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Author Topic: New here - thoughts?  (Read 14030 times)

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Offline Ash1984

  • Newbie
  • Posts: 2
New here - thoughts?
« on: May 24, 2015, 10:30:40 am »
hello everyone,
I've been reading this forum for a few days now, and thought i could use some insight. you've also all been very helpful in not making me feel like i'm not alone.

I was just recently diagnosed on May 4th.
I went in for an STD screening due to thinking a UTI that wouldn't go away, and came back positve for HSV and Hep C!

The HSV (herpes) was a new infection, and didn't show in my bloodwork, and positive fror the Hep C antibody.

I was shocked.
I only told my boyfriend of the HSV and he was tested and was postive for HSV.
We have been together for 5 years. His doctor said he's probably had it a while with no symptoms. (no drug use or tatoos, healthy male)

I haven't told him yet about the Hep C, due to the fact I thought it could be a false positive after reading some about it.. and the whammy of the other virus.

I am a 30 year old female, generally healthy, (only high BP and some anxiety) with no history of any drug use.
 I have worked at a hospital for 7 years, but i'm clerical. and have 2 tatoos.
I've also read that it's hard to transmit sexaully - but not out of the question..

However, I was born 3 months premature, and had blood transfusions in 1984. After talking with my parents, they seem to believe they tested me for the hep C. but also believe it's possible i have had this since birth?

I had some more blood work done, and my viral load was 3 million.
I have an appoitment to see the GI doc on the 16th of June

I'm worried about both virus'. How this will affect me. my future..?
My liver panel was all normal. so that was good.. it has been my whole life. 

I'm worried if I  will even get approved for treatment. What my next steps are..
if I should even tell my boyfriend about this.
(i'm assuming -which i shouldn't - they tested him for this.) he said he was negative for everything else.

I really needed to vent. I've only told my family about this.
I feel that the stigma of both of these Virus' has changed me.
I just want to feel normal again.
 :-[

Thanks for listening,

Ashley 



Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: New here - thoughts?
« Reply #1 on: May 24, 2015, 11:19:45 am »
Hi Ashley. Welcome to the forums! :) I think you will find a lot of support and useful information here.

I believe there is at least one person on these forums who has had Hep C since birth resulting from blood transfusions. So that is indeed possible. It is natural and understandable, right after being diagnosed, to wrack your brain about how you might have gotten it. But in the end, it doesn't actually matter how or when or where you contracted it. All that matters is that you have it and need to turn your attention to getting treated. With the breakthrough in Hep C drugs in the last two years, the large majority of people who are getting hooked up with the new drugs are getting cured - and fairly quickly (compared to older treatments).

So, devasting as I know it is when you first learn you have HCV, it's actually not that bad of thing because of the point in history we have finally arrived at with treating this disease. So don't stress too much, but do keep moving forward through the hoops and hurdles and appointments to get set up for treatment.

I would think some of the 1st things that need to happen (and your GI will presumably look after this, but ask for it if he doesn't) is to have a PCR test to determine your Genotype of the virus, if you haven't already, and to have one of several possible tests to evaluate the condition of your liver - specifically, what stage of fibrosis, which can range from 0-4. Tests for that are Fibrosure and Fibroscan (non-invasive methods) or biopsy (invasive). Fibroscan does not seem to be accurate or useful with minimal fibrosis. But see what your GI recommends.

You will need all of that info (Genotype and Fibrosis stage) before any treatment decisions can be made.

Best of luck to you Ashley. And do keep us posted. :)

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 Mike

  • Member
  • Posts: 999
Re: New here - thoughts?
« Reply #2 on: May 24, 2015, 11:36:26 am »
Hi Ashley,

Being diagnosed with HCV can be scary and upsetting.

The good news is it can now be cured, and, if it's any consolation, this is the best time to be diagnosed, given the new, effective and well tolerated treatments currently available.

Regarding your boyfriend - you need to tell him your status, as not doing so could put his health at risk.

Although HCV is very difficult to contract through sexual activity, it can still occur.

The other issue is trust. What happens if you don't inform him of your status and he finds out through the grapevine? I would imagine a very uncomfortable conversation will be sparked.

I know discussing HCV status can be difficult; but is some instances it has to be done. A long term intimate relationship that you are still involved in is one of those instances.

You need to ask yourself: If the roles were reversed, would you want your boyfriend to tell you?

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

Offline Ash1984

  • Newbie
  • Posts: 2
Re: New here - thoughts?
« Reply #3 on: May 24, 2015, 12:33:42 pm »
Thank you both for your response!
And for your gracious welcoming.

I know in my heart I have to tell him. and I will. – thanks for perspective mike, I agree.

