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Author Topic: My Story  (Read 6480 times)

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Offline mama-kilo

  • Newbie
  • Posts: 1
My Story
« on: August 20, 2015, 05:52:44 pm »
Diagnosed in 2005 in the UK as Hep B carrier, never been on any treatment as i have always had a low viral load.  Not sure when i got infected but all i can remember is that i had one shot of the hepatitis b vaccine more than year before i was diagnosed. Had one transfusion post cesarean section in 2002. ? source of infection. The good thing is neither my kids nor husband have got. They are all well protected. I have been very open to friends and family but there are some who have used it on me as insults. That does not stop me from talking about my hepatitis B carrier status but has given me the strength to encourage others to know their hepatitis status considering the fact that i was born during the era when syringes and needles were being boiled and reused irrespective of where it came from back in Africa. Some of the post here are really inspiring and gives me hope.  While in the UK, i was given the impression that there are no chances for liver transplantation for Hep B carriers. I was even encouraged not to have anymore children though i never had plans for more. It seems a lot has changed.

Within the last one year, i have had raised liver enzymes and CRP results. My liver enzymes fluctuate.  My weight too is another issue. Had my first fibroscan done today and it was 6.9. I now live in Eastern Canada and i hope one day a solution will come up.

Live has never been the same as i live each day with the fear of not being there for my young kids. I will be seeing my Infectious Disease Dr some time in November and hopefully things will progress from there.

Keep up the great works guys and together we shall all overcome this.

Mama-kilo

Offline ArtVandelay

  • Member
  • Posts: 51
Re: My Story
« Reply #1 on: August 21, 2015, 07:56:26 am »
Mama-kilo,

Thank you for posting! Always good to read another story. The good news for all of us with HBV is that with HCV largely regarded as "solved" a lot of pharmaceutical work is now being done on HBV. This is not to say that there wasn't work being done before - but it is now more widespread and garnering more attention.

There are some great NUCs out there that can really get your viral loads and such way down. (I have been on adefovir and now I am on tenofovir). Both of those meds have very low side effects (if any) and both brought my HBV DNA down to undetectable. They don't do a lot for the surface antigen, though so that's a weakness.

Keep an eye out on companies like Arrowhead Research, Tekmira, Alnylam because they have the potential future functional cures for HBV. I am most encouraged by Arrowhead right now - they are working with

http://www.arrowheadresearch.com/programs/ARC-520

I wish you the best in your journey and hope that this community can help!

Offline Sirius

  • Member
  • Posts: 3
Re: My Story
« Reply #2 on: August 23, 2015, 10:32:08 pm »
What is your diet like?

Offline ArtVandelay

  • Member
  • Posts: 51
Re: My Story
« Reply #3 on: August 24, 2015, 11:51:06 am »
What is your diet like?

*edit* replied to wrong thread! Doh! Had two threads open at once.

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: My Story
« Reply #4 on: August 25, 2015, 07:14:40 pm »
Mama-kilo,
Welcome to the Forums. Thank you for sharing your story. I would love to see this on Hep Stories. It is easy to share as you could copy and paste what you wrote here in to the Hep Story format - then just answer a few questions, and before you know it, you have helped others. We edit it a bit, so it is really easy. Hope you consider it - just go to: http://www.hepmag.com/hep_stories.shtml
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

 


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