Tuesday, May 15, 2012

Hepatitis C Treatment Journal - Post 3

Post 3 - Hep C Treatment Journal

Middle of May - About Twice as Long a Wait for Test Results as Promised

Four weeks ago I was told that the genotype testing I completed would take a couple weeks for results to return.  I don't know about everyone else but to me "a couple" is two.  If it were going to potentially take longer, why can't people simply say, " a few"?

I had prepared myself to hear news in about 2 weeks time - bad news (that yes, I'm eligible for treatment) or worse news (that I'm not).  Now I wait here in the fourth week chewing my nails relentlessly day after day......after day.  I could, I should just call.  Find out if my results came in and they've just been sitting on them, considering a ransom maybe, or biding their time, waiting for me to relinquish the last shred of sanity I have selfishly been clinging to....
Maybe tomorrow I'll call.

So its now tomorrow and I called about my results for genotype testing.  This is the test that will tell me whether I am one step closer to treatment.  Some genotypes are more treatable than others, or perhaps more accurate is that some types have effective treatments developed and others do not.  In North America and other parts of the privileged world most people who are positive for Hep C have genotype 1, the most researched for treatments.  The type which it turns out that I have.

Also as it turns out my treatment staff have had my results for some undetermined amount of time.  "Did you try calling me?"  Yes of course they had tried "a couple" times!  "Oh I see, a couple....". (that vague term which for some really means indeterminable)   "Well did you leave messages?"  Though I knew damn well they had not, I was told that they had tried and were unable to leave a message for some reason they can't quite remember!   OK......???? and WTF???

My immediate thoughts after making an appointment for the next round of blood work and then hanging up, were;
What a half assed, lax attempt to reach me.  If any attempt was actually made at all.  Typical medical, elitist, classist, discriminatory, mentality - all drug users are hard to reach, unstable, disorganized and probably won't return staff calls anyway, so we'll get to it when and if we get to it - all good.

These were thoughts that crossed my mind immediately.  They may or may not have been accurate analysis of what was going on.

Staff and I made a telephone appointment to discuss my results, an appointment which staff also missed by the way.  Though to their half assed credit they did make efforts after that to contact me by calling until they reached me (for which I am grateful).  Who knows what goes on behind the scenes.  What kind of pressure people are under, what environments they may be working within.  Whatever the case may be at the particular Toronto medical establishment I attend (one that I chose because it offers an entire Hep C treatment and support program) I find their handling of my treatment to this point - lacking.  For some, it could be downright dangerous.

What must it be like for people in less privileged parts of the world?  Where resources, staff, and training are often in short supply.....I guess I should count myself lucky?

About HCV: Government of Canada - Hep C


  1. Hello there, I am so excited I found your site, I really found you by error, while I was researching on google for something else, Anyhow I am here now and would just like to say kudos for a fantastic post and a all round thrilling blog (I also love the theme/design), I don’t have time to go through it all at the moment but I have saved it and also included your RSS feeds

    1. Hi Keratin Treatment

      Wow thanks for the really nice compliments. I think Hep C treatment is frightening for people. Because of this and because Im at a relatively stable place in my life I thought it might be good to give people a real - live view from the perspective of someone actually going through treatment. We often get research, education, and evidence which is great, but its not the same as hearing about reality first hand.