My biggest complication from having Sickle Cell Anemia is by faaaar ... avascular necrosis arthritis also referred to as osteoarthritis.
At age 13 I started started walking with a limp because my leg would hurt. But this didn't feel like a pain crisis, I couldn't quite put my finger on it but I knew it was different.
I tried to ignore it for a few months until I had a hard time keeping up with my classmates in gym class.
1 year later I got the diagnosis that was so devastating at the time. "I'm way too young to have arthritis", I thought. I immediately envisioned a life needing the assistance of a can, walker or wheelchair. My doctors told me to wait it out as long as possible, which I did. I only went for follow up appointments to track the progression. This lasted several years until I couldn't take to anymore. I was in constant pain every single waking day.
7 years later, on June 20th 2014, I finally had my first total left hip replacement. I had waited so long that the femur head was so flattened, my surgeon said he didn't know how I was still walking on my own. It had several complications and the recovery felt like it took forever. In hindsight, it went by fairly quickly, because I returned to school the following fall semester. By November I went on vacation and went to the club in heels.
A few years had passed, and everything was going well. Then in 2017 I had a pain crisis that came out of no where. My arms were feeling pretty sore for about a week straight until one day, I was leaning on the bed and my arms collapsed under me. I was in agony with no relief in sight. So I went to the hospital the next day, and after some testing, I was diagnosed with beginning stages of avascular necrosis arthritis again. This time it was in my shoulders and collar bones. Since it was so premature they gave me the same advise to hold out as long as I could, so that's what I did. I managed the symptoms the best I could by going for massages, using muscle cream, pain medicine. I even used an arm sling from time to time.
2 years after that, my right hip started hurting. By now, I knew the sensation and I could tell it was going to be the same outcome. I had my suspicions and got some testing for confirmation. This time my surgeon suggested getting an immediate potentially preventative surgery, called a hip decompression. Think of it as when you fracture or break your arm and you're out in a cast for 3 months, to allow to compromised bone to grow back in place of the fracture. But instead they drill a hole and removed the compromised arthritic bone and leave it hollow, in hopes that it grows back healthy. The recovery wasn't too bad, I was up and running within a couple months.
Okay.... this is getting long.
TBC