Robin Tobler with her grandchildren at NKF's Kidney Walk in Phoenix
Here Robin Tobler, MSW, LCSW, a clinical nephrology social worker who suffers from polycystic kidney disease, shares her experience of participating in a clinical trial.
Hereditary polycystic kidney disease (PKD) runs in my family. My mother had PKD which she inherited from her mother, and now four of my siblings and I all have the disease. My mother was on dialysis for 14 years before her death. My older brother, who did not get the PKD gene, was able to donate a kidney to my younger sister and I’m happy to report she’s on her 11th year with that kidney. My other two siblings, both brothers, also have PKD. One received a transplant four years ago in Seattle and the other brother received a kidney two years ago from the Mayo Clinic. This kidney disease has hit our family hard and I was happy to do anything I could to try to help researchers understand this disease better and try to find ways to delay the onset of kidney failure.
For almost five years, I participated in the HALT PKD study out of University of Colorado, Denver. During the study, researchers would provide me with roundtrip tickets from Southern CA, where I was living, to Denver on a Sunday and I would use a personal day for Monday to stay on the research floor of the hospital there. They would perform routine tests and keep me there overnight to meet with the doctor or nurse practitioner working on the study. In the beginning I did this more frequently and the last few years just twice a year. They provided me with a lot of education about kidney disease and PKD in particular. It was interesting to learn about how high blood pressure affects the kidneys and the importance of drinking a lot of water when diagnosed with CKD.
Of all my siblings with this disease, I am the only one who has not had to go on dialysis. I give a lot of credit to the study for this because I really tried to follow their advice. I was unable to remain on the main study drug because it greatly raised my creatinine; however they felt that collecting data on those participants who weren’t on the primary study drug was as valuable as collecting data on those who were on that study drug. While at home they provided me with other blood pressure medications throughout the study and I was advised to drink plenty of water and monitor and record my blood pressure regularly (they provided a blood pressure monitor). They offered to communicate results with my local nephrologist. I recently stopped the study because I reached their “endpoint” (GFR of 20 or below).
Overall it was a very good experience. I was pretty nervous when it all started – wondering if I had time in my busy schedule to participate, wondering if I would be able to “go the distance” in a 5 year study, and wondering if I’d be treated as a number or as a person. I’m happy to report the researchers at the HALT PKD study were very gracious with me and helpful. I had such a good experience getting to know them, and I came to look on my time in Colorado as my little “retreat.” When I wasn’t needed for study purposes, I could read, watch a movie, talk to other study participants, or visit the gift shop, or little outdoor secret garden area. It was a peaceful time for me to write in my journal, or visit the little hospital chapel for some reflection time.
I truly believe that participating in the research study helped me to gain a better perspective on my illness. It’s not as “out of control” as it felt at first. I learned there are a few things I can do to help slow the progress of the disease. I feel a lot of gratitude for people who dedicate their lives in research to help others.