My father, my brother, and I all have Polycystic Kidney Disease. When I was diagnosed, I was told I had 5 years until I’d reach end stage kidney failure. My urologist said, there’s nothing you can do: when the time comes, we’ll take you to the hospital basement for dialysis. Then he shook my hand and wished me Merry Christmas. That was 8 years ago.

I went home, called my general practitioner and said, I want to see a new specialist. I went to see a nephrologist who got me on Tolvaptin. I was fortunate. I also take Keto-Citra, a medical food to help control PKD, and my nephrologist monitors that. It’s so important to find an open-minded nephrologist who specializes in PKD, one who will work with you and monitor you for your own benefit.

It’s so important to find an open-minded nephrologist who specializes in PKD, one who will work with you.

Over time I kept up my research, looking at clinical trials and other sites. I found that sharing information helped me not only to learn more about the disease but also to connect with others, to help cope with all the pitfalls of PKD.

I found that sharing information helped me not only to learn more about the disease but also to connect with others.

For my diet, my goal now is to eat food that causes less acidity and to control the level of potassium, phosphorus, and proteins. I’ve come across many studies that demonstrate how well diet can help to manage PKD at all stages.

Stress is a factor that can affect PKD, so I practice meditation and exercise daily. I also keep detailed notes on my blood and urine markers from each test. That way my doctor and I can see the results of what I’m doing. There are many pathways to cyst growth so my nephrologist and I always search to find new ways to mitigate them. My doctor and I want to maximize the potential of my kidney health.

After a PKD diagnosis, some people just succumb because they have no hope. You can become passive because you’re unarmed – you have nothing to fight with. I want to arm people with information and hope. I want them to be a PKD warrior.

I want to arm people with information and hope. I want them to be a PKD warrior.