On April 17, Ray Harris, of Owings Mills, will step out at Camden Yards Sports Complex, in Baltimore, for the first time as a participant of the National Kidney Association's Greater Baltimore Kidney Walk.
Harris, 42, who suffers from kidney disease and is currently on the kidney transplant list for the third time, is an outspoken advocate for kidney disease awareness and organ donation education. But he hasn't always been as open he is now. In fact, for several years, he kept his condition a secret from most of the people in his life.
In 1998, Harris was a healthy, happy natural resources police officer in his mid-20s.
"I worked for the Department of Natural Resources and I was healthy, happy, productive, outgoing, lovable person that I could be. It wasn't until I started having swelling in my feet and in my lower extremities and in my hands unexplained … weight loss, losing muscle tone, it was just milder stuff at first and I just brushed it off at first, being macho, not really thinking anything of it from I guess from playing sports you kind of want to just brush it off but they were persistent and I went to my primary care and he tried putting me on a couple different medicines, diuretics and they finally did a blood test and he told me my kidneys were failing and he referred me to Johns Hopkins Hospital."
A biopsy at Johns Hopkins Hospital led to a diagnosis of FSGS, or focal segmental glomerulosclerosis — a term describing scarring of the kidneys. According to the National Kidney Foundation, the disease occurs more frequently in African-Americans than people of other races.
When he heard the news, Harris said, he had no idea the severity of what he was facing.
"I had no idea what it was, I just knew that it sounded serious and I did not know where to go, what to do, who to talk to about it, and I told basically no one at the time except my family and really close friends, but it still ate at me, it wasn't very far from my every thought," he said.
When he was diagnosed with FSGS, doctors told him he would need dialysis within two years. About a year and a half later, he went on dialysis.
Ray had been dating his now-wife Lauren, to whom he's been married 12 years, when he received the diagnosis. Ray didn't tell Lauren what was going on, she said, and though she knew he was sick, she didn't know about his condition for quite some time.
"He would just kind of like keep that from me so I wasn't exactly sure what was happening I just knew that there were some issues going on with his health but I didn't know to what extent," Lauren said. "I didn't have an idea until he actually came out one day and told me and this was before we got married and I just indicated to him that I would be there thru thick and thin and just be there for the long haul to be as supportive as possible."
Ray worked for about five years after receiving his diagnosis, but was forced to retire at the age of 31 after suffering a stroke.
"I think that he saw it as maybe a weakness. He did not want to appear weak, especially in his position as a law enforcement officer," she said. "He just had to be very careful about the information that was revealed and he actually worked for at least 5 years [before] his diagnosis was eventually revealed to his place of employers,. So he was actually going to dialysis, putting in full time work hours … he just did not want to appear weak or sick or ill and felt that that would threaten his profession and his job. He's always been a very active person. He'd been a star football player in high school, very athletic, very intelligent, just very much a very go getter."
Ray was on dialysis for five years before receiving his first transplant in 2004. In 2005, the donated kidney became infected, causing him to go back on dialysis until his second transplant in 2007. The transplant worked until 2014, when he was diagnosed with renal failure.
Throughout this time, Ray kept his illness mostly to himself. In a Q&A written for the National Kidney Foundation, he described kidney disease as a "bully," one that "took away any life I had or thought about having."
But his view of kidney disease changed after he attended Transplant University/Live Donor Champion Program, a workshop at Johns Hopkins Hospital last year.
"It allowed me to talk about it and be comfortable talking about it because before, for 15 years, I talked about it very little to anyone other than my close friends and family, but it made it OK and comfortable to talk about kidney disease and kidney transplant, because a kidney transplant, you're not asking someone for a favor or for money or anything like that, it's an organ, it made it comfortable to talk about kidney transplantation and once you open up to people, they have questions for you," he said. "For years I knew that a donor donating a live organ would statistically last longer or fare better than an organ from a cadaver, but I just , I didn't feel comfortable talking about it in any situation."
The class led him and his wife to attend other conferences and lectures and learn all they could about live donation and kidney disease awareness.
"[The class] gave m a push, gave me a drive, a sense of helping myself out and also helping out all, everybody, because kidney disease, you don't hear a lot about it but it's a very, very terrible disease, condition that people need to know it."
For Lauren, the class offered more than just information.
"It impacted me because it really gave me a lot of hope and support to be able to just congregate and be with other individuals dealing with similar situations, just gave me a lot of hope for the best," she said.
Now, Ray and Lauren work to spread awareness in the community, both about live organ donation and the realities of kidney disease. Ray said he is especially trying to reach out to minorities, "because minorities are affected by kidney disease at a higher rate than any other group." But, he said, "Everybody should be aware of kidney disease."
"I work with another kidney organization called Urban Kidney Alliance and I've been on the radio a couple times talking about kidney disease awareness, prevention and education and also talking about the importance of … transplant awareness and testing and that was in October and February I was on the radio. And I spoke at the, I was a guest speaker at the Donate Life Gospel Festival at Union Baptist Church, that was in November," he said.
And, this year, Ray will be walking as part of the Davita Panthers, his dialysis facility's team in the National Kidney Foundation's Kidney Walk. Spreading the word about kidney disease is a primary goal of the National Kidney Foundation, and it's people like Ray, said Pattie Dash, vice president of mission advancement at NKF, that help the organization make a difference.
"Mission stories are what will help us propel ourselves into the goals that we're looking at," she said. "We have three pillars: awareness, prevention and treatment … to have Raymond actually be a spokesperson for our organization is incredible because he has lived with, he knows what he's gone through, he knows his journey and he can speak to what he's been through along the way and what he's learned."
Spreading the word about kidney disease is about more than just education — it's about saving lives.
"For every 10 people who have kidney disease 9 of them do not know that they have it," Dash wrote in an email.
Nearly 3,000 new patients are added to the donor waiting list each month, she said.
The difference between Ray of a few years ago and Ray now in terms of his willingness to share his story with others has been huge, Lauren said.
"It has just been amazing. I mean he has just evolved as an individual, as a spokesperson. He has really just broken out of the shell, he really has. He just was really … just really guarded and very secretive, almost ashamed of what was happening and not wanting to share it to being able to shut up about it," she said, laughing.
For Ray, it's just been a matter of turning the table on his bully, Kidney Disease, and reclaiming his own story.
"He is just determined not to be bullied by it ever again," Lauren said.
For more information about the Kidney Walk, visit www.kidneywalk.org.
For more information about kidney disease, visit www.kidneymd.org.