New Port Richey, Florida
Diagnosed with Hep A in 1978; Hep C in 2007
I am a 53-year-old woman diagnosed with hep C in 2007. I worked in the operating room for 30 years, so more than likely I got this from a needlestick or blood splash, as I have no other risk factors.
I did the initial 48 weeks of PegIntron and ribavirin treatment. It was awful. Being a single working parent with a child at home made it even more difficult. I could barely function. The side effects were debilitating at times. It felt like I had snakes in my belly all the time. I had bleeding gums. I could barely get off the couch. I slept all the time and was dehydrated. It was not a pretty sight. The only good thing to come out of it was losing 40 pounds.
My first viral load test at 12 weeks was undetectable. It looked as though what I was going through might be worth it. After 48 weeks of never missing a dose, I anxiously waited for a post-treatment lab test, only to discover that the virus was back. Now what?
I went to several other doctor-specialists, and none of them had real hope. One said to re-treat for another 48 weeks, another said not to, and yet another one said to do 12 more weeks and just prepare for a liver transplant when the time came.
I relocated to another area since I could not work in the operating room anymore-I was blacklisted in this area. No one would hire me-even though I should be able to work in an operating room if universal precautions are used.
I lost my job of 15 years, my house and my friends because of hep C.
Needless to say, I went to one more specialist in my new town and had a full barrage of tests: CT scan, MRI, ultrasound, countless labs and vials of blood taken, and an EGD (endoscopic procedure looking at upper GI tract) to check for varices (abnormally dilated vessels in the esophageal tract). None of the other doctors had done this-they had only done lab work. Having been in medicine for 30-plus years, I know you cannot diagnose from lab work alone. We are all more than just numbers.
I knew I was in good caring hands. I did have one large esophageal varice and was evaluated for a TIPS procedure to create new blood-vessel connections in my liver. (I delayed having this for seven months until my son turned 18 and graduated high school; then I could say that if this procedure killed me, my job was complete.)
I had great results with the TIPS. I have had no encephalopathy (brain disease or damage) or adverse side effects. I just need to stay on two meds for rest of my life: Xifaxan and lactulose to remove ammonia from my blood stream. I get a CT scan and ultrasound every six months to check the patency (openness) of the stent, and monthly labs.
As of December 2013, the new treatment Sovaldi is out, which my doctor has been telling me to wait for. I was immediately prescribed this medication because my doctor knew I would be compliant. I started the therapy right away after having another CT scan and ultrasound to make sure I could tolerate treatment. I got a green light!
Because I am a genotype 1a, I have to take Pegasys, ribavirin, and Sovaldi. I am also being told it is because I was considered a non-responder to the first round of therapy. I figure I can do 12 weeks standing on my head versus 48 weeks. I have already started taking it and only have nine weeks to go. I have had no adverse reactions; no more fatigue than what usually comes with having hep C.
I get labs every two weeks to check for anemia, ALT levels, etc., but so far, so good! I have every hope in the world that this will be my cure. I believe in divine intervention, and there is a reason I moved to this area and this must be it.
What adjectives best describe you?
Bubbly, compliant, hopeful, strong-willed, a force to be reckoned with, and one of the most positive people (like a cheerleader) you could have in your corner
What is your greatest achievement?
Getting children to adulthood after diagnosis of hep C. Before that, building a house from the ground up, with a pool on the water in Florida. I willed that baby into sheer reality.
What is your greatest regret?
That I did not travel more
What keeps you up at night?
Nothing; I sleep like a baby
If you could change one thing about living with viral hepatitis, what would it be?
Never having gotten it in the first place, but realistically, not dealing with the prejudice and ignorance of it. I lost almost all of my friends. They thought they could not be themselves or drink around me.
What is the best advice you ever received?
When things are darkest is when the light will turn on.
What person in the viral hepatitis community do you most admire?
My new physician, as well as her PA. They have treated me with the utmost respect and nonjudgmental care.
What drives you to do what you do?
The will to see my son graduate college and have grandbabies
What is your motto?
When my ship comes in, I will be at the airport.
If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
My dog! Everything else is material and can be replaced but he loves me and depends on me. I could not let him down.
New Port Richey, Florida