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Author Topic: Please share your hep story  (Read 5084 times)

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Offline lporterrn

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  • Posts: 1,984
  • LucindaPorterRN
    • LucindaPorterRN
Please share your hep story
« on: August 08, 2014, 02:53:44 pm »
Telling our ‪#‎HepStories‬ is a radical act. It is a slap in stigma's face. Here is a new one: http://www.hepmag.com/articles/sara_schwager_2846_25835.shtml

Hope to read yours - it is easy and fun: http://www.hepmag.com/hep_stories_submission.shtml
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 yag1064

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  • Posts: 58
  • Enjoy the life you have.
Re: Please share your hep story
« Reply #1 on: August 12, 2014, 07:08:32 pm »
Hello everyone,
    Today is  a RED Letterday. I had my appointment with my GI. We discussed my final blood work after completing the 12wk treatment program. My virus is undetectable to the test. That's good. But I still need 2 more tests undetectable results, 6 months and a year from now to have the words "Cured of Hep C" put on my chart. I'm still have to clear the medicine out of my body before everything will reset. I'm feeling stronger everyday. Three weeks and counting since I stopped the medicine.
     Looking back I find that I have grown personally from that first day that I told I tested positive for HEP C. My world was pulled out from under me. Mentally, I was a wreak. I was assured that there was treatment for it so don't give up. But I was getting overwhelmed by my fear. I tried to stay positive because I still had the treatment to complete. I wanted to have the best chance that the treatment will be successful.
   So I started treatment in 2007 the was a shot and pills. I was told that I would feel like I had the flu and feel fatigued. I there were 48wk of treatment. Oh and by the way it had a 48% success rate. So here I went telling myself that each day was helping to get rid of the virus. Each day my feeling worsened.  I was taken to the hospital because I passed out while shopping. That was around week 10. Then one day my medicine provider called me and asked me if I was off the medicine because he received notice to stop sending the medicine. This caught me off guard. I call my GI and he told me that he took me off the medicine because I was a "Non-Responder". After that the great crash happened. I retired from my job and moved by to my hometown. I was really depressed and was put into the hospital for three wk. I needed the rest. When I was ready to leave my attending doctor said that I needed to be medicated in order to live my life outside. I was of a different opinion. Luckily for me my wife agreed with me and demanded that I be released.
   The fury in my mind subsided. But now what. I had this thing that was damaging my liver and there was nothing I could do about it. I remembered that I changed my view of living without the virus to living with the virus. My health improved. I started meditation to reduce my stress.I was getting use to this. I looked into following an Eastern philosophy of Buddhism because of the teaching of impermanence. That's how I balanced the years from 2007 to 2014. There were some new treatments that came along but each was more poison then cure and I passed.
   In Dec 2013 my walking buddy showed me an article about the new drugs for Hep C that improved the cure rate from 48% to 88% with no worst side effects then the old plan but was only 12wk in length instead of 48. I called my GI to find out more about this, but he didn't know about it. I sent him the article.
  I March 2014 my GI called me to tell me the treatment was FDA approved. Come in and let's get things started. I came in and started the paper work. I was told that the new treatment was $84,000. $1,000 per pill.I asked my GI if he thought my insurance would approve that. He assured me I was more expensive to not treat me. So everything was on the way up.
   Then 2wks later I receive a letter from my insurance company informing me of their denial for their reasons. Again I got a hard taste of reality. My GI said there was another treatment plan with two pills. He will summit that one to the insurance company. Two weeks later another denial. Each came with an appeal. Which was my right. But I thought there was no way in hell I am going to change their decision. I sent it in anyway.
    I receive a call asking if I could be available by phone to answer any question the reviewing doctors wanted to ask me. I said yes..duh. She said they would call this day at 2:00pm. Well that day came. So I was expecting a call at two. I got a call at 11:00am stating that there was a decision made.I natural thought it was against me. But she said that they ruled in my favor. So what a drastic change.
   I started my treatment on May 2, 2014. Each week I felt worst and there was 10 more to follow. My first blood work showed that the virus was undetectable. So this is what I focused on. My lawn got tall and things slipped a little. But it was all for a good cause.
    Well now that is all behind me now. I am cured and don't have an invader damaging my liver. Now I turn a page. The discipline that I have developed will serve me well in my new future. I can open my heart to others. Something I felt impossible before. I wish that all have the same result in your own way.
    So that's been my journey for the pasted 7 years. I point forward ever onward.

   PS my GI said I could have a beer!

Blessing all  Fare Well...
 
Tested positive 2007
Non respond-er to treatment 16wk of 48wk
Started I/R/Sol May 2014
Hep C returned as of Jan 2015
Started Harvoni Sep 16, 2015
1st Test V/L:20
2nd Test V/L: undetectable
Dec 2015 EOT V/L undetectable
12 wk SVR :undetectable  Mar 25,2016
24 wk SVR: undetectable  Jun 24,2016
52 wk SVR undetectable   Dec 16,2016   -- I,m past it!!!
Shambhala

Offline lporterrn

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  • Posts: 1,984
  • LucindaPorterRN
    • LucindaPorterRN
Re: Please share your hep story
« Reply #2 on: August 13, 2014, 10:38:11 am »
Hi Yag1064 - Congratulations. Would you be up for posting your story on http://www.hepmag.com/hep_stories_submission.shtml?
I hope so! (I also hope that beer is only an occasional one - you worked hard to get your prize)
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 yag1064

  • Member
  • Posts: 58
  • Enjoy the life you have.
Re: Please share your hep story
« Reply #3 on: August 13, 2014, 12:14:09 pm »
Hi Iporterrn,
   
 Sure I will do that.

  And Yes the prize to too wonderful to squander.

Best Wishes,

  yag1064
Tested positive 2007
Non respond-er to treatment 16wk of 48wk
Started I/R/Sol May 2014
Hep C returned as of Jan 2015
Started Harvoni Sep 16, 2015
1st Test V/L:20
2nd Test V/L: undetectable
Dec 2015 EOT V/L undetectable
12 wk SVR :undetectable  Mar 25,2016
24 wk SVR: undetectable  Jun 24,2016
52 wk SVR undetectable   Dec 16,2016   -- I,m past it!!!
Shambhala

 


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