In 2003, Nichole was feeling unwell. She was always tired, had gained 40 pounds, and lost sight in one eye. A visit to the emergency room revealed she had end-stage kidney disease and needed immediate dialysis. Shocked, she asked her doctors how this could have happened. They suspected undiagnosed high blood pressure but didn’t know for sure.
Two decades later, she finally found out the cause of her kidney failure: immunoglobulin A nephropathy (IgAN), a disease that causes inflammation and damage to the kidneys. A doctor reviewed her old biopsy records and confirmed the diagnosis. “I was upset with so many people because I’d been asking for 20 years, ‘How did I get this?’” she shared.
Nichole’s diagnosis hit hard at a time when she felt her life was just starting to bloom. She had a promising career in IT and a teenage daughter actively involved in sports. The news brought her down, leading to moments of despair. At her lowest, she considered stopping dialysis but changed her mind when she realized how much her daughter needed her.
For four and a half years, Nichole waited for a kidney transplant. Each night, she did at-home dialysis to keep her job and care for her daughter. “The waiting for a kidney was nerve-wracking,” she recalled. “Every time I heard someone got a transplant, I wondered, when will it be my turn?”
In 2008, she finally had her first transplant, but recovery wasn’t easy. She experienced anti-body mediated rejection (AMR), where her immune system attacked the new kidney. Eight years later, she sensed her transplanted kidney was failing again. Despite her doctor’s reassurance, she trusted her instincts and pushed for a biopsy, which confirmed her fears.
After rejoining the transplant list, she took charge of her health, reaching out to the best hospitals across the country. In 2020, she received her second kidney transplant.
Today, Nichole feels revitalized. “I’ve been able to do things I couldn’t do for 20 years,” she said.
Navigating her health journey has been tough, especially misconceptions around kidney transplants. “People think once we get a transplant, we’re cured,” she said. This motivated her to advocate for kidney disease awareness, particularly in the Black community, where rates of kidney failure are alarmingly high.
Nichole doesn’t want anyone else to endure what she went through. She has inspired her family, especially her daughter, to stay proactive about their health. While she credits family support, her kidney disease community has played a crucial role in her healing. Sharing experiences and forming connections helped her through tough times. “If I didn’t have my support circle, I don’t know where I would be,” she admitted.
Now, post-transplant, Nichole boldly declares, “I started living life more.” She travels to visit family and shares her story nationwide through talks and meetings with lawmakers.
Recent statistics show that around 37 million Americans have kidney disease, and many remain unaware of their condition. With ongoing clinical trials for kidney diseases, Nichole feels hopeful. “So many people are working together to find treatments,” she said, thinking of future generations.
Her advice? Speak up about your health and advocate for yourself. She urges doctors to listen to their patients.
Her journey is a testament to resilience and the power of community.
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Living with…,Kidney Disease
