We all have different perspectives on life and living with PKD. Our uniqueness makes the world a beautiful place, and we can all learn and grow from each other. After speaking to more than 85 audiences across North America over the years, I’ve received an array of responses when educating others about PKD. Some people deeply connect to my story because they live with the disease every day; others are medical students fascinated to talk to a person with PKD versus learning about the disease from a textbook. I’ve spoken to doctors and researchers who are working tirelessly to find a treatment and cure for PKD patients. One audience of eager listeners that stands out in my mind, however, was a group of third graders at Hayshire Elementary School in York, PA.
Several years ago, I had the pleasure of returning to the elementary school that I attended and sharing my journey to a gymnasium full of energetic kids who seemed excited to hear what I had to say. They made a lot of noise, like gasps and oohs and aahs, when I displayed a picture of my PKD kidneys polluted with cysts before they were removed. The students intently listened, were very interactive with me, and when it was question-and-answer time, many of their hands darted into the air, waving back and forth hoping I would call on them. It was an honor to educate these children on PKD. I wish others were so interested in learning about our disease. This event filled my heart with joy and fueled my desire to continue to share my story with people of all ages.
A couple weeks after my presentation, I received a priceless gift of handmade Thank You cards from the third graders. Tears streamed down my cheeks as I read each card, treasuring every word and all of their precious drawings. It was eye-opening to learn through their cards and artwork what they had learned from my speech.
Sometimes we just need to hear or see a different perspective on things in life to open our own eyes. It may be the smallest thing that can have the greatest impact. Let’s be open to others, hearing what they have to say, learning from them, and growing from each other. Let’s be inspired by others.
I spoke at Hayshire Elementary School with the goal of inspiring the students, and in turn they inspired me. They gave me a different vantage point into my own life and PKD, from their “Kidney Ville” drawings, to artwork of kidneys with cysts on them and their kind words. Here is the perspective of PKD from the eyes and hearts of third graders. I hope it touches and inspires you as much as it does me:
How has your perspective of PKD and life evolved since your diagnosis? Has there been a moment or individual that has had a big impact on your perspective of PKD?
I have not really had anyone to share my thoughts and concerns with. I was found to have pkd after a bad car accident where I was standing behind my car and a man in his company van came back and crushed me behind it. I got a call when home after hospital that they found something a kidney specialist told me I never had to worry about. That my kidneys were 95% covered with these cyst . Very shocking now what! My dad passed it to me and he died from it after kidney dilas. for 12 years.I am told they can not drain them because I have a kind that 3 would take place of one. So I have pain once in awhile pretty bad but kidney doctor says can not be the PKD ? So I continue to trust My Lord and Savior for my life as always
Hi Louise,
Thank you so much for sharing your PKD journey with all of us. I’m glad that you found my blog, because now you do have others to share your thoughts and concerns with. I’m sorry to hear of the tragic way that you learned that you have PKD. I hope you recovered well from your car accident. I am surprised that your doctor said that your pain can’t be from PKD, because PKD can cause severe kidney pain. I dealt with pain for awhile before they removed both of my kidneys. I’m sorry you lost your father. Twelve years is a long time to endure dialysis. I hope your health is stable and I’m wishing you all the best!
Hi Louise, I’m sorry about your Dad passing & now you’re having to deal with PKD. My daughter got PKD From me. My wife saved my life by giving her kidney to me 7 years ago. While I don’t think I ever experienced pain from PKD, our daughter suffers horrible pain from her growing kidneys & growing cysts that frequently burst & leak. Learn as much as you can about this disease & how certain foods may help you. Your blessed that you have faith & trust in God. Be strong, don’t ever give up. God put you on this eart for a reason that only He knows. You are here to help others. God bless you always, Louise. Marc
Hi Marc,
Thank you very much for your sweet message/response to Louise. I wanted to congratulate you on seven years post transplant! I can sympathize with your daughter dealing with horrible kidney pain. I dealt with that from 10 years old until I was 19 when they removed my football sized kidneys. Sending strength to her and wishing you and your family all the best!