Quin Taylor’s Kidney Disease Journey How was your overall health prior to your diagnosis? I was a very healthy teenager. I was overweight but didn’t have any health problems. It wasn’t until I started swelling, excessively urinating, and experiencing extreme fatigue for about 6 months prior to being diagnosed that I had any health problems. Were/are you pro-active about your health? When I was younger, I wasn’t extremely proactive about my health. I tried losing weight for vanity reasons, but I didn’t have any health problems, so I didn’t think much of it. Now, I’m VERY proactive about my health. I eat healthy, exercise, drink water only, and take my meds and vitamins daily. Anytime something goes on that is out of the norm, I always reach out to my care team to let them know. I follow up with my dietitian regularly for weight management. When and how were you diagnosed with FSGS? In 2003, I went to a doctor to be placed on a weight loss program because I gained quite a bit of weight. After giving blood for labs that day, I received a call from the hospital in the evening saying I needed to go to the ER immediately because my kidneys were failing. Shortly thereafter, they called back to say I didn’t need to go to the ER, but that I needed to follow up with a nephrologist sooner rather than later. How did you feel when you were diagnosed with kidney disease? It was the first defining moment of my life, a moment that I will never forget and changed my entire life as I knew it. I knew plenty about kidney disease because my dad was a dialysis patient, but it was very different becoming the patient myself. I don’t even know if I fully processed what everything meant because I was only 20 years old. For a while, I just didn’t talk about it and acted almost like it didn’t exist, because I just wanted to live life like my friends and like I’d been used to. I had no idea how my life would change or what to even anticipate what life would become. Looking back, what do you wish you had known about kidney disease prior to your diagnosis? Even knowing about kidney disease prior to being diagnosed didn’t prepare me for learning what kidney disease would look like for me. It was liking learning about kidney disease all over again, but adding myself to the equation. What were/are your most bothersome symptoms and how did they impact your life? The swelling and fatigue!!! My legs were covered in scabs because my skin would tear from the extreme swelling. The fatigue would cause me to sleep for 16 hours a day — I couldn’t make it to class or be productive. I would literally wake up, eat, stay up for a bit, fall back asleep, and repeat until bedtime. The frequent urination was bothersome only because I was running to the bathroom every 20 minutes, but eventually I got used to it. What has your path through the healthcare system been like? Have you experienced inequity? I think my experience has been a bit different compared to others who look like me because I had access to great health insurance, and I was also very familiar with the healthcare system so I knew what type of care I should receive. With that being said, being in a big city and receiving services in certain demographic areas, it’s clear that these facilities did not receive the same amount of financial or physical resources as facilities in more affluent areas. Often, patients would request to be transferred to facilities or hospitals in areas that were predominantly white because they knew it would translate to better care for them. There have been times I’ve had healthcare professionals talk to me a certain way because of how they perceived me, because I spoke with a certain accent or because I may have looked a certain way. I know what it’s like to be in facilities that lack supplies because they are in poorer neighborhoods. I know what it’s like to not be acknowledged because it’s assumed I’m not proficient in my care and don’t have anything to add to the conversation. How has your diagnosis impacted your family? I know it impacted my parents. My mother was devastated because her husband and only child were both diagnosed with end-stage kidney failure, and she feared losing us and what might happen to us because we were on dialysis. My father was upset because he felt like it was his fault that I ended up with kidney disease once it was determined that it was hereditary. I didn’t share it with my extended family for years for fear of being judged due to religious beliefs they have. Now that kidney disease has impacted more of my family, they are much more receptive and have changed some of their views. Knowing that Black Americans are 7 times more likely to develop kidney disease, what would you like to say to your friends, family, and community? Kidney disease is real, it does not discriminate, and it’s serious. It can be fatal if you don’t educate and empower yourself. It doesn’t go away if you choose to ignore it — it just gets worse. Please be proactive about your health and your life. Preventative care can be the difference between sustaining your kidney function or needing kidney replacement therapies such as dialysis or a transplant. If you know someone who may be at risk, please encourage them in love to make their health a priority also, and get a thorough check-up. Why do you share your story? What do you hope people reading your story will gain from your experiences? I share my story to let others know there is life if you’re diagnosed with a chronic illness, especially kidney disease. I want others to know that they’re not alone in managing this life. Being diagnosed with kidney disease does not come with a handbook or a blueprint. There are no instructions on what you’re supposed to do with your life afterwards, but you will find your journey through it. If I can give one person hope that there is light on the other side, then I’ve fulfilled my purpose. I hope others gain the perspective of gratitude. That sounds weird, but choosing to embrace the life that was given to me helped me to become grateful for everything that life has put before me. I won’t say it’s been easy or it’s been a life filled with unicorns and rainbows, because it hasn’t, but it has been worth it. It’s made me who I am today. It’s given me the voice that I use in hope to encourage and empower others. It is a part of my purpose. I want others to understand that although it may seem that you’re living in darkness, there is light at the end of it… you just have to endure the race.