Last week, I left off wondering, “Could it be that driving a car with a clutch was making my hip bleed after all?” While I was at the hospital receiving a transfusion of cryoprecipitate to treat the most recent bleed in my left hip, the hematologist talked with my mom about what we needed to do going forward. The doctor felt it was certainly possible my hip bleeds were a result of me driving cars with manual transmissions and using the clutch. I wasn’t so convinced.
I thought if something was going to bleed, it should be my knee, not my hip. After all, my knee was the joint that got the most action when I operated the clutch. I was 16 and starting to develop a typical teenager’s stubbornness. Plus, driving a car with a clutch was fun. My dad’s pickup truck and my sister’s sporty car were certainly more attractive than the Banana Boat!
After that second bleed in my left hip, I complied with the doctor’s request—for the most part. Several more times, I did drive my dad’s pickup truck, my sister’s car and a friend’s car, all of which had manual transmissions. Guess what? I had three or four more bleeds into the left hip joint, usually within a day or two after driving one of those vehicles. I guess the doctor was right!
Pain Like No Other
People have often asked me to describe what it feels like to have a bleed, but I’ve always struggled to find ways to describe it. Other people with hemophilia can probably relate to this as well. Oftentimes, there are no outward signs of bleeding, so people can’t understand what the pain is like.
Out of the many, many bleeds I’ve experienced in my lifetime, I can honestly say that a bleed into a hip joint was the most miserable, excruciating pain I’ve ever experienced. It’s almost like a red-hot poker being stabbed into the joint every time there is the slightest movement. If I remained perfectly still and motionless, the pain switched from a burning, searing pain to an explosive throbbing, almost like a fast heartbeat. There was no comfortable position. Getting up and down or moving around brought on waves of nausea and pain so intense, I’d nearly pass out.
After six rounds of this, I decided driving a car with a manual transmission just wasn’t worth all that pain and agony. I’ve often wrote of the mindset my parents instilled in me: “If you find you can’t do something, don’t dwell on it. Find something else to take its place. Don’t let it stand in your way.” In this case, it was easy. I just resigned myself to the fact that I’d no longer be able to drive a car with a manual transmission.
Despite my resolution, the six bleeds in my left hip caused it to become a target area. Technically, a joint has to have 20 bleeds over a lifetime to be officially called a target joint. But because bleeding can damage a joint even after one bleed, my hip was now prone to bleeding without me using a car with a clutch. I went on to have a total of 15 or so bleeds into my left hip joint, with the last being about 14 years ago.
Nursing the Pain
Fast forward to 2007. This was the year I began working full time as a licensed practical nurse. Nurses in a hospital environment don’t get many opportunities to sit down, go to the bathroom or even take a break to eat lunch. Once you go on duty, you’re on the go the entire shift—which can be as long as 16 hours—without stopping.
After I’d been at the hospital for about six months, I noticed I was starting to have intermittent stiffness and discomfort in my left hip joint. I’d been diagnosed with high cholesterol and had started going to the gym two or three times a week to work on losing weight and bringing down my cholesterol. I mentioned something to my primary care doctor about my hip, and we both attributed it to the new activities at the gym.
My hectic and strenuous work schedule continued. I kept going to the gym. My hip was still uncomfortable. What had been intermittent discomfort became irregular pain. And as the months continued, what had been irregular pain became regular pain, in addition to mobility issues. At the end of a shift at the hospital, I’d limp to my car and have trouble getting in and out of it.
I went back to the primary care doctor, who prescribed some pain medication for when it got really bad. I continued with my activities as best I could, although I had to adjust when my hip was really hurting me.
My Hip, Day by Day
Flash forward to the year 2010. I’d now been dealing with this hip pain for nearly three years. Now, the pain was a daily thing. I don’t remember days without it. In dealing with hemophilia my whole life, I was used to pain. I’d just suck it up and keep going.
Things have continued to decline with my hip, and the pain and mobility issues are now constants in my life. Recently, I met with an orthopedic surgeon for a consultation. He confirmed that I now have significant arthritis in my left hip joint. At this time, I’m not a surgical candidate for a hip replacement, but he told me I am going to need one in the future. In the meantime, he advised me to continue pain management and activity restriction when needed. He also suggested I consider using a cane. That was a lot to take in, and I’m still digesting it.
While this isn’t the best situation, I know I’m extremely lucky. Most people with hemophilia in my age group have crippling effects from joint bleeds, as we didn’t always have the luxury and convenience of prophylaxis infusions or even immediate treatment for bleeds in the 1970s and ’80s. Many hemophiliacs I’ve met have had to undergo multiple surgeries and endure mobility issues.
Do the issues with my hip suck? Sure! But I know things could always be worse. My motto still holds true: “Don’t let anything stand in your way!” I’m learning to adjust to my new situation. I’ve had to learn that I’m not invincible, not Superman.
I’ve had to learn there are now days when I’m not up to doing things, and if I ignore what my body is telling me, I’m going to pay for it later. Has that stopped me? No! I just had to change the way I deal with things. Learned to plan. Learned to rely on my partner to do things for me more. Was that hard for me? Absolutely! But I’m determined to not let it get the best of me. Although it’s hard, I don’t believe we’re given more than we can handle in life.