Davis S.

Davis’ Rare Kidney Disease story started 2 years ago when he was 12 years old and in the 6th grade. He had sudden and extreme swelling that was particularly pronounced in his eyes and ankles. Davis was quickly admitted to the hospital and over the next several days that followed, he was treated with Lasix, received Albumin Infusions, and was diagnosed with Nephrotic Syndrome. In addition, Davis began heavy doses of steroids.

After 4 weeks of continuing to spill immeasurable amounts of protein he was unfortunately said to be “steroid resistant” by his medical team. Davis was then readmitted to the hospital a second time for a kidney biopsy, another round of albumin and Lasix, and genetic testing was administered. The biopsy revealed scaring and that his Nephrotic Syndrome diagnosis became more specific: FSGS with no known cause and with no known genetic markers.

Davis started the slow process of weaning off steroids and was then placed on tacrolimus and a blood pressure medication simultaneously. During this time, the protein spilling slowly began improving and following this, his doctor added cellcept six weeks later. However, after two years Davis continues to spill protein. He is considered stable and in “partial remission” where he spills between 1 to 2 grams of protein/creatinine.

Davis has experienced complications such as anemia, vitamin D deficiency, and had his kidney function temporarily decline from stage 1 to stage 2 renal failure due to his blood pressure medication. We continue to add and remove medications to control the protein spilling and minimize complications as well as side effects. Davis continues to exhibit courage, perseverance, and positivity in the face of all of this, and we remain hopeful in the ever-developing scientific research that might help him keep his native kidneys for years to come!