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Author Topic: Just diagnosed confused  (Read 10940 times)

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Offline angel1022

  • Member
  • Posts: 4
Just diagnosed confused
« on: October 12, 2015, 03:37:08 pm »
Okay let me start off I am 24 female with 2 kids. One is 3 and the other is 11 months. When I was pregnant with my first son they told me one of my hepatitis tests came back positive so they retested and it was negative, and I never heard anything about it again. When I was pregnant with my second son my ob told me I tested positive for hep c but I had to wait til after I was pregnant to do anything. So finally last week I met with my gi dr and he asked me questions and stuff checked me out. He told me he doesn't think I have the virus but he did blood work anyways. Well I checked my chart online and it says my iu is like 266,000 and hcv is detected. Im confused because he was sure I didn't have the virus. Also I have never done any drugs of any sort. My mother had hep c when she was pregnant with me and she died from cirrhosis. I do have tattoos though. I'm very confused and scared

Offline byebyeC

  • Member
  • Posts: 286
Re: Just diagnosed confused
« Reply #1 on: October 12, 2015, 04:32:11 pm »
Hi Angel1022,

Welcome to the forums. I know it's really difficult. But, try not to focus on how it happened. People have gotten it all kinds of ways. But we do know it must be blood to blood. So your children are likely safe. They should be tested. But it's unlikely. I was hcv pos when I gave birth to both of my non hcv boys. I've been married for 25 years and he passes his annual physical for work being negative.

Now that you know. It's a great time to be seeking treatment. If you have ins, depends on where you are in the world, you can get meds for free through Proceed or Support Path the inside the drug company's assistance programs.

If you're out of the US compassionate access may be available.

Once you get that info, try to fill out your signature through your profile with:
Viral Load VL
Genotype GT; 1a, 1b etc.
Treatment Tx Harvoni/Viekira pak + Riba/Sol/Oly/Dak etc. and length of tx
Beginning blood tests on ast, alt, bilirubin

God bless you getting going on tx as soon as possible. The sooner you get going the sooner it gets gone :)

Marianne
GT 1a
VL BOT 7 M
Diagnosed 1980
Treatment naive
12 wk Viekira Pak Riba Started 9/7/15
Alaska 
Pre-treatment labs were ast 42 alt 33 vl 7,162,(eyes are light yellow now)
*Latest alt 19 ast 23! Yay! VL <15 detected

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: Just diagnosed confused
« Reply #2 on: October 12, 2015, 04:36:01 pm »
Okay let me start off I am 24 female with 2 kids. One is 3 and the other is 11 months. When I was pregnant with my first son they told me one of my hepatitis tests came back positive so they retested and it was negative, and I never heard anything about it again. When I was pregnant with my second son my ob told me I tested positive for hep c but I had to wait til after I was pregnant to do anything. So finally last week I met with my gi dr and he asked me questions and stuff checked me out. He told me he doesn't think I have the virus but he did blood work anyways. Well I checked my chart online and it says my iu is like 266,000 and hcv is detected. Im confused because he was sure I didn't have the virus. Also I have never done any drugs of any sort. My mother had hep c when she was pregnant with me and she died from cirrhosis. I do have tattoos though. I'm very confused and scared

Hi Angel. And welcome to the forums!

From what you have posted here, it does appear that you have Hepatitis C with a viral load of 266,00 IU/mL of blood. I am not sure why your GI would tell you that he doesn't think you have HCV in advance of actually seeing the viral load results. Perhaps he was just trying to calm & reassure you. But really that just leads to confusion when your tests results come back showing that you do have HCV in your body.

There are many ways to contract HCV beyond injection drug use. But ultimately, it doesn't really matter how or when you got it (although all of us try to answer that question at some point for ourselves - it's natural to want to know). All that matters is that you have it, and this is an illness that can now be cured with a few weeks of pills. So you're going to be okay! :) Another good thing to know is that nearly all liver damage is reversible once the virus is eliminated from your body.

