Nevermind....

[amirtracy]

My question was going to be: Is there any way to get through treatment without having to tell people you're on it?
Texasgal sorta answered my question...:) I guess it's different for everyone. I'm having bx on Jan.6 and have pretty much resigned myself to treat no matter what. I was hoping to get through this without explaining much but i guess i'll just have to wait and see. i must admit waiting to begin is hell...anyhow Happy New Year and best of health to all!

[amirtracy]

You guys are the best.

[amommy]

Both of you most certainly have a way with words.  I have found much comfort in all that you have to say.  Thank you so much! Everyone here has been so incredibly helpful and amazing, but the kind caring words from each of you particuarly resonate with me.
(((hugs)))

[NYgirl]

you just gave some of the best advice I've ever seen on these boards.

It is so tragic that we have such a stigma attached.  It is time that the general public found out that little nail salon fact - how many rich women get their nails done WEEKLY or whatever?

Can we let them know that this is a Nail Salon disease for the upwardly mobile and not a drug addict disease in fact?  ;-)

Maybe people would see things differently!

[MrsOckert]

Don,

Thank you for your kind words.  It's nice to think that thru all this brain fog I might actually have moments of brilliance that peak thru.  LOL  It sounds like a wonderful program.

One of the things I've learned through all this is just how important the overall health of your liver is without even factoring in diseases, viruses or NAFLD.  It don't ever remember when I was growing up hearing about all the different functions your liver does for the body.  Valorie

[strator]

Excellent advice. If you don't mind, I'll be sharing your words with my daughter and her husband. She works with young troubled kids in inner city schools and her husband is a policeman(he also grew up with an addicted parent). He's applied to be the next Drug Awareness Officer in the city schools. He hopes to be able to present hep c knowledge as part of the forum. The American Liver Foundation is also working on a program for the schools-very much as your describe, starting with general liver wellness for the younger kids.
Thank you,
don

[MrsOckert]

Just my thoughts .....

When I was first dx I didn't want ANYONE to know.  But after 3 months when I read everything I could and became much more knowledgeable now I am quite open.

Concerning your kids.  You have to tell your kids your sick.  Thinking you are trying to protect them will not work.  They will think they weren't important enough to know their mom is sick.

Second, you DO NOT have to tell them how you got Hep C.  What a wonderful opportunity to teach them a life lesson.  You can sit down with them and tell them ALL the ways that Hep C can be gotten. It can be gotten thru drugs, but also thru any medical procedure, if you EVER got your nails done at a nail salon.  Coming into contact with infected blood.  You can explain that it was first dx among people who had drug problems and that is why unfortunately the disease has this stigma.  But there numerous other ways of getting it and NO ONE can say with any certainty how they got it.  Well, except for blood transfusions, etc.

The life lesson - the choices they make in their life now and in the next 10 years can affect them 30 years from now with their health.

[amirtracy]

I woke up this morning and read your comments and started crying. I can't thank you enough.
tracy

[amirtracy]

Thanks for your kind words. I'm lucky, my husband and I have our own catering business so missing work wasn't really the issue with me. I haven't told my kids yet, boys 14 & 18 (only the 14 at home), and i was hoping i wouldn't have to disclose it had anything to do with my liver because of recent events in my family. My father died 2 years ago from alcoholic-induced cirrhosis and my brother-in-law died 1 year ago. He was a drug-addict, positive for hepc but apparently had a genetic liver disorder that killed him @ 31. The hepc, we were told, wasn't what killed him. His father also died @ 31 from the same disorder. His wife, my youngest sister, is also an addict and positive. Even after her husbands death. Noone has seen or heard from her since shortly after he died. So. It seems I contracted this from youthful indiscretions with cocaine, never did drugs with them, and it's purely coincedental that someone else in our family has this. I worked so hard to turn my life around and for the last 15 years have been drug and alcohol free. Just turned 40. So now I find out I'm positive. Now it bites me in the ass. I always knew It was too good to be true. To walk away from that and not be bitten. Anyway, I don't mean to vent, but the point I was trying to make was that I didn't want my kids to think I was going to die because of this. I also didn't really feel like 'fessing up to my past when they know nothing of it. Especially now, at their ages. I don't want them to say I did drugs so they can too. ??? I guess I'll just have to deal. Thanks for listening. Sorry I went on and on...

[MrsOckert]

To: Amommy I posted a comment to you under the "PCR less than 1.9!" thread about a SX that is little discussed.  I know it's easy to miss if you aren't looking for it.

