Recent HVC Diagnosis

[virt111]

Hello, all:

I've recently been diagnosed with HVC through a routine blood test and I'm fairly certain that I became infected 30 years ago.  I've seen a specialist who has me going in for a biopsy soon.

My symptoms were mild enough that I never felt any cause for concern.  But within the past couple of years, I've had some moderate weight loss and a lot of fatigue.  I think I've lost about 7-10 lbs in one year.  I had modified my diet somewhat to eliminate refined carbs and to be more careful in general as I advance in age (45y.o.), but it seems like I shouldn't be losing that kind of weight.

I guess I'm writing just in hopes of others like me that can offer some support as I'm very concerned since I have a wife and family who depend on me.  

It's such an insidious disease that has a tremendous survival strategy.  Silently destroying your liver functions...

Anyone out there had HVC for many years without suffering 'major' liver damage?  Is that even possible?  My liver enzymes weren't too high and I'm not even sure if that has any real correlation to the progression of the disease.  Based on the results of my biopsy, I'm fully prepared to do whatever it takes to halt the progression of damage to my liver.

Thanks in advance,

Vern

[virt111]

Thanks for you comment and I'm happy that your family all tested negative.  That's something that goes way beyond what we're all feeling about the health of ourselves.

You didn't mention if you got treatment or what prognosis you had.  Did you in fact receive treatment?  If so, how are you doing now?

Thanks again,

Vern

[Gladitsnotworse]

I too have probably had the virus 30 years. I found out I had it 3 years ago when my oldest daughter and I gave blood. I had no insurance and was to start full time classes in a few months. Then my mother mentioned my children might need to be tested. I realized things could get worse. I have 3 daughters and we shared razors, etc., (a practice we do not do now). The thought they might be infected changed everything. I was a robot for months drowning in guilt. It was the toughest time I have ever had. I knew I couldnt get them tested until I got insurance coverage because if they tested positive I had to be able to do everything medically needed to help them. I knew my oldest daughter was ok due to the fact she gave blood regularly. Within several months, I started school full time and got a job with great insurance. I got them tested by explaining it was routine physical. Their results came back negative. I never intended to tell them but they got wise and snooped. They told me they knew something was wrong. The poor things thought I was dying of cancer. My youngest was 11. Sometimes kids are just too smart. Everyone has to decide on their own who to tell and who not to tell and what to tell. Thankfully I now know this is not a death sentence. This forum was a God send. I read old posts and new posts. The more I read the calmer I felt. I feel I am better informed than many doctors now. Remember you are not alone. God bless.  

[na34]

Hi,
I have just got the news about being HCV positive.
I do not know which type I am yet and am overwhelmed with all my questions unanswered.
Of course, I want to do the treatment, I am worried about its side effects (will I be able to work?) and not sure of what to say at work either.
I am a professional and no one would ever guess of my dark days during my teenage years and yes I am not proud of those either.

I am scared and need some feedback on how you are supporting the treatment.
How do you know if you are a candidate? Are you always a candidate?
Thanks.

[Isobella]

Thanks for sharing.
My heart was in my throat thinking about what you must have gone thru-especially with your future grandchild!  Heck, my heart is in my throat thinking about me getting my daughter sick.
My doctor tells me to think how much better I will feel when I find out she is clear tho, so I agreed testing her is the way to go.  (perhaps I should be tested for that heart/throat thing too!! hehe)

Izzy

[justme53]

I decided to tell my kids early on because the Blood Bank screening tests showed I tested positive for both HCV  and HBV and it was recommended that I do. I think that was more because of the HBV than HCV.

It was hard for me even though they were both adults. In my daughter's case especially because she was 8 months pregnant and it cast a pall over her last few weeks until it showed she tested negative. I remember feeling so toxic at the time, capable to infecting generations of my family ...at least until I got informed.

If I had to do it over, I would have waited until I had done more research and felt more comfortable and knowleadgeable about answering questions and allaying fears.

Pam

[Isobella]

To answer your question about the trial I am hoping for, the telepivir is given in addition to the riba and interferon. If you go to hcvadvocate.org, there is a listing of all the trials going on for hcv.  The Vertex one is under protease inhibitors.  Lots of information-but I think we all agree with the whole "knowledge is power" thing! :)  I know that trials involve a bit of luck as far as getting into the right arm, but I am hopeful.  At the very least, I will get the SOC at no cost-so that's the upside.

