“You received your treatment for PKD when you received my kidney. Instead of moving on and focusing on your life, you have dedicated it to helping other PKD patients.” This beautiful sentiment from my kidney donor, Sally, was part of a moving conversation we shared on April 24, 2018, the day the FDA approved the first treatment for ADPKD in the U.S., finally joining our fellow PKD patients in Canada, England, Japan and the European Union.
Sally called me immediately after learning the breaking news. It was a call I will never forget and one that only a kidney donor and recipient could share and appreciate. We cried together in joy. Her touching words of gratitude for all of my hard work in the PKD community meant so much coming from the woman who saved my life. An extraordinary PKD “twist-in-the-tale” is that several years after my transplant, my brother married Sally’s daughter, Emily. This means it is very likely that some of Sally’s grandkids will have PKD. With this in mind, Sally shared her appreciation for my dedication to helping PKD patients because it could be her grandchildren someday suffering from PKD and needing this treatment.
My heart felt happy after this long-awaited news was announced. I had a sense of relief and extreme hope. No, this is not a “cure” and probably not the best treatment we will see in our lifetime, but there is hope that this will pave the way for more and improved treatments, and one day a cure. I’m so grateful that my mom’s PKD health is good and she is still alive at 62 for us to celebrate this milestone together. I couldn’t help but think of our many family members who have passed on because of this awful disease. I smiled, hoping my grandmother—whom I never met and who passed far too young because of PKD—is happy (somewhere) and proud of all of the work we have done to make this day possible. I thought of my Aunt Donna, who chose not to do dialysis and passed when I was a teenager. I envisioned how excited she would be, hearing this news. I thought of all of my other family members whom I’ve only met by standing at their gravestones and hope they know that I continue to honor their lives by sharing our family story. I wish we could have all been together, in person, to celebrate this momentous occasion.
Aunt Donna’s daughter, my cousin Christina, sent me a message after learning the exciting news and said, “Grandma Mic, your Aunt Donna and Uncle Jack are all so proud of you. You are such an inspiration to everyone you meet and know. Love and miss you.” Having a very small family because of PKD, this message meant a lot to me. I now trust that future families will have a longer surviving family tree than ours–and healthier, richer lives together.
Every time I share my story with others, there is one constant – that I hope to live to see the day a treatment is found for PKD. Here we are! We have lived to see the day and what a beautiful day it is. It “took a village” to get here. It took small families, like mine, tirelessly spreading awareness; it took the PKD Foundation, Otsuka Pharmaceuticals, researchers, doctors and the PKD patients who participated in trials. Twenty-five years ago, when I was diagnosed with PKD, there was little hope. I’m thankful to be alive today to witness this historic time of hope and see the lives it will change. Thank you to every human being who helped make the first treatment for ADPKD a reality. I now have hope that younger generations, like my nieces and nephews, won’t have to endure all that many of us have.
How did you feel the day you learned that there is now a treatment for ADPKD in the U.S.?