Linda Lepera was 28 years old and had just given birth to her third child when her doctor told her she had polycystic kidney disease (PKD), an inherited disorder that causes non-cancerous, fluid-filled, round sacs to form on the kidneys. She carefully managed her health and her PKD for 31 years until she received a kidney from a live kidney donor as part of a paired kidney exchange in January 2014.
Linda took a few minutes to speak with us about her experience navigating life with PKD and the steps she took to be an active partner with her healthcare team.
When did you first learn that you had PKD?
My mom had PKD, and, when I was diagnosed, everyone I knew who had PKD passed away from the disease. So, as you can imagine, when I found out I also had PKD, I was scared. I went to see a nephrologist right after I had my third child.
When he confirmed I had PKD he also explained – in a fairly matter-of-fact way – that he thought I’d probably live to be 50. Can you imagine hearing that after just giving birth? I made up my mind right then and there that I was going to do everything in my power to live as long as I could and enjoy a good quality of life. So really, because of PKD, I’ve been proactive about staying as healthy as possible since my twenties.
What are some steps you took to take care of yourself after you received diagnosis of PKD?
I learned everything I could about the disease and took the dietary guidelines very seriously. I knew that there was a possibility that my kids could also have the disease and it was important to me to show them that it’s not a death sentence and that you can live a full life with PKD. When my daughter was diagnosed with the disease, I was thankful that it was not as scary for her as it had been for me because she saw me living with PKD and having a great life.
What advice do you have for people who have been diagnosed with PKD?
There are probably two things I think are really important. First, take your health seriously and do everything in your power to take care yourself. And the second is to be an active partner with your healthcare team.
From the beginning I tried to learn from my mom and others about the disease and to educate myself about how to eat right etc. One example of how being proactive helped me stay healthy, actually comes from a combination of learning from my mother’s experience with PKD and my daughter’s experience with PKD after she had her second child.
My mom had experienced several strokes, so to be on the safe side, I touched base with my general internist about the risk of stroke and was told it was not something to be concerned about.
A few years later, when my daughter had her second child and my granddaughter was diagnosed, her nephrologist suggested a brain scan every five years to rule out an aneurysm – which is one kind of stroke. He confirmed that it is a common complication for people with a history of PKD and stroke.
Based on my daughter’s nephrologist recommendation, I went back to my internist. When he double checked with a nephrologist, he then sent me for brain scan which ultimately showed an aneurysm. For the average patient the plan is generally to keep an eye on an aneurysm but for PKD patients who also have a history of stroke, the treatment is to coil the aneurism. So I had the aneurysm treated and, thankfully, I haven’t had any complications to this day.
I want to encourage people with PKD that there is hope and it is a manageable disease, but the key is take your health very seriously. Don’t be afraid to partner with your doctors in the treatment process. Do everything you can to understand PKD and the complications of the disease.