I was diagnosed when I was 26, and by accident. When I went to the ER for shortness of breath, it ended up being hypertension. I had to get a CT, and by chance, there were cystic kidneys. I have no family history of PKD. I remember looking PKD up online and my mom sent me a few books on it.
It was scary. I didn’t even know where to start. I found the PKD Foundation online and got involved.
I Helped with the Walk for PKD the next few years, attended a conference, and when I got into pharmacy school I gave a talk about PKD to my fellow classmates. I’m 41 now, and I’ve had multiple visits to the ER for hypertension, severe UTIs, and sometimes even hypokalemia. Five years ago, I got a craniotomy for a brain aneurysm that I had been watching for around nine years prior. I currently have normal renal function with enlarged kidneys, controlled hypertension, and was recently diagnosed with polycystic liver disease.
I’ve been on tolvaptan for over a year now and I’m very hopeful it works. My goal is always to educate and teach others about PKD, to continue learning about new research and medications that could make a difference for future generations of kids with PKD, both ADPKD and ARPKD.