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.

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.