Sue’s Story

Written by Sue Baker

I am brand new to the world of Cystinuria! A “wonderful” world of stones, WATER and nocturnal voiding. It’s great to know when in the middle of the night when I am up drinking my water- that I am not alone!! All of you are out there doing the same thing.

Let me tell you the story of how I became part of this group. I am 43 years old. I was born with this disease, unaware of it until now (guess I’ve been lucky). I have passed many kidney stones in the past. The doctors weren’t too concerned so neither was I. I knew the signs so I just passed them. Up until last year (2/95). I was at work (I’m a special education TA) when I experienced back pain so severe that I took my first ambulance ride to the hospital. A cat scan revealed that my left kidney had shrunk and appeared not to be functioning. More tests show that I have a large staghorn stone and a “strange” blockage in my ureter. They assumed this was cancer. So now I am facing my first surgery to remove my kidney and also cancer. Don’t think I wasn’t scared.

The surgery was very painful as a lot of you know. My “cancer “was Cystine!! They saved half of my kidney. My urologist, Dr. Goldman, was a very caring and compassionate man. He also was very excited. I was his first case of cystinuria in his 40 years of practice. He didn’t really have too much information for me to read.

I was happy to learn about the support group. I have learned so much more. Up to this point I am not sure if I have any new stones or not. But I am keeping a positive attitude and I, as with the rest of you, KEEP DRINKING!!

I would love to hear from each and every one of you. Let’s compare stories.

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