Amirtracy - You may be interested in reading the comment also.  I really didn't want to waste a new question spot.

[texasgal]

It is so hard to predict what to expect with these drugs, but in my opinion, you can try and try and try, but you cannot hide what they do to you.  I was very fortunate to have employers that I could talk to and they understood and put up with every side effect I had.  There were times when I would get to work at 7:00 a.m. and I would feel so bad, I would leave by 7:30, but I tried.  However, everyone is different.  Everyone experiences different reactions and everyone handles them in different ways.  It seemed like every day, something new would pop up for me until I just couldn't handle it any more.  If you have to start this long journey, just remember that this board is probably the most helpful place to go than even your own doctor's office.  The people here have all become more than just people to write to.  They become friends and confidants.  When you can't talk to anyone else, come here.  We will all help.

Good luck to you.

Linda

[amommy]

Thanks! I'm going to go check it out right now :)

[amirtracy]

I'd just like to thank all of you. You've made the last few months bearable...
Good luck Spacecoast! It's someohow nice to know you're out there and not far away!
Mrs. O- You just relieved my mind big-time! 4 hours to approval! I'm keeping my fingers crossed that it's that easy!
Texasgal- thanks for the advice. Best of luck to everyone. What a trip it's already been and i haven't started yet!

[NYgirl]

Hi!

As much as it is different for each person it's probably a good idea to tell your boss SOMETHING if possible (for example that you have a blood disorder and need to start chemo if you are just worried about saying HepC).

You will have good days and bad days and tired days and hyper days and I did not want to tell anyone either but I had to.

Maybe you can see how you are doing and not say anything unless you have to?  If you really do not want to I would do it that way.  Then I'd have time to prepare as well what it is you want to say.

Believe me there are a lot of us in here who at first didn't want to say we had this.  I was one.  Now I don't care anymore and try to educate those ignorant people who want to look at me oddly.  Idiots!

I wish you all of the best!

Debby

[MrsOckert]

WHEW!!!  (hand wiping my forehead)  I started to freak out on your behalf.  I had pre-approval from the ins co to begin TX but they didn't tell me my prescription benefits would max out after 1 month on TX.  I freaked and didn't know what I was going to do.  I couldn't afford to pay $2000 per month for TX.  I was able to get approved from Commitment to Care.  They've been supplying my meds for the last couple months.  After January I have to go back on ins to max my benefits again and then the CTC program will pick up the meds.

I appled to CTC and 4 hours later had approval.  I seriously doubt you'll run into any hidden loopholes.  You'll be fine.  Thank goodness!!

[cougareyes]

You have to be prepared to roll with the punches, you can never tell how you will be affected by the drugs. I always considered myself a very strong(physically and mentally) person. So I figured it might? hit me a little in the beginning and then I would just shake it off and go on with my life. Ha Ha, I was bed ridden for the 1st 4 weeks, then I have only returned to work 2 days a week; with a lighter work load. I've tried to boost up my hours and my productivity, only to make myself sicker.
So far I've been very fortunate, I did prepare financially just in case I couldn't work. I also prepared my employer just in case I had to take medical leave, shorten my work hours, ect. So far I've kept my job position and insurance. I'm now on 26/48. Next week I'm going to resubmit FMLA paperwork for a limited schedule, and that should protect me through the end of my treatment.
Tx brings alot of drama in all areas of your life, it's a big decision that you must take your time to make; and be prepared to go the distance once you start.    Peace

[NYgirl]

Wow I can certainly see WHY you don't want to tell them.  As a mom I have to admit that I WAS nervous about telling mine (15 & 17) and I don't have that history!

I most likely got this from "youthful indescretions with cocain" myself.  We have no positive reason why and I realized it doesn't matter you know? The only thing that matters is treating and killing these bugs to pieces!  :)

Your situation is much different than your families.  Your kids are old enough to understand.  The reason I'm saying that is that they are probably going to figure out something is wrong - you know how kids have that ability to do that no matter how you try to hide it.

Have you considered telling them something else that is true but not really forthcoming?  What a mess.  Why does this disease seem to cause so much more collateral damage to the one's we love than to even ourselves almost.

I am glad you have a loving husband to help you through this. That must be the most wonderful thing. I have a great mom who is helping me.  It's not a husband (mine was a total bum) but I have to thank God for my mom.

You have a lot of blessings in this stressful time and I know that once it's all figured out and you can put all your energies into the treatment you are going to do just fine. Just dn't let it stress you out - I believe stress can do horrible things to your body. I never really believed that until this stuff but I sure do now.

