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Author Topic: Sharing I have Hep C  (Read 10640 times)

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Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Sharing I have Hep C
« on: October 13, 2014, 07:45:00 am »
I am struggling with the thought of sharing what's going on with me at almost 57 years old. I don't know for sure how or even when I contracted Hep C. I've had many different symptoms on and off for many years and was never an IV drug user but was married to one almost 40 years ago (I was very young and didn't even know it until after we divorced 3 short years after marriage). Now I find myself in this weird position. I have another ex-husband who I was with for 10 years and we have been apart almost 10 now. Do I call him and tell him? We haven't spoken a word since the divorce, heck he could have been the one who shared this beast with me for all I know. Then I have the problem with work and co-workers and even friends and family. Why should I feel ashamed about this? I know I shouldn't but I do. I am raising a challenging teenage grandchild alone, no help from anyone. I am responsible for his care as well as my own. Some days I can barely get out of bed let alone get to a grocery store. Meanwhile I am doing my best to work from home (I was getting vertigo and blurred vision so my PCP put me on work from home last June). I am very lucky that for now and for about another 4-5 months I can continue to work from home but it's just all so darn hard to deal with. Getting the teen to his Psych for his special challenges, not letting him stress the crap out of me(like he does all the time), trying to support us both. I already feel like a burden to those who I have told,  I have made some adjustments to help get us through it at home by ordering groceries online and having someone come clean the house weekly. I arranged finances so I only have a couple of things to deal with monthly, I have even almost kept up with the zillions of medical co-payments (especially LAB) results.

It's just scary that I feel like I will be ostracized by co-workers and even friends. I already have been isolating myself for years, didn't want to be social in any way shape or form; is this part of this beast? I've read so many of the posts and stories on here but haven't found anyone talking about this topic. How do you and who do you share this with? What's the right thing to do? Will my wanting to isolate and my fog lift when I beat this beast?  I feel like I have lost me and I want to get me back without creating havoc by telling too many people. Is that because of shame? Am I being a chicken Sh*t? It's all so crazy and I don't mean to whine or complain, I am so lucky to have finally been diagnosed and just a few months later be able to start a treatment that has over a 90% cure rate. Honestly just having this forum and being able to actually let all this out helps me. I just want to do the right thing and with this fog I don't know for sure what that is......
~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 Pelham123

  • Member
  • Posts: 70
  • Genotype 2 - Tx Sovaldi/Riba
Re: Sharing I have Hep C
« Reply #1 on: October 13, 2014, 09:28:19 am »
Hi Battle, this is the path I am taking.  Other's will share theirs.  There is no ONE way to handle sharing.  I found out 6 months ago that I have "the beast", but I can pinpoint when I got it over 40 years ago. I told my husband of  24 years; so he could get tested - He tested negative for Hep C.  But my 45 year old son has given blood over the years, and he never tested positive.  So, I know he doesn't have the virus.  Hopefully I'll never have to I tell him.  He'll just worry. 

I told my dermatologist because of the skin reactions I've had with ribavirin. also the ophthalmologist, because ribavirin can cause retinopathy.   I don't trust other people's reaction.  Especially during this Ebola hysteria.  So I haven't told anyone else.

There are challenges with this approach.  I feel isolated, and recently, as my immune system is compromised, I've had to decline gatherings with mundane/vague excuses.   I feel like I'm not being truthful, but hey, maybe I'm in training to be a politician?  People don't get to know everything about me.  And this process has taught me, they generally don't even notice. 

