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301044 tn?1206814691

telling teenage children u have it

Hello, posted yesterday for the first time and am amazed at how much there is to learn about this disease that has inflicted my husband. Our 13-year-old son is mortified to hear his father has hep c. our son can only id Hep c with an std, something he must have learned in school. I told him it's not that but he can't hear otherwise right now. he also believes it is always fatal. He just thinks his dad has a deadly std. not a good image of dad. any advice on how to handle this? cosmo23
22 Responses
Avatar universal
You might tell him that people catch HCV very infrequently thru sex.  Just as it's possible for him do get fall and break a bone riding a bike but it very seldom happens.  Often times the information that they communicate to kids at schools they have to "dummy down" so that younger kids can "get" it.  The HCV/STD connection is very slight but it's a FAR easier thing to tell kids than you can get the virus serving your country (and getting an airgun innoculation), becoming a mommy (and needing a transfusion due to birthing complications), or going to the doctor, dentist, or hospital (as these were all sources of the infection before we knew what HCV was or how it was transmitted decades ago.)

The use of drugs connection is a more common source of infection.  I'd imagine that you might communicate that this is a possible avenue of infection but that about a third of the people with HCV don't know how or when they got infected.  

There's no question that many got the virus thru drug use.  One of my pet gripes is that I feel that the medical community or government might prefer that most of us think we got the virus thru drug use or thru sex.  The scenario is preferred over inquiry into infections which were acquired thru the military, bloodbanks, hospitals, via dental work or other sources.

When you look at how the US military has fought the notion that HCV could be fought thru airgun vaccinations or how the Canadian government has fought compensation to some groups who received tainted blood one can draw the conclusion that it is all about money and blame shifting.

I'm not sure that the information out there is completely balanced and objective, cynic that I am.  : )

best,
Willy
229003 tn?1193705524
just for the record - the Canadian governement has made full restitution to those inflicted with HCV through tainted blood sold to Canada by Bill Clinton - It is all finalized and over, and payments that average about 35 grand per person have been distributed..The Governement never fought the compensation theory to the inflicted, it was all geared around who was responsible, the Red Cross or the Government itself for buying it...Red Cross was the sacrificial lamb..
151263 tn?1243377877
At 13 he's certainly old enough to understand the basic facts about hep C. Where it comes from, who's at risk, how it's communicated/spread, how dangerous it is, how it's treated etc. And he certainly has access to the internet so he can look it up and learn all about it. Maybe even in a place like this, and maybe even with the help of his mom and dad? The more he knows, the better off he'll be and the more he'll be able to understand that his Dad isn't likely to die anytime soon from some "dirty STD."  And then he might also educate his friends and even teachers at school too.
Avatar universal
Just for the record......yes; they finally did it in about the past year for a group of people who were infected before the rather arbitrary prior cut-off date (no compensation prior to Dec. 31, 1985) the folks who were infected after that date in another window WERE compensated some time ago.  The "new compensation group" were not informed of their infection for quite some time.  They were continuously denied any compensation although as a group that had been infected longer than the approved compensation group they continued to experience sickness, death and financial hardship.

For the victims of this many who have died or who have been to sick to work 35 thousand is too little and too late. It WAS better than what they had received prior to last year; nothing.

When you look at the "help" that some HCV infected US vets have gotten from our government it's not much better.  The US government has fought for years the notion that air gun injector vaccination transmitted HCV to our servicemen.  Once again, many went sick for decades not even knowing they were infected. In my opinion here again is a measure of help that came too little and too late.

Reining it back to the topic...... my point is that some of the information out there about transmission is conveyed by the governement which has it's own agenda.  It may be one reason that school kids come home with the notion that HCV is a STD but are curiously ignorant of other avenues of infection.

