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My daughter, Alyssa, was at her 4-year checkup when her pediatrician informed me that her blood work showed high cholesterol. He referred us to a cardiologist, and for nine months, we followed a heart-healthy diet as recommended. After those nine months, the cardiologist told us to return to our pediatrician. At that visit, he repeated her blood work and also checked her urine. The blood work still showed high cholesterol, and this time, her urine showed the presence of protein. He then referred us to CHOC Nephrology.
Overall, the transplant has brought her greater freedom and joy during what remains of her childhood.
At CHOC, they performed a kidney biopsy, which revealed that Alyssa had FSGS and C1q Nephropathy.
Over the next five years, Alyssa tried 12 different medications and underwent 18 months of Lipopheresis, but unfortunately, her FSGS remained unresponsive to treatment.
In 2019, Alyssa’s team at CHOC referred us to the Cedars-Sinai transplant center, where she was listed on the transplant list (inactive but accruing time). In 2020, Alyssa went into kidney failure. We moved to another state, where she began care with a new nephrologist who confirmed it was time for a transplant. Her accrued transplant time was successfully transferred, and she was activated on the transplant list.
Alyssa received her kidney transplant in March 2021. Unfortunately, she experienced complications and was hospitalized for 14 days. Since then, she has faced severe infections due to her ongoing immune suppression, but overall, the transplant has brought her greater freedom and joy during what remains of her childhood.
We are forever grateful to the donor’s family for honoring their loved one’s wishes. We think of them often and continue to hope for a cure for FSGS so that no one else has to endure this challenging disease.
