My name is Heidi and I found out that I had PKD at the age of 18 when I had appendicitis—only months after my dad discovered he had PKD and received a kidney transplant. He was the “mutant” and the first generation to get it in our family.

For the last 12 years, it’s been easy to not worry about my health as my kidney function has been normal. I just had my second child, however, and found out that both he and my daughter have PKD. This was so discouraging, as we hoped for the best that it wouldn’t pass on, especially to both the children. We’re now moving forward with genetic testing and considering IVF to make sure our future children don’t have PKD.

While at times I feel very discouraged, I’m filled with hope for the future. I have much to be grateful for as my kidney function is still normal and my dad has had good health post kidney transplant as well. I believe that I can make the best out of this situation and that everything happens for a reason. I’m ready to finally take a proactive approach to my health and fight for a better future for me, my children, and everyone with PKD.