Macy H.

Macy was diagnosed at the age of three with Nephrotic Syndrome in 2009, when she presented with swollen eyelids. Initially, she was misdiagnosed with allergies, but eventually the swelling spread from her eye to her abdomen, legs and feet. Macy responded to steroids very quickly and was sent home with the assumption that she may relapse once or twice, but that she would eventually outgrow her condition. Unfortunately, as the months went on, Macy became steroid dependent and relapsed five times within the first six months of treatment. After having gained over 30 pounds and unable to wean off or even lower than 30 mg of steroids, the prednisone became toxic to her body. She had ulcers in her stomach and was unable to walk without assistance. A biopsy indicated that Macy had Focal Segmental Glomerulosclerosis (FSGS) which had caused scarring to the filtering units of her kidneys.

Macy went on to try every medication available to treat her disease, including a clinical trial, but none were able to stop the progression of her disease. Her proteinuria was so severe that she became reliant on daily, six hour albumin infusions to keep her swelling under control and keep her out of the hospital. During this time, she suffered from countless complications including sepsis and a blood clot in the right atrium of her heart. Her kidneys deteriorated quickly and she was placed on peritoneal dialysis just 20 months post diagnosis.

After a bi-lateral nephrectomy, Macy received a living donor kidney transplant at the age of five. Unfortunately, the FSGS returned and attacked her transplanted kidney and she suffered from delayed graft function. It was a long six week recovery, but she was eventually able to return home to continue treatment for the FSGS. After nine months of plasmapheresis three times a week, Rituximab that caused prolonged neutropenia, a medication switch to Sirolimus put Macy in partial remission. She was treated for mild rejection one year post transplant and the high dose steroids pushed her into complete remission, where she remains today.

Transplant, however, is not a cure. Over the past 13 years Macy has had 39 surgeries and procedures, hundreds of hospital stays, and she suffers from many co morbidities including frequent kidney infections, adrenal insufficiency from all the steroid use, and a movement disorder called chorea to name a few. Macy is now 17 years old and this June, she will celebrate her 12th kidney anniversary and 11 years of remission. It has been a long road and her kidney transplant is winding down. She has a new living donor ready and waiting to give her another healthy kidney in the near future.