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.

A Conversation with A Modern Day Miracle

After several years, I finally get the chance to speak at my church and before my brothers on my testimony and how God has radically changed my life. This 18 minute interview gives an in depth perspective on the life I've lived, and offers a ray of hope for those who struggle with Hemophilia, HIV or Hepatitis C today. This interview marks the 11 month post-treatment point since my Sovaldi and Ribavirin liver therapy from last year. July 7th, 2015 will be one full year since I completed liver treatment, and even though I don't know those results yet, I am confident based on my 6 month undetected status that God's got this once and for all. 
It is my prayer that those who watch this are encouraged, enlightened and filled with hope for their own paths and destinies. God has so richly blessed me to continue doing His good work through my church and community, and this interview is just one small part of that initiative. "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11 (NIV) 
Too Blessed 2 Be Stressed, Joe

A Video Testimony

Joseph is not only a survivor of the horrors during the dark days of the pharmaceutical industry, but a living miracle by medical standards. Born with severe Hemophilia Type A (less than 1% clotting factor in the bloodstream), the very product used to treat the blood disease (Anti-Hemophiliac Factor VIII) to many became a death sentence in the late 80’s and early 90’s. Plasma pools were riddled with live HIV and Hepatitis C strains from skid-row and prison locations. As a result, Joseph became co-infected (both HIV & HCV) around age 3, trailing a life of extended hospital stays, appointments and never-ending infusions sessions. Today, less than 1.8% of the 12,000 hemophiliacs in the United States are alive. Joseph is one of those fortunate warriors to carry the torch and be that voice for those who no are no longer with us. In 2014, Joseph underwent extensive liver treatment on the new drug called Sovaldi, and within four weeks of a six month therapy, his Hepatitis C virus was no more. Today, Joseph shares his life, struggles and realities of living with debilitating complications resulting from hemophilia related injuries, and maintains a healthy lifestyle with a well controlled HIV anti-viral suppression regimen. He is unique, unfiltered and a survivor; and it's for that reason God is using his life in a major way.

Refined By Fire

Sorry I haven't posted in the past month, it's been a roller coaster lately, but in a good way. I had a doctor's appointment two weeks ago on February 24th, and for the first time, my infectious disease doctor Katherine Smith uttered those words I've been longing to hear since I started Sovaldi last year: "You're Cured!"

Living life post-treatment is one thing knowing your labs are looking great, but hearing those goal achieving words uttered for the first time gave me so much confidence going into one year post-treatment. This time last year, I was very ill from side effects of the regimen I was on. I was reflecting on some of my older posts from Easter 2014, and multiple ER visits along with numerous side effects leaves me with only one conclusion; we are "refined by fire." The human spirit is a strong and powerful mechanism.

July 7th of this year, I will officially be one full year post-treatment. A few of my friends, locally and online, have had some serious issues since concluding their Sovaldi regimens, one of which is the dreaded relapse. A friend of mine, younger lady, late 20's from church, treated on Sovaldi and Ribavirin just as I did last year, but relapsed. She, like myself, was a geno-type 3a, I've been offering some moral support and council for her just this past week, and it seems to be effective. Whether I relapse or remain undetected at one year is pretty much a waiting game and in God's hands. I've accepted both outcomes and am ready to tackle whatever it is next I have to do. 

Nothing in life is earned by our own merit. You don't just wake up one day and be automatically cured of a life altering illness. Struggles are a part of life, so are disease and illness. If the human condition is never constantly tested, how are we to be refined and made better? I'm a leader at my church for a weekly event called "Real Men." One of the questions I'm asked most, why do bad things happen to good people? My response is usually simple and forward: "Because they have to." In 1 Peter 1:7, Peter writes, "so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ." 

So when you're in that moment, the world is crashing in, all hope is lost, instead of giving ourselves a pity party, we need to stand up and dust ourselves off and move forward. Life is one continual refining of our condition, to make us stronger and more courageous for the next trial, and the trial after that.

One of my favorite musical writers and performers just this past week announced on social media he has a solid mass in his right kidney, and doctors are 90% sure it's cancer. Mark Hall of Grammy award winning Casting Crowns, made the announcement about his condition. But like the very song Mark penned in 2006 'Praise You In This Storm', "I was sure by now God You would have reached down And wiped our tears away Stepped in and saved the day But once again, I say "Amen", and it's still raining..."

One thing I can say, I am at a truly peaceful moment of life. Rejoicing in my cure and striving towards July for the one year post-treatment lab results. I can't say it's been an easy road, truth is, it's been anything but smooth. The roller coaster of life has peaks, dips, turns, 360's and maybe even a few slow points, but my advice for those reading this, be ready for anything. Life isn't about what we define it to be, it's about giving God glory in season and out. So with each struggle, our life is being refined physically, mentally and spiritually for our betterment. In the heat of the moment, we don't see the lesson, but just know we have to be refined by fire in order to come out shining like gold. 

