I have lived with cystinuria my entire life.
Around age 2, I was misdiagnosed with cystenosis. At age 20 my blood pressure was through the roof and it was found that I had hundreds of tiny stones and a gigantic (larger than a Australian 50c piece) staghorn stone in my right kidney.
After cutting me open to clean out my kidney I was left with a huge scar. I grew stones in my right kidney multiple times a year for many years on and off and have had more lithotripsy and stents than I can remember.
I think I have have passed enough stones to pebble-crete a driveway!
At age 47 I haven’t had stones for a few years and consider myself one of the lucky ones as it used never affected my left kidney. I have 2 siblings with this disease also. It can be debilitating but it’s a pain I’m used to now. My pain threshold is a lot higher than a lot of people I know. So far my children are showing g no signs of having this genetic disease. Fingers crossed it doesn’t affect them