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1713248 tn?1308655353

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Hi Everyone:

First time on forum. Diagnosed with HepC over five years ago. Quite a shock...had no idea about the disease. Come to find out that my wild teenage years have come back to haunt me. I chose to forget about those days...seems like I was a different person then. I'm 52 currently.

The worst shocker was that my son had it. The only thing I can determine is that he contracted the disease at birth. I had a difficult delivery. I found out later that women with Hep C should have a "C" section, less likely for you to pass the disease to your baby.

My son has long gone through treatment and is cured...I cannot be more grateful. My faith carried me through it...I prayed a lot and truly believed that God had a hand in healing him. He's fine now...

Of particular interest is that his viral load was very low. Mine is high.

I have not gone through treatment because I have somewhat of a public, demanding job. It's hard to take time off and I wasn't up to a year long treatment.

The nurse practitioner that treated and helped my son knows a great deal. She worked for one of the foremost docs in the field.

I do want to share that recently, researchers have found that people with a particular gene (IL28B) have responded better to clearing the virus. This is fairly new information. She tested me for it and fortunately I do have the gene. I expect my son has it too. Maybe that is why he responded so well.

My son did well on the treatment. Lost a lot of weight and he was already thin. But he gained it back and more. He looks good now.

I am going to see a nurse Friday and thinking seriously about starting the treatment with the new drug recently approved by Vertex - if all goes well and I respond in 4 weeks, I may have to be on the treatment only 24 weeks vs. 48. That is a major part of why I am seeking treatment now. My fibrosis is minimal and my labs are good...always have been. About a year ago, this certain doc who is well respected said that women sometimes can have the virus for years and suffer no adverse affects. He told me then to wait for better treatment that would be forthcoming. They were conducting trials with the new drug at the time.

I do have to say though that I have always had low energy, love naps, have brain fog when I'm tired. Never knew why until I was diagnosed.

Still worried about the treatment due to my demanding job. But my family is pressing me to do the treatment so I can be healed and move on with my life. Also the side effects with the new drug are difficult for some patients. But heck, I have over 2,000 hours in sick leave and have good insurance...very fortunate...but I worked for it!

I just wanted to share my experience with others. I know its important to do that. When others share, it helps me.

I'll keep readers posted on whether I proceed. It's just a matter of time for me. I'll do the treatment now or wait until the fall when some of my major events at work are over.

Best to everyone. Keep the faith.

16 Responses
Avatar universal

Hi there...... It sounds like you have a good handle on were you are at and  are under the care of a knowledgeable doctorand the options available to you

,So I just wanted to say welcome and to say also  I thought the most uplifting part of your post was when you told us your son treated and cleared.

You asked no questions ...so please keep us posted  and if there are any questions we can help with feel free to fire away :)

Best to you...
Will
1674874 tn?1332717674
HI!
I can tell by your name that you have faith in your heart.
I hope that the info you get from this site can help you with your decision. - It is a very personal one. I relapsed about 5 years ago and I am hoping to start treatment again with Incivek (Telaprivir). Talk about high viral load - mine is 11 million.so I am hoping that the inclusion of this new drug will help me clear for good. I wish you the best....get well!!!! - Regards - Fred
1713248 tn?1308655353
“My grace is sufficient for you, for My strength is made perfect in weakness.”
2 Corinthians 12:9

FYI...that's where my online name came from...couldn't think of a better fit. Thanks to both of you for your kind remarks.

Avatar universal
Wanted to say hi, tried to leave a note on your page but wouldn't post. I am also a newbie I joined in April I think and was diagnosed in March, mine is 1a 13.9 million and all my bloodwork was really good as well except for the ast and alt they were a little high but still under 100. I run a farm and will start treatment end of July and August.
So very glad for your son, that is wonderful and I am sure you will do great too. Lots of people here on the forum in case you have any questions. :)
683664 tn?1330966324
Hello, just wanted to reach out to you.  Thanks for sharing about your situation.  So glad your son is cleared of the virus, that must be a tremendous relief for you!

I am one of the folks who took the Vtx drug in clinical trials so I have some experience with this.  Geno 1b and finished tx in 24 wks, still clear 2 years post.  Glad to be in correspondence with you as you move forward.

Best wishes,
Lapis
Avatar universal
Thanks for sharing your story. At this point I have only tested positive for the antibodies, but with long term elevated liver enzymes. I am also 52 with a past that seems like another life ago...(it was:-) I also have a demanding career that would make it difficult to slow down. Please know that my faith is sound!!

