 784
Re: New diagnosis
« Reply #59 on: January 18, 2015, 02:01:37 pm »
Kat, It sounds like you were exposed to Hep C as a child, however that doesn't mean you have an active infection.  You need the other tests to determine that.

If you scroll this page you'll see others experiences and sites for information on Hep C that can answer many of your questions.

Best of luck to you and hope you are doing well.

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Kat83

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  • Posts: 12
Re: New diagnosis
« Reply #60 on: January 18, 2015, 02:07:15 pm »
Katie, thanks for your fast reply!  Hopefully Lu and I will have good news when we get the results back from our respective gastros.  Failing that, we've got a wealth of information here that will make everything quite a bit easier. Again, thank you.


Offline Katie

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  • Posts: 784
Re: New diagnosis
« Reply #61 on: January 18, 2015, 02:12:38 pm »
Kat...you are on the right forum and everyone here is so supportive and helpful.  It is wonderful to have a place to communicate where others understand.  Feel free to ask questions as you go through this journey. 

You are not alone!

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Red Hen

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  • Posts: 187
Re: New diagnosis
« Reply #62 on: January 18, 2015, 03:07:20 pm »
Hi, Lu and welcome, to Kat.
Lu, I wanted to answer your question. I am genotype 1a. I have some scarring on my liver but no cirrhosis. My hep c was undetectable for about 40 years, as far as I know. Not sure what my viral load was. I'm not big on details. Because of being 1a, I had to take ribavirin with the Viekira pak. I'm not sure which drugs caused my symptoms; mostly intense itching and skin rashes, feeling easily tired and grumpy. How much time you have to consider options will be partly determined by your liver scan information, etc. But, you are right not to let anyone push you in to treatment you don't want. There are a lot more options than there used to be! Keep in touch and let us know how the tests come out.
genotype 1a
completed 12 weeks Viekira pak and ribavirin
final results due around the end of April
Undetected 12 weeks post treatment!

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: New diagnosis
« Reply #63 on: January 18, 2015, 05:42:44 pm »
Hi Lu

If you are talking about the University of Florida Gainsville they have an excellent teaching hospital there. Otherwise does the college near you have a College of Medicine? If not the thst would not be an option to look there.

For those of us who treated and failed that was our only option "watchful waiting" as I had no choice I did not like it one bit but I am more proactive than reactive. If I have a problem I attempt to fix it if I can but I am a mechanic so I guess that is just how I roll.

But once you find out your situation and you have little to no liver damage you have lots if time to decide what is best for you. Nice to be able to decide and have options.

Good 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!

Offline Lu

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Re: New diagnosis
« Reply #64 on: January 19, 2015, 09:18:42 am »
Hi all and welcome Kat.  You and I are in exactly the same situation right now.  It's unreal how much I've gained from joining this forum and you will too.

I live in DeLand, Florida, about halfway between Daytona and Orlando.  We have Stetson University here, which is a great school, but no medical program.  I might have options in Orlando but I'd have an extraordinarily hard time driving there on a regular basis.

I'm still weighing my options, but if my GP doesn't respond today about the HCV RNA test, I think I'll just wait to see the GI.  I'm beginning to obsess about it and have to stop that.  I see the GI two weeks from today and hope she will already know that Hep C is an issue too.  I'll be disappointed in my GP if she doesn't.  But I don't know how the process works, maybe that's the norm.

But until then, I'm going to take a deep breath, relax and enjoy, as you all have taught me to do.  Thanks!!  That's so much better than stressing about it.

Lu

Offline Red Hen

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  • Posts: 187
Re: New diagnosis
« Reply #65 on: January 19, 2015, 11:02:35 am »
Hi, Lu, and all. Funny story about my anxiety. By the time I finally got to see infectious disease doctors I was a nervous wreck. In the office ( with my husband ) I had my heart rate and blood pressure taken as a routine procedure. My blood pressure was High, off the charts! They considered sending me to the e.r. I have never had high blood pressure before, so they decided to see if I recovered in a few minutes. " That blood pressure is more likely to kill you than the hepatitis c!" the nurse said. I started laughing and pretty soon my blood pressure returned to normal. Many of my problems are based on fear. Breathe! Drink a tall glass of water. Take a walk outside. Know that you are not alone.
genotype 1a
completed 12 weeks Viekira pak and ribavirin
final results due around the end of April
Undetected 12 weeks post treatment!

Offline Kat83

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Re: New diagnosis
« Reply #66 on: January 19, 2015, 11:30:02 am »
Lu, I am by the other Stetson on the Gulf side. 

