One Year Ago Today, A Reflection of Life

I officially obtained my one year "post liver treatment" lab results early this morning, marking my official one year anniversary of ending treatment on Sovaldi and Ribavirin. I ended treatment on July 7th, 2014. After one year of completing the toxic regimen, the virus remains "Undetected," which means the my Hepatitis C is 100% medically, officially and without question gone for good.

It's a little overwhelming to know that I don't have to face one of my dreaded fears of liver transplant, ESLD (end stage liver disease) or cirrhosis. I always projected my life going downhill in my late 30's based on how many years I actually had Hepatitis C and the estimated pattern of how the virus was attacking my liver, which was pretty regular. But now, God has gave me a new sense of normal, I'm cured. I don't take this cure for granted, and I walk each day with a new fresh perspective, and certainly with a sense of humility for the extended years added.

I remember a deep conversation I had with my wife before we exchanged vows, and in that late night discussion, I told Alexandra some things she should be prepared for concerning my health, age and overall well being. I recall that night being tearful, sorrowful and painful. But true love conquers all barriers that life hurls at us. Thankfully, she stuck with me, and now, the cure has happened. All those dark disturbing things we talked about won't happen the way I envisioned my life to progress. Even though it was my job to inform Alexandra the consequences, she loved me regardless, despite the difficulties and trying times, that's the power of "real love."

Quotes from Joseph Burke

When I first met my wife in 2008, my mind was so fixated on the "what if's" and the "could be's" instead of what God can truly do with a little patience. That was the life lesson I was taught by the Big Man upstairs, patience and forbearance. I treated once in 2006 for 24 weeks on Ribavirin and Interferon injections, to ultimately relapse 3 weeks after treatment ended. I had very little expectation going into this new treatment on Sovaldi, but despite my fears, it worked! No more fixations and daydreaming about my life spiraling out of control as my liver fails. It's pretty overwhelming, even as I write this, as the tears of rejoicing just flow.

I recall my wife telling me often, that she was praying for my cure. She frequently reminded me in church and home that her one main prayer was for the cure to happen. Above all else, she wanted her husband around, and the moment that prayer was answered, and God showed up, was mind blowing.

I'm fortunate, lucky and persevered through the trying times that us hemophiliacs faced in the 1980's and 1990's. It wasn't easy being a bleeder with HIV and Hepatitis C in those days. The stereotypes imprinted from the negative press are still very relevant today, but it's my job through this blog and "I Strive 2 Thrive" to educate the masses, and offer hope to those who suffer with my illnesses. It's enough to have hemophilia alone, but combine HIV, chronic pain and my now my cure of Hepatitis C, I've become empowered to educate those who still have those uneducated beliefs about any of the illnesses I endure daily.

This win may be of science, and the pharmaceutical company Gilead for manufacturing Sovaldi, but the real win here is one for God. He allowed me endure just a little longer, become married, and through that I learned patience and a deeper understanding of who I am, and whose I am. I count my blessings daily, and don't take each breath for granted. This cure has empowered me to help and enrich others lives, and do it with love that only comes from God. Today marks two anniversaries in my life, my parent's 37th wedding anniversary and the one year anniversary of my cure. Funny how God does that right, almost like a wink and pat on the back as I'm reminded how truly awesome He is.

Day 118, HCV Then & Now

It's hard to believe that I'm already one full week into bottle five and month 5 of my liver treatment. I'm so close to the finish line I can just begin to see the lights from the finish line. I'll be completely honest, this treatment has been the best blessing and breath of fresh air I've had in my entire life while taking treatments and therapies. In 2006, as some of you know from my past blogs, I treated with the toxic combination of PEG-Interferon and Ribavirin, and faced a plethora of side effects. I lost close to 10 pounds, had blood in my stool, developed a dry peeling facial irritation, my bones ached and hurt the entire duration of that 6 months, and I was constantly sick. Sadly, I didn't even go undetected until very late in therapy of those 24 weeks, only to suddenly relapse just 3 weeks later. The disappointment, pain, depression and a sense of being defeated clouded my mind for months after that.

First and Foremost I'm not a spokesperson for any drug company, nor endorsed, nor given brownie points for mentioning the names of these drugs. But I'm here to tell you treating on Sovaldi has been an amazing ride. As I approach my final month in a couple weeks, looking back retrospectively, I've concluded that this treatment has truly been a Godsend. I've had very mild side effects like headaches, lethargy and moments of brain fog, but everything is so easily manageable with over the counter medications like Tylenol, Advil or Alieve. I've had no skin irritations, no bloody stools, no weight loss, no hair loss and most importantly, NO INJECTIONS! The tides of change have truly shifted with the introduction of these new radical non-injection drugs to treat our Hepatitis C. I'm a living example of how effective these drugs are. Being a Genotype 3a, coupled with HIV and Hemophilia, the odds have never been in my favor. Geno3's are more common for relapses coupled with increased risk of fatty liver disease. But, as week 4 of treatment with Sovaldi and Ribavirin come to pass, I was officially undetected. What took 4 weeks with this new regimen, took 18 with the old standard of PEG-Interferon and Ribavirin. My cure rate is in the mid 90 percentile range, and for the first time the word cure and Hepatitis C can be boldly uttered in the same breath.

CLOSING ADVICE
As I approach the final month of treatment, I'm surrounded by some amazing friends, an amazing church at Real Life Christian Church here in Central Florida. God, my wife and church have been the foundations for mentally and emotionally dealing with treatment and it's ups and downs. My advice to anyone seeking treatment for their HCV is to make sure they have a well established support system in place. It's good to have a group of people to confide in, to let off some steam and vent to, and to rejoice in your triumphs and give love during your trials. Whatever this system looks like for you, it's a vital part of the psychological portion of treating your HCV. It's no secret these medications bring havoc on the mind, so it's helpful to have those friends to open up with about your treatment, liver disease and allow that avenue to to be open and honest with who you are. I lived 80% of my life in fear, seclusion and in hiding because of living with Hemophilia coupled with co-infection could easily spread fear in small-towns and rural Appalachia back in the 80's and 90's. I don't have to walk in that fear of my diseases, and I am blessed with an amazing group of men and a church that lifts me up, calls and checks on me, and I meet with often times daily. Faith to me is the crucial element to snap me out of my funk, and whip me back to reality and get my mind focused on the race. I'm just stating what is working, has worked and continues to work for me from my own experiences. At the end of my day to day, it's about Jesus Christ, always will be. I know for many, being open about their disease is something they're not ready for or not even an option. I've come to a place of mind lately where I don't care what others think based on my illnesses, and nothing that has happened to me has been by "chance." My strength lies in my testimony of surviving, thriving and striving to keep the fight moving forward no matter the obstacle. If we loose hope and faith, we're already defeated.

"Now if we are children, then we are heirs—heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory. I consider that our present sufferings are not worth comparing with the glory that will be revealed in us." Romans 8:17-18 NIV