I had my first photopheresis treatment today. The flying to Kansas City, the port placement, and the recovery seemed to be the worst of it. Then there was the waiting. A group aphaeresis experts had to coordinate their schedules and come in from Chicago, Phoenix, and Round Rock to oversee my first treatment. I showed you in an earlier post what the port looks like. Well here's what the port looks like in me. I circled it, because the port is actually pretty easy to miss. It's been a blessing how inconspicuous my little Toto (thanks Kyle!) looks, and cosmetically, I couldn't be happier with the results. But now it was time to put Toto to work.
The needle used to access a vortex port is large. And it thick. And it's scary. I'm a little girl with little veins who is used to being poked by butterfly needles. So this big thing coming at me caused a lot of anxiety. The nurse tells me to take a deep breath in, so I do, and POW (see video below) right into to chest. My reaction was far less dramatic, however, that's how I felt on the inside. The amount of instant pain took my breath away. I couldn't speak, cry, inhale, or exhale. And the worst part about it was that they missed! The entire needle stab had to be done once again. After that trauma and some ativan, was able to relax. The procedure was long but went smoothly from there. I'm tired but not as exhausted as I thought I would be. I feel blessed to have made it through this first day successful.
Toto has done it's job for today. And he will have to come through tomorrow. I was given lidocaine to put on the port tomorrow so I will be numb and not have to experience the unreal pain I felt this morning. But in the end, if pain, sticks, and stabs are what it takes to get me well, bring them on all over my body. I'm 100% committed to this treatment. I have confidence in my doctor and the sweet, gifted nurses in aphaeresis, I feel comfortable asking questions, and I am at peace with my decision. This small step forward has helped me see more of the future I imagine which includes graduating, nursing school, a husband, a family, and helping other like me for as long as I'm blessed to be on this earth.