Nina is an 18-year-old who loves spicy foods – hot sauce, spicy noodles, spicy catfish, hot links, and hot chips. Anything spicy, really.
And Nina herself is also a little spicy.
When Nina fell critically ill two weeks into her senior year of high school, she had no idea how much she'd have to give up, including many of the foods she enjoyed. Luckily, during the many weeks she spent as an inpatient in the Nephrology Department at Children's Health℠ in Dallas, multiple members of her care team repeatedly went to bat for Nina. They also taught her how to advocate for herself, a skill she can use for the rest of her life.
A rough start to her senior year
Nina had barely learned her teachers' names when she started to feel sick, a kind of sick that felt different and scary.
"I was getting really hot. And I was throwing up and shaking," she remembered. "At first they thought it was the flu and they gave me antibiotics. But a few days later, I started throwing up blood. That's when I went to the ER at Children's Health and they admitted me to the hospital."
In the hospital, doctors worked quickly to analyze Nina's symptoms and run tests that could give them answers about what was happening. Blood tests and other diagnostic exams revealed that she needed treatment – quickly.
The care team shared several pieces of news that terrified Nina:
- She had an autoimmune disease called lupus and another autoimmune condition called ANCA vasculitis
- Nina's kidneys were failing and she needed dialysis to survive.
Nina's doctor, Elizabeth J. Brown, M.D., Pediatric Nephrologist at Children's Health and Assistant Professor at UT Southwestern, and Rhyan Brown, APRN, PNP-PC, Nurse Practitioner, knew Nina's health was in grave danger.
Nina's medical team diagnosed her with kidney failure caused by lupus, a disease that tells your body's immune system to attack your own tissues and organs. She needed dialysis to take over the job her kidneys could no longer do – cleaning her blood of waste products and extra water. She also needed strong immune-system suppression medicines for her two autoimmune conditions. The rheumatology team at Children's Health partnered with her kidney team to manage the medications and treatments for her autoimmune disease. Dr. Brown and Rhyan Brown were there to also educate her about dialysis and stress the importance of antihypertensive medicines to keep Nina's blood pressure from getting dangerously high and causing seizures.
Nina's condition was life-threatening. But she kept asking the staff, "When can I leave?"
Nina told the care team she had a job she needed to get back to – as well as classes, friends and senior pictures. Gently, they helped her understand that her biggest priority, and theirs, was her health.
And, just like that, her vision of her senior year drastically changed. Instead of having lunch with her friends, Nina was learning a lot about hemodialysis.
"Normally, your kidneys clean your blood 24/7, removing the waste products and water we don't need. With hemodialysis, we hook you up to a special machine to do all that – outside of the body. And because we have to do a 24/7 job for just 3 to 4 hours at a time, hemodialysis can be intense and make you feel nauseous or very tired," said Dr. Brown.
Saying "yes" to help
During Nina's initial weeks in the hospital, Mary Margaret Fair, Clinical Social Worker, and Caroline Moher, Child Life Specialist, came around daily to visit. They brought her books and journals to make the long hours of dialysis – and having to stay in the hospital – a little more tolerable. More importantly, they helped her learn to navigate the hospital, understand what was happening medically and begin to cope with the many emotions she was experiencing.
Nina admits that she was very closed off at first, calling herself an "angry bird." But Caroline and Mary Margaret kept showing up.
"Nina is sassy and strong-willed but so fun to be around," said Mary Margaret. "Somehow, we managed to get through to her – and then, one day, she really liked us."
Nina began to open up to Mary Margaret about hardships in her past and struggles with depression. That's when Mary Margaret and Dr. Brown turned to the nephrology team's dedicated psychologist. She knew that Adrienne Iva Anderson, PhD, Pediatric Psychologist, had the skills and expertise to help Nina process and accept her new diagnosis and work through the complicated traumas that came before lupus.
"At first, I didn't want to meet with Dr. Anderson. I'd never done anything like that. But as I did it more and more, I really liked it," said Nina. "Every time I'd talk to her, it would give me a breather. And now, she's my girl."
Dr. Anderson helped Nina understand that she had a right to feel the way she did. And she helped her realize it wasn't her fault that she was sick.
"I told Nina, I'm just one of a million people coming in and out of your room. But my goal is to be the main person that advocates for you – and to give you some sense of control back," said Dr. Anderson.
The importance of defining goals and having an advocate
Working together, Mary Margaret and Dr. Anderson helped Nina define her goals and maintain as much control over her life as possible.
Goal number one was to graduate high school – on time and in person. They talked to her school to make sure her teachers understood that Nina had a serious medical reason for not being there. And they helped her keep on top of her work.
Her second goal was to become the first member of her family to attend college. So Dr. Anderson and Mary Margaret helped her navigate the application process. Mary Margaret even wrote her a letter of recommendation, describing Nina's natural leadership abilities, her resiliency, and how she tirelessly worked to graduate on time despite her health challenges.
Nina had trouble believing what Mary Margaret wrote was true. But her acceptance letter to the University of North Texas forced her to consider that the person Mary Margaret described may actually be the person that she is.
Being her own advocate
As Nina allowed herself to receive support and love from Mary Margaret, Dr. Anderson, and other members of her care team, she also began to advocate for herself.
"The longer we worked with her, the more she was able to speak up about what she needed," said Mary Margaret.
"Being in the hospital taught me to say something if I didn't like what was being done to me," said Nina. "It also taught me how to love. Before, I didn't know how to love. I didn't even know I was a lovable person. Being in the hospital helped me be a more open person and see that love and spreading love is a great thing."
Nina bravely told members of her care team how to change the catheter dressing on her chest in the least painful way. She also learned to say things like, "I really want to be able to go to this senior day activity. How can we schedule dialysis around that?"
"Nina had to restrict fluids, come to dialysis multiple days a week, undergo hours of infusions, and walk around with a visible catheter on her chest. It was a lot for a girl her age to deal with," said Dr. Anderson. Whenever we could, we tried to give her some control and sense of normalcy back. We knew she craved spicy foods, so we worked with her dietitians so she could still get some of the flavors she loved, without impacting her kidneys too much."
On building strength by opening up
"It can be so challenging to be diagnosed with an autoimmune disease that requires so much scheduled care – at precisely the time of life where you want more independence and freedom. Nina had to take on a lot of responsibility and draw on tremendous inner strength," said Dr. Brown.
Nearly 16 months after she first went to the ER, Nina started living on her own, attending college classes, and completely managing her own medical care. She wants to become a social worker like Mary Margaret, the type of professional who you can talk to about any type of problem.
On days when her health or emotional challenges make her feel tired or down, she thinks about what Mary Margaret and Dr. Anderson taught her, and how powerful it was to open up, share her struggles and love and advocate for herself.
"They taught me that I'm a very strong person for what I went through," said Nina. "I still graduated high school and now I'm in college. And that reminds me that I can do anything. Nothing can stop me."
Learn more
As one of U.S. News and World Report's top pediatric nephrology programs and the largest in North Texas, Children's Health provides comprehensive kidney care that is centered around whole-child health and wellbeing. Learn more about our nephrology program and services.
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