Fourth Doctor is the Charm: Kevin’s Journey to the Correct Diagnosis May 14, 2019 by Kylie Karley The picture of health in 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 suffering in 2002. The severe headaches left Mott 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 was also experiencing high blood pressure. After several weeks of taking routine blood pressure medication, nothing seemed to help alleviate his symptoms in any way. “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,” Mott recalled. He then searched for and found a new doctor, who unfortunately, 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,’” Mott explained through building frustration. Mott’s third doctor had similar responses to the first two doctors he saw, blaming the medication’s ineffectiveness on anabolic steroid use—although Mott repeatedly pointed out he had never used such substances. Discouraged, Mott’s uncontrolled migraines only worsened. One day at work they got so painful, he saw the only available doctor—at a women’s clinic—nearby. “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,” Mott said. Mott with his pre-transplant nurse at University of Chicago. Having the same bad luck with blood pressure medications, it was Mott’s fourth doctor who finally sent him to see a nephrologist. After a renal biopsy, a focal segmental glomerulosclerosis (FSGS) diagnosis was confirmed. Because of Mott’s honest relationship with his doctor and confidence to advocate for himself, he was not put on steroids right away. “She [my nephrologist] could tell I wouldn’t have handled the side effects [of steroids] very well. I’m a financial advisor, I always have to interact with people… having severe mood swings would not be good for me,” Mott noted. For the next 13 years, his kidneys continued to gradually spill protein. “I was monitored closely. We tried a lot of different drugs over that time, more than I can remember,” Mott said. Keeping quiet about his diagnosis for years, Mott remained steadfast, not letting 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 noted. Mott with friends on the day of his transplant. In 2015, Mott’s nephrologist informed him he was roughly two years away from needing to go on dialysis. She suggested talking to friends and family and beginning the process of finding a transplant donor. Within the next few months, Mott compiled an e-mail 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 diagnosis except for his spouse. “I didn’t necessarily ask anyone for a kidney through the e-mail, I just gave them permission to talk about what was going on with me,” Mott shared. A few people were tested, but they weren’t a match. A year later, Mott took to Facebook to get his message out. The combination of social media coupled with a friend’s strong advocacy eventually led Mott to his match. An old friend from college stepped forward, was a match, and was ready to donate. But Mott remained skeptical through every step of the process. Mott and his kidney donor, Ray. “I kept telling myself, ‘I’m going to be mentally ready in case he changes his mind, which I wouldn’t blame him.’ And, ‘I’m going to be ready in case something comes up and he can’t donate,’” he said. Around the same time Mott was waiting for his transplant, an older mentor of his unfortunately passed away after complications with a kidney transplant. “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.’ 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,” Mott said. It wasn’t until a few weeks before the transplant surgery that he was able to begin to let his guard down. His successful kidney transplantation took place on July 12, 2017. “[Afterwards] 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,” Mott acknowledged. FSGS reoccurrence post-transplant was a major concern for Mott’s doctors. A biopsy in 2018, one year after his transplant, confirmed the disease still has not come back. Mott still regularly visits his nephrologist every few months, in addition to going to the post-transplant center at a local hospital every six months and getting 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. Recently, one of Mott’s clients was also diagnosed with FSGS. While encouraging him along in his journey, Mott knew he wanted to take his involvement one step further: he joined NephCure as a formal volunteer in 2019. Mott with his fraternity brothers, visiting him one month after his transplant surgery. “I want to do whatever I can to help more people have an experience like the one I had. I don’t know why I was able to go from 2002 to 2017 and never had to go on dialysis. I wish I could duplicate that for other people,” Mott said. If you or someone you know has recently been diagnosed with a form of Nephrotic Syndrome and needs assistance in finding a specialist, please visit KidneyHealthGateway.com for a full list of Nephrotic Syndrome Specialists.