I need to find a good time to talk about it.
He’s still upset about having/giving the HSV to me.
I was scared to throw this in, too.

This month has been a blur, but has really opened my eyes on perspective.
I was totally clueless about any of this.

But I guess if I never got tested for this, I would have never known for about the Hep C.
There can be a silver lining I suppose. I could have found out a lot later in life.
and there is treatment now!

Kim, I will write those down to take with me for my GI appt. The only thing i'm aware she tested for was my Viral Load, and a liver panel.

Again, I appreciate your response.
And I will keep you posted.

oh, I wanted to ask, too, I only drink alcohol socially.
maybe 3 or 4 beers once every 2 weeks. do I need to stop completely?
i know it's not good for you - i just wonder if it will really affect me at this point?
I feel like i can't lose some of my social life too!




Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: New here - thoughts?
« Reply #4 on: May 24, 2015, 01:40:56 pm »
I stopped drinking alcohol the day I was diagnosed 20 years ago, and have not had a drop since. Like you, I only drank socially - maybe one beer or glass of red wine a day. As I understand it, alcohol is the single most damaging thing for our liver, of what we consume.

I also went online immediately and gave myself a crash course on what foods help the liver, and what hurts it. I reduced or eliminated sugar, salt, saturated fats and caffeine (although newer research suggests coffee is beneficial and may slow liver disease and inflammation). I stopped eating all junk food - candy bars, chips, store-bought cookies, etc. I doubled down on cooking and preparing everything from scratch and buying as much as possible certified organic. Nothing from cans, boxes, jars - all of which contain additives and ingredients you have no control over. In my case it made a huge and immediate difference. I had been very sick for three years (1991 to early 1995). And literally the day after I was diagnosed and started to make these dietary changes, I was much better - brain fog lifted, nausea subsided… so it does make a noticeable difference for your liver - even if you are not yet feeling ill.

Chances are you will probably get treated and cured fairly soon, Ashley. But even if your liver is not badly damaged yet, it is still a good idea to do everything possible to support and protect it at this point.

cheers,
kim :)
« Last Edit: May 24, 2015, 01:42:34 pm by KimInTheForest »
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 BubbaT

  • Member
  • Posts: 267
Re: New here - thoughts?
« Reply #5 on: May 25, 2015, 01:57:07 am »
Hi Ashley,

I would add this, think about getting well first...
Your health is a precious gift, protect your liver, you will be so glad you did...

I have dealt with a chronic infection since 95, and the effort to protect your health is well worth the investment...

Think of your health as an investment...

Age 57 male
Infected late 70's
Diagnosed 95
1a, 2 prev biopsy 95, 2004
Ct 2007, 2015
Treatment Naive
F4 A3. Fibrosure/ CT 2-5-15. Ammonia 222
VL 2.2 mil.
Started Harvoni  3-3-15. 12weeks, finished 5-26-15
4 week VL undetected
12 week EOT undetected

Offline Mugwump

  • Member
  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: New here - thoughts?
« Reply #6 on: May 27, 2015, 12:54:14 am »


oh, I wanted to ask, too, I only drink alcohol socially.
maybe 3 or 4 beers once every 2 weeks. do I need to stop completely?
i know it's not good for you - i just wonder if it will really affect me at this point?
I feel like i can't lose some of my social life too!

I kept drinking occasionally after being diagnosed with HCV in 1993. I wish that I had the fortitude to abstain from the first diagnosis!

My slow progress finally to cirrhosis would have no doubt been much slower. I am now 62. So I was diagnosed when I was 41.  I have no choice in the matter and must abstain for the remainder of my life so the hard choices about how I associate with others had to be made.

I have become a (edit) dedicated(/edit) designated driver most times when I socialize. If others do not respect this well it is just too bad. Two years ago, taking an intoxicated friend home from a bash, I went through a traffic road block and the smell in the vehicle was blatantly obvious when the constable came to my window. I just looked at the officer and said "he's the (edit) dedicated(/edit) designated drinker!" He just waived me through and laughed.

Don't make light of having HCV but it can have some very unintentional side effects, some of which you can learn to take in stride if you take care and do not over-react then let the virus rule your life.

I sincerely hope that you are quickly approved for treatment and do not have wait until your liver deteriorates before you are approved for treatment. Be proactive in this I am sure others will support your efforts!

