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Author Topic: Any youngins out there who contracted HCV at birth?  (Read 8123 times)

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Offline Mwmorris10

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  • Posts: 8
Any youngins out there who contracted HCV at birth?
« on: June 28, 2016, 02:09:07 am »
Okay... I'm 25 years old, so I'm not exactly a youngin anymore. Hahaha. However, based on my story my doctor was convinced that I contracted the disease from my mother at birth.

If I have been living with this monster for the entirety of my life, I wonder how it has affected me through the many developmental stages of life? How did it affect me when I was developing in my mother's womb? When I think back on my early childhood, it seems like I faced more challenges than a lot of the other kids.

I've been riddled with anxiety and depression for as long as I can remember. I've always had issues with fatigue. I struggled quite a bit in school.  It was always difficult to focus in class. It felt like my brain was always in a fog. I could go on and on, but I'll spare you all. Lol.

Now, It's impossible to say whether or not these issues were a direct result of the disease.  But I gotta believe the disease had something to do with it.

Is there anyone out there who has walked a path similar to mine? I'm curious to hear your story

Thanks.


Offline NYCHEPCMAN

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  • Posts: 63
Re: Any youngins out there who contracted HCV at birth?
« Reply #1 on: June 28, 2016, 11:14:21 am »
I am 20 years older than you but believe I have had Hep c since birth. I felt generally fine until about 15 years ago when my concentration has suffered and began getting anxiety which isn't like me. I would be at various settings and had trouble paying attention to speakers, people's names, some headaches and a general fogginess and afib. 

I went to viekira pack for 84 days and stopped treatment 2 months ago. So far I am happy to report that much of that is gone.   
GT 1b
VL 1,237,287
Diagnosed November 2015
alt 66 ast 35
F2 fibrosure
2/3/16 Started 12 weeks Viekira
Week 4: Hep C virus by PCR   <1.18 NOT detected, <15 not detected IU/Ml AST 18, ALT  25

Offline Mwmorris10

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Re: Any youngins out there who contracted HCV at birth?
« Reply #2 on: June 28, 2016, 01:12:59 pm »
Interesting.  I started getting really bad migraines in second grade.  That was when the anxiety and depression got bad too.  The migraines cleared up by the 5th grade but the depression and anxiety remained. Did you suffer from any joint or nerve pain?

Offline sribet4

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  • Posts: 2
Re: Any youngins out there who contracted HCV at birth?
« Reply #3 on: July 25, 2016, 06:04:47 pm »
I transmitted HCV to my son at childbirth 37 years ago....his disease was confirmed at age 16 after many years of intestinal problems & anxiety & depression...he attempted to take his life.3 times in the past 5 years...he tried PegInterferon a few years ago but quit after excessive debilitating side effects after 4 weeks...today he is in his second week on Harvoni & doing well....Ive been clear around a month now & pray for him & all you children that were inadvertent innocents....best luck to you & keep on pushing thru!

Offline Mwmorris10

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  • Posts: 8
Re: Any youngins out there who contracted HCV at birth?
« Reply #4 on: July 27, 2016, 12:44:27 pm »
Sorry to hear about your son's struggles.  I've never attempted suicide, but I thought about it a lot in my teenage years.  I, too, am on my second week of Harvoni.  Isn't that funny?  I started feeling better almost immediately.  It could be placebo, but I'm convinced otherwise.  How is your son feeling?

Offline sribet4

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  • Posts: 2
Re: Any youngins out there who contracted HCV at birth?
« Reply #5 on: July 28, 2016, 08:10:41 pm »
Thank u for your kind words...he's doing OK so far and I hope you will also stay the course & will experience 100% clearance of the demon virus...I also felt better immediately & my Dr said it was not my imagination...just how strong Harvoni is! Stay positive because that's your job right now....keep in touch...God bless you.

Offline Mwmorris10

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  • Posts: 8
Re: Any youngins out there who contracted HCV at birth?
« Reply #6 on: July 29, 2016, 02:40:06 pm »
That's great!  I'm still feeling good as well and am confident the virus will be cleared.  What was your son's viral load at before starting treatment? And what genotype?  I'm 1a and my viral load was at 1.8 million.  I'm confident that number has dropped significantly since.  I'm sure your son's has too!

