Trish
11-10-2003, 10:34 AM
I was diagnosed 6 years ago with cystinuria at age 22. I recently had another attack and landed in the hospital. When I was diagnosed the first time I was almost in renal failure before it was found and had to have my left kidney cleared. The right kidney was full of stones and had very little function, and now it needs to be cleared too. I was hospitalized last Saturday and they found my kidneys were only functioning at 18%. I just had my left kidney cleared of a smaller stone that was in a bad place and have bilateral stents for a couple weeks - OUCH! Is all of this typical for cystinuria? I'm afraid that I wasn't well educated the first time around and probably didn't take very good care of myself, so this time I'm determined to get this under control! I'm drinking a ton of water and taking urocit-K. I was happy to find this forum, it's hard to find anyone to talk to who has even heard of this problem!