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Sharing My Story/Journey
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Sharing My Story/Journey

This really isn't a question, but I plan to share my experience with this disease.

A short time ago, I decided to get over my fear of needles by donating blood.  A couple of weeks later I get the scariest letter I've ever read, basically telling me I almost certainly have Hep C.  Scary.  My first thought was "yeah right, did they mix up my donation??"  I've never used needle drugs (had a huge needle fear), had three sexual partners, married my grade 11 girlfriend, no tattoos, no even low-risk activities.

Well, it was obviously true after the second test confirmed it.  

So many emotiions.  Denial, fear, accceptance.  At the time, I had a newborn and a wife wondering who she married.  Fear, anger.  Luckliy, they are both negative.

Now what?  

The viral load test.  I have extremely high levels of genome 1, the worst.  I am told to start Interferon/Ribavirin treatment in the new year as to not "ruin your Christmas".  Hmm, scary way to explain a treatment I had no idea about.

Listening to my specialist and reading stuff online, I thought I was going to ahve to be up for teh biggest struggle of my life.  On the positive side, I just injected my third shot of Interferon and as of last Tuesday I have had NO side effects other than being a little thirsty all the time and having a resulting "active" bladder.

It hasn't been all peaches and cream, either.  The night after the first shot, I thought I was going to die.  Fever, chills, aches.  I had the shakes so bad, as  aman, I had to pee sitting down to have a chance of not whizzing all over the floor.   I was about 10 hours in and cycling tylenol and advil every 2 hours.  I was able to get to sleep when the fever halted at 103.7.  I was so dry the next 48 hours despite all the liquids I had been comsuming.  I would drink a litre of water and still be thirsty.

The fourth day was all about the headache/muscle ache.  I slept for 18 hours that day and it was nice as I have a young son, so 7 hours of sleep a night is the norm.  That next day, all I had was really a bad back ache and that thirst.

The next shot, I had a slight fever and a headace that was gone in the morning.

This past week was my first week back to work.  I was able to work at my mentally-draining job without any issue.  

Right now, I get the odd headace, the odd mood swing (anger and even the otehr extreme.  I laughed out loud watching House, and I usually never checkle at teh funniest things), and aI'm a thirsy guy, but 15 days in and I really feel quite lucky.

If you are starting this treatment, my advice is go bananas on the water and take some tylenol a couple hours before your first shot and contimune dosing as much as you feel comfortable with doing that night.

I wish you all luck and will continue to update this thread as my journey continues.   I cannot wait for the results at week 12/48.  I read that's when you find out if you ahve a chance to beat the disease.

            
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6 Comments Post a Comment
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148588_tn?1405690829
Any chance of getting a 4 week PCR? Might be useful in decision making down the line.
Good luck with it.
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Avatar_f_tn
I'll ask my specialist about that.  Thaks for the advice.  I had blood work done the first two Fridays, but I think that was just to monitor platelestts abd red blood cells.  Maybe not, though.  
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751342_tn?1297434382
Thanks for sharing your story. Good thread...and the best of luck to you in a successful treatment.
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Avatar_f_tn
My docs standard of care was to get a PCR at 12 weeks but I requested the 4 week PCR and he agreed.  Getting a 4 weeks is pretty important, especially if you turn up undetectable at 4 weeks...that's a GREAT sign of success.

Keep up the great progress.
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Avatar_f_tn
I'm guessing you're in Ontario or from there.  I am also.  Did your doc talk to you about biopsy before you started treatment?  Did you get one?  Curious as I think in Ontario (and possibly the other provinces) they tend to take the approach of not getting a biopsy if you've decided to go ahead and do treatment anyway.  I can't say as I agree.  I think it helps you make decisions as you go along when you know what stage of liver damage you have.  It keeps everything in context.

My suggestion to you - I would ask for that 4 week PCR, in fact I would insist on it.  It will help you make treatment decisions later on if they are required.  Whether you cleared at 4 weeks or not is a *significant* overall indicator of treatment success.  If your doctor resists you on that, come back here and we'll help you with finding supporting documentation for this.  It's not hard to find and it's overwhelmingly supportive of a 4 week PCR.  

Good luck.

Trish
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Avatar_f_tn
btw .. don't be too surprised if you find yourself getting fatigued in the weeks ahead.  Hemoglobin tends to drop somewhere around the 4 week mark give or take once the ribavirin has had a chance to settle into your body from continuous dosages of it.  Lots of twists and turns in the road ahead potentially.  

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