My name is Tracey Looney and I was in my early 20s when I was diagnosed with ADPKD. I’m now 47. PKD was passed down on my maternal side of the family. My grandmother died in 1988 at the age of 58. My mother died in 2008 at the age of 62 after a long battle through PD, multiple strokes, and a brain aneurysm. Within two months after her death, I found out I had a half-brother who also had ADPKD. To date, he is the only male in our family to have had this disease.
He was a transplant recipient, but unfortunately passed away a couple of years ago. He was in his early 50s. I’m so thankful to have met him and loved him for the short time we knew each other. My niece, his daughter, is getting ready to have her PD catheter placement done. My aunt (73) had her transplant six years ago. She’s the oldest living relative with ADPKD in our family and she’s been such an inspiration! Sadly, she was recently diagnosed with Leukemia and the prognosis isn’t optimistic. Due to her transplant, she is unable to receive chemo.
I began seeing a nephrologist in 2018 and was immediately offered the opportunity to take part in the tolvaptan program. I was doing great and feeling better than ever until my liver enzymes went through the roof and I was removed from the program. Needless to say, I was devastated.
Through all of the losses, I’ve chosen to stay positive. I refuse to let this disease define who I am.