Isela K. lights up a room twofold—with her autumnal red hair, the color of changing leaves caught in golden hour, and with her bright and beaming smile. On the night of the twenty-fifth Renal Teen Prom back in January, Isela greets guests in the front hall of the Stars on Brand venue, dazzling smile on display and a soft yet direct voice to follow. “So great to see you tonight.” Assisting Lori Hartwell with managing the day-to-day operations and helping coordinate events, volunteers at RSN is Isela’s day job—she’s the grounding force to Lori’s ever-ideating artistic spirit. Her path there has been full of coincidence and magic.
It all started with a diagnosis. Isela’s sophomore year of high school was as normal as could be; she was a student athlete and felt healthy, “normal.” But during a routine physical that included a urine test, abnormalities were found. She was referred to a specialist at Children’s Hospital Los Angeles. Eventually a biopsy was done on her kidneys, revealing a diagnosis of IgA nephropathy, a disease causing deposits in kidneys which over time cause more and more inflammation, making it harder for kidneys to filter waste from the blood. In an instant, Isela’s life changed. “I didn’t feel sick, and being told I had chronic kidney disease felt so serious—like something for someone older than me.” Isela shares that one of the most surprising parts of the journey was that she had no symptoms—and, a lot of the time, this is common for kidney disease. It’s silent.
Isela was put on blood pressure medication and had to step away from her regular sports and exercise routines. With the new medication, Isela was dealing with fatigue and lightheadedness. The newness was frustrating, confusing. She was feeling fine before, and now it was the medication that was making her feel off? In the midst of all the change, a speaker came to her school, Notre Dame High School: Lori Hartwell. Lori shared about the Renal Teen Prom, which started at Notre Dame back in 1999. With her trademark charm, she recruited students to volunteer at the upcoming event—and swept into Isela’s life “just like a fairy godmother.” Isela continues, “I jumped at the chance to volunteer. I was excited to meet other teens that had kidney disease.” And after attending her first prom, Isela left with a sense of solidarity. Of hope. “I felt more in control of my future, my health—I wasn’t as scared of my diagnosis anymore.”
Throughout high school, Isela continued to volunteer with RSN, and the work informed her college years. She attended USC as a “Double Trojan,” first as an undergraduate student studying Non-Governmental Organizations (NGOs) and Social Change, then as a grad student mastering in Public Health. Isela completed her schooling last May, getting through grad school in an impressive two years, because she started early. “I had, I guess you would say, a ‘quarter-life crisis’ in undergrad,” Isela laughs. “I knew I was passionate about what I was studying, that I wanted to work in the non-profit world, wanted to help people. But there was a little pressure externally about the path I was going down. I hate that I let people get in my head, but once I saw there was a master’s for public health,” [at the time she was minoring] “I was like ‘woah.’ This would be really cool to pursue, and my passion was reignited.” Following up her NGOs degree with Public Health felt like the marriage between what Isela loves—helping people and working towards change in the health field. Something she’s personally passionate about.
When I ask how she got involved with RSN, Isela chuckles, and another “Lori Hartwell as the Fairy Godmother” story unfolds: “I needed to do an internship with a nonprofit organization during my junior year of college and of course, RSN came to mind. Luckily, I still had Lori’s email from when I volunteered.” Isela worked at RSN for a semester, had an incredible time, and then a few years later as she was starting grad school, was searching for a part-time job. “I texted Lori to ask if I could put her down as a reference for another job and she responded to the text with, ‘Do you want to come work for me?’”
Isela’s been at RSN for almost three years. “I feel so lucky.” She continues, “I’m grateful to have chosen a career path I’m so passionate about. It doesn’t even feel like work to me. Lori attracts creative people, and this job allows me to be creative every single day.” One of her favorite things is the art program at RSN where she gets together every month with some of her colleagues and volunteers, and everyone shares what they’ve been working on. It’s encouraged Isela to try new things. She’s always loved painting, and has recently gotten into crocheting, making jewelry (inspired by Lori, no doubt), and crafting tiny sculptures from air-dry clay. “My dad is super creative,” Isela shares brightly. “He has guided me through some woodworking projects. I’ve been able to build a few shelves!” And, during the Pandemic, Isela built her own hang-board to help improve her rock-climbing skills…revealing another part of her life, separate from her work with RSN and her history with kidney disease, that makes her shine even brighter.
