I took my shot

I took my shot tonight. 2,500 mg of desferal infused subcutaneously over an 8 hour period. Desferal is an iron chelator, it leeches the iron from a person's bloodstream by binding to it and releasing it in urine. It's a pretty handy drug if you have Thallassemia, which in my case requires monthly blood transfusions. I've met patients that have to come in more frequently than that. Lots of blood transfusions leads to excess iron, which unlike other vitamins or minerals, the body will store in your organs, which eventually leads to organ failure....which isn't good, obviously.

I have a lot to be thankful for. When my mom first found out about my condition, I was about 5 years old. What's funny is, not until recently have I ever considered what it could have felt like learning about a medical condition that your kid will have to live with for the rest of his life. I imagine it must have been a mixture of sadness, guilt, anxiety, that sort of thing. What amazes me though is how she dealt with it. Since I was a kid, my prescription was to take the shot 6 nights a week, and no matter where we were, or how tired she must have been raising 3 kids, she never failed to give me my shot. I hated it of course, but I don't remember fighting it. Taking a shot 6 times a week is pretty brutal, especially since you have to leave it in over 8 hours. Nowadays, we have something called a sof-set, which means once the shot penetrates the skin, the needle is removed and just the soft plastic catheter remains in the body overnight. For the first half of my life though, it was a needle about as long as the first joint of a pinky finger about as thin as a mechanical pencil lead, in your thigh for 8 hours. I remember having some pretty nasty bruising on my inner thigh, and some nights I would have to hunt for a while before finding a spot that wasn't already sore to the touch.

It wasn't until I was in college and I actually met other Thalassemia patients in the new hospital I was going to that I realized how much my mom's diligence paid off. You could tell these other kids had something going on. I felt guilty, relieved, guilty for feeling relieved. There have been a few times that a nurse has walked in and assumed I was not her patient. I'm grateful of course, but it's still something I deal with. Looking normal, but leading some double life navigating hospitals, knowing my good veins, taking a shot every night. It doesn't embarrass me to talk about it, but I do wonder what other people think about it. Especially when it comes to dating, but that's a topic for another post.