Published April 22, 2020.
Taking place April 19–25, 2020, National Volunteer Week honors volunteers for the irreplaceable impact their time and energy make on organizations like the PKD Foundation. Our supporters mean everything to us. In 2019, nearly 2,000 volunteers dedicated over 30,000 service hours to the PKD community—thank you for everything you do. Whether it’s hosting a Walk, providing education resources, or advocating on Capitol Hill, volunteers like Carol Boeing are a key part of our vision to #endPKD. Today, she’s sharing her journey with the PKD community.
My story may be unusual but I’m sure the trauma of diagnosis is pretty common. One of my earliest memories as a small child was seeing my dad, wrapped in a blanket with chills and a fever, being rushed to the hospital. I was told that he had an incurable kidney disease. Later in life he had a back surgery, which was probably caused by pain from the PKD cysts. His kidneys eventually became big as footballs and were so infected they had to be removed. I didn’t know at that time that it was a genetic disease.
It was when I was 28 and pregnant with my second child that I was tested. My dad lay dying from an experimental transplant. His nephrologists recommended that my brother and I be tested for PKD, and I was diagnosed. I was truly devastated, thinking that my life would track like my dad’s with pain, hospitalizations, and dialysis. I remember being told by the nephrologist (after shedding many tears) that I might be 80 years old before I would need dialysis, and by then I might be able to wear it on my arm. At the time, I seriously doubted that.
During the many years afterward, I remained basically symptom free, leading an active life and scarcely remembering that I had PKD. But in May 2006 I was advised by my nephrologist that it was time to choose between dialysis or a transplant. This was my wake-up call. I’d been living in denial of my kidney failure.
I didn’t know anyone else with PKD who might help me choose between those options. A “friend of a friend” kidney patient kindly explained both options to me, sharing his experience, and I felt much better informed. My husband and I had been supporting the PKD Foundation so I called the office and talked with a very kind and compassionate Southeast PKD Chapter Lead. It was one of my best decisions. I began to be hopeful that I might be able to avoid dialysis, and I chose to get evaluated for a transplant.
When I asked, “Why is there no chapter in Nashville?” she answered, “We would love to have one there and would I consider coordinating it.” I agreed to coordinate the new Nashville Chapter in August 2006 with my daughter, who had been diagnosed at age 21.
To publicize our first meeting, we were blessed to get a newspaper article published about our shared genetic disease. That article brought PKD to the attention of many in our area. Some PKD families came to our first meeting and volunteered at our first Nashville Walk for PKD in 2007. We were delighted. I’ve coordinated the Nashville Chapter for 14 years, serving as the Walk Coordinator for eight of those years. Our friends showed up to volunteer and helped us with our dream to fund research for a cure through the Walk and other fundraisers. Our chapter also hosted awareness projects to spread the word about PKD where most people responded, “P-K-What?” We were happy to share our story.
I was placed on the transplant list in 2006. I had a poor chance of finding a kidney donor match because my antibodies were unusually high. In fact, none tested were a match. But in 2008, just in time, when my kidney function dropped seriously, I got the call from Vanderbilt—a deceased match had been found.
What a miracle transplant that was to me. Although I became septic after the transplant and stayed hospitalized for 17 days, my new kidney remained functioning strong. I was able to donate my native cystic kidneys to research when they were removed six months later. I am so grateful to have had perfect kidney function for 11 years now and to have been able to lead an active life as a wife, mother, grandmother, and piano instructor.
I am very thankful for the PKD Foundation and I feel so blessed to have attended many PKD Foundation Conferences, leadership trainings, webinars, and live telecasts with medical experts in the disease over the past 14 years. The PKDF has blessed my life with new Chapter friends, educated me in how to live a healthier lifestyle, encouraged me, and given me valuable information from a variety of doctors and researchers.
I volunteer because I want to make a difference for others like me who are caught off guard by their diagnosis and need encouragement. Life can be good again. I pray for a breakthrough in the research that will bring help for all who are battling this disease, like my daughter. It’s wonderful to know there is a way we can help fund a cure and #endPKD, and perhaps bless someone else along the way.
Volunteers are the backbone of the PKD community, ensuring no one faces PKD alone. Sign up to be a volunteer today and we will work with you to find the right opportunity. Unable to volunteer with us? Consider becoming a Hero for Hope with a monthly donation.