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Sharing I have Hep C
« Reply #2 on: October 13, 2014, 09:53:34 am »
You are so brave, I can't imagine how you felt when you told your husband. So grateful he and your son are negative. Thank you for sharing, I'm struggling because I'm normally such an open person. Everything I've been through I've learned from and tried to help others as well with my lessons learned but this one I'm just scared of.
It's amazing how people don't notice things and that's something else I have learned through my challenges. Lower my expectations because I cant expect everyone to react to things the way I would and although I would jump through hoops to help someone close to me I saw struggling I can't expect the same back, it won't happen.
~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 Pelham123

  • Member
  • Posts: 70
  • Genotype 2 - Tx Sovaldi/Riba
Re: Sharing I have Hep C
« Reply #3 on: October 13, 2014, 10:06:03 am »
This is just my approach.  Lucinda moderates this forum, and she wrote a book about her experience.   You will find your own way. 

Offline lporterrn

  • Member
  • Posts: 1,984
  • LucindaPorterRN
    • LucindaPorterRN
Re: Sharing I have Hep C
« Reply #4 on: October 13, 2014, 10:45:16 am »
Dear BattletheBeast,
My heart aches for you. As Pelham wrote, there is no one way to handle this. It is complicated. For me, I find that the two most painful aspects of living with hep C (in this order) are the fear of giving HCV to another, and the stigma.
Here are my thoughts:
1) I chose to be very open about it, but I only shared when it was appropriate. This path served me well because it took me to places I would never have gotten otherwise. When Stanford hired me, they knew I had it. I use it as a chance to educate others. But that is just me. I will tell you that it wasn't always pretty, but in 25 years, I've only had 3 people who criticized me or were afraid of me.
2) If you chose to tell others (and you absolutely don't have to), be prepared to give them information or to answer their questions. They will probably be supportive of you, BUT they need to be reassured first that they are in no danger from you, which they are not.
3) I'd assume that you acquired HCV as far back as your first marriage - probably not sexually, but through some shared behavior that you can't think of. Your other ex has nearly no chance of acquiring HCV from you (unless you had sex with knives or chainsaws, practiced vampire play, or tattooed each other). You are under no obligation to share this info, esp if you think sharing would create consequences. However, your kids need to be tested, and in that process, it may come out.
4) I just saw on another post that you are on treatment - I pray that you are hep-free soon and forever! Congratulations on taking this journey.

« Last Edit: October 13, 2014, 10:52:23 am by lporterrn »
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: Sharing I have Hep C
« Reply #5 on: October 13, 2014, 11:39:26 am »
Battle,
People in close proximity to you, should know. I don't want anyone I care about in life to get it from me. If they love you, it will show. All my kids treat me with care and love as if the hepc did not exist. They all know I'm in treatment. The ones that act as if it is a stigma is my revelation of who cares for me in the first place.
My attitude is I don't have time for anyone that is going to not bother listening or obtaining the info so they feel at ease with me. My kids are all at ease with their kids jumping all over me and attacking me. They know I take care of myself. My wife of over 40 years does not have hepc and I have had it 44 years. I won't tell anyone at my job, and I work in a office atmosphere and contact many people every day. It is none of there business and I keep it that way. Some of the closer coworkers I know have actually asked me how I am doing, suspecting I am on some medication because this Ribavirin changes your demeanor. I gently say " nothing is going on"   Caution draws a fine line, and a little prayer for wisdom does not hurt. When it is over, I will not hesitate to tell anyone, as it is upliting and victorious. I'm not afraid to even mention how I got it, from drug abuse in my past.
Getting over that is a victory too.!!

Offline Mike

  • Global Moderator
  • Member
  • Posts: 993
Re: Sharing I have Hep C
« Reply #6 on: October 13, 2014, 07:04:39 pm »
I, too, struggled with this. I told my immediate family (mom, dad, sister). I also contacted my ex and let her know. I told my children as well (they were adults by the time I found out I was infected).

I did not tell friends or coworkers - there was no reason for them to know.

Simply stated, a Hep-C diagnose  carries a lot of social stigma (just like AIDS), and ostracization and discrimination are very real possibilities when disclosures are made. This is because of an ignorant populace that is not educated on how Hep-C is transmitted.

I was not willing to subject myself to this; so disclosure was on a need to know basis.