Today, My Life Changed Forever

It's pretty astonishing to think about it, and I'm still attempting to process the real scope of things surrounding the past year of my life.

On January 21st, 2014 I began a journey that would ultimately change my life forever, I treated my Hepatitis C with a new breakthrough drug called Sovaldi. Rapidly within 4 weeks of therapy, my virus went undetected, indicating that treatment was working and I was on my way to 20 more weeks of medication, lab work, doctor visits and a plethora of side effects. By the end of treatment on July 7th, 2014, I was still undetected and on my way to hopes of a possible cure.

My infectious disease doctor told me treating with Sovaldi and Ribavirin, I stood an astounding 94% chance of being cured even co-infected with HIV.

Having previously treated with much more toxic and brutal drugs in 2006, this new therapy was a breath of fresh air, but also had it's own mess of side effects. But in the end, the side effects weren't severe, and I powered through treatment like a iron arrow going through the heart of a dragon. Not just any dragon, the king of all dragons, Hepatitis.

The results are in today January 12th, 2015, 6 months post treatment, and officially I can say I am cured of Hepatitis C once and for all. My dragon has been slain, and my life is forever changed. I'm still sitting here processing the events of the past 24 hours of my life after getting this spectacular news. Sovaldi truly works, and the words cure and HepC can now be uttered in the same breath with confidence. Click on the graphic to see the lab work for yourself.

As I pause in this time of reflecting, evaluation and focusing on God more, I am truly humbled by the events of the past year 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 fathom again the thought of liver transplant, end stage liver disease, cirrhosis or liver cancer is for the lack of better terms, new.

But, I can't forget to give credit where credit is rightfully due. If it wasn't for my persistent faith in Jesus Christ, my surrounding band of brothers and church family, my amazing wife and the endless sacrifices of my parents, none of this would be possible today. Thanks to my caregiver Dr. Katherine Smith for treating me, and lastly to Michael J. Sofia who developed this new miracle drug called Sovaldi.

My blogs will continue, as this is just the beginning of a new era for myself and I Strive 2 Thrive. I am working on a new video documentary as we speak, and I hope to share it with you hopefully by Spring of this year. Forever grateful, eternally humbled and delightfully changed, thanks to everyone who has been a part of this amazing journey with me the past year.

In His Holy and Blessed Name,
Joe Burke (I Strive 2 Thrive)

7 Weeks Post Treatment

In 2006 I treated my Hepatitis C for the first time with PEG-Interferon and Ribavirin. Through a grueling six months I endured side effects no human should suffer, with a less than satisfying outcome. It took me roughly 16-17 weeks to go undetected on a 24 week therapy that should have been 48 weeks, with only a 34% chance of a cure. In just 3 weeks post treatment, I had relapsed. Emotionally I was drained. Physically I was pushed to my limits.

Fast forwarding 7 years later, and the drug Sovaldi was approved by the FDA in December 2013. By January 21st, 2014 I was on treatment with the new drug, and in just 4 weeks my Hepatitis C was gone! Not only was I a rapid responder to the new drug, but I remained undetected for the duration of my 24 weeks to July 7th.

On August 18th, 2014 I was due for 6 week "post treatment" labs to be drawn. Given my previous history in 2006, I was more than just anxious, I was on edge. The results are to your left (click image). 6 weeks post treatment, and I'm still undetected.

I can't begin to tell you the feeling deep inside. Pure joy, and knowing that God is always in control. It's easy sometimes to loose sight of Him, and it just takes a split second to look down. Not only does this serve as a reminder to me that God is still in control of my life, but He still is in the healing business. Psalm 41:3 says, "The LORD sustains them on their sickbed and restores them from their bed of illness."

Clinically, my status cannot be called a cure until 6 months post treatment, which is January 2015. But, I'm off to one heck of a start, and I know "God's Got This."

On a side note, I had reported a few weeks ago that I was experiencing some digestive issues post treatment, especially with diarrhea. After talking with my doctor, she recommended I try a daily probiotic to balance out my stomach and restore the good bacteria in my digestive system. She explained that Hepatitis C treatment often can kill or damage the good bacteria needed to break down foods.

After just two days in taking this supplement, my diarrhea had resolved, and I was back to some sense of normal again. So if any of my fellow dragon slayers are experiencing digestive issues during or after treatment, I highly recommend starting a daily probiotic. I still have random occurrences, but usually it's based on my diet.

