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Post Info TOPIC: My Hep C Journey


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RE: My Hep C Journey
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Good luck to you Nicole, the journey does not stop when you finish treatment as you know and although I went UND at week 2 and finished in November still UND I am still experiencing some of the sx that you do.  I have to try not to get mad when people say 'you look ok' or assume as you are back at work everything is now hunky dory - even my partner who should know better said I should try to go for a run (with a HG level of 8).  But keep on, it can only get better.

Nirmalee



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Hi Nicole,

I remember your name libgirl07  from years ago as well, I didn't know your story. You are top of that Warrior list on one of the last few threads. Thank you for posting your story it is very inspirational, You have the whole world in front you Good luck

BillS



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Bills

Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.



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brought back memories for me also your story is an inspiration as many of us went through that triple or it went through our lives but in the end all turns out the way it is suppose to congratulations on your success and courage



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Geno type 1  rib and peg September 2012 , 5 weeks tripple and viral down to < 15 und april Aug 25 finished stay at peg 3 rib and eprex + blood transfussion finished treatment Aug 25 2013



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Thanks for sharing Nicole and congrats on continuing to be UND!!!



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Me: 62 yr. old female, GT 1b, fibroscan 4.5; VL 650,975 as of 2/4/14;started Harvoni 3/6/15; SVR


Hubby: 59 yrs.; GT1b; fibroscan 25-cirrhotic; S/O for 12 weeks started tx 3/20/14; SVR56; fibroscan done 7-7-15 = 8.5



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You`ve been on such a difficult and emotional path to reach this point, Nicole, and my heart goes out to you.  I`m so very happy that your story has a happy ending, at last! 

I remember when you first joined this forum (can you believe it was 3 years ago?!) and I`m very glad we`ve been able to give you some support and help over that time.  Thanks for sharing your story, it can`t have been easy to write but I can imagine it was very therapeutic to look back and take stock of how far you`ve come. 

You`ve been an inspiration to us here the way you`ve stuck it out and never gave up hope of freeing yourself from the virus and now you can leave it behind you and get on with living your life.

Big congrats to you, and I wish you all the good health and happiness that you so rightly deserve!!   

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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So glad you stuck it out... u are free!!! that is the main goal. I had to quit teling ppl that I had it, it was like I so contagious.. hahaha, shame on them... But happy happy to u !!!!

peace out

Taz



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TazKat Genotype 1A null responder x 3 riba & iterferon twice, relapsed from Incivek 2012 with only 12 weeks left to do. stage 4 mild cirrhosis 4/25/2014/ started sovaldi riba & interferon.. finished treatment 7/17/14  results 7/25  cleared..

 

 

Tig


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Thanks for sharing part of your journey Sal. 35K miles driving around at night? Wow! I hope it was when gas was less. We're all thankful that these newest protocols have been developed. It's a new day and hopeful beginning for all affected by HCV. There are so many stories out there and it's good to both share and hear all aspects of them. I have to believe that the end of the Dragon is near...

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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I did the whole interferon thing and believe me I know exactly what you are talking about. For me its was total insanity rashes over most of my body  , deep depression , no sleep .Doctors advised me to stop but I refused to stop treatment  I would drive around all night every night I put 35,000 miles on my car in 8 months .It took me a long time to come back from that treatment including  therapy and a whole lot more .The worst part is it worked but came back soon after I completed it. Harvoni was like going on vacation compared to that . So there is great hope now for many people all over te world to take Hep C down for good



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Nicole...I applaud you!!!



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Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!



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libgirl07 wrote:

YOUR LIFE IS WORTH THE EFFORT...                

 

Hi Nicole, 

I hope everyone on this forum gets to read your story. There are many things to learn from your journey, perhaps the most important is not giving up regardless of adversity. But the six words above that I quoted from your post is what this forum is all about.

Thank you for sharing, Nicole. Mallani is right, get out and enjoy life. Good luck!

john

 



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Geno 1b, compensated cirrhotic, 54 yo, prior null responder. Pre tx VL approx 595,000, tx with Sovaldi/Olysio (no Riba) started 1/8/14. VL 40 @ 2 weeks, UND @ 4 weeks. Still UND @ EOT + 1 year.

