My name is Trish Kaiser and my ADPKD diagnosis came in Fall 1999, just a few months before my eighth birthday. I still remember my mom taking my older brother and I to renal ultrasounds one day before school. My brother knew something was different when mine took longer. Our parents took me to pediatric nephrologist in New York City who suggested that I see her every two to three years to track its progression.
ADPKD caused my paternal grandmother’s renal failure, which led to dialysis three days a week and later a transplant. When she first received her diagnosis, her doctor told her it was genetic. My dad immediately got tested and found out he had it. A few years later, we found my uncle, aunt, and cousin also have PKD.
In November 2012, my dad went into kidney failure. To avoid going on dialysis, he spent the next 16 months following a holistic lifestyle. In February 2014, my mom reached out to New York-Presbyterian Hospital/Weill Cornell to inquire about their kidney transplant program. After learning how long the wait could be for a transplant, she asked a transplant coordinator if she could be tested to see if she could be his donor. Their operation was performed in May 2014.
As I approach my 30th birthday in four months, I’m incredibly grateful that my kidneys, creatinine and GFR levels, and blood pressure have all remained in the healthy range.
I wanted to share my and my family’s story as a message of hope. Each day I try to keep that positive mental attitude.