I'm Rebooting

Today, July 28th, is #WorldHepatitisDay, and as we mark today with global awareness, I want to share some pretty awesome news from a visit to my liver doctor today. I had a follow up visit with my Hepatitis C physician Dr. Katherine Smith in Orlando, Florida. It's been over a month since I last seen in her clinic, and this visit was my "post treatment" visit. The virus still remains undetected at the end of therapy, and I will follow up with Dr. Smith on October 20th for my 3 month post treatment visit. Here is a look at my recent lab sheet from the viral analysis.

I told the doctor about a few symptoms I've been having; restlessness, insomnia (mind going a million MPH), and, not to be too informative on this one, but for the sake of the #HCV community I'll list it, diarrhea. She said it was not uncommon for patients who have totally cleared the virus to experience waves of energy, motivation and strive. and the restlessness and energy at night is my body attempting to adjust to a new normal. For so long my body has been used to fatigue, lethargy and a general run down sluggish feeling that I haven't had much energy to do much day to day. Now, I'm hard wired to and ready to plow ahead. As for the random moments of dysentery, same thing applies in my digestive tract as well. My body is rebooting from the inside out. My liver is regenerating, my metabolism is rebuilding itself, my digestive tract is adjusting to a new function of normality, something I'm not used to. Dr. Smith stated that over time, the body will eventually level out, and my symptoms will become less and less enhanced as the weeks go on post treatment. Pretty amazing stuff. I never fathomed my body literally healing and regenerating, but now, it's really happening. I'm a new man, walking in a light and a new victory, leaving my dragon to nothing more than ashes of ruin and a vague memory in the vastness of the future that lies ahead.

As if my life couldn't get any better, this research was published on July 21st, 2014 about a possible upcoming cure in the fight against HIV/AIDS. As if my life couldn't get any more fantastic, the actual word cure and HIV are now being spoken in the same sentence, and the research is under way. Take a moment to watch this amazing and informative video on the new science that could possibly make HIV a thing of the past. To read the official release from the research at Temple University, click here.

30 years, 9 months, 17 days

Hard to believe when looking back, but 30 years, 9 months, and 17 days ago I was diagnosed as having HIV. It wasn't until years later in 1988 that I found out I had Hepatitis Non-A, Non-B, which at the time there were no conclusive tests or discovery of Hepatitis C.

It wasn't until roughly 1992, blood tests were available for patients to confirm Hepatitis C. It all goes back to November, 14th 1983, when my mother got a letter in the mail no parent should be expected to receive [click the letter to the right to read].

According to my mother's account, she was instructed to check the LOT numbers on my Factor VIII concentrates to the numbers they provided to be contaminated batches riddled with HIV and various forms of Hepatitis. Sure enough, the numbers matched, and so began my 30 year journey into co-infection living with HIV and Hepatitis C.

Using www.timeanddate.com, I was able to determine something pretty astonishing; I've been living with co-infection for over 30 years. But, something this past Winter happened on February 11th, 2014 that changed my life forever. I started a new drug treatment on Sovaldi and Ribavirin, and within just 4 short weeks, my Hepatitis C was gone. When I say gone, I'm referring to "Undetected" Status. Clinical protocols require a Sustained Virologic Response [SVR] of 6 months post treatment to be 100% certain; which means if the virus remains undetected 6 months after treatment, it is in fact a cure.

The picture is of me and my father in Winter 1983, and as you can tell from my pajamas, E.T. was a huge hit the summer before. I was roughly 4 years old in this picture, and based on the date of the Hemophilia LOT numbers being contaminated, I was just 3 years old when I become co-infected. It's strange saying I've lived with two deadly viral illnesses for over 30 years of my life. This November I'll 35 years old, and hopefully, by God's grace, I'll still be Hepatitis C free and thrive to see 35 more years in 2049. I'm certain within this decade we'll see huge leaps forward in treatment and cures for HIV/AIDS once and for all. It's been a long time coming.

Funny feeling it is... seeing loved ones and friends pass away, living through the crisis of the 80's of the AIDS epidemic to this point today. I can only believe and know for certain I'm here for one reason, to be a witness of the miraculous hand of a True and Living God.

I don't have to search the world over 100 times for mysterious signs and wonders of miracles... the fact is, I already am one. I say that with boldness and confidence, not with pride. My family has endured enough trauma and heartache from this wretched disease Hemophilia. But if I'm the one to survive, then I'll be the one to testify of how awesome my Lord and Savior Jesus Christ truly is. Think about it, how many people do you know that has survived 30 years, 9 months, 17 days with Hemophilia, HIV and Hepatitis C whom are alive to share their story? Not many...

Side Effect Alert!

Since I've been off treatment now a full 8 days, my body has slowly been readjusting to some sense of normality, if there is one for me. I have noticed subtle yet different changes in my body since I've come off treatment. I've always suffered from mild forms of acne, and around 4 months into treatment that slowly started to fade away and I haven't had any more issues since. This has been a problem for me since my teens, and I thought it would clear up at some point, but it never did. I am not certain if Hepatitis C causes acne, but I am certain not having it anymore has cleared my face up 100%.