Kind Regards
Eric
(edit)
I really meant to use the correct term and actually did when the incident occurred however the Freudian slip perhaps tells much about how your mind can be effected by drinking and others who drink to excess.
« Last Edit: May 27, 2015, 11:24:52 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 KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: New here - thoughts?
« Reply #7 on: May 27, 2015, 01:44:14 pm »
Since I stopped drinking altogether 20 years ago when I was diagnosed in 1995, it has been a very interesting and revealing experience to me to see how others react in social situations when I decline alcohol they are offering me. Most people are fine when I say "No thanks, not for me" or "I'll take a juice if you have it". I don't even say "I don't drink alcohol". And I suspect a lot of my friends have not even noticed that I never drink.

However, there are some friends (and it often surprises my who they are) who simply cannot take "no" for an answer where alcohol is concerned. They either cannot wrap their heads around someone declining alcohol at a party or social gathering, or they feel they are being a "bad host" if they don't get booze into you. Or (and I think this is the real reason) they are conflicted about their own alcohol consumption, but only have to confront that when somebody declines to drink alcohol. It makes them uncomfortable, so they try to rectify the problem not by self-examination but by forcing me to get alcohol into my body.

I have, on more than one occasion, had to ask one of these people: "Why is it so important to you to insert something in my body against my will?" That usually shuts them up. People are funny...

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 CureSeeker

  • Member
  • Posts: 121
  • Virus Free! Happy Dance Time!
Re: New here - thoughts?
« Reply #8 on: May 30, 2015, 04:06:52 pm »
hello everyone,

I'm worried if I  will even get approved for treatment. What my next steps are..
if I should even tell my boyfriend about this.
(i'm assuming -which i shouldn't - they tested him for this.) he said he was negative for everything else.

I really needed to vent. I've only told my family about this.
I feel that the stigma of both of these Virus' has changed me.
I just want to feel normal again.
 :-[

Thanks for listening,

Ashley

Hi Ashley,

So sorry you have to deal with this double wammy.  You have nothing to be ashamed of as far as HCV goes.  I dont think anyone really does, but you certainly have a rather respectable reason for having it.  Its not like a baby has any control over anything.

I wish you would have told the boyfriend already.  Most of us want open and honest relationships, and I cant imagine what it must be like to carry that 'secret' around all the time while you are with him.  Its hard to put forth a respectable reason AFTER someone finds out you have been being very sneaky.

He doesnt have to be positive for HCV, and from what Im reading on my pill bottles you will need to use 2 forms of birth control if you are of child-bearing age while undergoing treatment.  You will need to hide your toothbrush, razor and stuff just in case he might off-handedly use them.  Probably need to hide your pills.  I dont know how you would handle the two forms of birth control.

He might leave?  Oh well, at least you know where you really stand, got all the crying and screaming done with, and can go into treatment focused on yourself with all the emmotional stuff behind you.

I understand your fear, but its time to clean house and if that means the boyfriend too, well, that's on him.  If he finds out later down the road you have been hiding it - then it will be on you.

If he's a good man, he will stand by you.  If he doesnt stand by you, then you both have just been passing time while waiting for the right person to enter your lives.

Did you talk to your doctor about your relationship at all?

In the end, if you were the one in the dark, Im sure you would want him to tell you, right?

There is a bright side to all this - once you complete a relatively short treatment for the HCV, the only virus you will have to worry about is the HSV.  There are drugs to control HSV, but they generally take a heavy toll on your liver, so its important to discuss that with your doctor(s) too, or make sure those doctors are coordinating your care so you get the best results.

Everything is okay.  Life goes on.  The strong survive!  Live strong!

Best wishes to you and your boyfriend.  :)

Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.

~ Arthur Conan Doyle


Genotype 3a, F 0-1
Sovaldi & Ribavirin x 24 weeks

2/23/16 - UNDETECTED!  SVR12 achieved.  :D
6/21/17 - UNDETECTED!  1.5 years post treatment.
July 2018 - UNDETECTED!

Offline shootingforzero

  • Member
  • Posts: 30
    • shooting for zero
Re: New here - thoughts?
« Reply #9 on: May 30, 2015, 10:17:00 pm »
Hey Ashley, like you I found out I had Hep C from a routine blood test. I was 29. I had insurance for the first time in a long time and asked to be tested for "everything." I tested positive for Hep C antibodies which came completely out of nowhere for me. I felt healthy and had never even considered the possibility.
I too had a blood transfusion as a newborn, which is my most likely risk factor.

First off, know that it is highly unlikely that you've passed Hep C to your boyfriend. Also, you are lucky in that you've been diagnosed at a time when great new treatments are available, so in all likelihood you will never have to get sick from this disease.

Like you I was in shock and denial at first. I felt very alone and very paranoid about passing it to others, going over in my head all the possible times I might have exposed others to my blood. It took me a month or two to tell the dude I was seeing at the time. Part of it was fear of his reaction (he was very supportive, as it turned out) and part of it was that I had this intense need to be SEEN as a healthy person at the time.

