Debra and her eldest daughter

My name is Debra and I’m from New York. I was diagnosed at the age of 22 during my pregnancy with my first child. At the time, my mother had PKD and was going through a difficult time. She was on dialysis, received a transplant from a non-related donor and, unfortunately, her transplanted kidney failed immediately. She returned to dialysis and within three months passed away at 48 years old from a brain aneurysm. Now, here I am 30 years later at age 52, and my GFR is at 18. I hope to get a preemptive kidney transplant.

I have four beautiful adult children, of which three have PKD. The guilt I live with knowing I gave my children this horrible disease is unimaginable. My oldest daughter does not have PKD and insisted on being tested to see if she was a match for me. We went through the evaluation and she is a match. My nephrologist is monitoring me closely and I hope to avoid dialysis and go straight for the transplant when my doctor says I’m ready.

I am symptomatic, meaning I experience abdominal pain, back pain, headaches, high blood pressure, umbilical hernia, fatigue, etc., but I don’t let it stop me from living my life! I’m alive, I have a beautiful family that I adore, I keep smiling and I will try not to give in to the disease. I’ve learned how to deal with the symptoms. I work five days a week, I enjoy going out with my family and friends, and I love to cook and bake (it’s my therapy). I live what I consider to be a normal life.

My husband had cancer last year and had such a positive and uplifting attitude in his battle, and he truly inspired me to do the same. The past few years have been tough on our family with sickness, but our love is so strong and gets us through all the challenges we are facing on our journey. I pray every day that my kids and all the wonderful families that have this unfortunate disease will benefit from a cure someday.