Janice | Voices of PKD
I was diagnosed with polycystic kidney disease (PKD) in 1992 at the age of 18. At the time, my doctor reassured me that my kidneys "just looked funny" and that I had nothing to worry about. Hearing the term kidney disease was shocking, but the doctor’s reaction kept me from feeling afraid. Unfortunately, I knew nothing about PKD and did not give it much thought until my blood pressure began to rise and my kidney function started to decline in 2008.
In 2016, after hearing of other people’s success in managing PKD through their diet, I started intermittent fasting and noticed significant improvements in my kidney function. My estimated glomerular filtration rate (eGFR) increased from the low 70s to the mid 90s. Despite the improvements, my nephrologist dismissed the idea that diet could play a role in these changes, even though my blood tests were clearly showing progress.
Unfortunately, during the COVID pandemic, I fell off my diet plan and experienced a drastic decline in my kidney function. Determined to regain my health, I returned to intermittent fasting, lowered my carb intake, and did more research on how supplements could help, and in just six weeks, my eGFR improved by 30%. To manage the stricter dietary requirements, I began using a tracking app to monitor my intake of carbohydrates, protein, and healthy fats.
My general practitioner (GP) believes that my dietary and lifestyle changes are likely contributing to my improved kidney function and encourages me to continue. Personally, I hope that more research on dietary effects on PKD will continue, and we can find ways to complement or enhance the current treatment options.
Looking back, I wish I had understood more about PKD when I was first diagnosed and regret not making my dietary changes earlier, which could have prevented some of the declines in kidney function I experienced over the years. Nonetheless, I feel like I am back on track, and it has been incredibly encouraging to see improvements in my test results again.
The diet I follow seemed challenging at first, but it became easier once I understood it more, and tracking my macronutrient intake has been essential—especially knowing what goes into my body can make a difference.
I truly believe that diet and lifestyle changes are key to managing my PKD along with advice from medical professionals. My hope is that more research will focus on diet and food quality in the future; I consider them important factors for living with this condition. Adopting a low-carb diet and understanding its nuances have taken effort, but I believe the benefits have been worth it for me and have slowed the progression of my PKD.
To the best of my knowledge, no one in my family has PKD, so my story is one of personal discovery, persistence, and a belief that knowledge and action can change lives. I am grateful for the tools and resources that have helped me and hope my experience inspires others to explore lifestyle and dietary approaches to better manage their PKD.
If you'd like to contact Janice to learn more about her story, you can email her here.