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

Hepatitis C Treatment Journal- Post 1

Post 1

Personal Experience with HCV Diagnoses

 I contracted HCV the very same way many women contract it... from sharing equipment with a trusted partner.  I naively believed that he would disclose to me (out of respect and care) if he were HIV or HCV positive. Silly me!  He was Hep C positive, he knew it, and he didn't tell me about it.   

What an asshole right?

Yes and No.  If there were not such a severe stigma associated with HCV and hence with disclosing, maybe he wouldn't have been so scared to tell me.  Is fear of stigma and judgment a good enough excuse?  Not in my books, but it happens - a lot.  
He, himself contracted HCV from injecting and sharing needles in prison.  If sterile equipment had been available to him and to others in his shoes maybe there wouldn't have been anything for him to disclose to me in the first place!



We had a friend over one day who disclosed that he had contracted HCV in prison.  My partner blurted out that he also had Hep C, contracted while in prison.  This is how I found out in our 4th year together that he had Hep C, and why I suspected that I likely did too.  I had never shared injection equipment with anyone else at that time and was careful about protection in non-long term relationships.

Diagnoses Confirmed
 
I was diagnosed with HCV about 10-12 years ago.  I have done little else by way of monitoring and/or treating it since then.  I have however recently initiated the process for HCV genotype testing and will be writing about my experiences including the subsequent process of treatment if it is deemed necessary.  I will be participating in a program run by a community health centre in Toronto.  I chose this particular program because it offers a somewhat holistic approach to treatment.  What I mean by "somewhat" holistic is that the treatment is based pretty heavily on the medical model (for obvious reasons, but hardly supportive of holistic healing).  However, it also offers individual and group counselling/support - which makes it slightly more holistic.  

Next Steps
 
My first appointment is later this month.  I have already cancelled once and played phone tag with the program nurse for about a month after that.  Not sure if this was nerves or simply that other thing which causes me to cancel appointments and avoid people...depression.  In either case, I'm committed to attending the next appointment.

Hepititis C Testing and Treatment - Post 2

Post 2 
(if this journal post on Hep C treatment was of interest to you, try post 1 and my most recent - post 3 from last week)

March 2012 – sometime in about the 3^rd week of the month.

So what else is new?  

I have difficulty with structured appointment times (not to mention, structure in general) and managed to miss my first screening appointment for HCV (hepatitis C) genotype testing Tuesday morning by 20 minutes.  Not bad really, but apparently nurse “M” disagreed and had left for lunch.  Reception invited me to come back at 1 o’clock when M was set to return.  I stayed and I waited.  At 1:00, they informed M was to be 20 minutes late returning from lunch!  Payback?  Probably not, but maybe....  In any case I had another appointment and needed to leave.  But knowing myself and knowing that there was no way I would return any day in the near future, and being increasingly aware that I’ve already waited about 10 years too long to look into my possible need for HCV treatment, I asked about any openings later in the day and lucked out with a 3 o’clock opening.

So finally at 3:00 pm and after some struggle, and wondering why the hell I didn’t schedule this appointment for late afternoon in the first place (especially considering my hatred for morning), I met with M, the community health Nurse.  Very sweet, considerate, and informed.

Symptoms: Something to Look Forward to?

Depression, nausea, vomiting – things to expect should Hep C treatment be necessary. 

Weight loss - the one side effect which comes as a bonus for my trouble and which I’m actually looking forward to.  Given that depression has been a constant companion since Sept 2000 when my children were kidnapped by the state, a constant companion which never departed (surprisingly) when I won the fight to bring my kids back home in 2007.  

Steps to Treatment: Genotype Testing
 

Side effects of this 12 year depression?   Loss of:  joy and motivation – Gain: pounds of fat.  So yes I’m looking forward to depression which culminates in weight loss instead of weight gain for a change.

The first step (recent step) in this particular little HCV exploration party was to see my family physician who took blood and confirmed only that I had been exposed to HCV at some point.  Facts I’ve long been aware of (13 years).   Blood taken today will confirm which genotype I have and whether its a type known to respond to the standard treatment, the “cure” for HCV infection; Interferon, a form of chemotherapy . Yeah!!!

About a week to go before the results come in and I know for sure if chemo will be in my immediate future.....fingers crossed for weight loss!