My life after relapse

[ArthursMom]

Helllloooo fellow and former heppers!   I haven't checked in here for several months, so thought I'd post an update.
First I'd like to congratulate all the SVRs!    It's so great to see so many!  I WILL join you one day!
Just to recap, I was diagnosed fall of 2007. Biopsy showed grade and stage to be zero.  I decided I didn't want to wait to treat. I wanted to  preserve my 0/0 status. My docs are great and gave me all the info they could regarding treatment the the possible side effect.  They even held classes to discuss the sides.  It was explained to me that if I have a condition, known or not yet known, that the tx drugs could bring it out or make it worse.  Also, they said that regardless of tx, having HCV can make one more prone to some condidtions. I decided to go ahead with tx.  I treated from May 2008 til Aug 2009, then relapsed.  Tx was difficult.  The most difficult side was the extreme fatigue.  That seems to make everything else seem worse.  I had some rashes that were very difficult, but, I was able to get relief w/a prescription creme.  I was on Procrit for most of the tx.
After my relapse I decided to try to get in good shape for my next try.  I've been exercising 3x per week since the beginning of Jan. I was advised that exercise is the best way to chase away the brain fog. Also, the fat is turning to muscle and I'm losing weight!   And my energy level is so much better.  I actually want and am able to DO things!  Also, my docs recommended milk thistle, which I'm taking.  My vitamin D level was found to be extremely low and I've been on 50,000 IUs per week since Dec.  My glucose was at the high end of normal. The weight lose seems to have brought that down. My post tx issues, (itchy redness around my eyes, numbness in thigh and brain fog) seem to have subsided.
Even though I relapsed, I feel better than I have in many years. I really didn't know how bad I felt before.  It seems strange to me that I could "fail" tx, but still feel so much better.  I'm so glad I took the chance and treated.  And now I can look forward to the new PIs and whip this thing once and for all.
I hope my experience can show those that are afraid to treat, that treatment,even treating and relapsing, isn't necessarily  a waste of time. Educate yourselves, make use of the tremendous knowlege on this forum and, if possible, find a doctor who you can relate to. It seems to make a world of difference.
Thank you, all you "old timers" for all the encouragement and support and knowlege you all so consistently offer.  Thank you all.

[nygirl7]

What on earth could be bad about anything chocolate - dang - it sounds like the last thing I need to put in my coffee which is already loaded with half n half! ;)

[ArthursMom]

Oh boy!  I just knew that coffee and chocolate were good for me and now I have reinforcement!!!  Just ordered some CocoPure (w/ a free turbo shaker!)  Low calorie, also!

Thanks for all of your kind comments.

Since I did respond to tx (2 log drop at 4 weeks and und between wk 12-16) I'm very, very hopeful the the next go round will do it.  

Susan, I am aware that you've treated 10 times.  I so admire that kind of determination.

[susan400]

Thanks, Trin.  I'm drinking some this A.M. in my coffee.  I hate it when I run out!  It's not cheap, but so addicting!   I hope we don't get into any trouble....     I just want to make it clear to anybody that may be reading..., we are not selling this stuff and Trin and I are making no monetary gain from telling you about it!  Just in case anybody asks!  I only found out about it because my brother-in-law told me about it a couple of years ago when he realized how bad addicted I was to chocolate!  Susan400

[Trinity4]

Here is website that gives more detailed facts about CocoPure.

http://cocopuretea.com/

This is the website I used to make the purchase. There may be other websites that offer a cheaper price.  Just be careful it's the real deal.

http://www.newvitality.com/shop/coco-pure.aspx

Trin

[jdwithhcv]

Please pass along the CocoPure info.  Good antioxident info is always welcome!

jd

[Trinity4]

I'm waiting for the PI's to hit the market too.  I haven't had any post treatment side effects and did 72 wks of tx.  My energy level is very good, I sleep well and platelets and bilirubin are better than ever.  My AST and ALT are totally normal post six months and were never this good before or during treatment so that goes to show even though I relapsed my liver definitely benefited from treatment.  I don't take any supplements but my friend above Susan400 turned me on to CocoPure which is full of antioxidant protection against free radical damage.  It is a powdered chocolate delight that I add of my coffee and I am hopelessly addicted so that may very well be helping my liver.

Hang in there all you non responders and relapsers, our day will come when we can put our red shoes on and shout SVR to the world.

Trinity

[susan400]

I am a non-responder/partial responder myself.  Never got to zero, but I have certainly tried to get there!  Currently, I'm doing the exercise thing myself.  It has helped my LFT's to remain stable below 100, my glucose to be manageable-it's just a hair over the cutoff, but my A1C has always been excellent.  I can't take milk thistle as it totally aggravates my allergies and makes me wheeze.  I do take omega 3 fatty acids though (fish oil basically) and I believe that they've helped me as well.  In case you are not aware of my history, I've treated 10 times.  Susan400

[nygirl7]

Hi ArthursMom I remember you!  :)

You have the biggest heart and most geniune of spirit - I know with these things and your incredible attitude you WILL beat this stupid disease.

[newleaf09]

Thank you so much for getting back in touch; we've all thought of you.  Thanks also for showing that a positive attitude can re-emerge after some time passes.  Pulling for you.
newleaf

[Mollyrae]

I tto want to wish you luck the next time around. I have been through the gauntlet of TX'ing Twice and both times I never fully got to zero. I am called a partial responder which in reality is a non-responder.

The course of treatment makes me too sick...ending up in the hospital three times with the last go around. So, tx'ing isn't for me until a new drug is found that doesn't include interferon. What a shame.

Hopefully you will win the battle.

Warmest regards,
Mollyrae

[GSDgirl]

What a great story!!  Good luck with your next go-round.

Denise