Life, Family, and PKD: Mary Beth

In Kidney Support Stories by The Road Back to Life

I have Polycystic Kidney disease (PKD). Four years ago my life changed, not for the better and not for the worse, it just changed. Through the diligent detective work of my primary care physician I was diagnosed with PKD. After receiving the news I researched and read everything I could about the disease. The information was positive as well as very depressing. Every time I turned around I had another PKD concern to worry about that would affect my family and me.

After being diagnosed I wrote two letters one telling my two boys about my failing kidneys and encouraging them to be tested since PKD is a genetic disease. When my first grandchild was born two years ago I was so worried about passing on PKD to her. Some time later I also wrote another version of the letter to my friends explaining what I had and what I could expect to experience for the rest of my life.

My next step was to find a nephrologist I could connect with and who would provide support. I wanted a doctor who is active in the kidney community and current on the newest advances. I was lucky to find the support I needed. He encouraged me to investigate the options for a transplant something I had not considered.

I live in the Seattle area where there are several very good transplant programs and I chose the University of Washington Medical Center. I spent months filling out forms, taking medical tests and after a review by the medical team I was added to the transplant list in August 2012.

Now I wait for a transplant, trying to live a good healthy kidney life. Some days I feel positive and hopeful that things will work out for me and some days I’m not so hopeful. My oldest son has PKD and his younger brother does not, so a living donor transplant from a family member is not an option for me.

I’ll keep you posted as I progress on my journey waiting for a kidney transplant and yet reaching for everything life has to offer even if I have PKD. It is simply a change in the plans I had for my life, but along the way I have met some amazing people and they are a blessing.