My son will be tested next week and I am praying for a negative result!!! I know it is all in God's hands and I surrender to his will!!!

Thanks again for sharing.  It was the Godly reminder I needed.
1730527 tn?1310691537
thank you for sharing your story with me. I am 24 years old and have recently found out about 3 weeks ago that i have hepatitis c, i have genotype 1a and am 37 weeks pregnant with my son Wyatt. I am very scared, this is my first baby and i want o protect him the best way that i can. the doctor said that i can deliver him naturally and that a c section is not mandatory. i do not know what to do. i am very scared and really want this to be a beautiful experience. i know that there is only a 5% change that i can give it to my son during labor and a 95% that i will not. i keep praying for the 95% chance that he will be fine. however if he does contract it i have hope now from your story that my boy will be okay. can i ask you something? how did your son take it when you had to tell him that he was infected? that is one of the things that is scaring me the most is having to tell my child that he has a disease that i gave him because i was careless when i was younger. (that is if he has it which im hoping he does not. he is due in 19 days). I am learning to accept that I have this disease, i made my bed now i have to lay in it but it not my sons fault. does that make since? anyways thank you for sharing, and sorry if my thought are kind of scattered i start typing and just my thoughts flow.

-Alora
1735424 tn?1357433558
SG. It is true that he who is with Him will never fail. That is exactly why we are all here. I had a colorful youth and life. My mom had Hep before I was born. Do not know how I contracted but does it truly matter at this point?    Thank you for your post. I, too am new to this site. Was diagnosed HCV positive in feb 2011.   geno type
1a viral 20, 000,000+    All bloods abnrml but within limits. High mpv and ferriten. Alt ast high but not crazy. Cholesterol 235. Brain fog lethargy u know the drill.  All compliments of hvc.   Had biopsy. Stage 2 3/4 to stage 3. Had IL28b done. Am cc as well thankfully. Am sched to begin one of the PI's triple tx hopefully by Labor Day. We can go thru this as a family as we do need all the support we can get. I am 49 years old and have never slowed down until the past year. Then the body began acting up. Ta dah!!! Now I know why. Sometimes it takes what it takes so God can place us where He wants us to be as His soldiers of peace. I love you SG and pray for you to keep the faith and courage and to stay the course. Hope to connect again soon. Blessings of live. Your friend in Christ, lifenet62
1735424 tn?1357433558
Dear blessed one. Stay in the moment. Do not fret sweet child of God.  Right now the baby is fine. Do not think of the 5% block it out if your mind   think only of goodness and healing. The mind can take us to dark places  even though we change our behavior our minds still like to go back    Trust all is well now.   It is. You know about the disease. Tbats half the battle. Your cjild will be fine. I may have gotten it from my mom. She's deceased now however I am not angry with myself or her. It is what is is. I love you and will pray for you to have an easy blessed birth.  Keep us posted   Hugs. Lifenet62
1730527 tn?1310691537
Thank you so much for your kind words. its a hard situation. the only thing that i know i can do to not be scared is to educate myself and those that i love about this disease. i feel like i have been tainted and feel dirty. i feel like i wear the scarlet letter and i dont ever want my lil boy to feel like this. im probably just over reacting right now cause i am so close to my due date and want everything to be perfect for my lil one. thank you for your prayers and kind words, they really do help.
~Alorajean
789911 tn?1368636783
sufficentgrace.  Wishing you luck in your upcoming treatment.  good thing your treating in the fall and over the winter.  the heat is hard to deal with on treatment.

  and  aloragene, Im not making light of passing this to your son as   I passed the antibody on to my oldest son.  5% doesnt sound like that much of a risk until you fall into that %.  

I had my son  tested for genotype and VL but it came up neg.  I was suppose to have him retested  6 months later but decided not to because he was only 14.  I will have him retested again when he is 18.  At the time there was no treatment for under 18 years old.   My younger son is neg.  My oldest who has the Antibody was c sect but it was emergency after 19 hours of labor.   my youngest was a scheduled c sect so they broke the water as they took him out.   I have heard that if your vl is low at the time of birth the lower the chances fall.  
What I mean about making light of the situation is that if by chance you did pass HCV on to your child, everything will be ok.  You know and can monitor.  By the time treatment time came around, the new drugs will be so far advanced that it will be a cake walk compared to what we are dealing with now.   And, You can have a c section for even a lesser chance of vertical transmission.  
1713248 tn?1308655353
Thanks to both of u for posting. You both will be in my thoughts & prayers. I have not been on for a bit. Recently took labs and had ultrasound. Labs are normal. Still unsure about treatment right now. Worried about new vertex drug because of the strict demands about taking the drug exactly on time or u can build up resistance to protease inhibitors. I may wait to see what other drugs come through in the next couple years. Tough decision.

