Living stone free
Chris Harris was 14 years old when he had his first kidney stone attack. He was playing football, offensive center, and thought he had pulled a muscle. The pain increased and his parents took him to the doctor where he was diagnosed with a rare genetic condition called cystinuria.
Cystinuria causes a buildup of an amino acid called cystine in the urine. This can result in the formation of cystine kidney stones. Cystine stones are often larger, harder and form more frequently than other kinds of kidney stones. Due to the larger stone size, cystine stones may be more difficult to pass, often requiring surgical procedures to remove.
Chris passed or had surgically removed 5 to 8 stones every year, for 45 years.
Born in North Carolina, the Harris family moved a number of times in Chris’ youth because his father was in the Coast Guard. A stint in Cape May, New Jersey, was followed by one in Ketchikan, Alaska. From Ketchikan, they moved to New York City – to Governors Island, off the tip of Manhattan Island.
“As a kid growing up on a military base in New York in the 70s, it was fun,” Chris will tell you with a grin. But as a teenager, he remembers missing out on things because kidney stones would land him in the Staten Island Public Health Service Hospital.
He was supposed to go to the New York Giants summer camp when he was 15, but he wound up back at the hospital trying to pass a stone. That one was particularly rough; the stone was moving so doctors chose not to operate. But it took him 3 weeks to pass the stone during which time the hospital had him on morphine. When Chris was discharged, he went through significant withdrawal symptoms.
“When I got out of the hospital, for three days I was sicker than a dog. I was freezing, muscle aches, terrible pain, everything. I mean, it was rough.”
“Find the doctor who will work with you, see what approach works best, and get stone free,” said Chris.
Later that same year, he had another stone and tickets to a Kiss concert that he refused to miss. He removed his IV, snuck out of the hospital, and made his way to Madison Square Garden. After the concert, his mom took him back to the hospital.
There is never an opportune time for kidney stones. Chris can mark major events by stone attacks. “When John Lennon was shot, I was in Public Health Hospital,” he said. He also had a kidney stone at his brother’s wedding. He watched the events of 9/11 take place on television in the morning and was in surgery having a kidney stone removed by noon. When work took Chris on the road, he would research where the hospitals were in case he had a stone attack.
“There for a while, my urologist knew that if he saw me coming through the door, he better open up his schedule because he was going to have to perform a surgery. He knew I was coming in because I had a big stone and could not pass it,” he said.
Chris has never met another person with cystinuria. But he has some advice to people newly diagnosed. “All these surgeries, they take a toll. Find the doctor who will work with you, see what approach works best, and get stone free.”
It’s because of this close collaboration with his doctor that Chris has not had a kidney stone attack in two years.