And you're right, so far, I've learned more here and from Lucinda Porter's books and articles than from my GP.  Their office has been beyond unprofessional: booking appointments when doctor is out, failing to call us with lab results, trying to take unnecessary tests, lost files, bickering staff, and what seems to be an absolute inability to understand that a modicum of politeness after giving someone life-altering information might just be nice.  I'm hoping your doctor's office has been a bit more professional than mine.  Right now, they're more exhausting than the diagnosis.


Offline Islandgirl

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  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: New diagnosis
« Reply #67 on: January 19, 2015, 12:13:31 pm »
Kat83, You have a choice.  PLEASE change doctors!  No one should have to put up with what you described.  I'd be checking out doctors in the surrounding area - and ask for GP for a referral to one of them.  Sounds like changing GP's might need to be looked at too?  I love my GI now, but had one I couldn't stand before in a different practice.  It's your life. your health, your choice.  Good luck and feel a big hug to comfort you for what you've been through. :)  ....Islandgirl
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline Kat83

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Re: New diagnosis
« Reply #68 on: January 19, 2015, 01:33:26 pm »
Islandgirl,

I definitely will.  I am waiting to see if the Gastro can recommend someone.  Everyone else I've called or checked with has an insane wait list, which is unfortunate. 

During treatment, how much monitoring does a GP do vs. the Gastro? 

Offline Islandgirl

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  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: New diagnosis
« Reply #69 on: January 19, 2015, 06:11:39 pm »
Good for you, Kat!  The GP really only takes care of everything except the Hep C, but needs to be kept informed by the GI so they will know what's going on with your lab results and what treatment you are on (if you start a treatment).  This way if you have anything the GP needs to treat you for, or to refer you to another doc for, they won't repeat tests or prescribe meds that might be contraindicated.  Also, it's their job to keep track of your care and make sure you are getting what you need when necessary, no matter how many doctors you go to.  My primary care (GP) doc always asks when I've seen each doctor and if meds have been changed or added, tests or whatever.  I also think insurance now expects this of them from what I've gathered - they function as a care coordinator if necessary.  Normally, you don't have lots of appointments with the Gastro, they will be spaced out with you communicating any needs or questions through their nurse when needed, and after the initial consultation and decision on the treatment plan, appointments usually revolve around dates after lab work is done.  Your gastro may help you get in to another Primary Care doc despite the waiting list, especially if you describe why you want to change.  However, bear in mind that you will have to tell them that you are asking for their help as they are pretty careful about not offending another doc by handling something wrong - you'll have to make it clear that you are unhappy with the previous office and that their practice is not a good fit for you.  Good luck!   ....Islandgirl
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline Kat83

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Re: New diagnosis
« Reply #70 on: January 19, 2015, 06:32:07 pm »
Thank you - this is extremely helpful - especially the information as to which doctor does what and how to go about politely asking for a new GP.  The GI I will see is not a referral from my GP, but someone I found through researching doctors in the area who specialize with Hep C.  Hopefully since he has no connection to her, he will be more willing to help me escape! 

As for the GP, I'm almost actually impressed a doctor's office could be that insanely unprofessional.  They've reached a level of failure so astounding that I almost want to congratulate them.  In fact, I've only seen the doctor once...almost two months ago and have not spoken to her since.  I've been dealing entirely with her nurses who seem to be re-enacting Mad Max's Thunderdome every time I am in the office.  They certainly hate one another, which would also be somewhat entertaining if the issue at hand was not my health and future.

There should be a website that awards insane levels of failure of local businesses. 

Offline Islandgirl

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  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: New diagnosis
« Reply #71 on: January 19, 2015, 08:10:54 pm »
You're welcome.  The right doctor's are really important and we always have choices - though with some types of insurance, such as an HMO, a person needs to choose from a participating doctor or specialist, but it's still a choice.  Good luck!


I just saw the weather and hope that none of our NE Forum family are out there in jeopardy on the black ice!  Hopefully you are all tucked inside, safe and warm!  ...Islandgirl
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: New diagnosis
« Reply #72 on: January 20, 2015, 12:58:43 am »
Hi Kat

I found this on a thread in the medhelp.org hep c community people were passing around their doctors names they like

.I see Dr. Guy Neff at Tampa General in Tampa Fl. Great Dr. but very busy office as it is part of University of Tampa and he is head hepatologist at the transplant ctr. and getting phone calls returned is at times VERY frustrating, other than that no complaints...... .
------------------------------------------------------

