My name is Kate Callahan and I’m a 21-year-old college student from the San Francisco Bay Area. My journey with PKD begins when I was seven years old. My father became increasingly ill with PKD and was told that he needed to go on kidney dialysis while waiting for a transplant. As the primary breadwinner of our family, he continued to work full time in a demanding job. He would go to a dialysis center to get his blood cleaned and made jokes that he had a new “part time job,” but would never complain. I remember how thin and tired he was, but he kept a positive attitude and didn’t want us worrying about him. After six months on dialysis, he received a call from the UC Davis Medical Center that a donated kidney was available. My father had a successful transplant and a good recovery. We were so happy that his life could get back on track.
Fast forward to two years later. I was a seemingly normal fourth grader, but I started having frequent stomachaches, which we thought was probably due to anxiety or allergies. My doctor suggested that I have an ultrasound procedure at the hospital. Just as the ultrasound technician was finishing up, he noticed something and said, “there seems to be bumps on her kidneys.” In an instant, my heart sank because I knew what that meant. I was only in fourth grade when this happened, and it was a life-changing event that I will always remember. My two older siblings were tested after this happened and did not appear to have PKD. This was a good thing, yet I felt sad and very alone being the only child in our family who had it.
I started to show signs of hypertension in sixth grade and by seventh grade, I needed to begin taking blood pressure meds. I’ve had many adjustments to my meds over the years as I try to find a good way to control my hypertension. Last summer, I was hospitalized twice with cyst bursts and infections in my kidneys. The pain was excruciating at times and I again felt scared about my future prognosis. After a lot of careful thought, I decided to go on the new drug, Jynarque (tolvaptan) to try and slow the progression of my PKD. Many people told me that I was a good candidate for the drug, but I was worried about the side effects since I’m a busy nursing student and need to stay focused on my studies. For the most part, I’m very happy with my decision but I envy my college friends who don’t deal with these types of health issues. I’m trying to not let PKD stop me from doing all the things that I want to do, like studying abroad. I had a fabulous time studying in Salzburg, Austria for the fall semester in 2017 and enjoyed traveling around Europe. I can’t wait to go back!
My mother has encouraged me to get involved in the PKD Foundation and I was lucky to be part of a Youth Support Group at the Conference held in Orlando, FL, in 2016. I met some pretty awesome people there and I’ve been able to keep in touch with young people like myself who also have PKD. As time has gone on, I’ve tried to come to terms with PKD and be stronger in facing the uncertainties of my health in the future. I’ve realized that there are positive things that have developed from this challenge: I decided several years ago that I wanted to pursue a career in nursing. I’m finishing my junior year at the University of Portland School of Nursing and I’m starting my clinical rotations, which is very exciting. Managing my own health and PKD will make me a better nurse. I feel that I’m in a position to share my story with others and help them feel empowered as well. I know what it means to feel blind-sided by finding out that you have a serious illness. I’ve found my “silver linings” and I believe that I can help others find theirs too.
What’s your PKD story? Share it with us at Voices of PKD!