Damian talks about living with cystinuria
When Damian was 18 years old and a freshman in college, he woke up with stabbing pain on his left side. He skipped class and stayed in bed, only getting up to use the bathroom. Eventually he felt better. In retrospect, he thinks now that was his first stone.
Damian lives with cystinuria, a rare genetic disease that causes kidney stones due to the buildup of cystine in the urine.
After college, he began passing (and collecting) more stones. When a new job meant he finally had health insurance, Damian handed his new doctor a sack of cystine stones. It was, of course, received with shock.
After a referral to a urologist, numerous test and images, a large staghorn stone was found occupying much of his left kidney. “It was pieces of that stone that were breaking off that I had been collecting,” said Damian.
He was sent to the University of Kansas Health System in Kansas City for a percutaneous nephrolithotomy, a procedure to remove kidney stones that can’t pass on their own.
“I was lucky that there was a doctor there who knew a lot about cystinuria. He gave me a lot of information about how to manage it. I was able to do the surgery to remove the stone; that was pretty serious surgery.”
For Damian, the day-to-day management of the condition involves drinking a lot of fluids each day, avoiding certain foods, monitoring the pH of his urine, and taking medication that helps decrease the amount of cystine in the urine.
“There are certain activities I just can’t do – like extreme environment events – because I always have to have water, or I’ll start forming stones.
Understatement: Stones are not convenient.
“It’s like they’re choosing the most malevolently inconvenient times of your life to show up,” Damian said recalling a story of one particularly ill-timed stone. When his son was born two weeks late, he and his wife felt their life scheduling was already thrown way off. When their son was about a week old, the new parents had arranged for a professional photographer to take some baby pictures.
“So, we were taking pictures of him in a little crib, and I’m standing there and my side started twitching. It had been a long time since I felt that. My son a week old and my wife still recovering, suddenly I started to pass a stone. It was pretty overwhelming. It wasn’t a staghorn stone, but it was big and it wasn’t coming out. I had to have another percutaneous nephrolithotomy to remove it. It had to be just at that time right then and there.”
His advice to people newly diagnosed with cystinuria? The right doctor makes a big difference.
Cystine stones are typically larger and harder than other types of kidney stones and often require medical procedures to remove. Learn more about cystinuria at preventcystinestones.com.