You will need to find out your genotype and level of liver damage (fibrosis score). Genotype is determined by a blood test. Fibrosis stage is usually determined by fibrosure (blood test) or a fibroscan (similar to an ultrasound).

And then a treatment for you can be determined by you and your doctor. Different genotypes get different treatments. And higher fibrosis score sometimes warrants different or additional treatment. But everybody can be cured of this. That's the important thing to remember.

Fell free to post any questions or lab results here on the forum. Lots of people here can help you through the process.

best,
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 willie g

  • Member
  • Posts: 427
  • geno 1 25million etc. s/o for treatment
Re: Just diagnosed confused
« Reply #3 on: October 13, 2015, 03:51:03 am »
HI ANGEL,boy I was scared too,I remember I instantly went to the dollar store and bought all new hygiene products and when my grandson stayed overnight a week later he was (3at the
 time) and I walked into bathroom he was brushing his teeth, I paranoidly said Hey! What are you doing ! (Thinking he might have used the tube of paste I now used.) He looked starteled and I pulled back the reigns a bit and said " oh good boy,I was just wondering where you were? Which defused any tensions I had created.  Well LATER we sat and talked about stuff like we do ANDD then I explained about my new situation and the precautions he should take. He amazed me by saying afterwards " GrandpaGator was that why you were upset earlier in the bathroom?" Blew me out of the water,! Kids feel and know alot more than we think sometimes.  Anyway he is four now and I am better now and all I want to add is ANGEL you are in your CREATOR'S hands and your children are ESPECIALLY protected.I believe that in my heart. Just get the wisdom to know as you will thru prayer and the folks on this site and others who have been right where your at. YOU MY FRIEND are not alone which is a blessing and YOU MY FRIEND RELAX,you are in the right place at the right time. Don't let folks that are SAY somewhat Dysfunctional put a damper or bad thoughts in your mind. Just row the boat that we are all humbly given and you will look back on this in the near future and realize everything was and is OK. You'll see.   Baby steps for now and Faith.  " Just Willie g" GATORFALLS

Offline TexasC+

  • Member
  • Posts: 72
Re: Just diagnosed confused
« Reply #4 on: October 13, 2015, 12:45:12 pm »
Get a viral load and a genotype done , if your doc won't order it get a new doctor. This is curable and there is no reason for any one to have to wonder or stay positive with the medications now available.
Take a breath, get educated on the disease and treatments. Takae care of you and your liver. Eat healthy, rest and avoid anything that could put a stress on your liver.
Genotype 3a
diagnosis date 4/29/15
treatment naive
viral load 6 million
unknown date of infection
Sovaldi and ribaviron  24 weeks started 6/1/15
End of treatment date 11/15/2015 VND last 2 labs
3 month follow up 2/22/16 NEGATIVE !! NOT DETECTED

Offline angel1022

  • Member
  • Posts: 4
Re: Just diagnosed confused
« Reply #5 on: October 14, 2015, 11:55:17 am »
Hello all, thanks for your kind words. I found out today that i am genotype 1a, but my dr hasn't called to let me know what that means. My appointment for an ultrasound and fibrosis test is in 2 weeks. Anyone care to let me know what a fibrosis test is and also what genotype 1a is? Thank you

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Just diagnosed confused
« Reply #6 on: October 14, 2015, 02:20:32 pm »
Think of a genotype as a "strain." Just as there are many different strains of flu, and each year's flu vaccine tries to protect against the most likely 3 or 4 strains, there are different genotypes of Hepatitis C virus. Each genotype responds better to certain treatments, so the 1a tells your specialist which treatment protocol is best for you. The number "1" and the letter "a" are just labels to distinguish one type (the number) and one subtype (the letter) from the other types and subtypes of Hep C.

The fibrosis test will tell whether there is scarring on your liver and, if so, how much. Your specialist needs to know this because, for example, it can affect the length of time you should be treated. No matter what fibrosis score (F0 - F4) you end up with, a suitable treatment is available.

