Hep C, inside of me

You really never know.   Know which path has been set out for you.  At least I didn’t and don’t still.

Nearly one year ago, bored, twirling around on a stupid blue doctors stool in a standard claustrophobic examining room, I waited.  Waited, and waited.  How uncommon.

Just a routine follow up and a vaccination shot, long overdue.

Snooping through cupboards, stealing rubber gloves (why must I always do this when I have no need for them) and tongue suppressers, mini kleenex boxes and free condoms, zipped up the purse, and none the wiser.  Until I noticed a camera in the upper right corner hanging from the ceiling.  I promptly returned everything, assuming I would ironically get busted then of course.  Whew, made it, purse zipped up again.

Now I realize doctors have an extremely tough job, and I am the first one to admit I do nothing but complain about them.  I find all there is wrong, or what I think is wrong, with them and not often remember their saving lives.  Oddly, more than just mine.  So, okay, their very busy. Why not change the system, or I will as I twirl on your examining room stool.

And then, door opens,

‘Hello Miss Gray.  Nice to see you again.  Dr Grender will be joining us today, is that okay with you?’ Sure (like it’s really a choice).

‘We need to discuss some things with you as we are afraid we have some bad news. Your blood work had tested positive for Hepatitis C, I had you redo your blood work to confirm this and indeed you do have Hepatitis C. I’m sorry.  Do you know what Hepatitis C is?’

Well, I had no clue except you die from it.  Are they telling me I am going to die?  Okay spin, just spin.

‘Kimberly, It is an infectious disease of the blood and only transmittable through blood.  It is a disease of the liver and while their are good medications it is now considered the HIV of the times now.’

‘We know your extensive drug use via needles, that is most likely where you got it from. When was the last time you used?  How often and when was the last time you shared a needle.  Have you had any sexual contact with someone else with Hepatitis C? Who do you know with hepatitis C?  Have you ever had a blood transfusion I am unaware of?  Your partner must be notified and tested immediately.’

What? When?  No. I don’t share and 2 years, no blood, no using, I don’t share needles and its been over 2 years since I touched one.  You have my blood results, nor do I associate with users as it’s too much of a trigger for me.  Your telling me now that I’ve stopped, been working my way in Recovery from addiction, I end up with Hep C that can’t be explained?  I don’t sleep around and partner is clean.

‘Well Kimberly, Hepatitis C can lye dormant for up to 10 years undetected.’

Great, so no answers and I’m infectious.

‘Kimberly, one last thing, I have to register you with the Federal Government under Infectious and Fatal Diseases because it can be fatal and your at risk of spreading it should your blood touch someone else's. I’m so sorry.’

‘They will be in touch with you.  I’m so sorry.’

That was it? I knew nothing? What was next for me? Was I dyeing? Did I give it to my partner?  Is this my punishment?

I felt infected, dirty and all alone.

Courage to find out

The more I researched the more confused I became - all the same statement, Hep C is 90% transmitted through IV drug use and is infectious through the blood.  It is a liver and blood disease, stemming from the liver. Over and over the same standard answers.  Chronic, treatments, fatal, infectious, contagious, all the same, scary words but nothing that was helping me.

Then in my doctors office I saw a book on her shelf called “Hepatitis C, The First Year.”  I asked my doctor if I could read it and she gave it to me, stating the obvious, she hadn’t had the time to ever read it.

It was written by two women who also became infected and could not find any answers. So they mixed what they could find with what they were going through themselves.  The book is listed number 2 below on the amazon capsule.  These two women are Cara Bruce and Lisa Montanarelli.

These two women saved my life, emotionally.  I have yet to write them but will soon.  To say Thank You.  This book made me feel less alone and in basic terms walked me through what happens, what to do and what to expect.  It still sits on my office desk where I spend most of my time and I refer to it all the time.

It would take another Hub to get into the details of the first year. I can sum it up by telling you you do get worse.  I hate that word. Luckily

I was detected early and the worst symptoms I struggle with today is chronic fatigue, deficiency in protein, swollen ankles, can’t stay warm and no energy whatsoever.

You know what hurts the most is 90% of people I had to tell, wave their hand and tell me that’s nothing, they have great medication these days, you’ll be fine.  Who knows, but inside my fears and expectations of what is to come given how I feel now worsen when they’re not validated.  The medication side effects frighten me the most.