'What does a kidney patient look like?' Sometimes, a retired Army soldier

While the American Kidney Fund's annual gala, The Hope Affair, is a celebration for the entire kidney community, this year it was also a personal celebration for Vaughn Reynolds, marking the first anniversary of his kidney transplant. 

Shortly after the gala, Vaughn showed a close friend some photos from the event, explaining that it was an event for kidney patients, caregivers and health care professionals. His friend mistakenly thought that Vaughn's wife was the one who had had the kidney transplant. When Vaughn cleared up the confusion, his friend said, "You don't even look like a kidney patient." 

"And I said, 'What does a kidney patient look like?'" said Vaughn. "You never know. You can't tell from looking on the outside."

His friend's surprise is understandable considering that awareness of kidney disease is low, including who can get it. Vaughn is a military veteran and a retired federal law enforcement officer, serving in the U.S. Army for 21 years and as a federal air marshal for 20 years. Both careers required adhering to certain fitness standards, which Vaughn had no trouble meeting, at one point regularly running between five and seven miles a day.

So, when doctors found blood and protein in his urine, Vaughn didn't think much about it. "As early as I can remember, they always saw blood in my urine," said Vaughn. "When I was young, [my mom] took me to the doctor [and] she kept saying there's something wrong here, with this blood in his urine and no one could explain it. And this kept going on and on and on. I was told as I got older, you just might be an anomaly."

Years later in 2012, Vaughn was back at a nephrologist's office because of blood and protein in his urine. To get any additional answers, the doctors told Vaughn he would need to do a biopsy of his kidneys. 

"I said, 'But Doc, I feel fine.' I was still running. I was still training because I had become an air marshal and I was meeting the standards of a class three flight physical," said Vaughn. So, Vaughn opted not to get the biopsy. "If it's not hurting me right now, it's not bothering me, I'm not going to bother it because I had had it all my life."

That changed on Feb. 23, 2023, when Vaughn was diagnosed with stage 5 kidney disease, also known as kidney failure. Vaughn was shocked.

"I said, 'You're joking. This can't be happening,'" said Vaughn. "I said, 'Check it twice,' [and the doctor] said, 'We checked it three times. There is no doubt you have all the classic signs and symptoms of end-stage renal disease.'"

Vaughn then underwent additional medical testing at Walter Reed National Military Medical Center. "When I finally had a kidney biopsy done, the doctors there asked me if I had been involved in a training accident in the military or a car wreck or something because my kidneys were completely scarred," said Vaughn. The glomeruli (the tiny filters in the kidneys that clean your blood) in Vaughn's kidneys were so scarred they were not working at all. 

Given these results and Vaughn's previous unexplained blood and protein in his urine, the doctor recommended he do genetic testing. After decades without answers, the results finally revealed what was wrong and Vaughn was officially diagnosed with Alport syndrome.

Alport syndrome is a genetic disease caused by problems with three genes that control the way certain parts of your body are shaped. When there are problems with these genes, parts of your kidneys, ears and eyes do not grow correctly. Alport syndrome can cause hearing loss and eye problems, but it always causes kidney disease. Since finding out his diagnosis, Vaughn has encouraged his family members, including his daughters, brother and nephews, to get tested as well. (At this time, they are still waiting for their results.)

Although Alport syndrome always causes kidney disease, it does not always lead to kidney failure like it did for Vaughn. In his case, taking non-steroidal anti-inflammatory drugs (NSAID's) also increased his risk. 

"One thing in the military we called Motrin [a type of NSAID] 'vitamin M' or 'Ranger candy' because they give it out like crazy," said Vaughn. "And I was taking a lot of it for like knee pain, neck pain, all the injuries from government service and stuff. And that's kind of how it all cycled itself through and I just burned my kidneys out completely."

It was difficult for Vaughn to accept his diagnosis. "Being difficult and hard-headed, I said, 'I can run from this. I can run my way away, I can train my way away, I can sweat my way away from it,' even after I was diagnosed," said Vaughn. "I still was trying to fight up until my dietitian at Walter Reed slammed her hand on the desk and said, 'Mr. Reynolds, I need you to pay attention. You cannot run from this. You can't train away from it. You have to accept it.' And that was very sobering for me."

After his stage 5 diagnosis, Vaughn was put on the transplant waitlist, working hard to lose weight, get all the vaccinations and do all the bloodwork that was required to be transplant eligible. "If I'm going to do this, I'm going to push it real hard," said Vaughn. He also started learning how to do peritoneal dialysis (PD), a type of home dialysis Vaughn decided was the best option for him. 

On Oct. 17, 2023, Vaughn was doing his weekly training on PD at Walter Reed, when his transplant nurse, Gina Whitney, stopped in. She asked if he had any plans for the day and when he replied that he didn't she said, "Great. We have a kidney for you." 

Vaughn quickly began the process of draining the fluid so he could receive his transplant. "In the midst of all this, that's when the sheer, just overwhelming panic, joy, fear, everything came over me," said Vaughn. After calling his wife, his pastor Josh Todd and his mentors from Kidney Solutions, Armand Halter, Kent Bressler and Shannon Mulroy, Vaughn received a new kidney.

"All I know is my donor was a 40-year-old woman from Tennessee," said Vaughn. Besides a kidney, the two also shared another common trait: they were both veterans. "One of her last requests was that she wanted all her organs to be transplanted to military veterans… so all her organs went to military veterans. And the other amazing factor of it is my roommate in the room beside me, he got one of the kidneys and I got the other kidney on the same day. He named his kidney, 'Tennessee Whiskey' and mine is 'Tennessee Titan.' And we are kidney brothers and fellow kidney warriors."

One year later, Vaughn says he and Tennessee Titan are doing great. And he has also become a passionate advocate and educator for kidney disease. He is currently working on organizing a living organ donor registration drive and is willing to answer any questions from anyone – even stopping to talk about kidney disease with a fellow veteran at the commissary. "This is a passion for me now and I believe it can benefit anyone and everyone," said Vaughn.

Vaughn encourages others to know their family history, get a physical every year and be an advocate for themselves. He also said that finding organizations like the American Kidney Fund, Kidney Solutions and the C. Alan Foundation helped him feel "comfortable that I wasn't alone in this." "Anyone who's out there suffering from chronic kidney disease stages 1 through 5? You're not alone," said Vaughn. "There is someone who you can talk to. There are groups out there you can talk to and stuff. Start from today… Focus on what you have and just keep pushing forward on that."