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Author Topic: Looking for People Who Want to Make a Difference  (Read 12794 times)

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Offline lporterrn

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  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Looking for People Who Want to Make a Difference
« on: November 10, 2014, 01:53:39 pm »
Telling your Hep Story is a powerful way to make a difference. 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)

Offline zeena

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  • Posts: 114
Re: Looking for People Who Want to Make a Difference
« Reply #1 on: November 10, 2014, 05:56:10 pm »
what do you mean? be more specific please, with what information revealed, at what expense?

Offline Mike

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  • Posts: 999
Re: Looking for People Who Want to Make a Difference
« Reply #2 on: November 10, 2014, 07:56:42 pm »
Telling your story and experience dealing with Hep-C can be of benefit in numerous ways. First, it can help you put your thoughts and feelings together, which can help you better understand who you are as person and how you got there. Second, it can help cleanse the soul of feelings that may have been suppressed for decades.

Most importantly, it can help others understand that they are not alone, that other people have the same feelings, experiences and thoughts and that a Hep-C infection doesn't happen in a vacuum. It helps others validate their feelings about the disease, their thoughts about it and their reaction to it.

We all come different walks of life, different life experiences and unique, individual life courses. We all share one thing: a Hep-C infection.

We don't, however, share the same feelings, thoughts and reaction to Hep-C. That's were one story can be so relevant to one group of individuals; while not for others.

For example, there are cohorts of veterans who acquired Hep-C during combat/Medivac missions in Vietnam. These folks are brothers in arms, and their experiences, feelings and thoughts about a Hep-C infection and how they contracted it, are much, much different than mine (even though we share the same disease).

There are folks who contracted Hep-C and have experienced fast progression to cirrhosis and significantly compromised liver functions. Their story may help others with the same issues.

There are those who contracted Hep-C through illicit drugs use, have many years of sobriety and their story may help the newly diagnosed addict recover from the infection and the addiction.

This is why and how sharing a story can make a difference in others.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline BubbaT

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  • Posts: 267
Re: Looking for People Who Want to Make a Difference
« Reply #3 on: March 08, 2015, 11:55:27 pm »
Mike, is there a blog or section to post our story in?

I think it is very helpful to share our stories, many times the stories shared give hope and courage to those looking for answers to questions they have, and are not sure who or how to ask?

I noticed that many threads are started and folks jump in and share already, is this what you are talking about?

Age 57 male
Infected late 70's
Diagnosed 95
1a, 2 prev biopsy 95, 2004
Ct 2007, 2015
Treatment Naive
F4 A3. Fibrosure/ CT 2-5-15. Ammonia 222
VL 2.2 mil.
Started Harvoni  3-3-15. 12weeks, finished 5-26-15
4 week VL undetected
12 week EOT undetected

Offline morning_glory

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  • Posts: 104
  • This is the first day, of the rest of your life...
Re: Looking for People Who Want to Make a Difference
« Reply #4 on: March 10, 2015, 03:30:37 pm »
@BubbaT - Hope this helps to better understand, we can make a difference.  :)
Telling your Hep Story is a powerful way to make a difference. http://www.hepmag.com/hep_stories.shtml

Link to summit your story:

Likely infected - mid 70's / Diagnosed - mid 90's
Geno type - 1a
AST - 45
ALT - 51
Viral Load - 435,120
Liver Biopsy 6/2004 - F1-2
Fibrosure 5/2011 - F1-2
Fibrosure 2/2014 - F-0
Treatment Naive, prior to Harvoni
Harvoni started on 5/16/15
8-week Treatment Completed (7/10/15)
4-week bloodwork (6/11/15) Undetected, AST 15, ALT 17
8-week bloodwork (7/13/15) Undetected, AST 14, ALT 16


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