My journey began unexpectedly when, as a 30-year-old mom raising two young children, I started hemorrhaging blood. My doctor requested a urine sample, and when I handed the nurse a cup filled with blood, it set off a series of tests. While the initial cause, hemorrhagic cystitis, wasn't related to kidney disease, subsequent lab tests and X-rays revealed an underlying issue that led me to a nephrologist. I learned I was losing kidney function and would eventually need dialysis. With a 3 and 6-year-old at home, I was terrified – how would I care for them?
By age 41, I was on dialysis and added to the transplant list. During this time, we discovered my mom's kidney function was down to 10%, and she soon started dialysis too. Eighteen months later, tragedy struck when my parents, aunt, and uncle were involved in a serious car accident. This devastating event, which claimed the lives of my uncle, my mom, and my aunt over the following weeks, coincided with me receiving the call for a transplant.
Following my transplant, we discovered that my kidney disease was hereditary. Participating in a research project at Duke University revealed a genetic mutation linked to the Wilms' Tumor gene, affecting many relatives. Several cousins, all six of my sisters, my children, nieces, and even grandchildren carry this gene. Sadly, my sister passed away at 54 after battling the disease through dialysis and a transplant; weakened immunity from anti-rejection medications led to a fatal brain infection. Currently, several siblings, cousins, and a nephew are on the transplant list.
For families like mine, finding an alternative to dialysis would be a miracle. I am incredibly fortunate, having celebrated 27 years with my transplant this past February. However, the transplant waiting list is long and continues to grow. Many spend hours each week tethered to a dialysis machine, either at a center or performing exchanges at home. Imagine the freedom of reclaiming that time, of living life without being tied to dialysis. The Kidney Project offers hope for this future. They are doing amazing work to create a bioartificial kidney, potentially revolutionizing treatment and eliminating the need for dialysis or transplantation for many.
Support this cause by donating to The Kidney Project.