By the way (and for the record) : ).......in looking at a HCV handout to veterans distributed by the VA a few years ago...... still no mention was being made about air gun injection as a possible source of HCV transmission.  You can draw your own conclusions about that.

best,
Willy
229003 tn?1193705524
I totaly agree about the Vets and the airguns - The US Government has had their head in the sand for quite some time regarding exactly what they did to their troops in the name of "freedom" - I lost a brother in a little conflict in Southeast Asia and not so much as a "atta boy" coming from the US Government reagarding the loss of a 18 year old kid while "defending" the country...Now they have many many people infected with the Agent Orange toxins and those inflicted with viruses from airguns - Does the US Government offer any kind of restitution to those people, hell no - they don't even offer free medical care unless you are sick enough to be on disability - The whole thing makes me sick and I hope in the hereafter some people have to answer the call..
Avatar universal
Here is a site to connect with the latest settlement over the tainted blood transfusions. -Willy

http://www.pre86post90settlement.ca/english/eng_home.htm

The Pre-1986/Post-1990 Hepatitis C Settlement Agreement is for the benefit of people infected with Hepatitis C through the blood system in Canada prior to January 1, 1986 or between July 2, 1990, and September 28, 1998, and certain members of their families.

Please review the information on this Web site very carefully. This will help you to determine whether you are eligible or not for compensation. Once you have reviewed the information contained in this Web site, you may contact the Administrator if you have any questions or comments.

How to Contact the Administrator

Telephone: 1-866-334-3361
e-mail: ***@****                
Fax: 1-888-842-1332

Completed Claim Application must be submitted to the Administrator at the following address:

Pre-1986/Post-1990 Hepatitis C
Administrator
Suite 3 – 505, 133 Weber Street North
Waterloo, ON,  N2J 3G9
Avatar universal
Thanks; I'm angry about the situation.  Sorry if I came off as terse with you.

Willy
229003 tn?1193705524
although I live in Canada I was not eligible for any compensation becasue even though I got my virus from a blood transufusion it was a xfusion given to me in the States and we all know how they feel about money spent on anything other than defense
229003 tn?1193705524
don't be sorry I totally agree with you - I am angry as hell about it too
301044 tn?1206814691
thanks for your help. I just spoke with my son and gave him your stats. He seemed a little more secure about it. I told him we don't know how his father got it, and that he should not touch dad's razor or toothbrush. Have another question if anyone can help. been reading a lot of posts here regarding the seriousenss of hep c. is every case terminal? we're getting a little worried here b/c the virus seemed to have been dormant for the 10 years we've known about it, but now we've got drs. appointments lined up for the next few weeks, as I guess my husband's counts were high. advise?
229003 tn?1193705524
yoou can live with this virus for quite a few years without even knowin git - I have had this virus since a blood trasnfusion in 1969 nd I only have stage 1 fibrosis, but - that said, the fibrosis progression is non linear - one person can it for 40 years and only progress to stage 1 and another person can progress a stage every 5 years..The only way to keep site of the dange (if any) is by having a liver biopsy...
301044 tn?1206814691
thank you. i think a biopsy is on the horizon, as I said, the doctors suddenly seem to be making his hep c a priority. I am trying to learn as much about it as possible and am amazed at how much there is to know. I'll be honest, I'm a little scared. I've been reading about the treatment and can't imagine how my family will survive that. He has been foggy lately and complaining about unexplained joint pain. i guess those are symptoms.