In fact, I did not disclose the dx on medical forms that asked, as, given the fact that universal precautions are to be used by all medical professions at all times, and, I could not be denied medical treatment due to a Hep-C infection, I did not feel it necessary to disclose. The only exception was when a medical professional broke protocol when treating me (I would point it out and make sure they applied universal precautions before proceeding). I disclosed once when a phlebotomist who  stuck himself after drawing my blood.

Now some would say this was the wrong approach - especially not disclosing to medical professionals. But, they're not me and that's how I handled it (on a need to know basis).

The point is: Everyone is different. And what works for some, doesn't work for others.

Disclose to those you want. But understand there is a lot of ignorance about Hep-C in the general population, and you may pay a price for it.

Now the good news: Hep-C can be cured, which really wasn't the reality when I was diagnosed (I had about a 25% chance of a cure when I first treated in 2001; and the treatment failed).

But now, with the advent of Sovaldi and  the other treatments on the horizon, 90%+ will be cured - with a 100% cure rate a real possibility in the near future!

I slayed this dragon in July, and I'm cured.

In the words of an amazing American: From the mountain top... Free at last! Free at last! Praise God we'll all be free at last!

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

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Sharing I have Hep C
« Reply #7 on: October 14, 2014, 07:39:58 am »
Hi All,

Thanks to everyone for your candid responses. Two of my adult children are negative however my son who is an IV drug user is Postive, it's a safe bet he got it on his own as he shared needles with his father. My 1st husband is now deceased,  he actually passed from complications due to Hep C (I think) about 4 months before I was diagnosed. Again, I haven't seen this person in over 35 years. My teenage grandson who lives with me is also negative, he is the child of my son. He has been immunized for A, B and tested for all as well as HIV multiple times. He was born addicted and his mother is also Hep C positive. I do not know their genotypes.

I have only shared this with my closest girlfriends and my sister. I am extremely careful with everything I touch now that I know what's inside of me and been tormenting me for years. I suppose I am should be grateful to find out now versus the many years ago I probably contracted this since the treatments are now so much better with greater success and less side effects.

I have no children with Ex-Husband #2 and we have been apart more than 10 years. For all I know it could have come from him, he has severe skin condition everywhere(I mean everywhere at times) which means his skin had spots weeping blood on many occasions. Crazy to look back and try to figure out where this all came from but I guess it doesn't really matter. I know what I have now, I am getting treatment and going to be cured.

Today's update Day 4 of treatment 10/14/14; Sleep is still a major challenge for me. I am exhausted but unable to sleep and when I do finally fall asleep it's only for a couple of hours.  The exhaustion is impacting my vision as well as my aches. Last night the itching started so I will call my ID nurse today for some input on how to best manage it.

Question: Has anyone had an acid reflux issues after starting the S/O combo? I used to get it once in a while but it has gotten pretty awful since starting the treatment.

Countdown is on, I will beat this beast and have a life!
« Last Edit: October 14, 2014, 07:42:10 am by BattleTheBeast »
~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 NoFear

  • Newbie
  • Posts: 2
Re: Sharing I have Hep C
« Reply #8 on: October 24, 2014, 10:41:22 pm »
I've had Hep C for 36 years and have never kept it a secret, nor have I ever noticed any stigma. I've found that talking about it has been my greatest source of information. Of course, as with any illness, it's always best to try to reduce your stress level at any opportunity. I once read that 6% of the population has hep C but are not aware of having it. I found that that statistic, whether accurate or not, makes it much easier to talk about, because the other person might automatically think that it's not rare and that they could possibly have it as well. And acceptance becomes easier and more likely.