Also, another interesting note: I've had incredible amounts of energy. Even so much, my wife has to tell me to calm down and stop working around the house and in the yard. I've mowed the lawn, trimmed my entire property with a weed trimmer. The following day I painted an entire bedroom, ceiling, walls and trim all by myself. My wife was sure I was done for after that for the weekend, as the painting spree was last Friday. Sure enough, come Saturday I was ready for the mall and long walk through IKEA to get some furniture. It's been astounding how much energy I have now. I hit a sluggish spell around 3:30pm in the afternoon, but if I'm busy doing something, usually only lasts briefly.

There's no denying it, being on treatment has done something life changing in my body. It only took just a day or two for the side effects of Ribavirin to totally fade away, and that's when I started noticing pep in my step. I obviously take it as a good sign, a good prognosis for my future SVR and that I've finally beat the dragon. One cannot help to feel almost like a super hero at times. The picture above was drawn and painted by me just before my treatment began in January 2014. I remember actually drawing this in the exam room at my first liver doctor appointment, a visit prior to the one of me being put on Sovaldi, before I knew the drug was FDA approved. It was at my next visit, around January 10th, that I found out about Sovaldi being approved and me being put on the drug shortly after. I can't help but feel lately like Superman, all this energy I now have, up... up... and AWAY!

I had labs drawn on July 9th, and will go in on 28th to my liver doctor to get my 24 weeks post treatment results and HCV RNA reading. Fingers crossed dragon slayers!

Day 168, Final Day of Liver Treatment on Sovaldi & Ribavirin

Sitting down with my lovely wife, we reflect on the past 6 months of treatment, offer words of hope and encouragement to those on treatment or soon to be; and celebrate as I take my final pill.

The Final Day

My final day of liver treatment, holding the final pill of ‪#‎Sovaldi‬. 6 months completed, and my ‪#‎hepatitisc‬ is gone. ‪#‎dragonslayer‬ ‪#‎hcv‬ ‪#‎hepc‬ ‪#‎hiv‬‪#‎hemophilia‬ ‪#‎hemo‬ ‪#‎ribavirin‬

Day 165, Final Two Days

It's been a busy week, and this final week of treatment has flown by. With the July 4th Holiday yesterday and my friends being in town out of Atlanta, my wife and I have been spending a lot of time with them which has helped get me through these final days of liver treatment.

Yesterday we went to EPCOT at Walt Disney World, and spent the day with each other and ending the night with a bang for Independence Day. Mike, his family and I go back 8 years together. He was there for me when I finished my liver treatment in October 2006, also the best man at my own wedding, even his children took part as ring bearer and flower girl. It's not one of those friendships you wouldn't simply call best friends, it's more family. He's from Atlanta, and whenever his family is in town, which is pretty often luckily, we always end up having a blast in the theme parks. Mike and I have weathered many storms together, personal lives, overcoming, and doing our best to rise up. He's truly like the brother I never had.

As Monday gets closer, the final pill and day of treatment, I feel as if I need to pinch myself to make sure the past 6 months has not been a dream. It's not everyday you find "the" good doctor who introduces you to a ground breaking and life changing liver treatment that will spare one's life from transplant, cirrhosis and end stage liver disease. Sovaldi has been that drug for me. It really works, and a cure is really achievable! After over 30 years, I will soon be walking in the shoes of a second a chance on life, and stride in victory as my own dragon has been slain. With no pun intended, or for lack of a better phrase, that truly is "a hard pill to swallow." But, one I embrace with open arms.

See you on Monday gang.
Joe

Day 159, To My Wife

There are times in life when many aspects of our lives are tried by fire to withstand the test of time. Our bodies may be put "through the ringer" physically and our minds can be pushed to their limits of break. But it's in these trials, we find true strength of the inner spirit, unconditional love from God the Father, and true love in every sense from those closest to us. I realize this story may not/will not apply to everyone that reads this post, as we've all come from many differing backgrounds and roads of life. I am thankful most for Jesus Christ and His unconditional love, and thankful for a loving wife who has endured so much with me over the past few years with love, compassion and kindness.

As I approach the end of my treatment with just 8 days remaining, I reflect on the true face of love in the eyes of my beloved wife. Not only has she seen my best moments, but has been there with me each step of the way to wrap her arms around me at my worst. While being on liver treatment, I've endured a plethora of harsh side effects, ER visits and long days lying on the couch in pain. From her hands of compassion, she's helped me back each time to regain my strength and physicality again. She does come from a nursing background and is a Registered Nurse here in Central Florida, just an extra blessing and nod from the Big Man upstairs; I must've done something right. Even beyond these past 6 months and coping with my vast array of hemophilia related injuries and disease related episodes, she's even helped administer my own factor VIII product intravenously on multiple occasions. From her eyes, from her hands and from her heart, she radiates unconditional love and joy, a true genuine side of who she is as a woman. A real companion is one that will face adversity head on without question and prepare for the next mountain to climb. A rarity this day and age, true love does and will stand the test of time, even beyond the grave.

