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July 14, 2006

May 10, 2008 - 5 comments

The day I started my 48 week odyssey. I remember thinking as I was driving to the clinic for my first shot that it wasn't to late to turn back. But, I made a commitment to myself and I was going to see it through, come hell or high water.
If I had known then what I know now...
I'm a 54 year old male, diagnosed in 2003 with Hepatitis C.  Couple reasons why I waited. I didn't want to give up my beer for one thing. The other reason was that my doctor really wasn't pushing for me to start. He was relatively new to the Hep C thing anyway. I think during the course of my treatment most of my answers that he didn't know were found on this forum. I had a biopsy done that year which showed me being a Genotype 1A with a VL of 470,000. Grade 1, Stage 0.  So, over the course of three years, whenever I would see him, he'd always asked if I was considering the treatment. Finally during the later part of 2005, I started thinking about it. The beer thing was getting out of hand for one thing. I would even think that since the Hep C is going to kill me anyway I'd might as well speed it along.
I was completely and utterly stupid about the disease. I thought it was a death sentence. It took another 7 months to find out otherwise.
My life changed forever on July 14, 2006. For one thing, as soon as that needle went into my side, I knew without a doubt that my drinking was over. The other thing was the optimistic attitude my doctor had about clearing the disease, taking into consideration the low VL and the minimal damage to the liver.
Those 48 weeks of Peginterferon and daily doses of 1200 mg Ribivirin were rough. I won't lie to you. A continuous rollercoaster ride of emotions. The only thing that kept me going was reaching SVR. Week 14 PCR showed less than 50, week 33 showed undetected. But something was bothering me. Reading the post on the forum, it was always week 12 and week 24 were the determining factor. My doctor assured me I was doing fine but something told me otherwise. Week 48 finally came on June 6th, 2007. Still undetected, I restarted my life a different person. A different perspective on life for sure and a whole lot smarter about Hepatitus C.
Almost three months to the day in September I found out I relapsed. You cannot imagine how I felt or what was running through my mind. How could that have happened? I was the perfect candidate, I took my meds on time, every time. It just wasn't fair. My doctor let me down.
February of 2008 my doctor refered me to Duke University Medical Center in Durham NC. There I met Dr. John George Mchutchison. You need to Google his name. He is renouned around the world for his knowledge on Hepatitis C and is involved in numerous clinical studies. How fortunate I was to be refered to him. I walked away that day feeling like a weight was lifted off my shoulders. He wanted me to have another biopsy and see him again on May 7, 2008. I had another biopsy done in March and on May 7th I was sitting across from him with my biopsy report. Now, for those of you thinking about treatment I want you to pay close attention. He said my biopsy still showed minimal scarring, I am Grade 0-1, Stage 0. My blood work was normal. In fact, he said he would have never thought I had Hep C looking at my bloodwork. He said those 48 weeks of treatment probably didn't do anything for me. He said do not, I repeat, DO NOT consider retreatment. He said I will probably die of old age. He also said some of his studies show very promising results and expects to have something out in 3-5 years that will effectively combat the virus. He even alluded to a cure.
So, with all that said, for those of you that are Geno 1A with a low VL and minimal scarring who are considering going through treatment, think long and hard. Was it worth it for me?  I didn't kill the virus but I killed the alcohol beast inside me, and for me that was worth it. My life has changed and I feel good about myself now. Would I do it again? Not if I don't have to and one of the top doctor's on the subject of Hepatitus C said I don't have to.


Comments
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146021 tn?1237208487
by ladybug52, May 11, 2008
So happy to read this!
I was thinking of sending you an e-mail, but this has answered all my questions.
Except for one...
Why didn't you post this on the forum?
I think you should shout this from the rooftop!
Congrats with your new lease on life, and your wonderful experience with the doctor.
Hugs,
Bug

Avatar universal
by child24angel, May 18, 2008
Thank you for sharing your story with us.
It seems time is on your side ..
Good luck my friend
I wish you all the best always
Hugs
Elaine

Avatar universal
by hepcstudy, Nov 25, 2008
Hello,

I am trying to get in touch with people being treated for Hepatitis C for a report that I am writing.

What I would like to explore is their experiences with their condition and the challenges that they currently face. I’d also like to gain some feedback on what they think could be done to make taking their medication easier.

An incentive of $200 would be offered to each participant of a short and anonymous phone interview.

Regards

***@****


Avatar universal
by Tippyclubb, Mar 13, 2009
Very interesting journal story.  I have thought about what would I do if I get UND and then have a break through.  I wanted to be prepared in case it happens.  There is no way in hell I would ever go through this again.  Its a one shot deal for me.  Stage 1 Grade 2 but I am willing to take my chances if I don't clear.   I am 54 and my years are numbered anyway and I much rather have 10 - 15 years of good quality life than spend more years being sick re treating.  Two doctors told me I'd probably die of old age before I'd of Hep C.  Sometimes I wonder why I bothered to treat when I hear that statement.

Too funny.  I prolonged tx also because I didn't want to give up my wine drinking.  Pathetic isn't it?  9 weeks into tx and I don't miss it.  In fact I enjoy being sober at social gatherings because I am more engaged in conversations, and retain everything during the evening.  Its also fun to watch other turn into idiots.  I can't help to think-- did I act like that?  I'm sure I did.  For me that's the silver lining throughout my tx journey.  Learning I don't have to drink to have fun or be social.  Huge lesson, wish I could have learned that years ago.

Take care and hope you get your post tx problems worked out, and find another job.

Avatar universal
by portann, Mar 13, 2009
This has completely caught my attention. I've been trying to wake up my husband to read it to him but he keeps falling asleep.

It's such an important story and speaks right to my own experience -  the circumstances you found yourself in, the choices you made, the experience with your doctors and treatment. And the disappointing aftermath.

I'm in week 41 of 48 and used to be a fairly lucid person. Now I'm wondering if the fog will ever lift.

Hope you keep posting on the board or here in your journal. I'm not an oldie but it must be so nice for you to see many long-time members still helping everyone, as usual.



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