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Author Topic: I'm so scared.  (Read 14163 times)

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Offline Thisisntreal

  • Member
  • Posts: 6
I'm so scared.
« on: May 17, 2016, 07:59:01 pm »
I don't really know what I'm doing here. I found myself searching and searching and searching online until I ended up here. In some ways I feel like even just typing this out may help me calm down a bit. Or at least I hope. I am a single 23 year old mother to a beautiful 4 year old boy. Growing up I was always the one that was against drugs of any kind since Ive lost everyone I've loved due to their addiction. Until I turned 21 and was going thru a huge depression. I didn't know what to do or who to talk to and then this guy offered to shoot me up with a pill that will make it all go away . I thought what the hell I figured I had it the worst so I just tried it. I let him inject me with needles to get away from the problems in my life for maybe three months and then I realized I was turning into every other one of my family members that I promised I would never be. So I quickly stopped hanging out with those people and never touched anything again. I carried on with my life working and taking care of my son living a happy life. About two weeks ago I went to try to donate plasma just to try it for a little extra money I guess I don't know. I receive a letter in the mail yesterday saying I need to go back to the plasma center and talk to the nurse. I'm confused, but I head up there having no idea what they would send me a letter about and she tells me I have hepatitis c. I drive home freaking out thinking why me. How!?? This couldn't be happening to me. So I called and made an appointment with a doctor today bawling my eyes out because I have no insurance and don't know if I could die or if I can touch my baby. I'm so scared. I feel like I'm a walking virus I could barley control myself at work today I've never experienced a depression like this I just can not believe I have this. I don't know what to expect or what to do I'm just so scared. I wish I would wake up from this nightmare already.

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: I'm so scared.
« Reply #1 on: May 17, 2016, 09:03:18 pm »
Thisisntreal, you've come to a good place, because we've been there and are either already cured or on our way to being cured.

You CAN get cured and live a normal life span, and you CAN touch your son. Many people here had hep C for years or decades before it was diagnosed, yet their children don't have it. The CDC has a good FAQ that will answer your questions including about how it is and isn't spread:
http://www.cdc.gov/hepatitis/hcv/cfaq.htm

You've taken the most important first step: made an appointment with a doctor. Further testing will determine which subtype of hepatitis C you have and therefore which treatment will work best. There are people on the Hep Forums who can help you figure out how to get the treatment paid for.

Welcome to your new support community.

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 Thisisntreal

  • Member
  • Posts: 6
Re: I'm so scared.
« Reply #2 on: May 18, 2016, 08:56:03 am »
Thank you so much for the reply. I think the hardest thing is accepting I have it. It just feels impossible. But I am ready to go to the doctor today and figure out the next step.

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: I'm so scared.
« Reply #3 on: May 18, 2016, 10:15:43 am »
Thisisntreal, your reaction to the diagnosis is very common. Please don't beat yourself up over how you may have gotten it. In the U.S., "3.5 million (range 2.5 million-4.7 million) people are estimated to be currently infected with hepatitis C, according to a 2015 study by Edlin et. al." ( http://www.cdc.gov/hepatitis/hcv/hcvfaq.htm )

I hope your doctor is empathetic and knowledgeable about the latest treatment options, because they are effective and generally easy. (Up to a few years ago, the treatments were difficult.) Please let us know how your appointment goes.
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 morab

  • Member
  • Posts: 232
  • Lives in the woods
Re: I'm so scared.
« Reply #4 on: May 18, 2016, 11:56:01 am »
thisisntreal
welcome aboard! You found the place to talk to many people in your shoes!
Just know that there are so many like you here on this forum ready to give you emotional support.
You have nothing to be ashamed of!
We all care, so keep us posted!
Morab
3/2016 G 1a
Alt 84
Ast 62
Fibrosis score lab 0.66
quantitation 894,670
4/23/16 day 6, naive Harvoni 12 week treatment
5/27/16 week 4 lab results UNDETECTED AST 23 ALT17

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: I'm so scared.
« Reply #5 on: May 18, 2016, 01:49:15 pm »
I am glad you found this forum, thisisntreal, as it has been a life line for me during one of the most difficult times of my life.  We all have had those "why me?", "what have I done", "what was I thinking?", "am I going to die" thoughts upon learning of this diagnosis, trust me!! It's a very scary time, I remember it well. 

