What’s in your suitcase?

As a PKD patient and transplant recipient, going on trips takes extra organization. I joke that half my suitcase is filled with medical items such as my blood pressure cuff, thermometer, medical journal, ice packs, snacks, first-aid supplies, and medicine. As the year...

A caregiver’s perspective

Valen’s husband, Noah, offers insight into what it’s like to be a caregiver to a PKD patient. I sat with my face in my hands as the fifth person tried to start an IV in Valen’s delicate veins. She was trembling vigorously, staring at the ceiling; her tired...

Unsung Heroes

“Mom, my head hurts!” As a 5-year-old, I stood in the kitchen repeating those four words several times, each time louder, until I fell to the floor and had my first grand mal seizure. This is the day I became a patient and my parents became caregivers. Neither role is...

The reSEARCH for a cure

On our PKD journey, patients and researchers search for many answers, all with the common goal of discovering a cure. We patients may search to find out why we have this disease, what we can do to lead the healthiest lives, where we can obtain the best care or when we...

Halloween candy: everything in moderation

Trick-or-treating is in full effect! Our homes, offices and bellies are likely full of candy, and it is only the beginning. When I worked at an office job, I was in awe of the amount of candy and baked goods that flooded our office this time of year. My bosses would...

Achieving Goals

I believe setting and achieving goals is important for all of us, especially while enduring health issues. Instead of having a to-do list for every new day, I like to view it as a goal list. Every evening, I think of what I would like to accomplish the following day....