Kevin Nordby

First post: Apr 16, 2020 Latest post: Apr 23, 2020
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Kevin was diagnosed with Birt-Hogg-Dubé (BHD) Syndrome in July, 2019 after he experienced a severe side ache that wouldn’t go away. The side ache turned out to be large benign tumors in and on both of his kidneys, caused by BHD. He was diagnosed at University Medical Center in Seattle WA. Even though his kidneys were still functioning, it was determined that both kidneys need removed due to risk of kidney cancer, and also risk of kidney rupture. The UW medical team said after kidney removal, he’d need dialysis for at least a year before kidney transplant to ensure no cancer exists in his abdominal cavity.

BHD is caused by a rare genetic mutation in the FLCN gene, and is typically characterized by skin lesions, honeycomb-like lung cysts that cause weakening in the lungs and lung collapse, and benign kidney tumors. While Kevin doesn’t have skin lesions at this time, he has experienced lung collapse as well as the tumors found in his kidneys. Since there is no record of BHD in the family history, apparently Kevin is the first generation in his family to experience this syndrome as far as we know.

Kevin had finally found the love of his life, Rena Curry, in 2018. They both knew right away that they wanted to share life together, and although this was a very rare and difficult diagnosis—and both knew of the challenges ahead—the two were married in February, 2020.

Kevin decided on hemodialysis, which is the type of dialysis done at a kidney center where wastes and water are removed from the body via a dialysis machine. Dialysis requires a very strict diet where especially sodium, potassium, and phosphorus (also protein, fluids, calcium, and other dietary elements) are limited and closely monitored. 

Kidney removal surgery is happening on April 16, 2020 at University Medical Center. We will keep you updated on these pages. Please leave messages for Kevin here!