Back to telling the kids, believe me I don't want to, but my doctor says there is a chance-however slight that I may have passed it to her either during pregnancy or thru nursing and that  that she should be tested. Unless she is positive, she is only being told that she needs to be checked to see if she has been exposed to my virus.  She has reacted fine to everything so far.  Any input from y'all would be greatly appreciated. Prayers for her health even more so!!
  
As for telling others-besides my husband, dad and 1 sister-I use the "meds excuse" also-they are a great excuse for everything from being tired,ditzy,not drinking-you name it!!

Izzy

[virt111]

Thanks, Trish.

That is exactly why this forum is such a wonderful resource....you learn from people's experiences and knowledge.  You guys are all the best!

That is really something that I will do is get the results from my tests.  It just makes too much sense, doesn't it?  But, when you're in an anxious state of mind in the office, it's not always something you think about.  I will for sure be doing that from now on, though.

I definitely would appreciate you posting some information about Telaprevir in this thread.  I'm sure a lot of others would find that information useful as well.

Thanks again, Trish!

Vern

[virt111]

Thanks for commenting.

Like I've mentioned, I'm borderling right now on that Type-2 diabetes thing but my doctor doesn't want to start any med's since they hit the liver hard.

In terms of where you contracted the virus, I'd suggest you seek out the most reputable Web sites to do some research.  We all know just because it's on the Web doesn't mean it's truth....and you can really freak yourself out by surfing too deep off the trodden path.

Good luck to you!

Vern

[virt111]

Thanks again for your reply.

The kids are a tough one.  I'm really leaning towards not saying anything unless something looks terribly bad on the biopsy.  Even then, I will talk with someone to see what is the best course of action in terms of not freaking them out.

Funny you mention the "old drinking friends" thing.  I felt I had to tell one person outside of my family for the same reason.  I just couldn't lie and I've known him for over 35 years.  He knew about my past and I know that he will not say anything.

Vern

[virt111]

Thanks for the suggestions, Jim.

You bring up some very good points.  Aside from the possible depression, I've got borderline type-2 diabetes, major job related stress, some other personal stresses, not to mention having been diagnosed with HCV!  The upside is, I'm not dropping enough weight to freak me out too badly.  I've read that if you lose 10% of your body weight in 6 months, it's time to get your buns to the doc.  I'm in the 2-3% range over the course of a year and a half.  I did bring that up with my doctor and he noted it.

I am seeing a very good liver specialist.  I did some research before making any phone calls.  Thanks for all of your advice.

Vern

[virt111]

First, good luck with your biopsy results.  Let's all stay positive!!!

Can you tell me a little more about the treatment you  hope to be getting?  Is that something that would not normally be beneficial AFTER you've tried Interferon?

Thanks!

Vern

[virt111]

Thanks so much for all of your suggestions.

I am soaking up all good information as well as the thoughtful and intelligent feedback I've gotten from this post in terms of the illness.

My kids are under the age of 13 and I haven't made any decisions to tell them yet.  I'm leaning towards not saying anything until after the biopsy results are in.  And even then, I will lean towards a more vague description like Izzy has mentioned in the thread.

I think the idea of seeking out some professional guidance is probably a wise move as well.  Thanks so much for your reply.

Vern

[Trish77]

Vern,

Two things I want to comment on from the above posts....I want to concur with Izzy to get copies of your tests when you go to the doc.  I kept reading that here and I felt a bit funny the first time I asked my doctor for a copy of my test results.  Since that time, I have been very glad that I did and it is among one of the best of very good pieces of advice I have learned here.  I had those copies when I felt the need to change doctors and when I got into the drug trial and it has come up a few times where someone said "we need those results" and I was able to say "I have them here!"  So get copies of everything! :)

Also.. Izzy (again!) mentioned that she's getting into the Phase III Vertex VX-950 Telaprevir trial. IF you find that you are Genotype 1, I strongly suggest that you bring this up to your doctor or seek out a hepatologist in your area that is participating in this trial.  If you want information on it, I'll post it.  It's recruiting soon and it's for treatment "naive" Genotype 1's.  Phase III is the best trial to get into usually and Telaprevir is one of the best new drugs in trial at the moment.

What great support is coming out of the woodwork here!!! ... as usual. :)  Welcome to the forum, Vern.  I'm glad you found your way here .. you will find much good information and support ongoing.