I found that knowledge helped me to feel in some control of what was happening to me, and you may, too.  Familiarize yourself with the website hcvguidelines.org for valid and accepted information on HCV treatment.  Read as much as you can, when you feel you are ready, and be sure to ask your doctor any and all questions you have to put your mind more at ease. You are entering this at a very dynamic time for HCV treatment, with more good, safe and tolerable options available than ever before. Cure rates are in the mid-90 percentile, much better than the options available not so long ago.

You will find a lot of great info on this site, along with a lot of support.  We understand! There are a lot of amazing, smart and compassionate people on this site that I hope you find comfort in conversing with. Let us know how it goes with you first doctor appointment.  Hang in there!!  FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: I'm so scared.
« Reply #6 on: May 18, 2016, 07:49:30 pm »
Hello and welcome

Just to chime in that hep c is a very slow acting illness and takes decades for most to have liver damage if they ever do. The stats say after 20 years of infection about 20% of people will develop liver cirrhosis but that means 80% do not.

Hep c is not easy to transmit Hepatitis C virus is not spread by sharing eating utensils, breastfeeding, hugging, kissing, holding hands, coughing, or sneezing. It is also not spread through food or water.

There are ways to obtain meds without insurance there are folks here who know about that process so come back and ask your questions and we will do our best to help.

You will be OK

Best to you
Lynn
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 Thisisntreal

  • Member
  • Posts: 6
Re: I'm so scared.
« Reply #7 on: May 19, 2016, 10:42:45 am »
Thank all of you for taking the time to make me (a complete stranger ) feel better. Honestly its made me fell so much better knowing I'm not the only one. I went to the doctor yesterday. Should couldn't do much but she did make me feel a little bit better about being around people and my son without infecting them. I think that's the scariest part. I feel like I'm gonna be paranoid for the rest of my life about any little cut or dot of blood on me. Anyways she referred me to this clinic in a town by mine that does further testing to see what kind I have for people that don't have insurance.. I haven't got ahold if them yet but hopefully soon! My son goes in Friday to make sure he doesn't have it. After that's done I think I will feel a lot better. Once again THANK YOU ALL for your replies. I really can't tell you how much its made me feel better and not so alone.

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: I'm so scared.
« Reply #8 on: May 19, 2016, 11:53:03 am »
Sounds like the ball is rolling and I am sure you will have a big sigh of relief once your son's test results are in.  Once you get info from the next doctor appt you will know a lot more about what your options are.  Get that appt as soon as you can, for your mental well being! Keep us posted, FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: I'm so scared.
« Reply #9 on: May 19, 2016, 11:56:34 am »
Ditto everything FT said. Glad you have access to a clinic for those without insurance.
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 FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: I'm so scared.
« Reply #10 on: May 19, 2016, 12:02:19 pm »
Another point I forgot to mention:  If you contracted HCV when you were 21 and your son is 4 years old, it is close to impossible that he has it.  This is transferred via blood, so unless your blood and his have mixed since you contracted this, he won't have it. But I totally understand that you want him tested to be sure!  FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline Thisisntreal

  • Member
  • Posts: 6
Re: I'm so scared.
« Reply #11 on: May 19, 2016, 12:07:05 pm »
I guess I'm just scared because I think its possible that if I have a cut or something on me he may have touched it or he may have a cut on his had or something and I touch it. Isk sounds crazy but I just don't know how easy it would be to get into someone else's blood. And what if I'm cooking and somehow some way get blood on some food and someone eats it. ( because I work in a kitchen wearing gloves obviously but its possible) can someone get it by eating that food? Can I ever have a baby without it having this when it's born.  Can I ever have sex again? There's just a million questions

Offline Thisisntreal

  • Member
  • Posts: 6
Re: I'm so scared.
« Reply #12 on: May 19, 2016, 12:13:18 pm »
Also. In the past I've shared razors with friends and family. I'm sure within the last 2 years. What are the chances of giving someone this virus that way? If anyone knows

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: I'm so scared.
« Reply #13 on: May 19, 2016, 12:31:08 pm »
Hep c requires blood to blood contact you cannot get hep c from eating or drinking something even if contaminated with hep c infected blood.

