Living with cystinuria
My name is Mandi Payne and I have been suffering from cystinura for 5 years. Throughout those years I have undergone around 20 surgeries and pain every single day. I want to share my story because education is one way to help find a cure.
I have spent the almost all of June in the hospital, or bed rest, due to surgeries, infections and a boat load of pain. I often have to turn down invites to do fun things with my friends and most of the time they can’t comprehend why. People don’t understand, because it’s not something you can see on the outside. On the outside I look like a healthy young adult but on the inside my body’s breaking down.
As a 21 year old collegiate athlete, volleyball is my life. Living with cysinuria, I’ve missed practices, games and even playoffs due to surgery. Everyday I wake up and have to worry how bad my pain is going to be, and if it is going to effect my playing.
As this pain constantly pushes me to work better, it also brings me down knowing that If I didn’t have cystinura, I would be a larger impact on my team. I am so grateful for the support I get from my coach and teammates, but nobody really understands what it’s like. It’s hard to put in words how it feels to play a full game with a 20mm kidney stone inside of you.
Cystinuria taught me that even on the worst of days, life is worth living. I strive to make all of my good days outweigh the bad ones, and live life to the fullest. It has also taught me that everyone is going through something, and whatever it is, its no bigger or smaller than the person sitting next to you. Anything someone is suffering through is valid.
I spend everyday hoping for a cure and praying for others who go through this as well.