Diagnosed with Hep C in 1998
I had an HIV test done in 1998. I assume I had gotten it when I worked in fire and rescue from 1969 to 1979. Back then, we didn’t wear protective gear and I was exposed to a lot of blood.
When I was diagnosed, I worked for the school district. I told them I was HCV positive so they could avoid blood contact in case I was injured. In 2004, I had a liver biopsy and learned that my liver disease was at stage 0-1. My genotype was 1b and my viral load was 200,000.
I retired in 2007, and six months later I was diagnosed with colon cancer. The following year, during a second colon operation, it was good news, bad news again: The good news was they had gotten all the cancer; the bad news was it had spread to my liver. I underwent a six-hour surgery but they couldn’t get it all. In 2009, I had 10 months of chemo, which put the cancer into remission for a while.
When Sovaldi was approved, my GI (gastrointestinal) specialist told me to wait for Harvoni. When it was approved, he said, “We have to get Harvoni to the sickest people with cirrhosis.” After a massive heart attack, colon cancer and liver cancer, I felt ready. I was not satisfied to wait at the back of line, so I kept making my case. My oncologist agreed that I should be treated, so I went back to my GI. He agreed to a full work-up with a FibroScan and said that I’d get Harvoni if I was stage 3-4.
I said that was bull dung. It didn’t make any sense to hope that I’m near end-stage liver disease in order to get treatment. The results showed I was at stage 2, and the liver cancer was back, so, no Harvoni. In August 2015, they ablated (burned) almost the whole bottom of my liver.
After that, my oncologist went to bat for me, and I was approved for treatment in November, or so I thought. Apparently, Harvoni could interact with my heart medicine (digoxin), so now my cardiologist was consulted. He said, “Put him on Harvoni and check his digoxin levels once a week for the eight weeks of treatment to make sure it doesn’t reach toxic levels.”
I finished treatment on January 19. I didn’t have any side effects during the eight weeks I took the medication. My virus at the end of treatment was nondetectable.
For those of you who are experiencing side effects and don’t feel well, think about how the hep C virus feels. Harvoni is killing the hep C, and I already know after pill number 56 that HE WON’T BE BACK. Once I’m cured it will take two to four years for my liver to be like new. Never give up. Fight, fight, fight.
What three adjectives best describe you?
Upbeat, responsible, humble
What is your greatest achievement?
Helping save lives when I was in fire and rescue
What is your greatest regret?
Not going to prom
What keeps you up at night?
If you could change one thing about living with viral hepatitis, what would it be?
The stigma that comes with having HCV
What is the best advice you ever received?
Life is what happens to you while you’re busy making other plans.
What person in the viral hepatitis community do you most admire?
I admire everyone who tells his or her story.
What drives you to do what you do?
The Irish in me
What is your motto?
No retreat, no surrender; never give up and fight, fight, fight.
If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
My daughter’s and grandsons’ pictures
If you could be any animal, what would you be? And why?
A lion, because it represents strength.