Offline lporterrn

  • Member
  • Posts: 1,984
  • LucindaPorterRN
    • LucindaPorterRN
Re: Sharing I have Hep C
« Reply #9 on: October 25, 2014, 01:59:21 am »
NoFear - I wish there was a "like" button - I love what you wrote. About 1.6% of the U.S. has hep C, and of them, 50 - 75% are not yet diagnosed. Blows me away to think of that - millions of people and no idea.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline johnsshutts

  • Member
  • Posts: 97
Re: Sharing I have Hep C
« Reply #10 on: October 25, 2014, 04:31:10 am »
I had a very hard time at work for TSA as a supervisor when I was on treatment for 14 months with peg and co-peg, over 10 years ago. I was getting wrote up for anything and everything., that wasn't even my fault, or stupid stuff.They gave everyone a Xmas bonus, but me. I always had vacation and sick time saved up. I tried to work most of the time. I know this was because they were scared that I had hep c, and probably thought they were going to get it from me. A lot of people don't know much about hep c. I had to resign and take a lot lower paying job. So, I kept my hep c in the closet, until recently, because I didn't want problems at work. Now I am ok with it. I am going to retire in January, and when I am cured I am going back into management. I will be 56 years old, and starting I fresh new life. I am so ready. I will be cured soon with Harvoni, if my appeal is approved. If not approved, S/O or S/R. I am so ready!

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Sharing I have Hep C
« Reply #11 on: October 26, 2014, 03:04:23 am »
You will be cured John!!
~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 Roger

  • Member
  • Posts: 171
Re: Sharing I have Hep C
« Reply #12 on: November 13, 2014, 04:13:23 pm »
I tend to tell anybody that I want to tell.  Frankly - the more the merrier, as people have to begin to understand that there are  m-a-n-y  ways even "they" can get Hep C.

I haven't run across much negativity, but when I have, I just bring them back to center and explain the facts to them. They too could 'have it' or 'get it' without ever shooting drugs (the first thing that crosses their minds).

It's funny, as I have never been involved with hard drugs or IV drugs.  I think most people would automatically assume that - without a Hep C conversation... but you can see it 'flash' in their eyes, many times, that they question it (or themselves) when they find out that I've got the beast.

We all assume that all hospitals and doctors offices practice sterile management - but it just isn't so, 100% of the time.  I can attest to that.
Genotype 1a
2006 - Dx
2009 Biopsy      - Stage 2
2013 FibroScan - Stage 2
2014 FibroSure - Stage 3

Started Harvoni 11.21.2014 Viral Load - 313,593
12.26.2014 - UND (at 5 weeks)
At 8 Weeks - UND
EOT 02/12/15 - UND
12 Week EOT Blood Work - UND

Offline huxley

  • Member
  • Posts: 4
  • Huxley
Re: Sharing I have Hep C
« Reply #13 on: November 13, 2014, 08:16:21 pm »
First time poster.

It is a judgment call. Depends on your coworker relationships among other issues. I had to share. My platelets hover around 30,000 and I have neuropathy (thanks Interferon) so I don't know when I am bleeding until I see blood. Hepatitis is more liable to infect than those with HIV. I am a medical librarian and work in a small office and once I shared that it was basically a hands-off approach to me. The office workers totally ignore my condition and me and that is just human nature. Nobody wants a sick co-worker even if they contribute. That is the cruel nature of humans at times and perfectly understandable --.

At almost 59, I've had this virus since 14--Hep b & c. Extrahepatic issues with cryoglobulinemia and neuropathy, Sjogren's and RA. So, one can look around and if you need to let your supervisor know of treatment side-effects, that is one thing. Otherwise, as all things in life, use judgment on who you trust and if you are a bleeder--probably a good idea even if the office treats you like an Ebola patient!
________________________
Patriotism is  the last refuge
of a scoundrel. Samuel Johnson

Offline penny

  • Member
  • Posts: 52
Re: Sharing I have Hep C
« Reply #14 on: November 13, 2014, 09:06:41 pm »
Hi huxley
are you planning to treat?  I have autoimmune issues too thanks to IFN.

 


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