Best of luck to you.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline angel1022

  • Member
  • Posts: 4
Re: Just diagnosed confused
« Reply #7 on: October 30, 2015, 12:07:53 pm »
Well I just found out today that my fibro score is f0-1 he said it was like 4.5 and no scarring. But he said my insurance will not pay for treatment and I asked if it will get worse he said in like 20 years.  My genotype is 1a. And I'm only on Medicaid. He said I would have to get a job to get treatment.

Offline JAF

  • Member
  • Posts: 49
Re: Just diagnosed confused
« Reply #8 on: October 30, 2015, 12:40:34 pm »
Angel welcome. I was also HepC positive while I was pregnant and both my children were tested and are negative. They are turning 31 and 19 before the end of the year. So don't stress about that. As far as Medicaid not paying for treatment, I don't know if it works different from state to state or how serious your condition is but I'm in NY and I'm on Medicaid. My doctor submitted me for approval and we got it within 2 weeks. Maybe since your VL is so low they don't feel the urgency and they'd rather wait for cost to come down. Do not give up. This forum will give you lots of info.
Female; 56; New York
Infected: mid 70's
Diagnosed: 2000
Treatment naive
Began Sovaldi + riba (1200 mgs) on 10/15/15
GT 2b
PRE-TREATMENT:
VL: 2,412,570
AST: 50
ALT:  52
Fibrospect index: 42

4 wk labs done 11-14. Waiting for results

Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: Just diagnosed confused
« Reply #9 on: October 30, 2015, 02:10:06 pm »
Fibrosis is very slow moving generally, but for some more rapid than others, though it does take years.  As I am sure everyone agrees (everyone but the insurance companies) it should not matter how much scarring or how high or low your viral load is.  We live in an era where a mostly incurable disease is potentially 90% curable.  This does not happen very often.  It is the responsibility of everyone on our planet to encourage a system that makes it possible for everyone infected to recover.  Angel, fight tooth and nail to get approved.  There are others with your number who have pulled it off.  Find out who they are and find out how they did it.  Get your doctor to fight for you...if he won't...then get another.  Write strong letters to everyone.  Walgreen pharmacy put up a fight for me, so find a corporate and powerful phamacy to take up you cause.  Never relent...you will succeed.  Everyone on this forum will pull for you and there are folks that will chime in after with good ideas.
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Just diagnosed confused
« Reply #10 on: October 30, 2015, 04:16:35 pm »
Angel, you can take a deep breath because F0-1 and 4.5 means you are in the very early stage of the disease. Your liver is still in very good shape and, as beto said, fibrosis is very slow moving. So there is nothing to panic about today or next week or next month.

But as beto also said, you should get treated so that your liver can stay in very good shape and can repair itself. One of our moderators, Lucinda Porter, RN, recently posted a thread called "Financial Assistance for Hep C." You can find it here:
http://forums.hepmag.com/index.php?topic=3530.0
It includes a link to the actual article containing information on places to contact to try to get financial assistance. Since you have genotype 1a, the medicine Harvoni manufactured by Gilead is an excellent choice of treatment, so that is a place to start. Other people on these forums have obtained their treatment through a clinical trial, so if you aren't able to line up financial assistance another way, you may be able to find a clinical trial for which you qualify.

Best wishes,
Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Coach Mike

  • Member
  • Posts: 292
    • Affordable Hepatitis C Treatment
Re: Just diagnosed confused
« Reply #11 on: November 15, 2015, 08:46:25 am »
Hi,
You can get treatment in Australia. The plane ticket will be the biggest expense. Check out fixhepc.com
Good Luck!
Mike
Genotype 1a, Biopsy:11/2014: F-1, Tx Naive
Fibrosure, 7/20/15: F-1-2
Pre tx v/l: 1,600,000, ALT: 75, AST: 48
Started generic sofosbuvir & ledipasvir: 10/23/15
4 wk labs: 11/19/15, ALT: 21, AST: 16, V/L:  UND
Started 8 week Harvoni tx: 11/20/15
8 wk labs, 12/15/15, ALT: 15, AST: 13, V/L: UND
4/11/16 12 week EOT-Undetected
7/5/16 SVR 24

 


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