Seattle, Washington
Diagnosed with Hep C in 2011
I don’t know how I contracted hep C. I have never had a blood transfusion; I don’t have tattoos; I’ve never been a drug addict. Surprisingly, my wife of 25 years does not have it. I may have gotten hep C while working at a hospital in the 70’s, or from an emergency dental procedure while working in the Yucatán in the 80’s, or some other way.
I first found out that I had hep C when I noticed quite a few bruises from minimal contact after playing in a spring baseball game. I went to the doctor and he sent me to get a basic blood test. I had very low blood platelets and abnormal liver numbers. After several tests, I found out I had hep C, thrombocytopenia (low platelets), cirrhosis of the liver, gallstones, and pancreatic cysts. It didn’t help either that I had already been suffering from psoriasis.
That was in the summer of 2011. I had some hurdles for sure! First, I wanted to treat the hep C. My liver is working and the pancreatic cysts so far are benign. In order to get treatment for hep C, I had to get on the liver transplant list at UWMC in Seattle in case something went wrong during the treatment. This required a battery of more tests. Once I was on the list, I started taking Promacta to raise my platelets, so I could then start interferon, ribavirin, and Incivek.
Within six weeks, the hep C was undetectable. The Incivek part was for 12 weeks and I had the weirdest rash, but I made it through. I was supposed to take the other drugs for a total of one year, but during the tenth month I relapsed and the virus came back. I am now waiting for my insurance company to approve Sovaldi. I had a really bad time with the interferon so the doctor said we won’t do that again. I took a test that showed that I am resistant to protease inhibitors, so Olysio is out of the picture. I am wondering if I should do 24 weeks of Sovaldi and ribavirin or wait until the newly FDA fast-tracked Sovaldi/ledipasvir single pill is approved and comes out later this year. It is supposed to have the best possible results and the shortest treatment.
What three adjectives best describe you?
Positive, friendly, creative
What is your greatest achievement?
Having my family
What is your greatest regret?
Getting hep C
What keeps you up at night?
Wondering if I should hedge my bets and start working on my bucket list
If you could change one thing about living with viral hepatitis, what would it be?
Public stigma
What is the best advice you ever received?
I was advised to go to Virginia Mason Medical Center (VMMC) Hepatology Center and see Dr. Kowdley and Dr. Siddique
What person in the viral hepatitis community do you most admire?
The doctors at VMMC
What drives you to do what you do?
The desire to be loved and appreciated
What is your motto?
Borrowing a line from the Travco company, “It really works.” This motto comes from having a uncanny ability to fix mechanical things with limited resources. I am hoping that this ability will help me navigate and persevere through this physical challenge.
If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
Every living thing
If you could be any animal, what would you be? And why?
I would be a dog. I love dogs. They are the all-knowing sages of the universe.
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