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 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.