Alorajean, my nurse practitioner told me that it is only a 3-5 percent chance that u pass the virus to your child at birth. My son could have gotten over the years if we carelessly shared a toothbrush...it's hard to determine.
My son was 17 when I told him. I was devastated.  . . I did not tell him I contracted the disease as he was a teenager and as a parent, I did not think he needed to know as it may give him ammunition to be careless like I was.

I am a Christian and really cried out to God during this time. I remember during worship one day that God gave me a strong impression that he would completely heal him...and my son was healed. My son handled the treatment very well. I felt so guilty that he had to suffer because of my poor choices before he was born!

All I can offer is that God is faithful and He loves you and your unborn child more than you can imagine. We cannot even humanly understand how much he cares for us. Trust him. He uses the broken things in our lives to draw us closer to him. I remember praying to God during that time that I did not even know how to pray because I was so broken. Tell Him if that is the case with you. He knows your heart...He knows what you need without you even  asking. We serve an awesome, personal God!

Keep in touch...you will be in my prayers. And Lifenet, thank you for your sweet posts!
1730527 tn?1310691537
his3707, my VL is 1.2 million. im guessing that that is pretty high? I go to the specialist on the 26th of this month one week before my son is due. Im wondering now if i should talk to my Dr about scheduling a c-section just to be safer about it. i want to do what ever is in my power to make sure that my son is safe. this is one of the hardest things that i have ever had to deal with and i think it's harder even cause im pregnant and my emotions run real high. i dont know what to do, what are your opinions on this? should i schedule a c-section?

SufficientGrace, my Dr said the same thing about it being a 3-5% chance of passing the infection to my son. i dont know what i should do. im probably just freaking myself out more than is needed but its just not my life anymore its about Wyatt and what is best for him. I used to be very close to God and prayed all the time but have been very distant for about a year or so. probably since i was release from prison and ended up relapsing on drugs. My son is my God sent to help me get sober and know that there is a better life out there and it is being a mother. i have always wanted to be a mother and now i am about to be. thank you for your prayers and your words, they really help. i have been trying to get as much support from others who are in the same boat as me as i can because i know that if i dont i will be a mess and have the chance of relapsing again after my son is born and i do not want that. i want to always be there for my son and not allow drugs and alcohol be something that is comfortable in his life. anyways im rambling so im gonna go for now. thanks again!!!
1713248 tn?1308655353
Hi Alorajean:

Alorajean, I do not know how to counsel you on the "C" section. Have you seen a hep doctor? I just remember years ago when researching this that I came across  thread about "C" sections. If I were you, I would trust your doctor...not your OBGYN, but a hep doctor as they usually stay abreast of the research.

And regarding your other note, don't despair. Everyone has issues...we are human. God loves you just as you are and is able to do more than you can think or comprehend. His grace really is sufficient:)
317787 tn?1473358451
I had my children while unknowingly having Hep C.  I breast fed both of them for 6 months.  When I found out that I had HCV in 2007 I had both children tested and then were negative for being exposed.  I know how upsetting the diagnosis can be, can not imagine adding to that the idea of being pregnant.  I was a basket case for about 3 to 4 months thinking "how did I get this" what did I do?  It does get better as your brain wraps around the fact that you have HCV.  I may be coming from a different perspective however in comparison to my initial VL of 7M your VL sounds low.  I am sure there are others who have lower and higher VL  More important is the biopsy result as that will tell you what, if any damage has been done.  I assume you will have to wait for that until after the baby is born.  Have you asked your doctor if there is less harm doing the C section?  I would think having it vaginally (if you can) there would be less blood than with a c section however I am no a doctor so I don't know.  From what I have heard it takes longer to recover from the C section
I wish you the very best .
D
317787 tn?1473358451
Hello, so sorry for my ignorance I did not see your post above until just now.  I did not know it was safer to have a c section when one has HCV.
I had my children over 25 years ago and did'n know I was HCV until 2007
Again, I apologize
D
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