I have actually been to several different doctors/clinics in FL. with all the years of doing treatments and clinical trials and then, private practice doctor at the present time.  I did a clinical trial at Mayo/Jacksonville, many years ago and the doctor I had at that time is no longer there.  I did a clinical trial at University of FL/Shands and saw an expert, Dr. David Nelson - a very knowledgeable doctor and very nice, too.  It's been a few years since I was there, but as far as I know, he's still there.  I met the world famous Dr. Eugene Schiff down at the University of Miami and I was in a clinical trial down there as well. Dr. Schiff is world renown and is very nice, too, but I believe that he's towards the end of his 'seeing private patients in his practice', I might be wrong on that, so don't quote me.  When I got done with my trial at Gainesville, Dr. Nelson referred me to my current private practice doctor in Melbourne, FL.., for my regular 'liver doctor' care.  This doctor is part of a large private practice with about 4-5 gastroenterologists, but I've basically only been followed by him.  The practice is in the Health-First Melbourne Internal Medicine group.., otherwise known as HF-MIMA and he practices in the Gateway location.  Drs. Schiff and Nelson are probably some of the best hepatologists in FL., but the only way I was able to see them was because I was in a clinical trial at their teaching hospital.  I'm hoping that my liver appts. will no longer be a regular thing that I'm going to need since I became undetected for the Hep (hoping it turns into SVR).

--------------------------------------------------

Hope this helps any one in the Sunshine state
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 Kat83

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Re: New diagnosis
« Reply #73 on: January 20, 2015, 08:34:50 am »
Wow.  Thank you; that is a lot of very good information!  I will keep Tampa General in mind if I do not like the doctor with whom I've already scheduled.  This is overwhelming and there's a lot to learn, but I'm certainly in the right place.


Offline Mugwump

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  • My number of posts means nothing, piscor ergo sum!
Re: New diagnosis
« Reply #74 on: January 22, 2015, 12:45:39 pm »
Thank you - this is extremely helpful - especially the information as to which doctor does what and how to go about politely asking for a new GP.  The GI I will see is not a referral from my GP, but someone I found through researching doctors in the area who specialize with Hep C.  Hopefully since he has no connection to her, he will be more willing to help me escape! 

As for the GP, I'm almost actually impressed a doctor's office could be that insanely unprofessional.  They've reached a level of failure so astounding that I almost want to congratulate them.  In fact, I've only seen the doctor once...almost two months ago and have not spoken to her since.  I've been dealing entirely with her nurses who seem to be re-enacting Mad Max's Thunderdome every time I am in the office.  They certainly hate one another, which would also be somewhat entertaining if the issue at hand was not my health and future.

There should be a website that awards insane levels of failure of local businesses.
Great idea for a reality tv sitcom!  Maybe it could be hosted by someone named Ronald Frump who shows up as a patient who actually owns the medical franchises and gets his kicks going around firing incompetent employees. LOL

The problem with many medical clinics is that they tend to be overworked especially during flue season. It is easy for staff to lose focus and get discouraged, the doctor is most likely getting frazzled by the scene.  Perhaps a little letter explaining what you are encountering and why you are switching out might help her deal with the situation. Not a doo doo and sympathy note just a little heads up for her from the perspective of customer specific to what is happening to her work place. Who knows she might switch clinics and take her patients with her!

Eric
« Last Edit: January 22, 2015, 12:47:31 pm by Mugwump »
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline Kat83

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Re: New diagnosis
« Reply #75 on: January 22, 2015, 12:50:25 pm »
I certainly plan on speaking with her before leaving, if only to inform her why I am choosing to do so.

As for being overworked, I don't think that is the case.  If it is, it's because she is playing catch-up as she's left on vacation twice in two months. 

I may suggest the television show as an alternative if her practice doesn't work out.

Offline Red Hen

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Re: New diagnosis
« Reply #76 on: January 22, 2015, 03:46:18 pm »
Kat83, Good for you! I like the t.v. show idea.
genotype 1a
completed 12 weeks Viekira pak and ribavirin
final results due around the end of April
Undetected 12 weeks post treatment!

Offline Lu

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Re: New diagnosis
« Reply #77 on: February 20, 2015, 10:40:52 am »
Hi, all.  I've been out of touch for awhile, nothing new to report. 

But I finally got the results of my HCV RNA test yesterday, and I do have hepatitis C, genotype 2, and a 7,924,270 quantitation, which I guess is viral load, right?  I don't know what any of the rest of the results mean, but genotype 2 means treatment with Solvadi and ribavirin, I think.  Is that right?  The doctor said my blood work looks really good, for whatever that's worth. 

What does HCV log10 mean?  Mine was 6.899.  Everything else on the blood work is within normal limits, as far as I can tell.  There's a lot of information on there, and if anyone can tell me what's important and what isn't, I would appreciate that. 

I really like my doctor, she seems very knowledgeable and on top of things.  Not so sure about the office staff, it took almost three weeks and five phone calls to get my results, which I'm sure they had within a week.  I hope that's not a reflection on the doctor.  I have an appointment with her on March 30 to discuss treatment options.

