NOhep Supporter Spotlight: Karen Hoyt

Karen Hoyt is a NOhep supporter, former hepatitis C patient and the recipient of a liver transplant. Karen has long been a pillar of her community in Tulsa, Oklahoma, where she was a volunteer, schoolteacher and Sunday school teacher before her diagnosis with hepatitis C in 2010 and subsequent liver failure. The damage to her liver was so bad that, at one point, she was advised to make end-of-life plans with her daughter.

On April 13 2015, Karen received a transplant and was granted a second lease of life; it is fair to say that Karen has seized that opportunity and takes each day with grace, humility and gratitude. For example, Karen still teaches students, volunteers at the school at which she previously taught for many years and also in hospital with recent transplant recipients. Karen also dedicates some of her time to teaching nutrition classes and also participated in the 2016 Transplant Games of America, driven each day to honour the young man who donated a liver to her.

Below is Karen’s account of the patient experience:

“For most of us, when our pants get a little tight, it’s not life threatening. In 2010, not only were my pants tight, but my feet started swelling. Within 24 hours, I was hospitalized and diagnosed with end stage liver disease.

I had no idea what hepatitis was. A bomb had gone off in my life and information was scarce. While being drained, biopsied, and pumped with blood transfusions, I took notes – lots of notes, and vowed that no one else going through a hepatitis diagnosis would feel as confused and lonely as I was that day.

After surviving 43 weeks of treatment with protease inhibitors, interferon, and ribavirin, I started putting those notes into a website. The Best Friends Guide, or went live on November 12, 2012 and soon, hundreds of readers began to log on and connect. We weren’t alone any longer!

With hepatic encephalopathy, some of my early stories contained misspelled words and grammar errors. Yet nobody cared! Many of my readers had brain fog, and they were like me; they wanted to hear a real life story of surviving the side effects and symptoms of hepatitis. After getting emails and comments in many languages, I added a translator so that anyone in the world could search for help. I included healthy recipes, help with side effects, and heartfelt personal encouragement. I also offered encouragement with stories about overcoming stigma, advice for caregivers and the truth about how diagnosis with hepatitis had affected our personal lives. We came together on social media and the website, because those of us who live with hepatitis symptoms need support while getting our medical treatment.

Many hepatitis C advocates reached out, and helped me find my place. I was kind of a one-woman show. I even took to YouTube and began to showcase every tip that might help someone who was as anxious as I was. My readers gave shout outs for me to keep on, in spite of any fear. They cheered wildly from the sidelines, even when times got hard. That community of hepatitis C leaders and patients formed a tight knit group that endures to this day.

By the time my doctors found a tumour, I felt comfortable with my hepatitis family. I chronicled my journey of being diagnosed with hepatocellular carcinoma. While being listed for a transplant and treating the tumors, we all stood together. Some of my friends have slipped into eternity. Others suffered alongside me. Even now, through every stage of life, we stand together as best friends in the battle against ignorance, fear and stigma.”