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Author Topic: Just starting out  (Read 9389 times)

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Offline Jersey

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Just starting out
« on: November 25, 2015, 11:58:47 am »
Okay everyone first time being on this forum and posting I'm not sure what all your abbreviations mean I mean I don't know what type hep c  I have I  got diagnosed about 10 years ago and did nothing I'm deciding to start by going to see a gastroenterologist, not really sure what to expect I see people talking about viral load, ast, Bili and all kinds of numbers I would like for some of you to explain what these abbreviations stand for and maybe give me some ideas on questions I should ask the doctor I'm hoping they start with blood work and of course a biopsy and I'm hoping that they can start me on the harvoni. Thank you all for your help in advance

Offline KimInTheForest

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Re: Just starting out
« Reply #1 on: November 25, 2015, 12:07:34 pm »
Hi Jersey, and welcome to the forums! Good to have you here. :)

It sounds like you are on the right track by making an appointment to go see a gastro. That's a good place to start. He/she will probably send you for a genotype test right off the bat. That is the most basic thing you and your doctor need to know in order to determine which treatment to start you on. Different genotypes of Hep C receive different treatments (although progress is being made toward one universal treatment that will work for all genotypes).

Your Gastro will probably also send you for a non-invasive test to determine your level of fibrosis (liver scarring). That test can be either a fibroscan (like an ultrasound) or a fibrosure (blood test). Viral load is also useful to know, so your gastro will probably send you for that test as well.

Somewhere there is a link to a list explaining all the abbreviations. Maybe someone else can find that. I am not sure where it is.

Good luck! :)
kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Jersey

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Re: Just starting out
« Reply #2 on: November 25, 2015, 12:14:20 pm »
Thank you Kimintheforest , this is very useful information to know and anybody can find that link and share it for me that would be great I'm very scared to even think about the biopsies and all the horror stories I've heard I'm just not sure I'm ready for this but I guess there's no better time than the present

Offline KimInTheForest

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Re: Just starting out
« Reply #3 on: November 25, 2015, 12:20:57 pm »
Thank you Kimintheforest , this is very useful information to know and anybody can find that link and share it for me that would be great I'm very scared to even think about the biopsies and all the horror stories I've heard I'm just not sure I'm ready for this but I guess there's no better time than the present

Don't worry about scary stuff, Jersey. Biopsies are almost a thing of the past. Very few Hep C people get biopsies anymore. And really, the rest is easy. Treatment these days is all oral (pills, not injections) lasting only a few weeks, and with minimal side effects for most people, and a very high cure rate rate - often 95% or higher, depending on your situation. Honestly, the hardest thing these days about getting treated/cured of Hep C is battling the insurance company to get covered for the new drugs. Some people get covered right away, others have to go through a lengthy appeals process. And some of us (like me) get our drugs through clinical trials and get cured that way.

But really, nothing much to stress over these days.

Keep posting your questions. :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Jersey

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Re: Just starting out
« Reply #4 on: November 25, 2015, 12:25:08 pm »
I have already contacted our insurance and I know they cover the Harvoni under a specialist Pharmacy all I would have to pay the copay which is fine considering the cost of the prescriptions are expensive as heck.  Thank you so much with the help with this kimintheforest.  This is great news to hear thank you for putting that smile on my face today

Offline KimInTheForest

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Re: Just starting out
« Reply #5 on: November 25, 2015, 12:26:39 pm »
That's great, Jersey!

Here is the link to that list of abbreviations, posted by one of the forum moderators a while back (Lynn K):

http://forums.hepmag.com/index.php?topic=1653.msg12340#msg12340
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Jersey

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  • Posts: 4
Re: Just starting out
« Reply #6 on: November 25, 2015, 12:28:59 pm »
 ;) Thank you,  I now have a lot of things I can look up today you have made my day so much better again thank you.  I know my diagnosis was about 10 years ago but how are these people knowing when they contracted it
« Last Edit: November 25, 2015, 12:35:52 pm by Jersey »

Offline KimInTheForest

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Re: Just starting out
« Reply #7 on: November 25, 2015, 01:43:45 pm »
I think most of us are making educated guesses about how/when we contracted HCV based on risk factors and potential points of exposure (e.g., gamma globulin shot, transfusion, wisdom tooth extraction, injection drug use, air-gun vaccinations, improper tattoos or ear piercing, surgeries from long ago... that sort of thing). It's true that most of us will probably never know with 100% certainty. I would say I am 90% certain that I contracted mine between 1970-1972.

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Philadelphia

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  • It only looks like I know what I'm doing
Re: Just starting out
« Reply #8 on: November 25, 2015, 01:57:27 pm »
Hi Jersey and welcome. As humans we love the certainty of knowing when we got this virus and how, but for me, the how and when aren't important. We can make guesses, but that's all they are, a lot of the time. Worry about the stuff you DO have some control over: your health and how to stay as healthy as possible.

I had the same overwhelming feeling when I  first started Posting here. It was information overload. Even now, there's some things I avoid reading about. Statistics about liver cancer isoneofthem.

But the basic stuff Kiminforest has mentioned is all you need. A specialists appointment, your genotype (the kind of family your virus belongs to), your viral load (how many copies of the virus you have floating round) and your fibrosis score (an idea of how damaged your liver is).

When you have that, you are on your way towards knowing how to treat this thing.

Read a bit, stop reading when you get confused, ask questions to clarify and remember, we've all been exactly where you are right now.
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline Philadelphia

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  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Just starting out
« Reply #9 on: November 25, 2015, 02:25:58 pm »
I don't want you to feel bad all by yourself about not knowing theabbreviations and acronyms used around treatment  every day. So to cheer you up, here's a blogpost I wrote about it. Go forth and feel better about yourself.

http://blogs.hepmag.com/gracecampbell/2015/04/hepatitis_c_the_thin.html
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

 


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