Newly diagnosed and Passed it to at least 1 Child

[dancegirl54]

I was just diagnosed as type 1a, devastated right now because it came up when my 18 year old donated blood and got a call and a letter with her diagnosis. There was no way she could have gotten it. I thought I had been tested for everything when I changed my wild life 23 years ago after a bout with Hep B. My liver enzymes checked annually - always fine. I am scared for my daughter and my two other children who have been tested - no results yet.(I'm single) For myself, I am shell shocked. Waiting to see the specialist is agonizing - my dr did run the genotype tests, etc, the nurse who called me with the results said the amount of the virus was too high to count and that was a bad sign. On the upside, my daughter has already seen a specialist but we dont have her actual counts yet but the Dr was very positive for her because of her age and condition. She is very upbeat and happy with the specialist - furious with her pediatrician who she says was very condescending. How do you deal with this blow? I'm afraid I'm going to die soon and I can't, I need to care for my kids, especially if the younger ones have it too.

[dancegirl54]

My kids are teenagers and have had this all their lives and they have always been healthy. Like you!!! You can't second guess yourself about having your daughter- you have a child that you absolutely love and what would it be like without her? Unimaginable.  That's what I tell myself, would I NOT have had children had I known? Then I would have been deprived of all these years of joy - I wouldnt trade that for anything.  Chances are pretty slim that you would transmit it to another child.  My dr thinks that my V/L must have been high when I gave birth to the 2 that I onfected and the other 2 arent infected. You have the benefit of knowledge and you can have that monitored if and when you have another child.  

Thank you so much for posting

[cuteus]

if there is a blessing in your hcv, is the fact that you are genotype 2! with a chance FOR A CURE OF 80% and only 6 months of meds. I secretely wished for that genotype after learning that I was positive for a viral load, but it was not meant to be, and I was given a 50% chance at viral cure. THe present meds do work, but hopefully you have all the time in the world.

[sybil22]

I'm a patient at the Center for the Study of Hepatitis C in NYC.  I don't know if you have such a program for children born with HCV, (CATCH-C) but thought perhaps you could ask you own pediatrician about it.  Here's a link with some info.

www.hepccenter.org/pediatrichepcpatients.php

Sybil

[amommy]

Thank you everyone.  I really appreciate the support.  It is just such a WAVE of emotions, and I seem to have been doing a good job of burying my head in the sand, but alas I think it is time to start digging out.  My husband and I decided to have children because EVERYONE told us that it was such a remote chance of being transmitted etc.  I read a lot that said they thought the transmission occurs at birth, so I even went so far as to convince my OB that a c section would be in my baby's best interest because I wanted to do whatever I could to keep my baby from getting hep c.  When all was said and done, it didn't matter one bit, but in my heart, I know I did everything I could.  My daughters GI doc, (actually, she is one of the authors of the articles that was linked on the web site you posted sybil!) told me that their are two schools of thought of going ahead and having all your babies then getting treated or getting treated and then having babies. When it comes down to it,the docs always say it is up to me.  Sometimes that makes me want to SCREAM!  Other times, I am so thankful that I have that option.  We are genotype 2 (i honestly can't remember if it is a or b, it's been that long since we figured all this stuff out!)
I have so much going on in my head, but I will try to leave it at this for now!  Let's just say that the two biggest things are that I REALLY would love for my daughter to not have to worry about this as she is growing up, which makes me think I would want her treated early on.  HOwever, I am absolutely PETRIFIED of the long term effects of the treatment....that being said, it also feels so wrong to me to put her through treatment if I haven't gone through it myself....ahhhh no one ever said this would be easy I suppose....sometimes I just get so frustrated...
Thanks for listening to me...

