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Author Topic: Marysee's story  (Read 31447 times)

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Offline Marysee

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  • Posts: 48
Marysee's story
« on: March 08, 2014, 07:06:04 pm »
Hi everyone, I have been perusing the site for about a week now, and finally have a little time to tell my story. I contracts Hep C a lout 25 years ago. I went through straight Interferon treatment about 20 yrs ago, 3 shots a week. It was pretty brutal but I was younger (35) and better able to handle it. I lasted 6 months before it ruined my thyroid and I subsequently developed Graves' disease, I have had radiation and 3 surgeries on my eyes to correct the graves..I am so thankful that there was something thy could do for it. For the last 20 yrs my dr has just been monitoring my liver functions they always said I could never go on interferon again. Well last yr I got a new dr and he sent me to Uw Madison and they said they thought I could since my thyroid was already burned out and to wait until the first part of this year b/c a new treatment was coming, so 4 weeks ago I started the triple therapy, Pegasys, ribavirin, and Sovaldi treatment. My viral load is +9 million, I have my first blood work this coming Friday. The side effects have been rough but bearable, insomnia, headache, pretty severe back pain, some irritability, it was definitely easier when I was 35...but I am hoping it will be well worth it. Keep me in your prayers and I will do the same for everyone else out here.

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Marysee's story
« Reply #1 on: March 08, 2014, 11:47:01 pm »
Wow - what a powerful story! Sending prayers - let us know more as it unfolds.
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

Offline Marysee

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  • Posts: 48
Re: Marysee's story
« Reply #2 on: March 21, 2014, 06:39:31 pm »
I just heard from my Dr. With my 4 week blood work .... The Hep C virus is undetectable in my blood. My ASTHMA is 62 and my ALT is 83........I am sooo excited! ;D.

Offline Marysee

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  • Posts: 48
Re: Marysee's story
« Reply #3 on: March 21, 2014, 06:40:45 pm »
AST....not Asthma :D

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Marysee's story
« Reply #4 on: March 21, 2014, 07:03:30 pm »
WooHoo!!!!!!!!!!!!!!!!!!!!!!!! Thanks for sharing the good news.
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

Offline codaflip

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  • Posts: 3
  • dddddddddddddddddddddddddddddddddddddddddddddddddd
Re: Marysee's story
« Reply #5 on: April 01, 2014, 02:46:40 pm »
Wow your story is similar to mine I tryed treatment when I was 35 of interfon/reba I was taken off at 6 mo due to no response. Ive just started treatment March 9 Peg/reb/ Sovaldi  this is a miracle Drug My viral load at start was 66775 1 week later it was 600  the next wk it was 15 I have a blood test fri. and believe I will be UD on that one. Keep us post alot of great people out here like us. These drug are wonderful you will be Cured:}
codaflip

Offline jess1323

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  • Posts: 15
Re: Marysee's story
« Reply #6 on: April 01, 2014, 03:14:46 pm »
hi my name is jess iam new to the form and just recently found out i have hep c thank u for sharein your story it sound like u have been throw hell but you sound like a strong person and i will pray for u good luck and stay strong

Offline Marysee

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  • Posts: 48
Re: Marysee's story
« Reply #7 on: April 01, 2014, 03:58:56 pm »
Thank you codaflip, I am finally starting to believe I will be cured too. I am more than half way through now. Took a day off today to celebrate my 32nd wedding anniversary and have been in bed for most of it (and not in a good way..ha ha, my poor husband :). I am hanging in there, good luck with the rest of your treatment.

Offline Marysee

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  • Posts: 48
Re: Marysee's story
« Reply #8 on: April 01, 2014, 04:00:17 pm »
Jess1323, have you been to a specialist? What are they proposing you do?

Offline Mike

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  • Posts: 999
Re: Marysee's story
« Reply #9 on: April 01, 2014, 05:34:48 pm »
Hi Marysee,

Great news to hear you're UD! I'm finishing week 10 and it has gone fast. The side effects suck - but the results are great and I don't have another 36 weeks hanging over my head!

Hopefully when we're done, we'll have SVR which equals cured!

Best wishes, Mike

PS - Congrats on 32 years of marriage!
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline jess1323

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  • Posts: 15
Re: Marysee's story
« Reply #10 on: April 02, 2014, 02:23:04 am »
marysee i have a gi dr appt on april the 11 i am go to tell dr that i want treatment if anyway possible do u have any questions you think i need to ask would like to hear what u think thanks jess

Offline Marysee

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  • Posts: 48
Re: Marysee's story
« Reply #11 on: April 02, 2014, 08:10:21 am »
Jess, I am certainly not an expert, but you need to know what your Genotype is so they know how to treat it. It would also be good to know your Viral load. I would suggest reading through all the hep c info that Lucinda has posted out here on this website. Good luck.

Offline jess1323

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  • Posts: 15
Re: Marysee's story
« Reply #12 on: April 02, 2014, 03:51:10 pm »
thanks i will keep u updated best of luck and prayers

Offline Marysee

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  • Posts: 48
Re: Marysee's story
« Reply #13 on: April 18, 2014, 08:29:12 pm »
Hello all, I had my second interim bloodwork this week...still UNDETECTED, and my WBC and RBC have come up a little,still low but better...only 2 more shots to go! happy Easter to all.