Gator Man SVR12, Dragon 0, Final Score.



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Hi Nicole,

That really is nice that you shared with us. I am sorry you had to go through all that it seems like you are pretty young still, so there will be much time for you to enjoy your life being hep c free. I do understand how you felt when you were waiting for your 24 week test. I just got the results back for my 12 week test undetected! Hoping for continued SVR for us all. Best wishes with your new healthful life...Blessings Sunrise

 



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Hi Nicole,

Thaks for sharing your moving story.

Now get out and enjoy life- you deserve it. CHEERS



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm



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Thanks for sharing. I can't pretend to know how you feel, but can relate to a bit of it in my own life. Glad you are in a good place now. 

Stormy



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There was so much more detail but I didn't want to make it any longer haha. Thanks everyone

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Genotype 1a

1/18/13 -  VL 1.5mil triple therapy with boceprevir

2/3/14 - relapsed. 1.7ml

 

6/28/14 - started solvadi interferon and ribavirin for 12 weeks

7/28/14 - week 4 undetected dosage reduction of rib and peg

 

11/2/14 und 4 weeks post eot

 

g

 



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Nicole,

Wow, you are definitely a survivor. Of many things.

I'm so glad you shared your story and that it has a happy ending which will get happier as time goes by. Each day you will feel better and get stronger and then you can really live your life to the fullest.  Good luck and stay in touch.

Jim



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jim

GT1a, St2 Lv2 last biopsy 2002, VL  11.4m,  start triple tx 9/30/11

VL 470 @4wks.....VL 22,000 @8wks  stopped tx

Round 2-  Started 3/16/12   PSI-7977, BMS-790052, Riba Undetectable day 14

Did 24 weeks Still UND 12 weeks post tx, SVR24!!!!!!! 2/14/13

 

 

 

 

 

Tig


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Hi Nicole,

Thank you for sharing your story. My goodness, you went through hell to get to this happy place in your life. I'm sorry you had to go through all of that to finally achieve the success you have found. It's amazing how brutal and uncaring people can be. That's also what attracted me to this forum and all of the caring people. The stigma doesn't exist here and that alone was an infusion of hope when it was hard to find. Your story is one of struggle, hope and inspiration. It will definitely be of comfort to those coming after you that have experienced hardships along the way. I'm happy for you and wish you all the best, along with the joy that was taken from you by so many. From the sounds of it, I believe you're well on your way to finding it! Good luck Nicole, you deserve it!