I come from an "old school" mentality where we give those we love praise while they're here, not when they're gone. My father once preached in church, "Give them roses while they're alive, not when they're dead." Having almost completed Sovaldi and Ribavirin liver treatment, the past 6 months have been flooded with attacks on my mind and body. One thing has remained constant at the center of these storms, God's Grace and my wife's unconditional dedication. The past 6 months especially have been very trying on us, and my fits of riba-rage, mood swings, brain fog, lost in space and blah attitude I'm sure have not been easy for her. We've had clashing moments, and we quickly realized it wasn't me, but the medication talking. Like I said, she's truly seen my best and worst of times.

As I face the next chapter of my life, having slayed my dragon, and in just 8 short days am done with my treatment, I've been given a second chance at life not to become selfish but to give all that I am to God, my wife, my church and friends. This is a letter of new beginnings, of a fresh start on something that is already fantastic. God has given me a new life, both spiritually and physically, and I plan to do amazing things for His glory. I honor my wife today, the true rock in my house, the companion who needs to be recognized for the angel she truly is. True love is rare, and once found, will shake us to our core as a man or woman; if we even find it. Such is the same for my wife and how I feel about her. God gave me her blessing of love to not only take care of me, but remind me I'm worthy enough to achieve my dream despite limitations. This morning in church, we clasped hands and in our moment of worship stopped to embrace and thank God for our love and marriage. It's a humbling feeling to have found your soul mate, it's even a greater feeling knowing you will spend eternity with her one day. It says in Mark 10:9 "Therefore what God has joined together, let no one separate." Thanks Alexandra for being there, like I know you will be, forever and always.

Day 155, My Prayer Today

Thank goodness, the last couple weeks have been relatively side effect free. I've been utilizing this time not only in reflecting over the last 6 months and where God has brought me from, but also humbled with a heart of thanksgiving. Seeking treatment, in my case, has been a huge undertaking and might I add not an easy one. Over a year it took me bouncing from doctor to doctor in search of treatment, seeking hope of a cure of my Hepatitis C. The fact I'm finishing up on the final two weeks, and ultimately got the treatment I needed, and got the cure, is nothing more than a miracle from God Himself. Even more astounding, the medication comes with a hefty price tag of $1000 per pill, which is roughly $84,000 for 3 months or close to $170,000 for 6 months. God not only spared me of this financial behemoth, but at zero cost out pocket. I'm simply flabbergasted at how insanely awesome the past year has been from seeking treatment, finding it and taking the drugs themselves (Sovaldi & Ribavirin). I've had my share of struggles, but the clouds of gloom have evaporated, and the Son is shining so much brighter now than ever. Today, I officially have 12 days remaining, and for the first time while on treatment, I don't have headaches, I don't have congestion, sinus infections, riba-rage, mood swings or moments of brain fog. It's like removing a film from the eye as everything gets crisper, brighter and more vivid. The clarity I have now mentally is truly peace of mind, and the focus will not be on my own selfish needs, but sharing this testimony with the world.

I rejoice today, with heart of thanksgiving to honor my Lord and Savior Jesus Christ, who not only paved the way for my healing, but allowed me a second chance to spread the news of the gospel to even more. My years have truly been extended, my body is healing slowly after the 30+ year dragon that dwelt within, and my soul is on fire for God. “He must become greater; I must become less.” John 3:30.

Closing Prayer - Father in Heaven, I praise you and give you glory today and honor your son's sacrifice on the cross to give an undeserving man like me a chance to shine, not for my glory, but for yours. Lord I thank you for these past six months, I praise you for the struggles, trials and hardships as they've made me so much stronger physically and mentally. I rejoice in my suffering, because I know you have something truly amazing in store for me. I rejoice and give thanks for providing me with the hands of care, the doctor's and nurses involved during this whole treatment process. I pray you give them each a special blessing in their lives. Thank you Father for providing for my family, food on our table, clothes on my back, shoes on my feet and even more importantly a second chance at life. Lord in all that I do, I will honor you. Put a fire in my soul to be more like you, and therein help others around the world see proof that you still can heal. Forgive me Father for my sinful nature, and those things that I do that do not bring you glory and honor. In everything I do, everything I am, have your guiding hand in my life. It's in His holy and precious name I pray, Amen. 

