Living with Hemophilia, HIV and Hepatitis C
I was born a hemophiliac in 1979, and roughly around 1982-1983 was administered a contaminated batch of the hemophilia medicine factor VIII. For those unfamiliar with the blood disease, hemophilia is a hereditary disorder passed down from mother to son. It’s more dominant in males, but in very rare cases, females have been reported to have the bleeding disorder as well. Treating the disease requires intravenous (in the vein) injections to stop swelling in the joints and muscles. In essence, what was to help make me feel better, in fact, changed the course of my life forever. [See image: “Original Cutter Mailer from 1983 sent to parents and physicians concerning the batches of contaminated blood products with HIV and Hepatitis C.”]
I went virtually asymptomatic for decades, and in 2006 decided to treat my Hepatitis C for the first time, since I was healthy and active. Doctors at the University of Kentucky determined my genotype to be 3a, and that I had minimal to mild liver damage up to that point. In March 2006, I began a 24 week treatment of PEG-interferon and Ribavirin. The side effects sent shock waves of agony throughout my entire body, and I didn’t even go undetected until week 18 of 24. Sadly, shortly after completion of my toxic therapy, I relapsed just 3 weeks later. I was completely and utterly devastated. My lab work had shown the virus was back, and with a vengeance; soaring from my normal pre-treatment viral load of 112,000 copies, to over 2 million in just 4 weeks of post treatment.
I spent the next 8 years literally hoping, praying and watching the Internet for the latest and newest drug therapies. My viral load slowly climbed to a staggering 4.8 million copies per mL of blood by 2013. Ultrasounds and CT scans indicated I had deteriorated from very mild liver damage to more Stage 2 or 3 fibrosis. It was time to start praying for the miracle, now more than ever before.
In December 2013, the prayer had been answered, not just for myself but the entire “Dragon Slayer” community of those living with and affected by Hepatitis C. Sovaldi was approved by the FDA, and would forever change the face of the industry and drug therapies as we know it. It was also approved for those patients co-infected with HIV and HCV, which was particularly good news for me. I followed up with my infectious disease doctor here in Orlando and on December 27th, 2013 I had an appointment to be evaluated for treatment. I passed all criteria with flying colors and by January 21st, 2014 I was taking my first dose of Sovaldi and Ribavirin.
Within four weeks, the virus was completely obliterated. I was not only astonished to find out I was rapidly responding to treatment, but on my way to being cured in the process. This lab sheet shows my viral load before treatment, and at 6 months post treatment, which is when the physicians deem one to be “resolved” of hepatitis c. I had some minor side effects from indigestion, an eye infection and some upper chest congestion, but nothing major like neutropenia back in 2006. Seeing the results in black and white sent a storm of emotions over me, and I remember just weeping in the doctor’s office at the news of being cured once and for all of this horrid liver disease. I was fortunate, I was lucky and more importantly, I was cured once and for all of my own sleeping dragon. [See image: “From over 4 million to undetected in 4 weeks, my labs show proof that Sovaldi works.”]
Today, and every day since my cure I pause daily to evaluate and reflect on God more. I am truly humbled by the events of the past 30 years of my life. Never again will I lie sleepless in my bed pondering my own fate. No more weeping in the pillow of my own mortality, and the fate of my beloved wife. To never again fathom the thought of liver transplant, end stage liver disease, cirrhosis or liver cancer is for the lack of better terms, new.
My blood disease may have defined the entire course of my life, but it doesn’t define me as a person today. I don’t have to search the world hundreds of times over for mysterious signs and wonders of miracles… the fact is, I already am one. I say that with boldness and confidence, not with pride. I’ve endured my fair share of suffering from living with hemophilia, HIV & Hepatitis C, to know that miracles do happen today, because I’m living proof. I count my blessings daily, and live to serve as an advocate for those who have no voice. I make it my personal objective to educate, facilitate and rehabilitate the stigmas surrounding HIV, Hepatits C and Hemophilia, in hopes of shedding light on my medical past, and be that candidate of hope for others. God is so good, all the time! [See image: “Joe with his infectious disease doctor who prescribed Sovaldi, Dr. Kathy Smith.”]