Debbie’s Story

My name is Debbie Denney. I was diagnosed with Polycystic Kidney Disease (PKD), during my first year of nursing school, when we were being tested on taking blood pressure readings. The student checking my blood pressure kept getting abnormally high readings that were confirmed by our instructor. I was advised that I could not return to class until I saw a physician for my high blood pressure. Having known my family history of PKD, I went to the “family nephrologist” who confirmed per ultrasound that I had Autosomal Dominant Polycystic Kidney Disease (ADPKD), which is a chronic, genetic disease-causing uncontrolled growth of fluid-filled cysts in the kidneys, often leading to kidney failure.

I had great interest in knowing my family PKD history – my grandfather died at age 42 due to renal failure, long before transplants were commonplace. My aunt had a successful cadaver kidney transplant in the early 1970’s. My father had PKD but died at age 39 from a brain aneurysm. My brother, at the age of 38 successfully had a double nephrectomy (both kidneys removed) then a couple of months later received a living donor kidney from a dear friend. 

I have received great care from my care team, made up of my primary care physician, urologist and nephrologist to help guide me on this journey by monitoring and providing early intervention during my pregnancies, for blood pressure control, urinary tract infections, cyst infection and cyst drainage. 

Overtime, I have become more educated and involved with PKD by attending the National PKD Conference, connecting online through the PKD Foundation, attending webinars, participating with the annual PKD Walk, donating to the Nebraska Kidney Association through CHAD as well as being on the Nebraska Kidney Association board for the past 4 years. These connections provide important research information, tools, resources and networking opportunities.

My kidneys have continued to grow to where it is now uncomfortable and sometimes painful. Each kidney is the size of a football with an estimated weight of 15-20 pounds each, which makes me look like I’m perpetually pregnant. The size of the kidneys causes pressure on my diaphragm, that can make me short of breath and makes me feel full faster when eating. I struggle with severe fatigue, and blood pressure fluctuations that will leave me feeling lightheaded, with blurred vision, weakness, and an overall sick feeling. I also experience swelling of my hands and feet and occasionally if I have pressure against my kidneys, I will feel sick and nauseated. 

With the success of my aunt and brother’s transplant, I’m excited for the next phase. I recently submitted paperwork to the transplant team and have attended an orientation for home peritoneal and hemo dialysis and I’m actively looking for a living donor. My faith, family, friends, and physicians are my support system. Because of them, I look forward to taking on this next step of my journey. I want to set a positive example to our family’s next generation, that they may find strength and inspiration from our family’s PKD history.