[sybil22]

I've been posting on HCV boards since 1999.  Seems to me that there are more and more younger people posting.  When I came aboard almost everyone was from the 'Baby Boomer' age.  I'm sad that you younger people are being diagnosed, but glad that you are able to find others you can relate to...especially when it comes to having children.  My 21 yr old's doctor suggested to her that she might want to do treatment before she gets married or decides to have children.  For now, she can wait.  Hopefully new drugs will be along within a few years and we'll all be able to 'move on' with our lives.  As you know so well HCV has a tendency to keep us all in Limbo!  I'm sorry that you are so frightened to have another child right now, but I completely understand.  When you are comfortable, and ready, you may even want to give the treatment a try.  As I always tell people in my support group....we don't sign contracts when we begin treatment...so we can end it at anytime.  I've done three types of tx myself.  Figured I'd try for three months...see if the stuff was working and take it from there.  You have time on your side....time to think about treatment options, time to try alternatives...and time to have your babies....cause you are young.  Your future really is bright.  The new treatments, the awareness that seems to be coming about....I'm very hopeful that our fortunes will change.

Sybil

[wheatgrass]

You've given your child life. My mom had HepC, but she didn't know it until later in her life. I'm glad she didn't know about it. Somebody might have talked her out of becoming pregnant with me. I have HepC and I'm dealing with it, but it hasn't stopped me from having 49 great years on this planet (with more to come). The new treatments currently under development portend even better times ahead for people with this disease.

[amommy]

Hi everyone,
You have no idea how happy I am to have come across this site, and particularly this thread.  I am 28 years old and have Hep C.  I actually found out I had the antibodies when I was 17 and donated blood.  At that time, apparently they only tested for antibodies, because everyone I saw told me not to worry that I had been healthy this long it wasn't going to present a problem for me.  Well, I am 28 now, and still really don't have any issues because of hep c.  I do have an 18 month old daughter who is also positive.  This was absolutely devastating to me.  It has been a hard road.  My hubby says she will be fine, but I have such guilt and worry about her a lot.  She is developing fine, and as you would expect at this point, doesn't seem to have any issues.  Anyway, I have a lot to say and could go on and on, so I hope to post here more.  Hey, by the way, I am in MA as well.  I guess my biggest issue right now is that I yearn, I ache to have more babies, but I am petrified of passing it on to another one.  I am not against treatment completely, but something in the back of my mind is keeping me from going forth.  I think I might want to try some alternative stuff first, because if I can decrease my viral load, then I would feel comfortable having more babies.  My LFT's are all normal, and my last ultrasound which was several years ago, maybe 3 or so did not show any damage to my liver, though I know ultrasound isn't exactly the most reliable.  Argh, sorry about all my rambling.  It is kind of liberating to find people who can undersand how all this feels.  I hope to talk to all of you a LOT MORE!!!!!  

[sybil22]

My middle daughter called me at the office too.  I remember leaving the office and heading for the LIRR train to go home.  I was so upset at the time, I actually came within inches of a truck that was heading up Broadway, almost daring it to hit me, not caring...almost hoping to end the pain....or at least give my brain a rest, cause as you know that constant weight and thoughts just didn't seem to let up for a minute.  Whew, it's clear now.  I can actually 'laugh' again, and do quite often.  Hard to believe, huh, but you will too.  I used to wonder if I would EVER wake in the morning and have even a few minutes of NOT thinking about HCV.  Sure, I think about it just about every day even now...but it's only for minutes at a time and in no way consumes me or my life...or the girls either.  I think it's a feeling of having control.  This is all new to you and your kids.  You are dealing with a lot.  Once you get the biopsies, and begin to take control over the situation, you'll feel so much better.  Alright, so you have to face the 'ex' and his feelings, but what would HE have done?  Kept your son in the dark about his Hep?  That would have been the easy way out, for the time being...but in the long run, only hurt him.  As far as nutrition and the kids.....tough one, cause you know at times talking to teens is like talking to the walls.  I try to get my girls to take Milk Thistle, a Multi Vitamin without iron, and Vitamin E.....but sometimes it's like pulling teeth.  Their Docs say those are all OK.  They can eat what they like....but of course no alcohol....which it really hard at their ages.  I know each of them have had alcohol, but I just try to keep stressing to them that that is the reason I am still around, and that is also the reason their dad reached ESLD.  A hard lesson, but a fact. I attend regular support groups and have for years, so I've given the girls lots of literature to read over the years.  Sometimes they don't want to talk about HCV, and other times they will ask questions.  The most important thing is to find a doctor they love.....we were lucky in that area....well, after three doctors that is, but now we've got a great one.  It's good that the kids have each other at least to talk to, cause if they are anything like my girls, they don't want ME upset......Even at their ages, they still watch their parents reactions to thinks...and learn from them.  I'm sure you'll set a good example.  You stay strong and do the right thing....and they will follow.  

