Sandi's Story

Photo of Smilin' Sandi 1993
Diagnosed 1995 at age 39 with HCV
Originally written Copyright, Fall, 1997

Sandi's Tests/Results/Updates Page (1995-2008)

Hi everyone!

My name is Sandi, 52 years old (as of 2008), presently living in Oshawa, Ontario, Canada (Pop. 150,000, 50 km. (30 mi.) east of downtown Toronto).  

The following autobiography was originally written Fall, 1997 when my homepage first went online.  Well, any non-judgmental, good listeners out there, please listen to my story...

Let's get on with the business at hand - this "stealth" disease, known in the hepatitis online community as "the dragon".  The hepatitis C virus is referred to as the "dragon" because of its silent, mysterious nature.  It can be a potentially deadly disease.  It can hide (sleep) for decades without someone knowing they have it.  It is like an internal fire burning, affecting your liver and other body systems and at anytime can cause havoc to one's health.

Sept.21, 1995- I saw my family doctor for a yearly physical. I had been experiencing fatigue, hot flashes, fever and insomnia. I thought I was having early menopausal symptoms. Blood tests' results came back with evidence of Hepatitis A, B and C. My doctor's first remarks were, "I'll have to notify the Public Health Department." He admitted to knowing very little about HCV and he referred me to a liver specialist. I went home in total shock!

In my first year of university (1975), I had contracted Hepatitis. I moved back home, went on a bland diet for a month and got a shot of gamma globulin. A dozen of my friends who lived on my floor in residence also received shots. From 1977-1979, I got involved with the wrong crowd and began to experiment with IV drugs and snorted cocaine. There is more to that part of my life, but it took enough courage just to reveal my past behaviour to my liver specialist. My spouse and my close relatives know of my past.  Shame and guilt has followed me to this inevitable conclusion - no matter how I got Hep C, I'm stuck with this incurable disease.

My first reaction to the news of my diagnosis at age 39 was tears, self-pity, then anger, bitterness and finally reclusion. It was my spouse that reminded me that I had two boys (in 1995 they were 5 and 13) to think about - life wasn't over. So I put aside my negative feelings of fear and regret, and take each day as it comes. 

After hearing on the news about the tainted blood compensation issue in Canada, my oldest son asked me if I had contracted Hep C through bad blood.  I decided just to blurt out the truth of my past drug use.  He was taken by surprise.  But he knows what type of person I am today and still shows me respect.  He feels all HCV sufferers should be treated equally in regards to access to treatment, no matter how the virus was possibly acquired.

Well, I've revealed my soul to all of you - please don't judge me. There is a stigma attached to HCV, especially if you may have contracted the virus from illegal drug use. Public opinion seems to judge you as if it was your own fault you contracted this "dragon", even though for myself, that was over twenty years ago.   I have been "surfin' the Web" for reliable information on HCV since my diagnosis in 1995.

My spouse (together since 1984) tested negative for HCV. However, my Dr. didn't recommend having the kids tested because of the low risk (less than 2%). My sons were breastfed between the first 13-17 mths. of their lives.  I decided on my own to have the boys tested in June, 1997 - they are negative. 
The Reproductive Care of Women Living With Hepatitis C Infection

I was a nutritional consultant for eight years (1981-1989) and I continue a healthy, low fat regime. In 1995, I had been taking a multi-vitamin/minerals with Iron, Vitamin C 500mg, Vitamin E 400 mg, Dong Quai and Milk Thistle. I had stomach problems with the Dong Quai and I discontinued it. I presently take a multi-vitamin WITHOUT Iron. "

I have used milk thistle in the combination form with butternut bark, dandelion root, licorice root and wild yam root.  Standardized milk thistle extract (80% silymarin-250 mg)- my Toronto hepatologist had said if I was going to take the herb, it should come from the European source, since herbs are better regulated there.

* I no longer take milk thistle.  You should inform your doctor(s) before taking any additional nutritional supplements or herbal products. ("Milk thistle ineffective for liver disease"- Dec. 14, 2005)

I have read Naomi Judd's "Love Can Build A Bridge", and books by Dr. Andrew Weil and Deepak Chopra. I take all this info with a grain of salt. I was having problems with intestinal bloating and cramping July, 1997 and therefore, went off all my supplements and examined my diet. I feel better now, and contribute the symptoms to excess drinking of carbonated drinks, decrease in activity level and stress about making a decision to undergo combo treatment.  I have increased my intake of fresh vegetables, fruits and whole grains.

I feel that my increased energy level and overall relative good health can be attributed to diet, rest, moderate exercise, avoidance of stress, a positive demeanour, a sense of humour and a supportive family. 

I count my blessings that my symptoms are controllable and my heart goes out to all of you that have to experience such pain and suffering. It seems to me from my reading, that the USA is more pro-active on HCV than Canada. Maybe because per-capita USA has more HCV sufferers compared to Canada. We don't have a recognizable spokesperson like Naomi Judd.  I'd like to hear from fellow Canadians and their experiences with the medical profession here.  Of course, I'd also enjoy hearing from all fellow heppers worldwide.  I'm a good talker, but also a good listener. 

I regularly update my story in tables at Sandi's Tests/Results/Updates regarding my dr. appts. or any hep C-related issue.

My Advice: 
Be positive and keep busy. Attitude is paramount.
Keep the Faith and keep smilin'.   :) 
Knowledge is power and it will give you the courage to fight this "dragon".
You are not alone!
My Motto:  No matter how we contracted this disease, we are all fighting the same battle. 
Dragon Slayers of the Web Unite!
{xxxxx):::::::::::::::>

More Pages on Sandi's Site

Durham Hepatitis C Support Group
Hepatitis C Counselling Guidelines
"Hepatitis C" Essay by Sandi's son Copyright 2000
Medical Research Page
Memorial Page
Sandi's Proclamation Page for Hepatitis C Awareness
Transplant Page

This personal website is maintained by Smilin' Sandi :)
providing Education, Support and Patient Advocacy worldwide since 1997.
Smilin' Sandi does not endorse and is not responsible for the content of external websites. 
Outside Links will open in a new window.

Email Listowner/ModeratorSmilin' Sandi for a personal invite to join
the Yahoo CANHepC listfor current Hep C info and private online support.

This page was last updated on 06/27/08