Day 148, Officially 20 Days Left

Around 5PM today, I took my Sovaldi as usual and realized that I had already ventured an entire week since my last post, and thus 7 more days complete. Today, officially I have 20 days left of treatment, and yes, I'm totally rocking a countdown to the big day coming up on July 7th. Wow, it's amazing how time flies when you're caught up in work and spending quality time with family over the weekend.

God blessed me to see my mother-in-law this past weekend as she stayed with us from Friday to Monday afternoon. I was so happy for my wife, Alexandra, to be able to spend some much needed time with her mother before their move to South Carolina at the end of June. They've lived in Cape Coral, Florida since 2002, and now are heading back to their old hometown of Anderson, South Carolina. Family was important this past weekend, and having Mary in our home and running around Central Florida with us was a blast. Having Mary spend a few days with us helped to pass time, and helped the days go by quicker while on treatment. I found myself not even thinking about Sovaldi, treatment or the end of therapy. Rather, I was basking in the joy that comes from sharing stories with family, having dinner dates and going to church. God sends people in our lives just when we need them, for an extra boost of motivation and zeal.

As for side effects, I have been clear for the past 7 days of any sinus related congestion. No more headaches, no chills, no fevers, no mucus and more importantly no swollen lymph glands under my neck. Albeit, I've had moments of lethargy in the afternoons around 4PM, and a short nap usually gets me back on track. My wife has also pinpointed some of my absentmindedness at times with brain fog, and in those moments I just "zone out." Just like the song from Oasis, "Champaign Supernova," I catch myself riding the comet trails of brain fog, and caught in daydream like moments. It's sometimes pretty funny actually, but thank goodness, all of this will end shortly in less than 3 weeks.

An idle mind is a playground for negativity, so keeping myself active, focused and busy has really been one of the main mental paths that has allowed me to get through some tough nights with side effects. When you surround yourself with productivity, no matter if it's gardening, pottery, painting, graphic design or just spending time with family, at the end of the day these things deliver a lot of joy and focus. Let's face it, focus and a hobby of sorts could benefit a lot of us while on treatment of any kind or with any medical condition that come with limitations and boundaries. Take the time to find your niche, and allow it to be a part of your day in some way. Philippians 4:8 says this, "Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things." Apostle Paul was one of the New Testament's greatest authors, not only did he write passionately, but his words echoed giving God glory in all we do.

Like I've said so many times before, "You are not your disease!" Keep Calm and keep slaying that dragon!

Day 140, The Final Countdown

Well, it's been a long winding road filled with twists, turns, bumps, setbacks, side effects, ER visits, doctor's offices and countless needle sticks, but the end is finally in sight. Today officially marks my final 28 days of treatment on Sovaldi + Ribavirin (800mg). If some of you don't recall, I'm a genotype 3a, with hemophilia and HIV. Having gotten both HIV and Hepatitis C when I was a child around age 2 or 3, it's been an uphill battle both physically and mentally. Not only has this new "non-injection" Hepatitis C therapy been a blessing, but a breath of fresh air. I treated previously in 2006 on PEG-interferon and Ribavirin, only to go undetected around week 17 of the 24 week therapy, and relapse shortly thereafter 3 weeks post.

Living with Hepatitis C has been a constant drain on me physically, dealing with bouts of lethargy and minor digestive issues like acid reflux. Also, the psychological aspects have been draining as well, as the cloud of gloom and doom of my own mortality was left uncertain and unsolved. I don't want to say I lived in the fear of the disease itself, but it definitely played a huge role in my overall outlook on life to some degree. For example, I was hesitant to even drink my own champagne toast at my wedding in fear of damage to my liver. Sure it's only only a small glass of bubbly, but small things, special occasions and socially I knew there were boundaries in which I dared not to cross. But I did do the toast with my lovely wife on that day back in 10-10-10, and didn't let that fear cloud the moment of joy and happiness with my wife.

Now, looking back over the past 5 months of my 6 month treatment, it's been a blessing with this new treatment on Sovaldi. Yes, as you've read over the past few months, I've had my fair share of side effects, ER visits and stumbling blocks with insurance, but being cured is my prize at the end. Simply how I got on treatment has been divine intervention by God, as I technically shouldn't even be treating right now. Since I've moved to Florida back in 2009, I've bounced from doctor to doctor, seeking treatment for my Hepatitis C, and some offered the old standard injection based therapy, but I waited for something better. From one doctor, to another, to another, I felt like a kid lying on the floor of a bounce house just tumbling and rolling on the constant waves knocking be back and forth. No progress, no forward motion and no treatment, until Sovaldi came along. I was originally referred to my current treatment doctor from a friend of a friend of a doctor, and basically she was my last hope. She informed me on December 3rd, 2013 that she was going to treat me on PEG-interferon and Ribavirin and to come back in 1 month to go over a treatment schedule of up to 48 weeks. I was not happy. Then on December 6th, 2013 Sovaldi was approved by the FDA and during my next visit the following month my doctor was ecstatic to put me on the brand new drug. By January, 14th 2014 the treatment was outlined, scripts were written for the medications and 5 days later was approved by insurance and on January 21st, I took the first pill to begin my 6 month journey.