Sybil

[dancegirl54]

Daughter's results back - she is a 1a also(of course she would be) and ALT was 39, v/L 6.6

She will have a biopsy as your girls did Sybil.  Any tips on nutrition and boosting immune system. She is a self proclaimed vegetarian but really eats a lot of junk food.

They missed the clotting factor in her blood work so she is coming to her brother's appt tomorrow to have more blood drawn.  I have a lot of anxiety about "facing" the ex who may show up at the appt.  Going to work right from there - it's very stressful.

Sybil, I wentthrough exactly the same stuff with my daughter - it was May when the Red Cross sent the letter and she was going through senior stuff, parties, excitement about college, getting scholarship letters, etc.  Only they called as well as sending a letter and she is 18 so they told her on the phone. What a dark day, she was hysterical when she called me at work and it has been a ride since then.  Funny, my dr wouldnt tell me over the phone.

Is there anyone else on this forum from the Boston area that has experience with Beth Israel/Deaconess? It's where I go on the 28th

[Bill1954]

Well put, Sybil - good words of comfort and wisdom.


Bill

[cuteus]

THANK YOU Sybil! you were the best one to relate to dancegirl! TY

[dancegirl54]

Thank you Sybil, and everyone else.

I cannot believe how similar our stories are. I live in MA BTW.  I am going to be reading and digesting what you have shared with me for a while but just wanted to let you know how much it has helped to break this feeling of isolation.  My 17 year old has his appt on Tuesday - same dr as the 18 year old at Children's Hospital so we will get more info as time goes on and I will keep everyone updated. My ex is furious with me that I told the 17 year old he was positive,  I understand he is angry, ironically having someone else blame me takes the focus off me blaming myself so much.

[sybil22]

OK...bear with me here....my first time on this particular site.  A friend of mine mentioned your situation, so I thought I'd do a search.....and I found you!

I am so so sorry for what you are going through, especially being newly diagnosed yourself.  Your story reads so very much like my own, except that I was diagnosed six years ago, but back then was a complete basket case, being a single mom, having cleaned up my act YEARS ago, and having been hospitalized over thity+ years prior with hepatitis....I had moved back home to NY from MA, bought my first house, began a new job in NYC....and someone pulled the rug right out from under me.  My world completely fell apart with one doctor's visit....or so I thought.  It took me awhile to digest the diagnosis of HCV and the more I read on the internet, the more frightened I became.  At last, I found myself a local support group and an online one....and that is when I began to find comfort, knowledge, direction.  What a relief it was!  I found some EXCELLENT doctor referals through my support groups, and am so glad I did.  The first doctor that I had gone to (who was not referred by HCV patients) had me thinking I was going to be dead within 5-10 years and also told me that I didn't need to have my three daughters tested....said it was EXTREMELY unlikely that they had the virus and unecessary to test them.  My oldest daughter decided to have the test done for her own peace of mind....and it came back Negative, as we had all expected, but when my then 20 year old had the test....my worst fear was realized, as she was HCV positive.  My own HCV status was then put on the back burner, as I know you can identify with this.  My daughters' dad, my former husband, was at this point ESLD (he continued to drink, and drug), and mom HAD to be strong for them to show them that people don't all die from HCV....and I was determined to show them by example and education that we will LIVE with HCV.  Alright, so I put up a good front for awhile....but I now BELIEVE it, honestly!  When my 17 year old was finally able to donate blood at her Senior Class Blood Drive...her HCV blood was rejected....she too had contracted the virus.  I DO know the mess of feelings that you are dealing with and I can honestly tell you....it will get easier to cope with!!!  My girls were born with the virus and each had biopsies, one showed mild inflamation and the other some fibrosis.  The doctors told them and me that they CAN wait until they feel ready to treat, if they so choose.  At least our kids were diagnosed before they got into the lifestyle of fun and partying = alcohol, and that is so important.  Take your time to digest the information, find yourself and your children doctors that you feel comfortable with.....No need to make any dicisions based on emotion....make them on your intellect and gut feelings......You will think and see clearly again, it just may take a little bit of time....but WILL happen.  Wishing you all the very best!

