At age 27, Matt Douglas' kidneys are at the point of no return.
After five years of living with kidney disease the Northfield, N.J. man's only option is a transplant. He is past the "why me?" stage and now wants to raise awareness about kidney disease, especially the unexpected way his dire condition started in summer 2012.
"I noticed I was getting sick all the time," he said. He was thirsty, felt dehydrated and needed to urinate frequently.
Douglas thought his malaise might be heat-related since he was working outdoors for a landscaper. When the symptoms persisted, he went to see his primary care doctor who found he was excreting protein in his urine. Then a specialist delivered the bad news. He was in kidney failure with focal segmental glomerulosclerosis (FSGS).
"FSGS causes the filtration component of the kidney to become scarred," said Shivam Joshi, a nephrology fellow at Penn Medicine. Patients can have primary FSGS, where the cause is not known, or secondary, where the disease is the result of another condition like obesity or high blood pressure, he said.
"A lot of people with FSGS have no idea how they got it," said Joshi, who has not treated Douglas.
Others who have suffered with FSGS include former NBA Star Alonzo Mourning, Ed Hearn, a catcher with the 1986 World Series Champion New York Mets, and actress Bijou Phillips, daughter of musician John Phillips.
Doctors were not able to pinpoint the cause of Douglas' condition. There was no family history, though doctors say it's possible he had an underlying kidney condition since birth but no symptoms. His physicians put him on a medication they hoped would slow the disease progression so he wouldn't need a transplant for 15 to 20 years, he said.
"It is a pretty major hit, being so young and active," Douglas said.
Growing up, Douglas played on soccer, basketball and baseball teams, took up tennis and golf for fun and danced with the Metropolitan Ballet Academy and Company in Jenkintown for 12 years. Later, he volunteered with the Elkins Park Fire Company, while working part-time and taking sports medicine and nutrition classes at Montgomery County Community College. He planned to become a physical therapist.
A tall, lanky guy, Douglas began lifting weights at age 16 to build up muscle. Even with all his activities, he wasn't bulking up the way he wanted, so he also began using an over-the-counter protein supplement in shakes, he said.
"I probably overdid it with the protein shakes," Douglas said. He never received any guidance on how much powder to add to the drinks, which he made about four times a week. The extra protein may have forced his kidneys to work overtime, his doctor later told him.
Had he realized the danger he was in, he would have consulted with a nutritionist and found another way to build muscle, Douglas said.
There is no evidence to suggest protein shakes could lead to kidney disease in otherwise healthy people, said Joshi. But, those with kidney disease may do themselves harm by eating a high-protein diet, he said.
Joshi recommends speaking with a physician before adding supplements to your diet.
"Any time people take these things, especially when they are not regulated or supervised by a physician, they can run into trouble," Joshi said.
In May, Douglas married Kate, his coworker at the Dr. Joy Miller Elementary School in Egg Harbor Township. The couple are both teacher's aides for special needs students. Two weeks after their wedding in May, he took sick leave to go on dialysis. The school has started a Miles for Matt fundraiser to help him with living and medical expenses, he said.
Douglas is also active on the online support site Get Loud for Kidneys.
He now spends his time resting at home, running errands or at doctor's appointments while he waits for news about a transplant. His mother, Melissa, 63, is a potential match, he said.
"I'm perfectly happy doing it and hope I can," said Melissa, who is undergoing testing to see if she is healthy enough to donate.
Since there is a possible genetic component to Matt's disease, his sister Willa, 20 and a student at Temple University, will not be a donor, said Melissa. Her husband John, conductor of Temple University Opera Theater, died in 2010.
"I would hate for [Willa] to give one of her kidneys away and then find out she has the same problem," said Melissa. Both she and Willa are currently volunteering with the Jefferson Kidney Champion Program, to help educate people about kidney donation.
"We are just trying to get the word out about kidney health and living donors," said Melissa.