Before Dent we thought my Dad had a kidney disease from not being given antibiotics for a strep infection. As I was growing up he progressively got sicker and needed dialysis by the time I was in college. When I was a Senior in college my Dad got a kidney transplant, and it gave him over 20 years now of beach walks, watching both daughters graduate from college, both of us got married, he’s met, read books and built things with his grandkids, and eaten pounds of dark chocolate.
When my son Derek hit 5th grade we started seeing some symptoms that triggered my Mama spidey senses. I scheduled an appointment with our primary care provider and went in.
I got a call from his doctor that asked us to come in, now. On a Friday, before Thanksgiving, at 4 o’clock. I immediately asked what was happening knowing that it wasn’t good news and the reply I got was, “there is something wrong with Derek’s kidney function and we need you to come in now.” With rerun tests we were sent home, I then looked up all the possibilities on Web MD and worried until we got into the nephrologist.
We found a pediatric nephrologist, Sonal S. Avasare, M.D. (Swedish Pediatric Specialty Care – Seattle, WA.) She took a family medical history and I brushed over that I had just been diagnosed with two kidney stones, and that my Dad has a transplanted kidney.
She suspected based on the labs that it might be a genetic disease and wanted to confirm it with genetic testing. We fought our insurance company for the genetic tests over a biopsy based on her good medical detective work.
We waited, and the tests came back positive for Dent 1. The clinic has one other patient age out of the clinic who had Dent, so we are rare, but not the first.
Once we had our definitive answer I remember my husband holding me in bed and I just cried. I had seen how having a kidney disease had changed my Dad’s life. My Dad’s life has been good, and / but, as a Mom you just want your kid to have everything be perfect. And, it was my fault. Or it felt like it. Unreasonably. But it was.
They scheduled us with a genetic counselor to help us understand what our options were with our other kids. Again, we had to fight the insurance company for us to get our other three kids genetically tested. The wait for those results was the longest wait. Our two other boys don’t have Dent, but our youngest daughter is a carrier. It also meant that my Dad’s kidney disease was also Dent. It rocked our world.
I can always tell when it’s been six months and it’s time for a check-up because Derek gets worried. The blood draws and pee in a red bucket and we wait for the, “am I still OK or is everything starting to head downhill?” visit where we find out if the numbers are stable or shifting.
But living with Dent for us isn’t life altering right now. It’s just maintenance and good habits. I hope it’s maintenance until there is a cure, or a 3D kidney technique for transplants – and that is why I volunteer on the Dent board.