Sybil

[sybil22]

I lived in Worchester County when I was in MA....a little town called Gardner.  It is difficult not blaming ourselves, but it does none of us any good.  As far as myself, my girls were the reason I finally cleaned up. I wanted a better life for them, for me.  I wanted to be the best mom I could be. Unfortunately their dad was not able to overcome his addictions and died just two years ago.  My youngest daughter at his side.  I never would have 'given' them a disease such as HCV.  I was just a kid myself when I got infected.  Drugs, at that time were my way of dealing with the pain of my own childhood.  At the time, it was drugs to escape....or probably suicide.  I don't feel guilt, per say....I do, however, feel pain for what has happened. I think it is more difficult for young adults to accept this disease, but accept it...they must.  I feel really strongly that there will be a cure in their lifetime....and I tell them that all the time.  They just have to keep their livers healthy until that day comes.  I'm sorry too that you have to deal with your former husband's anger.  Sometimes people lash out at whomever is there...and that is you right now.  I'm sure he has no clue as to how difficult it was for you to tell your child.  I'm the one who received my daughter's letter in the mail, and I kept it from her as she was in her last months of High School.  She was Captain of her Lacrosse Team, getting ready for finals, her Senior Prom, Graduation, etc.  I wish I could have held the news forever, but it wouldn't have been the right thing to do.  I know she was very concerned as to why all of her friends received their Blood Donation cards, and she didn't.  She knew her sister tested positive, so she had to be worried, as I'm sure your child was.  You did the right thing, the only thing a mom could do.  You can't get help for your kids if you keep them in denial.  Our kids are not alone in their HCV status, that I'm sure.  They are actually among the lucky ones, who know they have HCV and can make a conscious effort to stop it from progressing.  It's gonna be a bumpy road ahead of them for awhile, but they will be fine.  You did good!...and you're doing the right thing coming to these boards looking for help, looking for answers.  You'll be reaching out to help another mom who has children with HCV down the road cause you will have walked in their shoes.  This feeling of total despair will be behind you.....Promise!

Sybil

[rearfang]

I feel for you and understand your fear. Please try to be strong and positive. Guilt will be of no use now; all you can do is look forward and take things one day at a time. You and your children are in my thoughts and prayers.
Lauren

[honey1616]

Dance,,,,what seems today to be overwhelming will all work itself out.  You have had alot delivered to you and I know you must be very upset.  Take one day at a time,,,your kids are young and will be able to do tx as I know that is a big concern for you. You also will do what it takes to get well for them.  Going through the tx,,,,is not easy but whenever you have a goal in mind and use goal markers along the way to achieve,,,it all goes easier and gets better day by day.  Hang in there,,,You and your family are in my prayers!

[dancegirl54]

The good news is that my 10 year old daughter is NEGATIVE
The bad is that my 17 year old son is positive.  So I have infected 2 children, my 18 year old daughter and 17 year old son. I understand from my daughter's visit that prognosis for them is fairly good. Trying to be positive. I am so relieved about my youngest though, my biggest fear was getting too sick to care for her and having no one to take her if she was infected.

I will keep you updated on our progress. Thanks for your positive comments and I am getting so much from reading all of your posts.

[dancegirl54]

Thank you so much, I have felt very alone until now, this forum is great.

