I was born in 1992 with Polycystic Kidney Disease. At just seven months old, my right kidney had to be removed because it was completely covered in cysts. Due to complications from my urethra not developing properly, which caused drainage issues, I needed diapers until I was nine years old, when I underwent a bladder augmentation using parts of my lower intestines to create a 'neo bladder'.
My first kidney transplant happened when I was 13; my aunt generously donated her kidney, and my failing left kidney was removed. Unfortunately, two years later, I needed to start dialysis. Another two years after that, I received a second transplant, this time from a deceased donor. Sadly, that kidney failed two years later in 2012, around the same time I developed Parvovirus. I have been on dialysis ever since.
Looking back, my first transplant failed partly because I struggled with swallowing pills. Instead of asking for help, I hid them or threw them away. With the second transplant, I tried my best to follow all the instructions for the first year. However, depression set in, and I stopped caring for myself as I should have. I became inconsistent with my medications, sometimes taking them, sometimes not, and eventually started hiding them again.
It's important to understand that my physical and mental development was significantly impacted by my health challenges. My nephrologist explained to my mom and I that I would process and understand things a bit more slowly than others. Even now, at 33, I feel mentally about ten years younger. This isn't an excuse, but it helps explain some of my past actions and challenges. It certainly doesn't mean I can't be mature when necessary!
School was also difficult. I was often sick, needing to be picked up early or missing days entirely due to hospital stays. I didn't learn social cues as easily as my peers and faced bullying because I was different. Adults were always easier for me to talk to. Despite having a 504 plan, my mom frequently had to intervene throughout middle and high school because staff weren't always following it.
But my childhood wasn't all hardship. Before my left kidney began to seriously fail, my family made sure I had wonderful experiences. We went to Disney World twice, visited amusement parks and fairs, and even traveled to North Carolina for a NASCAR race at Charlotte Motor Speedway, where Make-A-Wish arranged for me to meet my favorite driver. I spent countless hours at my local NASCAR track, befriending several drivers who would even call me when I was in the hospital.
Throughout everything, my mom has been my rock. She's worked as an EMS provider, an LNA, in law enforcement, and as a volunteer firefighter – she's done it all. She has been my fiercest advocate, my mentor, and my teacher, showing me how to navigate the complex medical world and stand up for myself politely but firmly. We share a twisted sense of medical humor and have even caused some lighthearted shenanigans during hospital stays. I truly wouldn't have made it this far without her incredible support.
Support this cause by donating to The Kidney Project.