Debby

[amirtracy]

thanks. you've helped me...
maybe i should just trust that they love me.
and you're right. i have many many things to be thankful for. my husband IS wonderful. best of luck to you. and thanks again.
tracy

[mistybean]

You don't need to tell anyone.  I went on treatment and did tell my boss I was going on a strong medical treatment.  I did not tell him what.  Infact, if I had to do this over again.. I would of told no-one at my work unless.. I was going on leave.  I did not go on leave ( huge mistake for me) and ended up working on tx for 6 months.  I took my last shot last week and my last riba tonight.  For me the treatment made me nuts!  But somehow I managed to really not tell many .. hold a full time sales job and still function...

[cougareyes]

I worded my FMLA paperwork and memos to my director about leave and limited work hours as "chemotherapy for liver disease". Not a lie and did not reveal I have HCV, when it comes to medical information; the law does protect a certain level of privacy. Make sure your doctor knows you want your condition listed as liver disease, that's all mine has had to say.     Peace

[strator]

I've been through some of the feelings you're going through. I was a single Dad living a sober life after many years of addiction, content to always be there to raise my son. Crazily went back to drinking and drugging for 2 years. Got some help and sober and my son was thrilled he had his Dad back.
But I found out I had hep c in the process of getting sober. Most likely of a lot of possibilities, from one use of a needle in '75. Just when my life was good again, bitten in the A$$.
My son's mom had moved out before he was a year old-now their weekend visits with his mom had just tapered to nothing as she sunk further into addiction. He'd been very close to my mom and at the age of 6 was at the dining room table wih her when she had a stroke- never to recover.
I couldn't face hitting him with this.I also didn't want him to be afraid of losing someone else, again. Especially reading the (possible) side effects. More fatique, mood swings, depression- same as I was on booze. I wondered if I could skate through treatment without him knowing. One day he was 13, found a book on liver diease in my room and questioned me.
So I told him. Not in one full overwhelming blast. I started with, 'well, ya know how I'm always tired, I have some blood problems affecting how hard my liver has to work. I'll be fine, but I may have to go on some medicines that can't make feel sick sometimes. Maybe a little wacky with mood swings.' (At the mood swing comment he smiled and said-'so you'll be more like me-cool.' I laughed and left it at that for a few days, every so often giving him a little more info- like -BTW that medicine is a shot like Joe's mother takes for diabetes. He doesn't have to read the liver book, just some basic stuff.
Maybe most importantly -your children, 14 & 18 right, have known you as a sober most likely reponsible caring parent. That's who they know - maybe they have knowledge of hep c from the relatives you spoke of- but the way you put it to them is probably what they'll go with. They don't need all the details of the past. Even though my son knows I was a drunk and did drugs  and saw me bounce in and out of detox for 2 years-that's it. Not details or what one's or the ugly situations and all. I don't hide it. He's got his own story to live, if he asks, or I see a reason, I'll tell him.
Whether we are sober or not, have a past or not, doesn't decide which of our children do or don't experiment or head for the wrong lifestyle. I grew up in a loving, caring stable home with wonderful examples all around me. I went the wrong way, my siblings didn't. My daughter grew up around partying and seldom has a drink. We can prepare them the best we can, they  eventually  make their own decisions.
You got this far -I'll bet when you present this to your kids, they'll understand, it's not to keep you from dying, it's to help you live better.
Be Blessed,
Don

[amirtracy]

i've contacted schering-plough and my dr. said his office sets it up. they have a "commitment to care" program for people w/o insurance. i qualify unless there's some hidden precursor i don't know about yet. i'm keeping my fingers crossed or i'm screwed so to speak...

[Mister beagle bailey]

I to start tx on Fr. 12/29 and have a pit in my stomach. I don't
plan to tell people about treatment, except a few.  How ever if I get bad sides I plan to blame it on my Thalassemia(amemia) and that I'm being treated for that.

Bob

[MrsOckert]

Has anyone told you the treatment costs $4,000 per month????  How are you paying for the tx if you don't have insurance?

You can go to clinicaltrials.gov to look at trials.  You need to get into a trial.  Or contact the pharmacy company free meds program.

[amirtracy]

No i'm not in a trial study...i live in orlando florida and don't have insurance. I was diagnosed mid-october but couldn't afford the biopsy until now. i'm hoping to start treatment mid-january. in a trial is there a placebo group or is everyone being treated? i can't wait for this all to be over. i'm very determined to beat this. good luck to you in your treatment. i'll keep ya posted. :)