I should also add that he was in a serious car accident in 2006, which left him brain injured along with some other problems. He was in a coma for a few days, a ventilator, etc. His liver was jostled along with other organs. His hep c, though, has not been a subject with his drs. until last week, after routine blood work. (they've known he's had it) so, it's hard to say if the fogginess is head injury or hep c. It is also difficult b/c he is not as cognizant as he once was so I'm sort of taking the wheel on this. anyway, thanks for your advice and for letting me vent a bit,
229003 tn?1193705524
I am on treatment for hep c right now - I am in week 39 out of 48..The treatment time depends on what genotype you have, if it is genotype 2 you do 24 weeks if it is genotype 1 you do 48 weeks (not too sure about genotype 3 and 4)  It is hard to do this treatment but it is manageble..But first things first, you need to find out what his viral load is and then his genotype and then a biopsy and after that you can make a decsion what to do---I know it iscary I was scared stiff when I found out I had this, and it is a waiting game too which frustrated the heck out of me - But one day at time is al you can do -- Best of luck Beth
179856 tn?1333550962
I did 72 weeks of treatment, my kids are a bit older I think they were 15 & 17 when I started (now almost 17 & 19) but I just sat them down and educated them about it.  Be in Charge books that I got from the doctor came in handy cause there weren't a lot of words but it gave the picture.  They do know I used to do plenty of drugs in the past.  I have always tried to teach through my mistakes so this was another good one to show how mom messed up big time when she was younger and now she has to do chemo.....

All in all they dealt with it like adults because I treated them sort of that way about it.  Like they were mature enough to know the "truth".  It's really the only way to go cause kids know when we are fibbing or not. I mean you don't have to say ALL the horrors that could happen but just let them know that many many many people have it right now and have NO idea that they do.  That you can get it from a nail salon even (most of us don't go to them anymore once we learned how easy that would be to happen!).

Not until the rich republican white men's wives start all keeling over with it from the salon and the men worry they might get it will things change with this stigma.  Look at Aids and how much of a stigma that has...yet all those hubbies who brought it home to loving wives..........

America is a great place but things haven't changed that amuch yet.  Only WE can do that by talking openly and honestly about the disease.  Then people will be able to KNOW better and not treat us all like a bunch of freaks.

Best of luck with all of it.

Make sure he gets the biopsy it's crucial in my opinion.  You need to know the genotype, then what stage and grade he is (level of liver damage progression).  After that nothing is really that important. Those two pieces are the clues you will need to determine what you need to do.

Good luck, keep learning.  It's the only way!
Avatar universal
Good grief, I am sorry your question turned into a political debate and dollars.  I THINK you were concerned for your teenager.  Why on earth Bill Clinton (a president who was impeached, but still got his library...lol) and made a millionaire out of a white house aide who had an affinity for cigars.  And do not get me started on Canada...

I have a 16 year old and she is brilliant and I am sure yours is too.  The stigma of a "virus" that has no cure is uinmistakeable.  I was in health care for many years, I know how and when I got my virus and it was not health care related.  I know many professionals who carry the virus and keep it to themselves until they can no longer work.  I know of many health care workers who also abuse drugs and alcohol, doctor, lawyer or indian cheif we are all human.

I was honest with my daughter, and I do not tell anyone anymore anything except I have a chronic organ disease.  My daughter is mad at me many times, and confused many times too.  I hate for her to see me when I am fatigued and freaking out, but hey it happens and I just tell her the truth.  I am afraid it is impossible for anyone that lives in the same house with a person facing this illness and treatment or symptoms from it could not help but notice the change.  I look in the mirror, she looks at me, but hugs and lots of I love yous are all we can do to cope.

I say I am sorry when I have a panic attack over things that are as ridiculous as going to the market and after two years my household has kind of adjusted to the change in my lifestyle.  I tried treatment and had to stop, I am going to do something to try and improve my quality of life and my families too, but for now just waiting and living day to day.

where is your husband in diagnosis?  grade, stage? biopsy results?  less than 5% of the population get this virus from sex.  and many, many go to the doctor and on record as "unknown"  

The virus is often fatal unless treated in the "acute" stage.  but it takes many, many, many years I have been honest about that to my child, not ready to give up by any means and who knows maybe some new treatments will surface.  

Good luck to you all

Sorry to rag on the political input, but they really went everywhere but to the question...ey  :)
217229 tn?1192766004
Ok here's my question.

I think I got mine from a shot of Rhogam in 1996 (January)

How would I go about proving it?

I can prove I was Hep Panel Clear in 92 -94 because I was an EMT.

I think I can even prove 95...

Because I had a lot of bloodwork done.

