Thousand Oaks, California
Diagnosed with Hep C in 2010
I became infected with hepatitis C after using dirty needles when I was in my late 20s. I am now 60 years old. I had the dragon for over 30 years, and didn’t know until about 10 years before I was treated.
I was diagnosed in late 2010. I began treatment with the triple cocktail of Incivek, peginterferon and ribavirin. Treatment lasted only five weeks. It felt like a nasty poison and I nearly checked out. I had two trips to the hospital for blood transfusions, and could not walk or stand on my own. I had severe anemia and critically low potassium. I lost 50 pounds in five weeks. I was at stage 3 to stage 4 fibrosis. My viral load at that time was 31.5 million. My ALT was 102; AST was 60.
I decided to wait until a more tolerable treatment came on the market. Eventually, the FDA approved Sovaldi. I was very hesitant to start the new regimen because of the brutal side effects of my first try.
However, I did finally decide to treat, and began on August 8, 2014. Three weeks after beginning Sovaldi and ribavirin, my viral load was undetectable. I was on a 24-week treatment, and was officially cured in April 2015! This treatment was much more doable than the first one. I had some side effects, including riba rage (the term patients use to describe ribavirin-associated volatility). This was dealt with by adjusting the ribavirin dose. I had some breathing issues and was very tired all the time, but managed to stay on treatment for the full 24 weeks.
I haven’t felt this good in over 30 years. I have a functioning liver that will be at its max in a year or two, and I am very grateful that I was able to treat at the time I did.
Unfortunately, I have just found out that the Patient Assistance Programs and Gilead’s MySupportPath have tightened their restrictions, making the new hepatitis C drugs harder to get. Gilead is negotiating with the insurance companies to step up include the new drugs on their formularies. If this doesn’t happen, it is going to leave the poor and uninsured without access to treatment.
I wish a speedy cure to all of the recently diagnosed folks and those who are currently treating. It is time to serve the dragon its eviction notice. Here’s to awareness!
What three adjectives best describe you?
Survivor, self-advocate and CURED
What is your greatest achievement?
Being a single parent and bringing up my daughter; being a phone counselor on Help4Hep
What is your greatest regret?
What keeps you up at night?
How I can help end hep C on this big blue planet
If you could change one thing about living with viral hepatitis, what would it be?
To be more educated about the virus
What is the best advice you ever received?
To keep fighting through treatment and never give up!
What person in the viral hepatitis community do you most admire?
One of my close friends on MedHelp
What drives you to do what you do?
My heart and the drive to increase awareness that HCV can be cured
What is your motto?
The journey of a thousand miles starts with the first step.
If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
My nine parrots
If you could be any animal, what would you be? And why?
A bird because they are survivors like me