Offline HazelAustralia

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  • Posts: 178
Re: Any youngins out there who contracted HCV at birth?
« Reply #7 on: August 25, 2016, 05:52:21 am »
Hi Mwmorris,
good to hear some of your story and know that you are responding well to treatment (and that you could access treatment!)
I started treatment before christmas last year and I remember some posts from a father regarding his son who I think was about 12, who he was trying to find out about treatment for. The son couldn't access any of the trials - as far as I remember. There was also a younger sibling who had chosen not to be tested, so there was a fair bit of uncertainty in the family and the father was trying to manage that and I guess deal with his own feelings and fears too.
Did you make your own decision to be tested? How was that for you?
The reason that I was reading that post (apart from the fact that so many posts here are interesting and raise important questions) was because my own son was thinking about getting tested. He did and he was clear, and during that time the younger sibling from the post that I mentioned above was tested too and he was clear - very luckily. There was also another young man who had contracted Hep C at birth who posted on that thread - he had been very careful with his health and had not felt any symptoms til he was in his early 20's - as I remember. Perhaps if you go looking you could find that thread if you are interested. It may have had keywords like child and trials. Good luck!
Female age 53
Australia
Contracted in the 1980's
Genotype 1A
VL 314k

Started treatment with Veikira Pak and Ribaviron on Thursday 17th December 2015
NOT DETECTED, End of Treatment, 16th March 2016

Offline Mwmorris10

  • Member
  • Posts: 8
Re: Any youngins out there who contracted HCV at birth?
« Reply #8 on: August 26, 2016, 08:17:52 pm »
I got tested shortly after my mother was diagnosed.  I'll never forget the phone call I got from the nurse.  It was not a good day.  But on with the good news.  I just got the results back from some blood work I had done on Thursday.  I'm undetected!  I'm roughly 6 weeks into treatment, and my viral load was 1.8 million at the start.  I'm not even suprised, honestly.  Since I popped that first pill, I've felt amazing.  I bet my body was clear of the virus by the 2nd or 3rd week.  Thank god for Harvoni.

Offline Auristi

  • Member
  • Posts: 3
Re: Any youngins out there who contracted HCV at birth?
« Reply #9 on: September 18, 2016, 09:23:35 pm »
Yes! I am turning 30 this year and was given a blood transfusion at 3 days old. We didn't find out what was causing my excessive illnesses until I was 15! I love that this post is available. I always feel like I'm the only one who is this young and has had it their whole life. Everyone always looks at me so sadly and says "but you're so young!"  I just gave birth to my first son October 2015 and thankfully he has come back negative in all his screenings.

I have just completed 6 months on harvoni as of august 2016 and my first blood test came back virus free  :o it's so strange to think I might finally be free of this!

Offline KimInTheForest

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  • Believe in yourself
Re: Any youngins out there who contracted HCV at birth?
« Reply #10 on: September 19, 2016, 03:52:32 pm »
Yes! I am turning 30 this year and was given a blood transfusion at 3 days old. We didn't find out what was causing my excessive illnesses until I was 15! I love that this post is available. I always feel like I'm the only one who is this young and has had it their whole life. Everyone always looks at me so sadly and says "but you're so young!"  I just gave birth to my first son October 2015 and thankfully he has come back negative in all his screenings.

I have just completed 6 months on harvoni as of august 2016 and my first blood test came back virus free  :o it's so strange to think I might finally be free of this!

Welcome Auristi! And congrats on completing your harvoni treatment. :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Any youngins out there who contracted HCV at birth?
« Reply #11 on: September 19, 2016, 07:31:55 pm »
Welcome Mwmorris. You might check out blogger Rick Nash who was infected at birth...https://www.hepmag.com/blogger/rick-nash
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline EagleHepType2

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  • Posts: 4
Re: Any youngins out there who contracted HCV at birth?
« Reply #12 on: September 23, 2016, 04:15:48 pm »
Doctors are pretty sure I was infected from blood transfusion at birth. Born a month premature due to Rh and needed total blood transfusions within 24 hrs of birth. Probably had multiple. And this was in DC in 1983. I was tested for HIV later, but since HCV wasn't known until the 90's the doctors had no way of knowing if I should have been tested.

I just found out by diagnosis last year and since I've never had high risk lifestyle and although I had a roommate who had HCV, the likelihood was that I got it at birth.

My parents aren't infected, no one in my family that I'm aware of, they give blood regularly, but as I'm not a fan of needles and blood drainage I never donated. I would have know sooner if I had.

But, I'm perfectly healthy. No liver damage, even after massive grad school drinking, no symptoms. Doctors wouldn't have even known. They suspect that if I got it at birth and since it is Type 2, that my body learned to live with it and it wouldn't kick in till much older, if at all.

Regardless, the specter is overhead and I'm due to begin treatment in January.
Apr 1983 - Total Transfusion at Birth
Aug 2015 - Random Testing shows HCV
Sep 2015 - Ultrasound shows F1-2 scarring, A0-1 inflammation
Jan 2016 - Genotype 2 confirmed, HVL 5mil
Oct 2016 - Pre-Tx blood work: ALT 55, AST 42, HVL 6mil
Oct 12 2016 - Epclusa begins!
Nov 16 2016 - Tx Day 29 - Undetected! ALT 39, AST 26

Offline MommaT

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  • Posts: 65
  • Tomorrow Is a New Day
Re: Any youngins out there who contracted HCV at birth?
« Reply #13 on: October 07, 2016, 05:13:50 am »
Hello Everyone!