Even if a health care worker experienced an accidental needle stick involving a patient with known hep c the risk is about 1.8%

The CDC does recommend not sharing personal items like tooth brushes, nail clippers and razors which could carry blood from one person to another but the risk is low especially when you think about the needle stick risk but the risk of sharing razors is not zero.

The risk of mother to child transmission at birth (called vertical transmission) is about 5%. For monogamous couples in a long term relationship the CDC does not recommend using barrier protection i.e. condoms there are many here who have been married many years where one spouse has hep c and the other does not.

That being said if you engage in rough sex or have multiple sex partners or one partner has HIV then that does increase risk and you should use barrier protection.

But you will get treated and cured so you will be able to put this all behind you soon

Hand in there and see your doctor. Come back with any new questions and we will try to help 

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 FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: I'm so scared.
« Reply #14 on: May 19, 2016, 12:39:23 pm »
Thisisntreal, I am one of the people who had HCV for 40+ years,  married and monogamous for 37 years, and my husband tested negative when we found out I had this 5 years ago.  It has to be your blood mixing with someone else's blood, so it's actually pretty hard to transmit. 

If it wasn't transferred via blood, then everyone would probably have it!! Keep that in mind.  FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline Thisisntreal

  • Member
  • Posts: 6
Re: I'm so scared.
« Reply #15 on: May 19, 2016, 03:40:09 pm »
Thank you all so much for he helpful information

Offline drummerman

  • Member
  • Posts: 538
  • For those regarded as warriors....
Re: I'm so scared.
« Reply #16 on: June 05, 2016, 03:02:06 pm »
Hey This,

Try to calm down a little.  I highly doubt you have infected anyone else.  My marriage went through 35 years of my hcv and my wife never contracted it.   Blood to blood contact is the only way to transmit.

Also, I think both Harvoni and Viekira both have programs to help people that can't afford the meds.  ( I may be wrong here, others please chime in).

I also saw on the internet a guy that goes by "coach" that has been able to arrange for meds to be shipped from India(?) .... much cheaper.

Keep searching and asking question , you'll get through this .. and like others have said, it is a slow progressing disease.   I didn't really have any symptoms for 40 years and had very little liver damage. 

Be relieved and thankful that you live in a time period when the meds are very effective and work.  Others were not so lucky.

good luck!
dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Mike

  • Member
  • Posts: 999
Re: I'm so scared.
« Reply #17 on: June 22, 2016, 12:09:34 pm »
Hang in there.

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

Offline brie41

  • Member
  • Posts: 191
Re: I'm so scared.
« Reply #18 on: June 22, 2016, 08:29:55 pm »
Hi,
 
  Wow, I could have written this post.  I totally know how you feel and I felt very much the same way when I found out.  I freaked out and literally thought I might have infected family and friends too.  It was the most awful part of getting this diagnosis.  It doesn't matter how we got here, but here we are, so we must deal with it.  I had my Husband and Son tested asap.  I tried to get my Sisters tested who I shared razors with, but they refused and said I was being paranoid.  So I educated myself, found a good Hepatologist.  I am sure you don't have any liver damage yet, I probably have been infected for over 20 years at this point and I have very little damage.  I have band aids on me at all times and liquid bandage too.  I just like to be prepared just in case.  Don't be afraid to touch your baby, you will not infect him.  Just love him and know he will be just fine.  I promise!  I was lucky in a way that my Son was 7 when I found out and yes I felt that way too.  I just had to go with the fact that the 2 people closest to me didn't have it, but it took some time for sure.  Hang in there.  Brie
Diagnosed  HCV, 1A 2006
Viral load 6 million
Ast/Alt always in the 20's
F0-F1, never changed
Treatment naive, started 8 week Harvoni 3/15/16
4 and 8 week labs undetected
6 week eot labs undetected
13 week eot UNDETECTED!

 


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