Factoring Up Will Never Be The Same

Today September 11th, 2015 is a date in which we not only pause to reflect on the tragic events 14 years ago in New York City and the Nation's Capitol, but strangely enough, a day of rejoicing within the bleeding disorders community. The FDA announced today that Roche's new drug ACE910 has been escalated to fast track status promising amazing results and a game changer among hemophiliacs suffering with Type A severe clotting disorders.

The new drug will be a breakthrough "subcutaneous injection" steering away from the traditional vein or port access among hemophiliacs today. The under the skin injection will be administered once a week among hemophiliac patients who have no inhibitors to factor VIII proteins. The first trials are expected to commence in early 2016 in young pediatric patients with Type A severe hemophilia. Control studies will be tested in both inhibitor resistant and non-inhibitor patients.

"Sandra Hornung, the chief medical officer at Roche, said that the FDA granted permission because they recognize that it meets a segment of the population that it hasn’t met before." PPPFocus.com

As a hemophiliac myself, having my veins accessed for the past 35 years, this new anti-hemophiliac factor VIII will be one to keep our eyes on. Though the nation may mourn the events of 14 years, members of the bleeding disorder community rejoice today in light of Roche's announcement of the new hemophilia drug.

Full Article: http://www.pppfocus.com/hemophilia-drug-given-fda-fast-track-designation-303295/

Cholesterol, HIV & Hemophilia

So recently I had a lipid profile ran during my latest rounds of lab draws, and in the results found some of my panels to be a tad elevated. My cholesterol levels were at 268, while my Direct LDL was 194. I've personally never had any issues with lipids until now. So as we dive into this situation more, I want to unravel the chaos that can come from having multiple chronic illnesses that effect other illnesses and their treatments. I need to stress before we get started, my elevated lipid levels are a direct side effect of taking HIV medication for over 20 years, not so much diet. I allow myself a splurge day once a week, but beyond that, I actually don't eat too unhealthy.

My family doctor placed me on a fish oil supplement and 10mg Atorvastatin or "Lipitor" for short. But there's a huge problem with statins in the realm of HIV medication. Turns out a protease inhibitor that I've been taking since 2005 called Reyataz boosts the levels of Atorvastatin in my bloodstream, and my CVS Specialty pharmacist pretty much demanded me stop taking the statin ASAP due to the drug interference from the HIV anti-viral.

So with this knowledge, and no longer being able to take lipitor to treat my elevated cholesterol levels, I resorted to a possible herbal remedy that possibly could work. A friend of mine told me about red yeast rice (RYR), and how it's a naturally occurring statin in herbal pill form. Thinking this would be the the possible treatment I needed, I went out and purchased some capsules from my local drug store, and started taking them. But then it dawned on me, what if, perhaps all statins would interfere with my HIV medication?

I found the answer on page 3 of an article on WebMD that gave me the answer. "In addition, anyone taking one of the following medicines should not use red yeast rice: Protease inhibitors, used to treat HIV." So out of the gate, I'm sort of stuck between a rock and a hard place. RYR may be good for hemophiliacs in general, but for HIV patients on protease inhibitors, there is a drug interaction in which the statin level is boosted, and depending on dosing, could be boosted to unsafe levels.

Now this brings me back to my fish oil supplement. Though fish oil has no direct interactions with any facet of HIV disease, I was told by both my hematologist and pharmacist that the extract does interfere with hemophilia bleeding disorders. It has been documented that prolonged exposure to fish oil in hemophiliacs leads to increased bleeding episodes and possible spontaneous joint/muscle bleeds. LiveStrong.com reports, "Fish oil supplements should also be used with caution by people with hemophilia because they could trigger a severe or life-threatening bleeding episode."

So my problem, and question to not only the hemophilia community, but the HIV family as well, if you have elevated lipids caused by the medications you take for HIV, how are you treating it? Even though my numbers aren't astronomically high, they are elevated enough for me to seek treatment and educate myself in this new world of cholesterol and statins. Any help would be greatly appreciated.

My Broken Foot & Hemophilia

Gotta say, I clean up pretty well for a wedding!

On August 4th, I attended a wedding as a groomsman, little did I know on this night, I literally would break a leg. Everything about the wedding was perfect; the ceremony, the food, the music, the couple and the church. Josh Moyerman is a dear friend of mine from Real Life Christian Church, and being asked to be part of his special day was truly an honor. I have to admit, I cleaned up pretty nice, and sported my Dapper look just for the wedding.

The ceremony was flawless, the reception was excellent and the music started as the celebration of marriage began. I knew my bones were fragile, though I truly didn't understand the severity of my own bone deficiency resulting from living with HIV over 30 years. My joints are damaged from hemophilia, but my bone density themselves are deficient due to progressed HIV disease. Long story short, HIV depletes the Vitamin D needed to restore bone health.