Take care.

Trish

[sb38]

Hi, I just found out i have Hepatitis C, Type 2b, yesterday.
I'm 38, have had diabetes type2 for the last 5 years (eh, why not? throw something else at me why don't ya?)

I gotta tell ya, I feel a little better reading about all of you.
There is such a stigma associated with this, and I haven't even done the things that normally lead to this.

I have been trying to figure out how I got this.
Haven't ever used IV drugs, but have had plenty of needles stuck in my arm for the last 5 yrs. for checkups on my diabetes.

I keep going over things I did in college 15 yrs ago, but again, never any IV drug use.

Is there some way to find out how long you've had it, or how you got it?  I have a wife and 3 boys to take care of, am in pretty good health, and don't have any of the known side affects.  My wife is handling it pretty well, and we're trying to figure out how and what to tell the kids, when the time comes.  I'm not worried about dying, but I'd like to get rid of it if at all possible.

Good luck to all of you, and thanks for being a source of info!

[burned74]

I agree with Kalio about not telling the kids. There is no reason to tell them or anyone else (except your wife of course) for that matter.

You have plenty of time so no need  at all to rush that decision. i did tell my kids,11 and 14 at the time, but I later realized that I probably should not have. There is no reason for them to know.

One way that old friends knew was that I stopped drinking socially and I had to have an explanation. Now I  enjoy a  NA  St Pauli Girl and say that I am/was taking medication and I wasn't supposed to drink with it.

Unless your biopsy shows that you are late into stage 4 cirrhosis, which is statistically doubtful, you will have many years to think about it.

i really like the comment someone made about having two risk factors, although by admitting long ago drug use it is clear that it was not accidentally and easily spread.

[jmjm530]

Sorry about the diagnosis, but the silver lining is that you most probably found out about HCV in time, and hopefully before too much damage has been done. Biopsy is an important step, especially if you're a genotype 1. It will tell you how much damage you have and be one very important indicator of whether you should treat now, or alternatively wait for better treatments now in trial.

As to the weight loss, while anything is possible, it doesn't on face value sound like HCV, so the fact that you have HCV and the weight loss may be unrelated. Same with the fatigue, although that is more associated with HCV, but also with any number of other things and is one of the most prevelant complaints doctors here in the overall non Hep C population. Depression, for example, could present both with weight loss and fatigue, just to give one example.

So regardless of how you proceed with the Hep C, you might want to continue looking into possible causes of both the weight loss and fatigue. You don't want to miss the real cause if indeed it isn't the Hep C. Only other thing is to  try and find yourself a good liver specialist (hepatologist). In general, they are more knowlegeable than gastro's about this ever chaning, fast-moving field.

-- Jim

[Kalio1]

Sorry about the diagnosis, it's a real shocker. I think all here can totally relate. Learning as much  as I could about HCV helped me cope, knowledge is power. HCV is a challenge to be sure but you can fight it and you can beat it. Stay positive and determined and you have it licked.
Give yourself time to get used to the idea, learn all you can about your condition and this disease and then decide how you will manage it, tell people, etc.
Regarding telling the kids... my advice is to give it some time. You have plenty of time and plus a LOT of waiting for answers ahead of you. It is not uncommon to hear people say they have to wait months to see their docs, get biopsies, etc. so be prepared to hurry up and wait. It is not harming your health and it gives you time to figure this all out. I tried to view the waiting as a blessing because it was driving me Nuts!
I'd start now and save copies of ALL your test results. As you learn about HCV, you will learn what the results mean in terms of your health. I'd get the docs office to get used to the idea you want copies of everything.
Seems you are feeling good and functioning as usual, no need to say anything to the kids at this point until you are sure how you want to handle that aspect.
It freaks kids of any age out to learn one of their parents has ANY illness, as you know, so let it sink in and eventually you will figure out how and if you want to break the news.
Keep in mind there is a lot of stigma attached to this illness so I'd think carefully before you tell others, coworkers come to mind.
Many also face the dilemma of having to explain how they got HCV. If it was from illicit drug use, then you have an additional dilemma vis a vis telling your kids.
If I was in your shoes, I'd consult a professional about it because you are sharing not only that you have a disease but also that you used IV drugs, both heavy issues to kids if you haven't talked to them about your past already.
You are probably light years away from those behaviors and have a very different life style now, so having those past errors come around and bite you in the a** so to speak and force you into a position of telling your kids is worthy of professional consult I think because it involves very big issues. I don't know how old your kids are or how much you should or shouldn't tell them but a professional might.
I'd keep quiet until I had it all sorted out as to how and what to tell them.
Hang in there. Glad you found this forum, it can be a big help just to talk to others who have been through it.