As we count down these final 28 days of therapy to July 7th, 2014 together, I would like to take this time to thank all those who have commented, read and kept up with my progress over the past 6 months. Not only have you given me strength in low times, but your prayers and uplifting spirits have literally carried me through the roughest of times dealing with side effects and insurance woes. Keep them coming! I'm sure I'll need them now more than ever as we approach the final 4 weeks of treatment. To those on the fence about treating, DO IT! What are you waiting for? Just because you feel okay now doesn't mean you won't be in the same physical state in a few months, or couple years down the road. Time does damage with Hepatitis C, and it's nothing to take lightly, so treat now, and save yourself pain and misery in the future. This is just the beginning of my Strive 2 Thrive blogs, as we enter the post-treatment era, I'll be blogging continually as this web site will be an ongoing resource and central location for my health, well being and that of others. We've only just begun!

Day 135, Insurance Woes & Glandular Swelling

It's been a pretty tense past few days here. As you may recall, last month I had a small issue with getting my medication approved for month five of Sovladi + Ribavirin. At the last minute with only 5 days remaining of medication, the pre-authorization form was approved and month five was on it's way. This month, even more headache coming from Florida Medicaid in approval of my final month of liver treatment. A request from the insurance demanding I have lab work was noted before I could be approved for the final shipment. Being up to date on all my doctor's visits and lab work, my physician's office faxed over all the information they asked for, as I just had lab work as recent as two weeks ago. Now, the past 3 days, we've been stuck in limbo, awaiting approval, and I'm down to my final 4 days of treatment with my last pill taken on Monday. It's crunch time.

I contacted Gilead's highly spoken about Sovaldi assistance program (1-855-769-7284), "Support Path," and disclosed to them my case and within 15 minutes of gathering some patient information, they informed me their team will be contacting my insurance company, doctor's office for scripts and my pharmacy. The gentleman I spoke with at Gilead Support Path was very nice, and seemed like he had been down this road many times with other patients, so he was well versed in the matter. He told me first priority is to see what they can do to get the claim on urgent status to get the medication shipped so I don't miss a day of treatment. If no terms can be negotiated, than we said his team will request scripts for both Sovaldi and Ribavirin and handle it themselves. It's moments like this, I've come too far to turn back, and I have to do everything in my power as a patient, survivor and victim of Hepatitis C to fight and push forward.

Literally, while I was typing this blog, I just received a call from my pharmacy that my claim did get approved, but with a catch. They're only going to approve my treatment on Sovaldi 7 days at a time over the next 4 weeks. So instead of getting the Sovaldi bottle with 28 tablets, I'll get getting 7 tablets distributed every week until my therapy ends on July 7th. It sounds sketchy, and it's not exactly how I planned my last month to go, but it is what it is. At least I get to complete the final month of treatment, and can fulfill all 24 weeks of therapy. I hope by blogging my journey, this can truly help someone on their own path, and give them insight from my experiences, ups, downs, setbacks and victories. It's not perfect, but I'll take it. Ultimately, does anything go as planned anymore?

On a side note, a major side effect in the latter weeks of treatment has been these sinus related issues induced by the medication Ribavirin, not my environment. My ears feeling clogged, yellow and green mucus secretions from my nose, feeling congested and the worst tender/swollen glands in my neck. The glands tenderness is very painful, as today I'm having the 4th round of gland issues while on treatment. It hurts to eat, swallow, drink or even clear my throat. Even something as simple as blowing my nose hurts. The only thing I can do to combat that is ibuprofen (Advil) or acetaminophen (Tylenol). Typically 400mg a couple times a day tends to do the trick, but at most it reduces the pain by maybe 30-40%. At night, some cough syrup like Robitussin, which helps me go to sleep and fights pain with acetaminophen works very well. Not much I can do with this Ribavirin induced "Sinus Funk." Like I've said before, while on treatment, one has to take meds to combat the side effects of other meds. If anyone out there reading is on Ribavirin or has taken it before, I'm curious to know if you've experienced any sinus related issues, swollen glands and congestion. Also, maybe what you've done to combat these side effects from your own experience. I'd really like to know as I'm counting down the days to end of treatment, I'm almost certain I'll have another wave or two or this sinus and gland tenderness issue.