The hematoma from the fracture in ER.

I danced the "Macarena," rocked "The Twist," and everything seemed fine. Towards the end of the night, just as everyone was starting to depart, I get up to walk back to the men's changing room to get out of the tuxedo, when the unthinkable happened. I tripped, and fell, rolling my ankle, and in an effort to counter-balance my weight, then stumbled, which forced all of my weight to the center of my foot. I felt a pop. I knew something was wrong. The swelling happened instantly as a hemophiliac. It was a massive hematoma on the side of my left foot.

A friend helped me to my feet, and escorted me back to the men's changing room. I remember feeling a throbbing pain I've truly never felt before in my body, a break. Keep in mind, this wedding was an hour away from where I live, so I had to drive myself home to "double dose" on factor VIII and then go directly to the emergency room. My night had ended in ER lobby with a fractured left foot. Thankfully, it wasn't my right driving foot, that could have truly been a dilemma getting back home after the accident.

Avulsion fracture of the fifth metatarsal left foot. (actual X-ray)

My wife, a Registered Nurse herself, had one look at my foot and knew it was broken. And surely enough when the X-rays came back, it showed a fracture at the base of the fifth metatarsal. It's a pain unlike anything I've ever felt before. And to make matters worse, my left foot is my dominant leg, as I have a bad right knee stemming from hemophilia related joint injury. So now, my good foot is broken, and my bad right leg has to over compensate. Any weight bearing pressure or walking is completely and utterly out of the question. Not only was the top of my foot swollen severely, but the sole was swollen just as bad, which prohibited any kind of walking.

It's a nasty avulsion fracture, according to the doctor in the ER. He jokingly called it, "The Dancer's Break." Oddly enough, I was dancing hours before, but didn't break it in the way in which everyone assumed (dancing). But anyone that knows me, knows that I'm accident prone. I'm just a big klutz when it comes to stumbling over things, banging my elbows into walls, stubbing my toes on furniture. It's actually no shock that this would happen, and I say that with a smile jokingly.

My makeshift splint . 

After what seemed an eternity in the ER waiting room, it was finally time to splint up my foot. The pain medicine didn't even phase this level of trauma, and I remember being in excruciating pain as they attempted to makeshift a splint on my foot. I finally left the ER roughly around 2AM on the morning of August 5th, and never slept that night from tossing and turning in pain.

The next morning was my breaking point. With a combination of pain, and my Obamacare insurance not wanting to pay for me to see a specialist to get properly fitted for a boot or cast, I was scrambling to no avail to find a podiatry or orthopedic specialist to properly be evaluated. I admit, I broke down, and succumbed to the thought of defeat that I would be stuck in bed for the next 2-3 weeks, because CHA "Clear Health Alliance" healthcare could not find a doctor for me to see that was covered under their plan. For a normal person, this wouldn't be much of an issue, but for a hemophiliac, with bleeding in the joint and a verified fracture, it was a more heightened situation. Efforts are underway for me to change insurance plans over the next few months, and get away from CHA once and for all.

The day after, swelling turns to bruising. 

Thankfully, Hemophilia Foundation of Greater Florida stepped in, and recognized the emergent need and offered to pay out of pocket expenses to get me to the doctors I was intended to see. After a long grueling day on August 5th, by Thursday the 6th, I was seeing Dr. Amit Varma here in Clermont, FL - a specialist in orthopedic surgery at the Florida Sports Injury Institute.

As a hemophiliac, having a broken bone is more amplified because of the bleeding into the joint and surrounding tissue in which the break takes place. In my own situation, the swelling, bleeding was far more painful than the actual bone break itself. It took a solid 7 days to controlling the bleeding and keep the swelling down by dosing on Factor VIII.

After all is said and done, I'm healing nicely now that I have my padded boot to walk around in. I'm expected to no longer need the boot in 1-2 weeks, and the bone itself will be fully healed in 4-6 weeks. I have a follow up doctor's visit with my orthopedic surgeon next week on the 20th of August, and I will find out how well my foot is healing. Prayers for healing and recovery are warming welcomed.

Conversations With A Survivor

Join me on July 22nd, 1PM EST live on ‪#‎Periscope‬, as I tackle some of your questions in real time about living with ‪#‎Hemophilia‬, ‪#‎HIV‬ and ‪#‎HepatitisC‬. Periscope is a mobile app, and is totally free to download, no ads or quirky gimmicks. Be sure to add @istrive2thrive as a follower so you'll get a notification that I'm live! Like, follow and help me share this awareness and advocacy event. 

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.