Having Children :: HEPC anitbody Positive :: Need more Feedback

[fullofhope]

Hello everyone.  I joined this post about 2 weeks ago when I found out during IVF treatments that I tested positive for the hepc antibody.  I have gone to a specialist who told me that outwardly I am asymptomatic - but my viral load/liver enzyme blood work etc. (done on Monday) and upcoming abdominal Ultrasound will be the deciding factors.

Anyway - I am praying that I have already cleared the virus on my own - and I want to know my options in continuing to pursue IVF.  I need to know if there are any woman out there in my situation contemplating pregnancy or who have made the decision to conceive - I would really like to be able to talk to you about the obvious questions we have ... concerns ... statistics ... I guess I am just trying to make the right decision.

I have a congenital heart defect, and the chances of passing that problem to my children is much higher than passing hepc... but I was willing to take that chance for some reason.  Now - with the news that I am hepc positive - at a 3-5% (or higher depending on which report you read) chance of passing it to my child - I hesitate.  For some reason that 3-5 feels like 50% or higher.  I don't want to make this decision to have children for selfish reasons only to have the child suffer with this his/her whole life.  I also don't want to over exaggerate the risks.  I hope this post will help me and others in my shoes to talk about this concern.  I know compared to TX this might seem trivial - but I believe it is legitimate.  Thanks!

[fullofhope]

Hello Rebecca - sorry I didn't see your post until now.  Thanks for the information and sharing your personal story.  Since I posted that topic, I found out that I had either had hepc in the past and cleared or I am testing false positive.

I am not sure exactly what that means - but I will be going back for checkups every three months just to make sure that I wasn't tested close to infection when viral load is undetecta
ble.

Anyway - we are starting IVF treatment after Oct.  I have a business meeting I have to go to then which will interrupt the IVF process - so we are waiting until after.

Thanks again for your helpful and kind words.  If you want to e-mail - ***@****

Thanks!

[BecL]

Hi-
I'm sure you were in shock, as was I last year when I found out I had HepC while getting ready to start fertility treatments.
I had no idea I had it, nor did I even know what it was!

I did a lot of soul-searching on whether or not to proceed. I finally made my decision after reading an excerpt from a book called "Faith: Trusting your own deepest experience" by Sharon Salzberg.  It's not about religious faith, but the faith in yourself to plow ahead in the face of adversity.  I don't usually go for stuff like that... but it was the right message at the right time, I guess.

I was 38 at the time and knew I did not have time for treatment and then trying to get pregnant (of course it's not impossible, but harder when you are over 40.)  I decided to take the chance and continue with the fertility treatment.  I was lucky and got preg. after my first round of drugs + IUI!  I just gave birth in April to a beautiful boy.

I also looked at all the research I could find, as did my midwife.  The studies are so small and imperfect, I saw transmission rates ranging from 0% to 17%, most saying about 2%-5%.  The only thing I could find info on about increased risk was anything that may cause broken skin in the baby, such as the monitors mentioned above, or forceps or vacuum.  To avoid these, you're better off having a drug-free delivery since drugs can slow labor, thus leading to those interventions.  Yeah, it hurt like heck, but I knew it was for a good cause.  I could not find research that supported a C-section enough for me to decide on that.  I have a pretty low viral load -- not sure if that had anything to do with, but some studies suggest that transmission is linked to higher loads.

I also discussed genetic testing with my doc, who felt that both the CVS and amnio had a small chance of transmission, but that the amnio was probably smaller... so I chose that (although you could forgo both, of course.)

We just had Quin tested for the Hep C last week, and I'm happy to report that he is negative!  I am so relieved.  I have been very lucky this year, given my pregnancy, birth, and now these test results.

I did choose NOT to breastfeed because I could not find any research that made me feel comfortable enough about it.

Please feel free to email me if you like at ***@****.

Good luck to you.  Hang in there... I remember that first couple months of being in shock... at some point you just get used to knowing you have it and you don't think about it all the time.

Rebecca

[fullofhope]

Hello ... Thank you for sharing your e-mail with me.  I would love to talk with you about this.  I will be e-mailing you shortly.

Lisa

[fullofhope]

I agree with you on the Pam Anderson comment...creepy.

[LvdByGod]

i don't know why that is just the plan they came up with. does everyone get the endoscopy right away? i never hear anyone here talk about it. i can't get pregnant before i do this, i think that is the point not whether or not to do the tx first or not. it's just that they want me to do the tx before getting pregnant and doing invitro because i could pass hcv to the baby thru invitro. what stage of liver damage does your husband have may i ask? sandi

[Galen]

I understand where you are coming from, but there is such great stigma attached to having this disease that having someone of Pam Anderson's calibre does more harm than good, in my opinion.  People look at her, how she has lead her life, and that she claims to have gotten HCV from tattoos and figure we are a bunch of crazy living irresponsible people who probably did something to deserve it.  I got stuck by a syringe while working at a hospital when in college and don't care for the comparison to her.  Sorry, but she really is on the bottom of my least favorite celebrity list.  Others who have HCV are Fredy Fender, Larry Hagman, Dusty Hill (of ZZ Top), Jamie Redford (Robert Redford's son).  Personally, I like Naomi Judd and think she has done a wonderful job of putting a human face on this disease.

[imblessed]

I am a little confused as to why they are making you wait to have an endoscopy. My hsband has had at least two with no tx. His varisis viens are very inlarged and could rupture at just vomiting. He has to take phenagren when he feels like he is going to hurl. What does tx. have to do with checking your esophegus? Please let me know so I too can learn.

[LvdByGod]

HI, i also found out i had hepc while getting tested for IVF. i've been to a high risk pregnancy specialist that told me that if they take the egg out of me and then insert the sperm that, that can introduce your blood into the baby. i was shocked. i was also shocked to find out that i needed to have my esophagal varaces checked to make sure the disease hadn't yet gotten to the point of rupturing the esophagus vains. For me i have to go thru the tx first and then get the vains checked and then they will tell me if it is ok for me to be pregnant. They told me that the vain could burst by the pressure of the pregnancy and of cource the labor. i have stage 3-4 fibrosis and acid reflux which is not a good sign. i hope and pray better for you. hopefully you are not so far along yet. also, i found out that my embryos would not be adoptable if something happened to me which was sad for me because i don't believe in leaving the ones unusued frozen. also, the fertility drugs used to help us make extra eggs they would not use on me due to it's bad effect on the liver. i unfortunatly am already 41 and i hope and pray for some good news after tx. but, for now i'm told to wait and see. Be careful of these fertility places. all they want to do is make money. the first fertility place i went to didn't even tell me this stuff. THEY WOULD HAVE STARTED IMMEDIATLY IF MY INSURANCE DIDN'T DROP THEM, FORCEING ME TO SEEK A DIFFERENT DR. fortunatly the second place i went to insisted on the high risk pregnancy specialist. They sat me and my husband down for an hour and explained the risks for both the baby and myself.

If you want we could e-mail each other and talk off board about these things. my address is ***@****

YOUR IN MY PRAYERS, SANDI

[HepCinLA]

I didn't say Pam Anderson was someone to emulate.  What I meant was whether you like her or not she is high profile.  High profile is def. good in terms of brining attention to the disease.  The real question is whether she will step up to the responsiblity of becoming an advocate.