Staying Positive with Lupus and Lupus Nephritis

In 2014, Shadaiah (Shae) Forsey was a typical tenth-grade student. She studied, hung out with friends, and dreamed of the future. Then, an unexpected lupus and lupus nephritis diagnosis flipped her world upside down. Instead of letting it get her down, Shae embraced life with lupus. 

This is her story.

A Life-Changing Diagnosis

Shae gained thirty pounds in two months despite no changes to her diet or exercise routine. 

"When the weight kept coming, I tried dieting and exercising. Nothing worked and I had chronic lower back pain," Shae said. "Then my lips swelled up. It's a condition called angioedema, or localized swelling."

Shae's parents rushed her to urgent care, where the doctor quickly realized that Shae's symptoms pointed to kidney disease.

"They sent us to the local children's hospital. I was relieved it wasn't all in my head. There was a medical reason I was experiencing this," said Shae. "My parents were terrified. We have no family history of kidney issues. We didn't know what would happen next or how sick I actually was."

Shae's kidneys were shutting down. 

"My blood pressure was dangerously high. My heart was struggling to keep up," Shae said. "They started me on a diuretic to reduce fluid and make it easier for my heart to pump but I wasn't doing well. My parents made the difficult choice to place me in a medically induced coma to save my life."

The doctors discovered Shae had lupus and lupus nephritis. Lupus is an autoimmune disorder that causes the body to attack itself. Lupus nephritis occurs when the body attacks and damages the kidneys.

"They started me on chemotherapy, a powerful immunosuppressant, to calm my body's immune system and stop it from attacking my kidneys," Shae said. "I briefly had acute kidney failure while in the coma. The chemo put the lupus in remission and my kidneys bounced back. I feel lucky because not many people avoid dialysis once they've gone into kidney failure."

Learn more about lupus nephritis. 

Learning How to Live with Lupus

Two weeks later Shae stabilized enough to wake up and begin the road to recovery.

"The ongoing chemotherapy treatments worked but it came with side effects like hair thinning. The diuretics helped but they also removed water from my muscles. I had to learn how to use my arms and legs again," said Shae. "Once I was discharged, outpatient services became my second home."

Shae returned to school as she built her strength and fine-tuned her medications.

"My hair, weight, and body were drastically different. While my friends tried to be supportive, many of their comments, like complimenting my weight loss, reminded me of what I'd gone through," Shae said. "To cope, I threw myself into schoolwork, specifically biology."

Through biology, Shae learned more about her body's immune system and how to read her blood tests. 

"I couldn't eat or drink the same things as my peers. I had to go to frequent checkups and take medications. I didn't have much control over my life," Shae said. "Being educated enough to discuss my health and make decisions about treatment was empowering. It gave me a sense of control."

By the end of high school, Shae had fallen into a routine that helped her stay healthy. That didn't make accepting her new reality any easier. 

"I got a handicap parking pass for college. As a young adult, that was hard to accept. Seeing it was physical evidence that I have a chronic condition that makes my life different from others," Shae said. "Once a parking police officer questioned if the pass was mine. I felt ashamed and embarrassed that I had to explain the hardest part of my life to a stranger."

A conversation with a college advisor helped Shae see the bigger picture. 

"Many of my peers don't deal with a chronic condition that makes it harder to get to class. It might take them ten minutes to get ready, where it could take me over an hour," Shae said. "They affirmed that I'm not broken and there is no need to feel shame. The handicapped parking pass just helps level the playing field."

Shae took this to heart and transformed her outlook on life.

"I worked hard to eradicate comparison from my life. My best life doesn't have to look like someone else’s best life," Shae said. "As I've done that, I've realized there are so many beautiful things worth living for."

Are you struggling to thrive with kidney disease? Speaking with someone who went through a similar situation may help. Join NKF Peers to connect with a trained mentor who has been in your shoes.

Moving Forward with Hope

As of June 2024, Shae is in remission.  

"I've had several flare-ups over the years. My latest was in early 2024. My kidney markers dipped but I've been able to manage it with chemotherapy, medication, diet, and exercise," said Shae. "While the fear that my kidneys may fail is always there, I use it as motivation to live life to the fullest every single day."

That includes finding creative ways to stay healthy. 

"I find joy in experimenting with and making delicious food that fits within my dietary guidelines," Shae said. "When I don't feel like exercising, eating healthy, or taking my medication, I remind myself that these actions help keep me off dialysis. While I can't completely control when I'll have a flare-up, I do have the power to make choices that benefit my overall health and well-being."

For Shae, making these choices is also the key to not letting a health condition get you down. 

"I encourage people not to get disheartened at their diagnosis," Shae said. "Once I saw my diagnosis as a reason to get creative and curious, life felt much fuller. It allowed me to try new things and embrace the life I have." 

Looking for people who understand what it is like to be impacted by kidney disease? NKF has six different online communities for you to explore. Find the right NKF Community for you.