I was told I would likely need surgery every 6 – 12 months (Jen)
I was diagnosed with Cystinuria at the age of 16 in my final year of high school.
On diagnosis they had found that I had completely blocked off my left kidney and was turning septic, however after having surgery and getting a stent inserted my journey began.
My next surgery involved getting my stent removed and upon removal my urologist said in the week of having the stent that I had already formed new stones around this stent, that’s when they knew something was different. I was then diagnosed and told I would most likely need surgery every 6 – 12 months, however I’m so incredibly blessed to have gone 8 years without surgery.
My only treatment is drinking 3L’s of water a day, I’ve never let this disease stop me, all it’s done is made me live my life to the fullest and never take any day for granted