Who will I be without hepatitis C?
After giving blood in 1993, I received a letter from the Red Cross informing me that my blood had tested positive for hepatitis C (HCV) and I could no longer donate. At the time, very little was known about HCV. My primary care doctor told me the best approach was to 'watch and wait'. And, that I did. I’ve been a nurse for over 30 years. Caring for others provided a "shield of immunity" which I magically used to allow me to continue to ignore my own health and bargain with fate that somehow my good deeds would prevent me from getting liver damage. Fear and stigmatization fueled my ignorance. To compound the scenario of caring for others, I found myself desperately trying to save my older brother, Jon, who struggled with addiction his entire life. He also had HCV. His inability to make the changes necessary to lead a life of sobriety began to take their toll. In despair, I watched my strong, handsome, and brilliant older brother slowly deteriorate. His illness only reinforced my incapability of facing my own disease.
In 2008 I had a magnetic resonance imaging study (MRI) which showed early cirrhosis- and with this undeniable evidence, the gravity of my health situation finally sunk in. While I had been rowing everyone else's boat, mine was beginning to sink and I knew I needed to take action. At that time, the only treatment was a year-long Interferon and Ribavirin combination, known to be very difficult and often unsuccessful. 16 weeks into this treatment, my viral load was not dropping as expected, indicating that cure was highly unlikely so my hepatologist recommended that I stop. Several months after I stopped treatment, my brother passed away as a result of liver failure. His death, coupled with the overwhelming disappointment of the unsuccessful attempt at viral eradication devastated me and I could only imagine that I too, would die a slow and languishing death . The HCV virus that lived inside of me was my constant companion- an uninvited guest who relentlessly followed and taunted me, telling me that its job was to destroy my liver. And there was nothing I could do to make it go away. Certain that my life would end prematurely, I became intimately acquainted with grief, fear and depression that impacted every aspect of my life.
In 2013, new medications were made available and with great hope, I was treated with Sovaldi, Ribavirin, and Interferon for 24 weeks. I achieved an undetectable viral load and for the first time, I allowed myself to ponder who I might be without HCV. The notion of cure made me realize how heavily the disease had weighed on my heart and mind. Within a month of stopping the meds the virus returned. I wanted to fall apart, but chose not to. New drugs were in development and I hoped that my liver would remain stable until a new drug came along.
In November of 2015, I once again embarked on a 24 week regimen- this time with Harvoni and Ribavirin. My physician didn't prescribe Interferon and I thought this go round would be much easier than the previous times with Interferon however, the side effects of the Ribavirin caused severe nausea and vomiting, depression, anger, and a sense of great isolation. Regardless, I was committed to staying the course. I completed the treatment in February of 2016 and in May of 2016, my 12 week sustained virological response (SVR) showed that I am CURED of the virus that has haunted me and ravaged my liver for at least a quarter century.
My question has long been, Who will I be without hepatitis C? And now, I aim to find out. This blog will be a chronicle of a solo cross country camping trip. In part, I’m doing this to take some time to absorb this beautiful information. I am also on a mission to dispel the stigma around this disease and raise awareness of the prevalence of the disease, it’s consequences, and the need for all people to be tested. We live in a historical time of hope, just like when smallpox, polio were eradicated.
My dream is to buy an airstream and take it out to the most underserved areas of our country (think Indian reservations, Appalachia, and rural places that have no access to regular healthcare) to educate them, test them, and link them to the care and medications they need. I also hope to educate my peers (nurses, doctors, healthcare providers) about the disease. Even in the healthcare system, there is stigma around HCV. Talking openly about it dispels that stigma and brings light to a situation that requires attention.
It’s time to get serious and have some fun! I leave first thing in the morning on June 6, 2016. As I make my way across our beautiful country I invite you to follow along with me, learn about my adventures, learn about hep C and resources to address it.
See you on the road!!