BUT --- here's the deal - I have no idea how to start looking into it.

Meki
Avatar universal
Just so you know I am a type 2b and was put on a 48 week treatment.  I was in healthcare.  I never learned in any clinical setting that geno type was correlation for treatment time?  I would like to read about this do you have any information?

Avatar universal
im 20 and i recently found out the my mum has Hep c, it is scary even for me and before coming on this site i also was terrified and felt like my mum was going to die, all i can say is that u just need to see things from his perspective, he is still sooooo young, u cant expect him to be mature and think like an adult, assure him that eveything is gonna be okay, sit him down and explain the facts to him, good and bad, enlighten him, people deal with these situations differently and im sure that he is just acting out and he doesnt want anything to happen to his dad, maybe u can have a private conversation where its just u and him, explain to him that his dad needs alot of support right now and understanding
233616 tn?1312790796
edicate yourself, in here, then educate your son. air guns and tatoos both can cause this. As can IV sharing, plama or blood products, or any blood to blood contact such as anal sex, which is where he probably hot the STD connection, although that's probably the more rare way to get it.
Normal sex with one partner, usually does not transmit, but violent sex can.

My idiot stepdaughter went out and got a tatoo a month after I explained all this to her. Obviously the young think they are bullet proof. I either got this from plasma, or from needle sharing half a dozen times as a teen right after my parents both died, and at the continual pressure of my love him to death boyfriend, and before anyone knew you could get it from a molecule of an infected person blood. Dumb, but what are you gonna do.Hindsight. ten thrills and ten years of misery, not a good trade off.

Just bone up, and share the GOOD NEWS of the cure rates now, not just the down side. It's easy for kids to get depressed at this age. Since Aids is fatal, many have a similar view of Hep C, which until recently, usually was. The cure rate is 50-90 percent depending on genotype and stage of disease, so it is curable, that's important to stress at his age.
A little denial is normal and necessary at his age, give him time to process...my 30 year old is still having trouble, and my 18 year  old went out to tatoo...to as much as say, what do you know idiot mom, the witch that wanted to draw on me assured me it was safe so of course you couldn't be right.  Can we say B slap in here???  Wish I hadda.Not my style but a little choking maybe?...I can dream...rolleyes.
206807 tn?1331939784
Not until the rich republican white men's wives start all keeling over with it from the salon and the men worry they might get it will things change with this stigma.

I am a White Republican Male (not Rich by any means) and I am not offended in the least by your comment. I just wrote it off as rhetoric.
What does bother me is the hypocrisy. If I would have made the same comment but used Black Democrat Males, The Clan of Med Help Puritans would come with torches to burn me at the stake.
I am not impressed with any of their track regarding Hepatitis C. Rather it be Republican, Democrat, Male, Female, White or Black. When I read this comment I couldn’t help but think of “Homey The Clown” (In Living Color) and how he always blamed “The Man” for everything.
179355 tn?1207410851
25 years in the Marine Corps, subjected to air gun innoculations in 1971, RVN 72-73, retired thinking health care issues were taking care of. After all, it was one of the selling points. Come to find out, it was just another hand job just like everything else. Infected through airgun innoculations? They lined you up two abreast, corpmen on each side. They told us not to flinch or tense up or it'll rip you. Airgun in one hand and a towel in the other to wipe the blood of those that flinched. Next! they yelled. Step up, kapow!  Wipe. Next!  Gotta hand it to those swabbies, they had a rhythm going. To bad they didn't include cleaning the needles after each shot. Oh well, God, Corps, Country, OOH-RAH!!     btw, I pay for my health insurance.
Avatar universal
I doubt many rich white guys have ever given their loving wives AIDS, at least through sexual contact.  The Aids lobby likes to trumpet cases like this for shock mongering and money raising reasons, and it sounds like a plausible method of transmittal, but it probably rarely happens.  Having said that, Hep C could sure use effective propaganda of that nature to raise money for funding research.
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