Kevin Mott’s Kidney Disease Journey
He was in seemingly perfect health amid the rise of his financial advising career — it was hard to break Kevin Mott’s focus or determination. The only thing that generated a hiccup: the splitting migraines he started experiencing in 2002.
These severe headaches left Kevin with no option but to seek aid from a medical professional. The first doctor he saw told him that in addition to the migraines, he also had high blood pressure. Following the doctor’s recommendations, Kevin took routine blood pressure medication for several weeks, but it failed to alleviate his migraines in any way. He headed back to the doctor to voice his concerns.
“That first doctor, after seeing me a couple of times, said, ‘You have to stop eating so much fried food and canned goods. That’s probably why the drugs aren’t working for you.’ I explained to him that’s not how I eat, but he kind of blew that off,” Kevin recalled.
He then searched for and found a new doctor, who, like the first, seemed to brush off the lack of effectiveness of the blood pressure medication.
“I went to the second doctor and same thing, his response was, ‘If you’ve ever used cocaine, maybe that’s affecting the effectiveness of these drugs.’ I was like ‘Okay, I’ve never used cocaine, I’m going to find another doctor,’” Kevin explained through building frustration.
The third doctor he visited had similar responses to the first two, blaming the medication’s ineffectiveness on anabolic steroid use — although Kevin repeatedly stated he had never used such substances.
Kevin’s uncontrolled migraines only worsened. One day at work, the pain became so severe that he decided to see the only available doctor nearby: a physician at a women’s clinic.
“That was the first time I had an actual conversation with a doctor. I felt like she was listening to me and asking me questions about my lifestyle,” Kevin said.
Explaining his bad luck with blood pressure medications, this doctor, the fourth doctor Kevin visited, finally sent him to see a nephrologist.
The nephrologist ordered a kidney biopsy, which confirmed a severe, underlying diagnosis that the previous three doctors had failed to discover: focal segmental glomerulosclerosis (FSGS). Because of Kevin’s honest relationship with his doctor and confidence to advocate for himself, he was not put on steroids right away.
“[My nephrologist] could tell I wouldn’t have handled the side effects [of steroids] very well,” Kevin said. “I’m a financial advisor so I always have to interact with people… having severe mood swings would not be good for me.”
For the next 13 years, his kidneys continued to gradually spill protein, a hallmark symptom of FSGS.
“I was monitored closely. We tried a lot of different drugs over that time, more than I can remember,” Kevin said.
Kevin remained quiet about his diagnosis for years, refusing to let FSGS interrupt his lifestyle or career.
“For me, it was just doing whatever I could to take care of myself. Just trying to strike that balance between being responsible about my health and making sure that I’m enjoying life,” he said.
In 2015, Kevin’s nephrologist informed him he was roughly two years away from needing to go on dialysis. She suggested talking to friends and family to begin the process of finding a transplant donor. Within the next few months, Kevin compiled an email to send to a group of 25 friends and family members. Up until this point, no one knew about any of his health problems or kidney disease diagnosis except for his spouse.
“I didn’t necessarily ask anyone for a kidney through the email,” Kevin shared. “I just gave them permission to talk about what was going on with me.”
A few people offered their kidneys and were tested for compatibility, but they weren’t a match. A year later, still with no success of finding a compatible donor, Kevin took to Facebook to get his message out.
And this tactic worked: social media, coupled with a friend’s strong advocacy, eventually led Kevin to his living donor.
An old friend from college stepped forward, was determined to be a match, and was ready to donate. But Kevin remained skeptical through every step of the process.
“I kept telling myself, ‘I’m going to be mentally ready in case he changes his mind, which I wouldn’t blame him for.’ And, ‘I’m going to be ready in case something comes up and he can’t donate,’” he said.
Around the same time Kevin was waiting for his transplant, an older mentor of his passed away after kidney transplant complications.
“When he died, it was a shock, but the thing I focused on was ‘I’m so lucky I’m this age getting a transplant as opposed to his age,’” Kevin said. “So anytime anything popped up, I always tried to think about the positive things I had going in my favor that a lot of people going through the exact same situation didn’t have.”
It wasn’t until a few weeks before the transplant surgery that he began to let his guard down. And on July 12, 2017, Kevin finally received his kidney transplant — with perfect success.
“[Afterward], my friends stepped in and took over my life. They planned everything for me. At that time, I was single, and they really helped make plans of how I was going to take care of myself, get to the doctor and all that stuff,” Kevin said.
Despite the success of the initial surgery, Kevin’s doctors were quite concerned with FSGS reoccurrence post-transplant. A biopsy in 2018, one year after his transplant, confirmed the disease hadn’t come back, and he remains FSGS-free to this day.
But Kevin continues to keep a close eye on his kidney health. He still regularly visits his nephrologist every few months, has appointments at a post-transplant center at a local hospital every six months, and gets lab work done every month.
“I’ve always focused on how lucky I am through the whole process versus other people. For example, many of my family members don’t have access to the same quality of healthcare that I do. I’m fortunate to have had the opportunity to go to four different doctors until I found the one I liked,” he said.
After Kevin’s transplant, one of his clients was also diagnosed with FSGS. While supporting him in his journey, Kevin realized he wanted to take his patient advocacy one step further: he joined NephCure as a formal volunteer in 2019. Since then, Kevin has even further expanded his involvement, becoming a volunteer regional leader and joining NephCure’s Board of Directors in 2020.