Most of "the stigma" can be chalked up to ignorance. And some of it is in our own heads. Little by little I realized that most people don't know anything about Hep C and are fine with it when I tell them I have it and explain what it is and isn't. You have no reason to feel weird or ashamed of having Hep C. It says nothing about how you are as a person and it doesn't mean you're defective in any way. If someone has a bad reaction that says more about them than about you.

Apart from the fact that telling people you have sex with that you have Hep C is the "right thing" to do, you also need to tell your boyfriend for your own sake. If you carry this huge secret around it will eat away at you and it will get in the way of real intimacy. I worked through all that eventually, you will too.

Take the time to educate yourself on your situation and on Hep C in general. Feel the feelings you need to feel, then tell him. Give him some space to digest it and plenty of information to read up on.

I've dated a lot of people since I was first diagnosed with Hep C six years ago and I always tell them. (It wasn't easy at first, but it did get easier.) I've only had one person react badly to it and he came back to apologize later. Turns out he wasn't a very nice person to begin with so I should've taken his reaction to my disclosure as a warning sign, but that's another story.

I've had a lot of ups and downs with my feelings about it, but on balance it's not been a terrible thing to have to make healthier choices, both in terms of taking care of my body and who I date.


« Last Edit: May 30, 2015, 10:27:21 pm by shootingforzero »
------------------------------
35 years old, female
GT 1b, F1-2

5/28 2015: Started treatment with Viekira, 12-weeks, without ribavarin

Pre treatment: AST 35 ALT  33 VL: 2 million IU/ml
Week 4:      AST 19  ALT  11 VL: <1.18 IU/ml detected
Week 8:      AST 18  ALT  13 VL: <1.18 IU/mil undetected
Week 12:    AST  18  ALT  11 VL <1.18 IU/mil undetected
Post treatment:
EOT 4:        AST  16 ALT 12  VL <1.18 IU/mil undetected
EOT 12:      AST 18  ALT 11  VL <1.18 IU/mil undetected

Offline Mugwump

  • Member
  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: New here - thoughts?
« Reply #10 on: May 31, 2015, 03:08:00 am »
shootingforzero! WELL DONE

Thank you for a wonderfully clear and compelling post about the emotional and rational side of being first diagnosed with HCV .

I clearly remember the low of having to confirm to my wife and at the time my quite young daughter the fact that something really serious was wrong. Back  when I was diagnosed at the end of 1993 the stigma was very difficult to deal with indeed. Many, many things come into play to complicate the situation, simple things like using kitchen utensils, wash cloths, towels and especially personal items suddenly became a complicated affair.

Some people who I chose to tell suddenly began treating me, my wife and my daughter like lepers!

Thank God this situation has finally started to change and the level of education about the disease and the real truth about how it only began to spread rapidly by insane human conflict beginning about 1940 is now becoming understood.  In fact I clearly remember having my childhood kindergarten vaccination by a new fangled "injection gun" that was subsequently removed from use!  But I may have also acquired it in my mid teens from drug use or from a backroom tattoo by someone who did not use an autoclave and also used the same inks on different individuals to save cash. So who really knows how some of us have acquired the disease.

But this is not the point, surely it does not matter how any of us have acquired the disease the only thing that matters is the truth about what it is and how best to deal with it.

Kindness to yourself will give you the courage to be kind to others when they are not kind to you and this is a priceless human trait.

All the best in the future for those who face this challenge.
Eric
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline shootingforzero

  • Member
  • Posts: 30
    • shooting for zero
Re: New here - thoughts?
« Reply #11 on: May 31, 2015, 03:39:56 am »
Thanks Mugwump.

I agree, it doesn't matter why we have Hep C. Most of us will never know for sure anyway. What matters is that we have it now and nobody deserves to have it.

And I don't want to downplay the ignorance out there. Even healthcare professionals can say incredibly insensitive things at times and make crazy assumptions. Other times I've been surprised by how open-minded and compassionate people can be about it.






------------------------------
35 years old, female
GT 1b, F1-2

5/28 2015: Started treatment with Viekira, 12-weeks, without ribavarin

Pre treatment: AST 35 ALT  33 VL: 2 million IU/ml
Week 4:      AST 19  ALT  11 VL: <1.18 IU/ml detected
Week 8:      AST 18  ALT  13 VL: <1.18 IU/mil undetected
Week 12:    AST  18  ALT  11 VL <1.18 IU/mil undetected
Post treatment:
EOT 4:        AST  16 ALT 12  VL <1.18 IU/mil undetected
EOT 12:      AST 18  ALT 11  VL <1.18 IU/mil undetected

 


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