Day 128, Feeling Better / Doctor's Visit

I can't begin to thank you all so much for you prayers over the past couple of days. I'm feeling much better after my bout with another treatment related sinus induced, yet pharmaceutical enhanced side effect driven illness; [Dang that's a mouth full]. The swelling of my glands is now gone, and even though I'm still left with a nagging cough and some lingering yellow junk secreting from my head's membranes, I'm doing terrific. I feel the best today I've felt all week since I started coming down sick again on Monday, and I know it's a God thing and He's healing me once again. I'm almost certain though I haven't seen the last of things #RibaFunk, as I still have one more month left of Sovaldi and Ribavirin, with a total of 39 days remaining. We all know though, in the end, it will so be worth a few months of headache to thrive with a life free from something damaging my liver. After over 30 years, my dragon will be slain, and I've made this Dragon Slayer Shield logo to commemorate those who are close to, or have completed Hepatitis C therapy. God Bless our slayers, pill takers and valiant warriors around the world.

Today I had a doctor's visit on my 5 month check up into treatment. Wonderful news, good vibes and great results all the way around today. All my vitals and lab work came back astounding, all in normal ranges, especially my liver and immune functions. Talk about being blessed beyond measure! Even though this treatment regimen has given me ups and downs, #RibaFunk, #RibaRage etc... the end is almost within grasp, and the finish line is ever so close now. For those of you outside the Hepatitis C community, RibaRage is a slang term for the harsh side effects induced by taking Ribavirin, one of the companion drugs to Sovaldi to act as a 1-2 punch to the virus. Check out my previous post from two days for more details and links on Ribavirin side effects. Upon the end of my visit this afternoon, I was given a 2 month post-treatment appointment slip and lab work to be done at the end of treatment. Wow... My doctor informed me that HCV RNA viral loads will be check at 3 months, 6 months, 1 year and 2 years post treatment for 100% confirmation. But I'm sure with a relapse rate of 2%, the odds are in my favor being a Genotype 3a.

So here I am, finishing up bottle 5, and my final shipment will be in hand next Thursday. I never knew what 2014 would bring for me in terms of health, treatment and overcoming, but wow has it been a wild ride, but in a good way. God has delivered on time, and gave me a treatment that I can tolerate, and in the end be cured once and for all from Hepatitis C. The future is wide open. No more lingering thoughts of liver transplants, cirrhosis or end stage liver disease. I can't begin to tell you how joyful that makes me feel, and blessed!!!

Before I go, I just wanted to share this video with you from contemporary Christian music artist Kari Jobe, and her newest release called "Let The Heaven's Open Up." This song got me through a lot yesterday as I played it over and over on loop. Amazing how uplifting your spirit can become when you draw closer to Him.

Day 126, Old Friend Back Again

Yesterday morning I awoke to an all too familiar sensation in my neck, throat and head. It's the same symptoms I've had twice before and I feel the recurrence of these episodes aren't allergy related at all. They are side effects from taking Ribavirin and Sovaldi. So I got the idea to revisit the long list of side effects of just Ribavirin alone, and when compared to my symptoms versus what the drug can cause, the conclusion was obvious. I Googled "Ribavirin Side Effects" and the first result was from MayoClinic.com. Within the list of over 100 side effects posted, here's the ones that stood out most: body aches, congestion, cough or hoarseness, dryness of the throat, fever or chills, general feeling of discomfort or illness, headache, irritability, brain fog, poor concentration, rapidly changing moods, quick to react or overreact emotionally, restlessness, lack of sleep, runny nose, sore throat, swollen glands under the neck, sores on the lips or in the mouth, trouble with concentrating, trouble with swallowing, dry skin, heartburn, lethargy and stuffy nose. Pretty incredible when looking back retrospectively on my symptoms versus the drug's side effects.

Thankfully, this Thursday at 2:15PM, I have a follow-up appointment with my treatment doctor, and I plan to go over all of these occurrences with her. I know it's going to be one of those cases that I'll have to tough through it regardless, and there will be no relief until therapy has ended. I've had to visit the Emergency Room three times since April 16th from my mini-vacation to Atlanta, GA. What I presumed was a mere allergy related matter, and now with the refresh of looking at Ribavirin's side effects, I'm second guessing this entire sinus infection prognosis and leaning more towards the medication. I went to Walgreen's yesterday and picked up some Emergen-C with Immune Boost to help get me through the next couple of days. I'm going to do everything in my power to not visit the ER again, and just tough through it as I approach the final 41 days of treatment as of today. 

I'll be sure to keep all my friends, fellow dragon slayers and church family up to speed on my progress as we rapidly approach the countdown to the final 30 days. Please continue to pray for me as we can now finally see the home stretch of this 6 month journey to get cured of Hepatitis C once and for all! Before I go, I wanted to share a scripture from the book of Romans with you that has helped me get through the past week. The reminder of God's unconditional love sometimes is all the motivation I need to keep Striving to Keep Thriving. Please 

"For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." Romans 8:38-39 NIV

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