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Marysee's story
« Reply #14 on: April 18, 2014, 11:14:14 pm »
How wonderful!!!!!!!
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

Offline jberlin

  • Global Moderator
  • Member
  • Posts: 322
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: Marysee's story
« Reply #15 on: April 19, 2014, 10:27:52 am »
WHAT LUCINDA SAID! You go girl! Finish line in sight and so is your being cured! Wow, to see your story from the original non pegylated interferon until today gives me goose bumps because of the progress.  Happy Easter and I can't wait for your Aug 1 blood work.  -jack

Offline Marysee

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  • Posts: 48
Re: Marysee's story
« Reply #16 on: May 09, 2014, 10:11:06 am »
Well I am officially done with treatment. I took my last SOV and RIB last night. I am looking forward to getting stronger and feeling good again for sure, and my final bloodwork to still be UD. I am having a second grand baby in a couple weeks...life is good. Throughout my treatment my daughter would say...Mom it just like being pregnant, it's pretty sucky to go through it, but you get a beautiful gift at the end. Hang in there everyone, it's a tough 12 weeks, but so worth. 

Love and Prayers to all.   Mary

Offline jberlin

  • Global Moderator
  • Member
  • Posts: 322
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: Marysee's story
« Reply #17 on: May 09, 2014, 10:30:03 am »
Congrats!  Can't wait for the real good news from you in 3 months!  You will feel better and stronger every day now, and it will seem like a distant bad dream soon enough.  -jack

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Marysee's story
« Reply #18 on: May 09, 2014, 02:01:46 pm »
What a triumph Marysee!
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

Offline Mike

  • Member
  • Posts: 999
Re: Marysee's story
« Reply #19 on: May 09, 2014, 02:44:27 pm »
Good deal, Mary!

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

Offline Mpetrecz

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  • Posts: 50
Re: Marysee's story
« Reply #20 on: May 09, 2014, 06:29:29 pm »
Fantastic Mary!  How wonderful nd a new baby...life is good.....I'm so happy to hear you are finished.....please let me know how you feel in a few months,,,,,,.im hoping everyone gets back full health.

Offline Marysee

  • Member
  • Posts: 48
Re: Marysee's story
« Reply #21 on: June 03, 2014, 08:43:33 pm »
Went to Madison today for my final post treatment visit. The dr., his resident and his nurse all came in to shake my hand. Hep C UnDetected after 12 weeks of treatment!!!
AST-52, ALT-81 ( both just slightly high) we did not talk about this during my appt. mb high due to liver damage? Now just one more blood test to get through at the end of July. Side effects have mostly gone away, except for a very itchy head.

Oh and I had a new grandson born a week ago yesterday Life and God are good! My best wishes to all who are still going through treatment...it is definitely worth the struggle!

Offline Mike

  • Member
  • Posts: 999
Re: Marysee's story
« Reply #22 on: June 03, 2014, 09:57:26 pm »
Congrats, Mary!

One more dragon ready to bite the dust!

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

Offline jberlin

  • Global Moderator
  • Member
  • Posts: 322
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: Marysee's story
« Reply #23 on: June 03, 2014, 10:42:53 pm »
I am so happy for you! Welcome to the cured club!  We are a rapidly growing group thank goodness.  Now, to get on with your life as grandmother! -jack

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Marysee's story
« Reply #24 on: June 03, 2014, 11:23:51 pm »
How wonderful!!!!!! I assume your elevated enzymes will be addressed, but in the interim, enjoy the triumph!
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

Offline Anand

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  • Posts: 34
Re: Marysee's story
« Reply #25 on: June 08, 2014, 06:20:33 pm »
Hi Mary,

Congratulations. Looks like you are joining the "have nots" group.  We the "haves" are vicariously rejoicing eager to join the "have nots".  I like your daughter's analogy of agony and ecstasy of giving birth to the Hepatitis C experience. It is so spot on. Unfortunately we men do not have such an analogy or experience.  That is why some men are cry babies!!. Any how you can enjoy now grandma business unhindered. 

Now a poem that I read some 20plus years back in a magazine in, where else, a doctor's office waiting room.  It is titled "Why worry?"

In life you are either well or sick
If you are well there is nothing to worry
If you are sick you worry that you will either live or die
If you live there is nothing to worry
If you die you worry that you will go either to heaven or hell
If you go to heaven there is nothing to worry
If you go to hell you will be busy shaking hands with all your friends and relatives
      there is no time to worry!!  Anand

Offline Marysee

  • Member
  • Posts: 48
Re: Marysee's story
« Reply #26 on: June 08, 2014, 09:32:12 pm »
Anand, I love that poem, and you are right I can now enjoy my life without this disease hanging over it. Thank you so much for the kind words, I am sending prayers love and light your way.

Mary

Offline Marysee

  • Member
  • Posts: 48
Re: Marysee's story
« Reply #27 on: August 03, 2014, 05:08:49 pm »
Hi everyone, I finally got my 12 weeks post treatment results back on Friday...and guess what, I AM CURED!!  ;D:),   :-* I never thought I would be able to say that.

Hep C virus NoT Detected!!!

I am going to go live my life now. Best wishes to everyone who has gone through this, or is still going through it, and thank you for all the support, I learned more from all of you than I did from any Dr. I have ever been to.

                                                                           XOXOXO

Offline Mike

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  • Posts: 999
Re: Marysee's story
« Reply #28 on: August 03, 2014, 06:05:54 pm »
Congratulations Mary!!!!!!!!

I'm so happy for you! It's been a long road - but you finished the trip.

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

Offline Marysee

  • Member
  • Posts: 48
Re: Marysee's story
« Reply #29 on: August 03, 2014, 10:21:47 pm »
Thank you Mike .... I have no words to describe the happiness I am feeling. I am sure you can identify with that.  Thank you for being there for me.   :)

 


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