My grandmother died in 1961 at the age of 56 from Polycystic Kidney Disease and in June of 2013, I turned 56. As a way to honor her memory and the many family members who have died from PKD I decided to hike the Camino de Santiago. The Camino de Santiago or “The Way of Saint James” is a pilgrimage to the Cathedral of Santiago de Compostela in northwestern Spain. Legend has it that the remains of the apostle Saint James lie buried in the Cathedral. The Camino has existed as a pilgrimage for over 1000 years. We chose to hike the Camino Frances. The Camino Frances starts in St. Jean Pied de Port, France and ends 500 miles later in Santiago De Compostela.
My husband Randy and I started our hike at St. Jean Pied de Port, France on September 21st and spent our first day crossing over the Pyrenees into Roncesvalles, Spain. One of the most beautiful sites we hiked past on that first day was the Vierge d’Orisson near the top of the Pyrenees.
Some of the other highlights were Alto del Perdon, the “Height of Forgiveness” that features a wrought iron representation of medieval pilgrims with their heads bent into the west wind. The inscription on the monument reads “Where the path of the wind crosses that of the stars.”
The highest point on the hike at 1,500 meters was the Cruz de Ferro, a simple iron cross on top of a mound of rocks left by pilgrims on their journey to Santiago. Tradition is to leave a stone from your homeland as a symbol of your journey. Seeing the cross and the stones in this windswept and beautiful setting was a powerful experience.
Later, we had a steep hike out of Villafranca, but were rewarded with a walk through an amazing chestnut forest. Hiking out of O’Cebreiro in the mountains of Galicia, we saw a change in the weather as we approached the western coast of Spain. We spent several days hiking in rain and fog.
The last 100 km passed quickly as we neared Santiago. Our Camino ended at the Cathedral of Santiago de Compostela where we attended the Pilgrim’s Mass and viewed the relics of St. James. After presenting our “pilgrim passports” at the Pilgrim Office, we received our Compostela, a document still written in Latin that confirms our completion of the pilgrimage to Santiago.
I felt very proud and overwhelmed to receive my Compostela. I know that I am very blessed to be able to make such a Pilgrimage. I spent so much of my time on this journey thinking of my family and the hardships they have faced due to PKD. I am able to trace PKD back to my great grandfather who died at age 52 in 1916. My grandmother died at age 56 in 1961. She was not able to receive dialysis as it was a new concept at that time in treating PKD.
My mother died at age 72 after many years on dialysis. What is extraordinary is that she came from a true autosomal dominant family. She was one of twelve siblings. Of the twelve siblings exactly six had PKD and they were all female. They have all passed away from PKD, except for one aunt.
Due to the large number of offspring from the six women, PKD is rampant in my extended family. I am one of four siblings. My older brother and I have PKD. My brother was blessed to receive a kidney from a younger brother and is doing quite well. I have four children and my three sons have been diagnosed with PKD.
My sons and I have all participated in clinical trials the last few years. We are fortunate to be near The Children’s Hospital and The University of Colorado Health in Denver. Both hospitals have strong and friendly research departments.
Over the years since my diagnosis I have relied on the PKD for education via newsletters and conferences. I have attended many conferences and especially enjoyed those in Washington, DC. I particularly remember lobbying my congressman.
I set up a Facebook page that chronicled our hike with updates and photos. I asked them to consider making a donation to the PKD Foundation to help further research. I was so pleased with the outpouring of donations and encouragements during our hike.