Well today I found out that I have Hep C geno type 1A. I am going to go for a liver biopsy as soon as I can. I have 2 teenage daughters (15 &18), and I am struggling on whether I should tell them or not. The doctor said for me to get them tested since we are not sure how long I have been positive. We found through some medical records my liver enzymes have been elevated for at least 2 years,when I had my gallbladder out. And we are assuming that I contracted the virus when I was in 6th grade. I was sick and received platelets and blood. Any suggestion would be greatly appreciated. Thanks
It's a very similar type story that many of us have had to deal with. You aren't alone.
I told my children - they were even a bit younger than yours. I had them tested and they were fine although I had the disease about 20-25 year they were negative. Unfortunately, that is not always the case even though it's quite a low rate of chance it's still there.
Once you find out if you need or want to treat it will be important that they know.
I know it seems like a hard decision but once you let them know that most people die WITH the disease and not FROM the disease and that is a usually very slowly progressing and all that - they will feel better rather than be blindsided if you treat and develop side effects and they dont know what is wrong with you.
Kids are too perceptive, they'll notice.
I'm sorry for your recent diagnosis. The more you learn about Hep C the less scared you will be about it.
What reasons do you have for feeling that you would not want to tell them? It's all a personal choice as to who we tell but, for me personally, I told all of my family. For one thing, it helped me not feel so "dirty" about Hep C. I didn't want it to be a dirty little secret which the stigma of Hep C can produce. I did, however, make sure that I was well informed about Hep C before I told each of them so that I could answer any questions that they had to put everyone at ease about it. I have never regretted that decision.
Yes, it would be wise for your daughters to get tested but, unless you shared needles with them, the odds are on their side for being clear. I gave birth to 3 sons and raised them to adulthood all while unknowingly having Hep C and none of them got it from me...and neither did my husband or my ex-husband. They all got tested.
I'd wait until I was fully diagnosed, incuding the biopsy, and aware of all the options available based on the complete picture. Oherwise, the entire family will stress over the 'next step' and the step after that and so on. I'd bundle it all in a single lump. After that with full understanding and knowledge then get the kids tested. You need to be the knowledge broker in all this.
Obviously a very personal decision, but I opted not to tell my kids (15 and 13) at this point. Well, I opted to only tell a handful of people, all of which are family. I will tell the kids at some point in time, but now just isn't right for me.
I start running through all of the scenarios, i.e. they tell their friends, their friends tell their parents, most of which I've known for many years, etc. I'm just not ready for that exposure. I think when they're both 18, I'll probably tell them, as well as get them tested.
For me, knowing I more than likely was infected from IV drug use in my late teens, the decision to tell them hinges on my willingness to be open and honest about my past. I'm such a preacher of not doing drugs, that I don't want to seem like a hypocrite. I could say I have the virus and not go into details, sure, but that's not my style.
Like Nygirl says... if you decide to do treatment you will have to tell them. If I hadn't told my kids why I was so weak and tired all of the time while on tx they would have probably thought I was dying or something. Plus it helped them understand why I was so short tempered with them when the "Riba Rage" started. My kids are 12 and 14. They just told their friends that I was taking some shots that made me sick. They don't go into detail... that would be too hard for them to remember.
I told my kids 12 and 15 at the time and I am happy I was honest about it
I dont feel the least bit hypocritical telling them about the dangers of drugs. I tell them I dont just read bad stuff about drugs in the newspaper, I know it first hand. One friend dead from AIDS, two others shot and killed, another served time for dealing crack.
You will not necesarily have to tell anyone ( except spouse)about Tx. Some pople have sides. Others don't.
sorry to hear your news. It's funny, as moms we worry more about how the kids will take it then how we will. Love does that to you.
I'd say give yourself a couple weeks or more to get your mind around what it all means, you need to be a little better informed before tellling them, so that you won't cause them to worry and panic.
This disease can be treated successfully, and it does take a long time to harm us...40 years or so, and new drugs are coming this summer which will increase the chances of cure to 75-95% depending on your genotype. So there's lots of reasons to stay hopeful.
Give yourself a chance to breathe and learn...and don't worry, kids tend to take things far better than we think they will. And, as everyone told you, its very rare to have passed this on to them, so them not knowing for a short while while you regroup is not going to make any huge difference.
I'd definitely tell them, they'll know something is up anyway, but give yourself a chance to be familiar with what you have first, so you can explain your options to them. If you are informed when you tell them, they'll be a lot less scared than if you tell them today before you have any knowledge of the disease of your treatment options.
sorry that you are going through this. As far as telling your teen-age daughters, if it were me, i would tell them. there is nothing to be ashamed of especially if you got it from transfusion? I would also let them know the other possible ways that they can contact it, and they are at that age where they experiment with things and the way these kids are into body piericing and tatoo's? My life is an open book today all for the reason of helping someone else thru what I have gone thru. You may want to tell them that it is between you 3 and you just wanted to be honest with them. What if treatment causes changes in you? (hopefully it won't), but you never know. Learn all you can about hep c. I think it would be some good education for them to know. But this is only my opionion. By the way I was geno 1 too, and today am svr!!!!! You can do it too!!!!
Sorry to hear that the bad news is confirmed. If you have to start treatment, then unless there is a really compelling reason NOT to tell your kids then you definitely should. Chances are a slight gap will open up between you and the rest of the world while you are on treatment, and your children should know the reason for it. I told mine, 10,14,16,19, and they quickly learnt when to tip-toe and when to help out. You don't mention any reason why you shouldn't tell them, but if there is, then think it over carefully, once you put the salt in the pot there's no taking it out.
I hope you get through it all with the least problems, everyone here will wish you well and help with answers when you need. Good luck
The only people I have ever told about my hepc diagnosis and subsequent treatment was my husband and 2 adult children. I never told my co-workers or friends. About three months into treatment I had lost a considerable amount of weight and had what I like to refer to as the mask of death. As I slogged through treatment I'm sure there were many conspiracy stories floating around among the staff and friends as to what was wrong with me but I really didn't care. I did not SVR so when I treat again this summer I'll just slog along for the second time, raising some eyebrows again I'm sure. I preferred to keep my health status private except for my immediate family and I'm glad I did because I have the option of keeping information on a need to know basis which keeps things more simple for me.
Why wouldn't you tell a 15 and 18 year old? At the very least they need to know the importance of not sharing toothbrushes and razors - with you if they test negative, with others if they test positive. As a parent you should be able to explain it in an intelligent, non-stressful way. The 18 year old especially is an adult and deserves your honesty. I'd be fairly ticked off if another adult I lived with had a chronic, bloodborne illness and didn't tell me.
Thank you all for your advice. I did tell my girls and they took it pretty well. I explained everything from how I think I got the virus to the treatments. My 15 year old was pretty scared so I was able to reassure her that everything would be OK and I'll be here to make her life "miserable". LOL Again thank you all for your as advice on this matter and others that I have posted. It's nice to know I have somewhere to go with questions and for advice.
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