I once had to go through a life-saving procedure for a rare genetic kidney disease called FSGS (Focal Segmental Glomerulosclerosis). My brother David was the one who donated a kidney in order to save my life.
Ten years later, my 26-year-old son Trey was diagnosed with the same rare kidney disorder. This time, it was David’s son and my nephew Adam who selflessly stepped up to the plate to give my son a life-saving gift.
My family is only one of 20 families in the United States with this genetic pattern affecting multiple generations. It has affected my father, two of his brothers, and my grandmother. They all passed away due to renal failure, which is the full ramification of the disease.
FSGS causes scarring to form in certain areas of the kidneys. As the amount of scar tissue increases, the kidneys fail to filter and eliminate toxins from our bodies. Dialysis and kidney transplant is often required during later stages, and there is currently no known cure for FSGS.
Finding a match
Finding a living donor who’s a perfect match for a kidney transplant is a meticulous process which involves a thorough physical examination as well as numerous medical tests. Relatives who share the exact same genetic DNA are not guaranteed candidates for organ donation.
A kidney transplant is a very intricate surgery that requires skill and precision. Arteries need to be perfectly spliced together in order for a transplant to be successful.
Thankfully, Dr. Justin Burns and Dr. Dana Perry from the Mayo Clinic are both brilliant surgeons – they performed the surgery perfectly, and both my son and my nephew recovered smoothly.
Facing challenges as a family
Encountering this challenge as a family shows just how much we can count on one another during our time of need. The sacrifices of both my brother and his son truly warms my heart, and shows how blessed we are as a family.
Help spread the word
The American Kidney Fund and The National Kidney Foundation organize and sponsor events each March in order to raise awareness about kidney disease and treatment.