My daughter had a positive HCV test from the Red Cross when she gave blood, her pediatrician ran the test again and it was positive as well. He did not run any other tests, just referred her to a liver specialist at Children's Hospital. They ran the more specific tests - genotype, viral load, etc - I am just learning all this,what other tests are run? We do not have those results yet. The dr said that if she was genotype 1 then she would do a biopsy. She discussed treatment and said that she was pretty sure that my daughter could wait. She is 18 and going to start her 1st year of college and does not want to go through treatment yet.  I assume we will know a lot more later.

I don't have my appointment with the specialist until July 28th but my primary dr ran the tests for genotype and viral load and I dont know what else so that I could be prepared when I go for my appointment. I have to travel outside the country on a business trip before this and of course am worried. But before I knew I wouldnt be worried at all. I feel OK, have migraines, arthritic symptoms and beginning to get hot flashes, but now I am imagining things.

[cuteus]

You are not imagining things, arthritis is what led me to the rheumy who diagnosed HCV. life little surprises.  A PCR test quantitative is what is needed to determine the presence of the viral load. You might get the lesser of evils with a genotype two.

[wheatgrass]

For a lot of people, I think, the first couple months after diagnosis are the most stressful. With time, comes knowledge, and this helps a lot in putting things in perspective and getting a more pragmatic and less spun up state of mind. Me and my wife freaked out when we found out I had it. Fortunately that didn't last.

It's hard to know for sure, but I think I've had HepC all or most of my life. My only risk factor is that my Mom had HepC. I was 44 before I was even diagnosed as having it and had only the earliest stages of liver damage. Given your daughter's age, I would guess there's a real good chance she can wait until one of the many new (and better) treatments under development become available. The most important thing she can do now is live healthy, especially no alcohol.

I wish you both the best.

[cuteus]

here is some good threads to read, scroll down to:
What Questions to Ask - sunshine143: 06/29/2005
HCV resources? - wantalivlong: 06/23/2005
To treat or not to treat - wantalivlong: 06/20/2005

these threads migh give you an overview on some of the forum members stats and reasons for the decissions they have made.
stay as calm as possible.

[scruffy]

First and foremost you are not going to die soon. It's a shock to learn you have hcv(usually) but it wears off and you will see it more clearly as time goes on.The viral load too high to measure just sounds like they used too sensitive of a test and viral load does not necessarily indicate liver damage. Read all you can here to pick up info and realize that many of us have had this disease for 30 plus years and have experienced few symptoms.Take it slow and calm-you will be here to see your children grow and have children of their own. frank

[cuteus]

whoa! slow down those thoughts! easy to say from someone who had them only two years ago, I know. I even was ready to breakup with my boyfriend and write my last will. My older daughter would care for her sister and all that jazz. Believe me, the more you read online the worse you feel, until you come to a forum with real people with real stories and you start learning and relating. It is not a death sentence unless you get a biopsy result and liver profile that says it is on its way out, and even that does not mean immediate death.  I gather your daughter had a viral load(VL) and it is positive? BTW, viral load does not correlate to liver damage in the studies you will read. Low VL does not mean no damage and high VL does not mean increased damage. so relax on that one. after you get a genotyping and a biopsy with the complete facts of your infection, you can then decide your next step. It is the waiting that kills your emotional stability. you want to know everyhting yesterday.
I was a 1a and decided to treat, 6 months later it has not come back. There is hope. Stick around this forum for comfort and knowledge.

[friole]

Don't beat yourself up.  Like the previous posts say, it isn't a death sentence.  I too am new to this, diagnosed for sure in June (knew I had hep c antibodies years ago but ignored it) and just today found out it is 1a.  I think for those of us who feel like we did it to ourselves (from our "wild years") the guilt can be overwhelming.  Just keep in mind that was a long time ago and your life is not now what it was back then.  Heavens! You are going to have a college student daughter soon! That says a lot about your positive environment.

I have found to Janis7hepc websight http://janis7hepc.com/index.htm               to be an invaluable source of information on hepatitis c.  I study it often.  The good members on this forum also provide many many links to great info on the web.

I think Wheatgrass is right about those first few months - my anxiety level has never been this high before. I am hoping it does level out with time and knowledge. Bet luck and keep us posted