When Isela decided to stop playing volleyball in high school, she took up discus instead as part of the track team—the event where you whip a heavy, metal disc in the air, as far as you can throw. The real ultimate frisbee. “I was recruited by the track coach with a few other girls. It was easier on me physically—and so fun.” Once Isela had been on her medication for a while, she started to explore other outdoor activities, including returning to hiking. “It’s an activity that I can feel full control over—how much energy I’m putting in.” And once she started college, Isela found her way into the rock-climbing world. “It’s so healing.” Before USC, she attended a community college for a year, which is where she took her first rock climbing class…and never looked back. These days, Isela climbs with her boyfriend on the weekend, as both a fun date and a stress reliever. She’s been outdoor climbing a few times, at Malibu Creek, Bishop, Joshua Tree, Stoney Point to name a few. “Rope climbing is my favorite,” she shares, even just “going outside and touching a rock” helps her. Grounding, getting away, unplugging, reconnecting with the natural world. It heals.
Camping’s another way Isela connects with Mother Nature. She and her boyfriend recently celebrated their three-year anniversary and camped at Pinnacles National Park (“one of the youngest and the smallest national parks I’ve ever been in!”) where they experienced cave hikes, a huge campsite, and burgeoning wildlife. They saw “adorable” California quail, wild turkeys, starling jays, woodpeckers, frogs, deer, coyotes and condors. And a snake on the trail. On their last night, Isela laughs as she shares that they were “victims of raccoon thievery,” as a sneaky critter stole their bag of cookies, ran up into a tree, and ate them as they watched. “I try to do at least two camping trips a year, and more if I’m able.” Outside of camping and climbing, Isela brings her nature connection into her home life too. She loves filling her space with houseplants and has been reading up on gardening. Most recently, a book on how to recycle food scraps!
Isela and her boyfriend met during the Pandemic over Tinder. For six months they talked, keeping it strictly virtual until tests were available, and things felt safer—then they finally had their first date. On that first date, it was clear to Isela that she could open up. Her boyfriend shared that he has Crohn’s Disease, a chronic illness affecting the GI tract. “I started telling him what had been going on with me, and it felt really natural. At this point, we’re each others’ biggest advocates and support system.” Though the two chronic illnesses are different, Isela and her boyfriend bonded over “medication adherence.” Both of them went through periods where, as stubborn, frustrated youth, they stopped taking their prescribed mediations. Isela sighs. “I know it was dumb. As a patient, you have one job: you gotta take your medication.” These days, both Isela and her boyfriend have a strong and healthy routine to take care of themselves.
Currently, Isela’s on a new medication. Originally used for diabetes, it’s been approved to treat chronic kidney disease, and she shares there haven’t been any crazy side effects. Seeing her nephrologist has become a less common occurrence—going from every month to once a year. The numbers are looking good. I ask her what she’s hopeful for in the future. “I want to continue to make a difference in people’s lives,” Isela responds cheerfully. “At this point, community is key. And the kidney community is who I feel connected to.”
Isela shares a few pieces of advice. Again, she implores, “take your medication!!!” And, too, “lean into your support system.” With a bit more firmness in her kind, gentle voice, Isela shares, “As a patient, a lot of the time we can feel like burdens to the people around us. But that isn’t true. I encourage people to lean on the loved ones around them. Call the people who are telling you they’re there for you! They’re not just saying it to say it. Really lean on them. This can be a lonely and isolating experience at times. Community is everything.”
The three words Isela would use to describe herself? Adventurous. Indeed. Whimsical—she shares, “I strive to live a life of whimsy. I’m curious. I won’t say no to new experiences…looking around my bedroom as we speak, with all these trinkets, you’d think a hobbit lived here.” And lastly, kind. Kindness practiced, and also learned, from the RSN team and from the kidney community, from her encouraging, loving family, from her boyfriend, and from that deep well within herself, perhaps pulled in part from nature, never-ending.
Maxine Phoenix is a freelance writer and she also volunteers for RSN.
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