So I'm certainly not happy about it, but I'm not too bummed, either.  If this had to happen, I know I'm lucky that it happened at this particular time.  I have only told one person (besides all of you), but I have to start now.  I really dread that.  Any insight you can give me would be great.

Thanks to all!




Offline Katie

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Re: New diagnosis
« Reply #78 on: February 20, 2015, 01:20:34 pm »
Hi Lou,  A logarithim is a short cut for really big numbers.  If the question put to you is "How many numbers do we multiply to get 7.924.270 with a base of 10 (how many 10's)?   You basically count how many 10 places and in the case of millions it is 6, (10 million or more would be 7)  It is the reverse of squaring or cubing....(exponential) a number.

Example How many 2's (base of 2 instead of 10) do we need to get to 8?

2 X 2 X 2 = 8 so the answer is log(2) = 3

Base 10 is usually used in science or medical calculations and it just makes dealing with very large or very small numbers easier to deal with.  Hope that helps.

I didn't tell anyone other than medical professionals, my dentist, my chiropractor/acupuncturist and my immediate supervisor and one good friend.  It can be a burden keeping it to yourself, but I didn't want the gossip or fear, and it wouldn't have been good at my job.  For me, this was the right choice.  Since I have been on treatment, I've told a few other friends, as I knew they suspected something was wrong with me.  Now that a cure is possible, giving them the information is much easier on both my friends and myself, so that is in your favor.

I have to warn you, if you chose to tell people, very few understand the disease (even medical professionals) and you are going to have lots of questions to answer or they don't think it's a big deal because you look fine, or they are scared to death to be in the same room with you.  HA!

It is your business and you are not required to tell everyone in your life and you will not infect these people.  Just remember it is a blood to blood transfer so it's not that easy to infect anyone with a few precautions.

Good luck with your treatment and be sure to make a list of questions to ask your doctor.  It's the only way I remember what to ask, and don't get side tracked!

Katie
« Last Edit: February 20, 2015, 01:27:41 pm by Katie »
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Lu

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  • Posts: 30
Re: New diagnosis
« Reply #79 on: February 21, 2015, 09:58:36 am »
Thanks, Katie!  You must be super smart, especially since you were able to explain it in a way that even I can understand  :)   Math has never been my strong point.

I'm with you about telling people.  Except for my daughter and two close friends and those who need to know (i.e., medical), I don't think I'll tell anyone.  It would serve no purpose that I can see.  I appreciate the advice from someone who has been there.

The only questions I can think to ask are about side effects and length of treatment, although I think I already know a bit about those things.  It seems like, for genotype 2, Solvadi and ribovirin is the only option and there's a lot of information out there about it that I've already read.  Insurance coverage is only other variable I can think of.  Can you suggest other things I need to ask?

Thanks for your feedback.  It really helps!

Offline Katie

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  • Posts: 784
Re: New diagnosis
« Reply #80 on: February 21, 2015, 04:26:43 pm »
Hi Lu...not that smart, I spelled your name wrong!  Ha!  We all are "smart" in certain areas and I've always enjoyed math.  I did tutoring in college and volunteered to teach a basic math course for Adult Ed.  That's something I might do again in the future, as it was fun and rewarding to see the "light bulb" come on.  Many people have a block with math or they didn't get a good foundation in the beginning due probably to a bad teacher.  With my background, I found some of those minor misunderstandings that caused huge problems later on and know where people have problems.  Instead of doing crossword puzzles, I did math problems for fun.  Glad I could help you with that!

As you progress with your treatment, questions might arise.  I kept a bit of a journal and marked down differences (mostly good and some bad) and the duration as symptoms would come and go. The doctor asked me about anything I was experiencing so it was good having that so I wouldn't forget something that might be important for others under his care and for mine as well.  It is so easy to have your consultation and then on the way home realize you forgot to ask about something because you got distracted. 

Be sure to get hard copies of all of your tests and I like to get the doctor notes as well as many times the transcripts can have errors in them with what I have told the doctor during a conversation when he was taking notes where I perhaps didn't make myself clear.  If you are taking any other medication (including over the counter) or supplements be sure and ask about that and if the doctor says it is good to take as if there is a time frame that would be better.  Better to be safe than sorry.  Someone on this forum taking your treatment como may have more specific questions to ask so you might want to put your question out on a different thread.

Enjoy your weekend and hope all goes well for you!

Katie
« Last Edit: February 21, 2015, 04:34:15 pm by Katie »
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Lu

  • Member
  • Posts: 30
Re: New diagnosis
« Reply #81 on: February 22, 2015, 08:19:30 am »
Thanks, Katie!  I don't have much of a history with doctors and sharing your experience is a godsend for me.  Such good ideas!  Obviously, you are smart and thoughtful in many areas.

Thanks so much for your help.

 


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