I'm an active, healthy, middle-aged HIV-positive guy. I work out regularly. I take samba once or twice a week. I'm a New Yorker, so I regularly have to karate kick my way through the hoards of tourists in Times Square, and I'm gay, so I'm forced to sashay through Chelsea with fierce swagger (a happy punishment). I'm pretty social, I have a lot of friends, I date. I'm also a writer/director/actor, so I usually have one or two projects in motion.
A bit over six years ago, I started feeling a little pain in my left thigh, especially when I was running or jumping, or going up stairs. Friends started to notice that I was limping. The pain grew increasingly worse, interfering with my "gymnastics training" (wink wink, nudge nudge. I'm talking about sex here, kids.). I imagined that the pain would lessen on its own. When it became so severe that my leg buckled underneath me, I dragged myself, (emotionally) kicking and screaming, to an orthopedist. He examined me, maneuvered my leg and without an x-ray diagnosed me with HIV-related avascular necrosis. "We need to get some x-rays to be sure," he said, "but you probably need a hip replacement."
"Oh, golly!" was my reply. Or I might have said something more colorful. I don't really remember.
Avascular necrosis is when the blood supply stops going to the top of the bone, and the bone starts to die. It's also called osteonecrosis (which means "bone death") or flattening of the hip. My doctor explained to me that the condition is happening in a lot of HIV patients. It's not something that every HIV-positive person experiences, but many do, and there is no definite cause. According to TheBody.com, it could be the toxicity of the HIV drugs, the HIV itself weakening the bone, lifestyle and aging, and any other combination of factors.
When the doctor looked at my x-ray, there was no doubt that my left hip needed replacing, and it was clear that the condition was starting on my right hip as well.
A hip replacement is not so much surgery as it is carpentry. Here's how mine went. First I was rolled into an operating room filled with suitcases of equipment and tools. There were many folks in the room: the nurses, the surgeon and my best friend, the anesthesiologist. After I was put under with Propofol ("We call that the Michael Jackson drug!" my best friend joked) and given an epidural, they filleted me like a fish and opened me up like a notebook. They pulled my left leg out of the socket and sawed the top of the leg bone clean off. They replaced the top of the leg by jamming and hammering a new joint into the remaining bone. Then they took what they call a reamer (a hilarious name for a surgical tool) and scraped out the hip joint. Then they replaced the joint, put the new ball into the new socket and sewed me up. I spent the rest of the day post-op in the fantastic haze of a morphine drip.
The next day, I was off the morphine and on oral painkillers. The physical therapist got me out of bed to walk with a walker. Over the next two days, I was in and out of sleep, high as a kite on goof balls and learning how to manage walking and stairs with a walker and crutches. I was out of the hospital in two days. My first week of recovery at home was totally fucking awful, painful, with very fitful sleep. The doc gave me a bunch of hip precautions for the first six weeks to prevent the ball from popping out of the socket. I could not bend my hip beyond 90 degrees (a right angle), which meant among other things that I had to install a special toilet seat above the normal one in my apartment (which thrilled my two roommates). I was not allowed to bring my legs or knees together, and I had to sleep with a pillow between my legs to maintain the proper position and keep my legs apart. I could not rotate my left leg inward. I had to use a "reacher" to pick objects off the floor and to help in getting dressed. There were physical therapy sessions and blood tests to make sure I didn't clot. The whole thing was emotionally draining because I felt so weak and sick and out of it, and I hated having to depend on friends for support.
But after about a month, I found I could walk without a walker or crutches, and I was off the goof balls. One miraculous day I realized I wasn't in any pain. Truly, I hadn't realized how much pain I'd been in or for how long until I wasn't in pain anymore. After six weeks I felt about normal, and after about six months I felt 100%. I was back to working out, back to samba, back to my routine. And the scar on the side of my left butt cheek is kinda sexy.
When my left hip was replaced six years ago, my right was doing okay. Although I knew that replacement of the right side was inevitable, I was in pleasant denial about it. When I started to feel symptoms about two years ago, I little by little cut activities out of my life that caused pain: leg workouts, boot camp classes, samba. (That last one was hard: I love to samba.) My doc tried several different treatments to alleviate pain and to try to keep major surgery at bay. I had a bone graft with cells from my pelvis. Then I had a stem cell injection, and that was cool. (I felt so science-y!) Though both of these treatments helped in the short term, they were not a permanent solution. The pain on my right side has only gotten worse, and I recently got the bad news.
So here I am, readying myself for another hip replacement, scheduled for the end of January. I know I am lucky. I have health insurance. I have a very talented medical team that I trust. I have friends and family that support me.
Yet, I find myself crying at the idea of the surgery.
I was diagnosed with full-blown AIDS more than 12 years ago, and I've gotten to a place where I feel empowered when it comes to my HIV status. I'm not ashamed of my HIV, and I strive to live a life of joy and laughter, and one that is not hindered by the fact of my diagnosis. Last year, I created a celebrated comedy web series about an HIV-positive guy, Merce, which puts forth the idea that "life can be positive even when you're positive."
The avascular necrosis and impending surgery obstruct my view of myself as a strong, healthy, HIV-positive role model. I don't mind being poz -- as long as I'm cute and healthy and young. (Okay, I'm almost 48, so young-esque.) This looming hip replacement makes me feel decrepit and sick. I'm forced once again to realize that -- although I'm a very healthy man with an undetectable viral load and a high CD4 T-cell count who works out and eats right and takes his meds religiously, who doesn't drink and doesn't smoke and doesn't take drugs -- I still have a chronic, life-threatening illness. There are still serious consequences from my being HIV positive. HIV is no skip in the park, especially when your hips ain't working.
I'm bracing myself for what I know will be a difficult time. It's very important for me to remember that, as with my becoming HIV positive, my avascular necrosis isn't my fault. I didn't do something to cause or deserve this. Needing surgery is not a punishment.
I will get through it. I've done it before. I will breathe, reach out to friends and family, sing show tunes and make a lot of jokes. The surgery is weeks away. If I can stay present, just keep myself in today, well, today I'm just fine. When I look at the big picture, I know I'll be okay. I know that by July, I'll be back to kicking tourists' asses and flitting down the lane as always.
One thing, though: I'm going to ask the doctor if he can make the new scar on the right side of my ass match the old one on the left side. I'd like them to resemble silk stripes on tuxedo pants.