I never knew what a normal life looked like. I spent half of my life in and out of hospitals and Ronald McDonald houses. I was constantly surrounded by terminally ill children of my age, but I never felt sick, or thought I was. My parents told me as a child I was as hemophiliac, which is a blood disease where one cannot clot easily and that I needed to be extra careful of my body. But I was never told my full story, and the pieces of the puzzle never fit together until I turned 18, graduated high school and had the world at my fingertips going into college. It was on a routine doctor’s visit, where the doctor walked in, sat down in front of my parents and said, “What is the worst virus you can get?” Not assuming anything too bad, I answered, “the flu?” He shook his head no, and asked, “...try again, but think worse case.” The only other virus I could think of was AIDS, so that’s what I said. A cold, unnerving hesitation resonated from my parents, and the doctor glanced over at my folks, then back to me and said, “Close, you’ve had HIV since age two. But that’s not all... you also contracted Hepatitis C as well, and neither have a cure.” At that moment, my world, my walls, my life and future came tumbling down in an instant. I felt like Alice in Wonderland, but stuck in the rabbit whole of no end. Suddenly college, marriage, dating and my future were clouded in uncertainty that I would even make it to my twenties. My parents had known the entire time, but never told me about HIV or HEPC. I spent 18 years taking pills, and visiting doctors not really understanding the severity of my own situation.
I never thought I had so much wrong, but looking back, and spending those 18 years in hospitals, hooked up to 12 hour long IV infusions, surrounded by children with cancer and leukemia, it all started to make sense. Not only was I born a hemophiliac, but co-infected with both HIV and HEPC. A couple years later, I realized the severity of my situation when my parents confided in me that they had begun planning my funeral early on. Two young boys made national headlines in the 80’s who were also hemophiliacs that received contaminated blood products, Ricky Ray and Ryan White. Being a child and not understanding the news headlines at the time, it began to sank it that my parents were accepting my fate as a child from the deaths of both Ricky and Ryan before they were 20 years old. I can’t begin to comprehend the burden that was placed on my parents shoulders, that their only child would die from the very life saving medicine used to treat hemophilia; which in fact was a death sentence. The national coverage of these young boys just escalated my parents worse fears. Needles, IV’s, long hospital stays, 36 pills a day up to 3 lab works a week, this become my norm.
Then, it was in 2003, I experienced something that changed my life forever, and gave me hope that God was not done with me. I was scheduled to have all 4 wisdom teeth extracted at the University of Kentucky medical center. All my doctors were on call, ready to be available if something went wrong. I came through the procedure fine, and was discharged the next day to go home. It wasn’t until I got home, the unthinkable happened. Being a hemophiliac, and unable to clot normally, I began hemorrhaging blood out of my mouth in unimaginable volumes. The boxer vein in my jaw had been cut from wisdom teeth surgery and I was bleeding out at an alarming rate. My parents were at church that night, while I was home resting, and by the time they got to me, it was like a scene out of a horror film in the house. The only hospital that could treat me because of my complex condition, was UK and that was 3 hours away from the mountains of Appalachia. But my folks knew they had to try, my life depended on it. I was finally able to get the bleeding controlled by using normal bath tissue, which when wet made a spongy seal over the extracted tooth socket. We made it to UK, bleeding had been somewhat controlled, but the doctors needed to see the area to treat it. When they removed my makeshift dressing, the vein opened up, and bled out again. This time, even the ER at UK couldn’t stop it. I was fading fast from blood loss. Going in and out of consciousness, when the unthinkable happened. My hands and feet got cold, and I began to drift consciously. I passed out from the sheer volume of blood loss, and was literally seconds from coding. But it was in the moment of me passing out, I felt this feeling euphoria, that God was there in the room, and the doctor’s yells for nurses help sounded like a far off distant tunnel many hallways away that echoed. Time stood still, quiet and inviting. The coldness was replaced with warmth, comfort and peace. I was having a near death experience. I don’t remember seeing a bright light, or tunnels, or friends or relatives, but I knew this life changing experience in fact was real. When I awoke in the ER hours later, I explained to my parents what happened and what I saw, we just held hands, prayed and praised God. I knew this was my turning point to use my life for God, and give Him all the glory He deserves for bringing me through incredible life.
With the miracle of HIV anti-viral therapy, my life was prolonged, spared from certain death, and of course God stepped in and protected me on my journey. Some may say I got lucky, and was able to survive as long as I have, but I know beyond any doubt, Jesus Christ was using my life as a vessel for his truth in a world where people need to see walking miracles to encourage their faith. I’ve been on a brand new FDA approved therapy for my liver to combat the Hepatitis C. On February 25th, 2014 God showed up in a miraculous way. The news from my lab work showed the therapy is working, and I’m walking around HEPC free. The sleeping dragon that has been attacking my liver the past 30 years, has been slain, the giant has been conquered and through Christ’s redeeming Grace and Love, I’m walking around HEPC FREE.
Many said I couldn’t get married, I couldn’t work, I couldn’t thrive, my life would be cut short, but Christ had other plans. Over 12,000 Hemophiliacs in the 80’s become contaminated with either HIV, HEPC, or both. Of those 12, 000 less than 2% of us are alive today that survived the pharmaceutical hemophilia holocaust. Ricky and Ryan’s deaths weren’t in vain, advancements in drugs, therapies have changed the fate of many living today with HIV. And now there’s a cure for HEPC. God has taken my life, to use it for His glory. It’s not my testimony, it’s God’s testimony I’m just the vessel. I don’t have to search the world over for signs, wonders or miracles, the fact is, I already am one. I praise Him for my trials, afflictions and sufferings... Without them, I’m just average Joe. My name is Joe Burke, and I’m a changed life!
Learn more about my story on I Strive 2 Thrive.
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