My name is Jan Maxwell and all of my father’s children inherited PKD. My father died at age 43 because there was so little progress regarding surviving on dialysis. Kidney transplants weren’t yet an option. My sister, Susan, received her new kidney from an altruistic donor within a year of being told to start looking. My brother, Brian, found his donor within a month from a close friend who happened to be an excellent match.
And now it’s my turn. I’ve been searching for four years with the help of friends and family using social media, taglines on emails, and word of mouth. In addition, the Washington Nationals baseball team let me have an event during a game to distribute cards telling my story to the 35,000 fans in attendance that day.
I feel wonderful despite a low eGFR score. I’ve spent the past three becoming a trauma-informed, certified transitional life and divorce coach to work with survivors of intimate partner violence. I earned certifications in many areas of coaching to support my clients to the fullest. I even earned my accreditation from the International Coaches Federation, the parent organization for coaches worldwide. All this is to say, I don’t think of myself as a sick person. I go into patient mode only when I have to go for lab work or checkups. Otherwise, I’m living my life to the fullest.
My story has taken a slight detour. I was recently told by my nephrologist that it was time to surgically construct a fistula in my arm in order to receive dialysis if I don’t find a donor soon. I’m thankful that dialysis is available to me, but based on my siblings’ experiences finding their donors, I never expected to need it. I’m sharing my story to encourage others who are waiting for a donor. Despite my situation, it’s possible to find a donor and though not my first choice, dialysis is available to keep us going.