[Isobella]

Actually I should hear today or tomorrow if I have gotten into Phase III of the Vertex study-with telepravir (sp). It is for treatment naive patients-meaning never before treated. The results look really promising. There are some on this forum who are finishing up with another part of the study.  Adiamo is one that comes to mind-he just finished.  Try looking him up-he is amazing!!

Of course everything will depend on my biopsy results, but I want to be aggressive.  Easy for me to say as I haven't even yet begun to fight!!

This forum has been a sanity saver!  I don't know how I could have coped so far without all these awesome people sharing their experiances-it makes me less scared, more hopeful.  There are so many diseases worse than this and we are lucky to have been diagnosed before we began to show symptoms.

Please keep us updated with your biopsy results-Izzy

[virt111]

Hi Izzy:

Thank you for your reply.

That sounds like a very reasonable and non-threatening way to tell your daughter about your illness.  I really hope that your she is clear of the virus for hers and your sake.  I can't imagine dealing with the shock of having HCV AND having to worry about the health of one of my children.

This forum is really a phenominal resource.  I really can't say enough about the comments I've received and I will be around to hopefully help others with the knowledge that I acquire as I get further into the process of my treatment.

Thanks again, Izzy (lol about Zoloft...)

Vern

[virt111]

Brent:

Thanks for your reply.  

Did you get treatment?  If so, was it a success?  Did your liver get impacted much by the virus?

Sorry for the twenty questions.

Thanks for the well-wishes on my biopsy.

Vern

[Isobella]

Your story sounds alot like mine. I was diagnosed in January, so I can relate to the dark days-they do get better. (gotta love zoloft!)
My ALT and AST are mildly elevated, my ultrasound came back normal and I go for my biopsy on Friday.  
I have a teenage daughter.  I told her that I have a virus in my blood that settles in my liver and that the tests I have been having are to help us decide which type of medicine to use to kill the virus.  It is very hard because she will be tested in April.  Gotta break that news to her--I don't know what I will do if she is positive.  (there's a dark thought for ya!) Yikes!
If I have learned nothing else from this it is to take one day at a time, educate myself and live healthy. Actually feels kinda good.
You found a great place here in this forum-everyone is very helpful.  I will look forward to hearing how your biopsy goes and what your treatment plan is.  
Good Luck-Izzy

[IAmTheWalrus]

I think you are in a fairly common situation. It is similar to mine for sure. I think I got the virus about 40 years ago and had no symptoms until about ten years ago. HCV was not diagnosed until 1999, 35 years ater I probably contracted it. Good luck with the biopsy, that will give you a better indication as to liver condition and disease progression.

Don't feel bad about being a newbie. We all are or were.

Didn't Stephen Stills also have a transplant?

Brent

[Trish77]

I don't know when and where I got it.  I have two known risk factors, that is what I say.  I had a blood transfusion in 1984 as well, when my daughter was born.  Being in Canada, the transfusion was in that time period where blood wasn't screened and I'm going through the paces of getting my records, doing the traceback procedure and all that.  However...just like anyone, it could have come from anywhere really.  I just happen to have known risk factors to consider as likely culprits.

[virt111]

Thanks again, Trish.

I spent the first day (and all night because I didn't sleep), just bashing myself for something that happened for a few months when I was a kid.  Talk about dark days.  I just couldn't believe, being how I am today, that I could ever have participated in that activity, especially with the people I was doing it with.  Every day since the diagnosis has gotten better with respect to beating myself up over the past (thanks in part to some med's, lol).

I've been lying to the kids about where my wife and I have been going since I've already had a few appointments.  But waiting for the biopsy before telling them is probably the way to go.  At least at that point, I'll be a lot more educated in terms of the damage to the liver as well as the available treatment options.  The main goal is to make them feel like I'm going to be okay and be the same person I have been.  I've got a positive attitude now, unlike I did the first day.

I wish you well with your treatment and I hope that you can keep me informed of your progress.

Good night, and thanks again!

Vern