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Hey guys.. I'm just going to write this with hopes it helps someone else along their journey and also have some closure with my own.    Here's my story.    I was 18 years old when I found out I had hep c.  I went for some routine lab work and found my liver enzymes were high and they tested me for hep c.  It was positive.   The doctor treated me like **** about it.  I remember I had my belly button pierced and he blamed that.  I never used drugs, no blood infusions.  I remember being scared to death.  My first love whom I was dating at the time left me soon after that.  (I know I was only 18 lol but it was that first love high school sweet heart puppy love thing) I saw the GI doctor when I was in 12th grade.  He asked me what drugs I did.. When I said none he said no really what drugs do you do?   I got my first biopsy while I was in high school.  I also started treatment when I was in 12th grade.  I remember being extremely tired and depressed.  My GI doctor didnt tell me about the depression that happens with interferon.  I finished high school somehow.  I slept through it pretty much.  I told people about hep c being naive.   People told everyone.  I started getting treated weird.  People called me a whore and all kinds of other things because of ignorance.  I didnt finish treatment the first time with interferon and ribavirin.  My mothers insurance dropped me when I turned 19.  I also wasnt compliant.  I  cried when she'd have to give me shots which made her feel awful.  She still feels guilty about that.   I was extremely depressed.  I graduated my friends that loved me and accepted my diagnosis went to college my real father who i didnt know wanted to meet me once he was on his death bed and my first love left me and i seriously lacked serotonin.   I started smoking alot of pot drinking and doing extacy.  I didnt care if I lived or died.   Eventually my mother talked me into trying an antidepressant.   I started effexor.    I became numb but not in pain so that was a change for me.  I started dating someone else whom I told about hep c he didnt mind.  we didnt last.  When we broke up he told me I gave it to him which was a lie.  He told me later he made that up to hurt me.  I met my childs father.. Told him.. He was fine with it.  We had a baby.  During my pregnancy I had something called cholestasis of pregnancy.  I felt I knew that had to do with hep c and later on researched showed that is correct.  We had a healthy little boy.  I then had another biopsy  everything was fine.  I thought i couldnt afford tx so I waited.  I also feared my ex wouldnt be very supportive at all during the treatment.  He was not empathetic at all. I left his father because he was an angry non supportive drunk and i didnt want to be in that situation anymore. I was so naive before him.   I left and was on my own and too afraid to tell anyone about the Hep c.  I felt very alone and like people would not want anything to do with me if they knew (which i know is absolutely dramatic and ridic now.)  My ex told me he hoped I died from it.  I decided I need to do something about this.  I need to stop just drinking and avoiding the problem and do something about it.   I started boceprevir interferon and rib. As a single mother of a 5 year old working full time 12 hour shifts.  I got financial assistance.  I finally stopped making excuses and put forth effort to do something about my life.  I didnt have to pay anything it was free.  I became so anemic.  I work in a hospital and didnt want anyone to know.  I came close to transfusion a few times but kept pushing through.  I later relapsed....  That was a moment in life i will never ever forget.  I remember the sound of my doctors voice on my voicemail.   I knew it was back...  I accepted it and kept moving.   I had to take iron to fix my anemia and was positive about the new drugs i was following along the pipeline.    I started solvadi rib and interferon.     My white blood cells dropped so much in the first month my doctor wanted me to stop.. We decided to lower rib and lower interferon.   I ended up with mrsa.  I got more labs   even worse anemia and wbcs.  She wanted me to stop interfon.  I told her ok but kept taking my shots haha.  I know i should have listened but I knew id be ok.   I called her and asked if I could start neupogen thanks to you guys on this forum.  She said yes and got it ordered.  It is what helped me through.  I worked 2 jobs  one at a hospital doing 12 hr shifts one at a nursing home.  I struggled with learning a new job.  So foggy so tired.   I finally ended treatment stopped the other job gave myself time to heal.    I felt great 4 weeks post 12 weeks post.. I was UND during both of those labs..  Then suddenly when my 24 week was coming up I kept feeling liver pain again and started over thinking and feeling as tho it was back.  Started googling and thought I had terrys nails liver roll everything lol.   I got my results today.  Still negative...   THIRD TIME WAS A CHARM and the mind is such a scary powerful thing.  You can seriously convince yourself of anything. I hate the hospital setting. I see how people treat people with Hep c and HIV   it doesnt even matter how anyone got it.  No one deserves it.       So    in conclusion of this long ass run on sentence.      I thank this forum... for helping me during my times of over thinking.   For telling me to ask my doctor for neupogen....  For being my support during this time of my life when no one else would every understand what I was going through...... I also want to encourage other people     it is very scary and you read alot of bad **** online about the treatment... you can do it.  you just have to push yourself.   If you want it bad enough you will be able to find a way to pay for it or get assistance or whatever.. YOUR LIFE IS WORTH THE EFFORT...                 I cant wait for this to be a thing of the past and we can all move on..... LOVE AND LIGHT TO ALL



-- Edited by libgirl07 on Thursday 26th of March 2015 11:25:23 PM

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Genotype 1a

1/18/13 -  VL 1.5mil triple therapy with boceprevir

2/3/14 - relapsed. 1.7ml

 

6/28/14 - started solvadi interferon and ribavirin for 12 weeks

7/28/14 - week 4 undetected dosage reduction of rib and peg

 

11/2/14 und 4 weeks post eot

 

g

 

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