I also contracted this disease when young child from the Jet Gun syringe for Immunizations, Military Father. I remember the line of people and the same syringe being used person after person. It has been banned and the Military continues to deny all responsibility.

Over the years I did have alot of health and mental challenges that make sense now. I have always had stomach problems since childhood-mentally could not focus, had migraines, never tolerated sugar without  constant need of protein, achey joints and well alot of anxiety and depression.

Thank God I gave birth 2 times and the disease was never passed to my children or my husband. I only found out I had Hep C from donating blood after 9/11. I am now 62 and just diagnosed with Cirrhosis Compensated. My labwork was always normal until now, seems the years of disease have caught up with me. I was never a drinker-just occasional. I did take Motrin and Tylenol for aches and pains and my many Migraines.

There are so many ways to get Hep C. The new treatment Commercials do not reflect the realty of the types of people with Hep C. I am afraid we are in an epidemic and the faces are really babies children and people all walks of life. All should be tested! Seems the best way is to donate blood.

The stigma will always keep people in the shadows and that is why it will never be contained. People find out they have it, tell only family, stay in denial and do not get treated. It is a ticking time bomb-I am proof of that. I do like that there are treatments and I see how scared everyone is. I am too but I am fighting this and hope someday it will be eradicated! I hope it can be supported in a positive way like breast cancer.

Good Luck and Don't give up -you are not alone.


62 year old Female
Treatment Naive
Genotype 2b
2001 Dx Donated blood after 9/11
2002 Biopsy F1
2016 Fibroscan 15 F4
Comp Cirrhosis Stage 1
pretreatment VL 1,722.660 mil
platelets 122 low
alpha 2 Macroglobulins 647
Apolipoprotein A-1 214
GGT 67 high
AFP Serum Tumor Marker 11.4
ALT 563 AST 332
2016 Sept 16 Epclusa started
4 wk VL <15 HCV Detecte
ALT 19 AST 18
8 wk VL HCV Undetected!
12/8/16 EOT Yipee!
12 wk VL HCV Undetected
SVR 12
SVR  24  10/5/2018 HCV Undetected   12/10/18 DETECTED????????

Offline Napo

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  • Posts: 11
Re: Any youngins out there who contracted HCV at birth?
« Reply #14 on: November 30, 2016, 12:52:42 pm »
My Dr. believes I got Hep C at birth, I was premature and I got a plasma transfusion at that time there was no tests done to the blood for hep c anti bodies... Im 38 right now and got diagnosed last June.

I am so fortunate in so many ways, I have Insurance (I live in Mexico, and like in almost every other place the treatment is ridiculously expensive) and they approved everything fast track, it took me like 7 days, after the genotype confirmation (1a),  to get the full treatment for the 12 weeks in my hands. The virus has spared me enough for 38 years that although I have fibrosis (and fatty liver) is not Cirrhosis yet so the Dr says that it may be reversible if everything works out fine, since I just got diagnosed this year I got one of the new treatments that are very effective,   I was still scared.... I have a 1 year old and your mind goes everywhere..

My 8 week test tested still positive, low (162) but positive, hopefully I will be fine by the 12 week test.  I complain about the side effects but I shouldn't.

« Last Edit: November 30, 2016, 12:55:30 pm by Napo »

Offline Auristi

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Re: Any youngins out there who contracted HCV at birth?
« Reply #15 on: November 30, 2016, 01:39:28 pm »
Hi Napo,

It's super scary. I have a 14 month old, I did treatment when he was 3 months old. 24 weeks, just had my last blood work to find out if the virus is clear. Will know in a few weeks. Have you had your child tested? It's possible to pass it along at birth. My son has been tested at birth, 3 months and needs again at 18 months.   Not to scare you! But best to check! I wish you the best of luck!

Offline Napo

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Re: Any youngins out there who contracted HCV at birth?
« Reply #16 on: November 30, 2016, 01:49:13 pm »
He is getting tested this month, my wife turned out negative, so we are confident the kid is fine.  We have just been a little afraid because of the insurance of what the test might come out, I know there is a very small chance he has it (like for using nail clippers which once I got diagnosed I made sure all of that stuff is seggregated) but we understand we still have to check him.

Offline Auristi

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  • Posts: 3
Re: Any youngins out there who contracted HCV at birth?
« Reply #17 on: November 30, 2016, 02:02:31 pm »
That's good! If your wife doesn't have it it's likely your son is good as well. My husband gets tested once a year and he's come back clean in the 5 years we've been together :)

It's incredibly scary to think of what could happen in the future. Keep your head up! I just completed my 3rd round of treatment in 10 years and I'm hoping this one was successful, and that I don't have to wonder about seeing my child grow up.

 


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