Last year I was visiting my grandmother in the hospital. She was in end-stage renal disease (ESRD) and experiencing heart failure; it was brutal. I went to the hospital cafeteria and saw my cousin Darrell. He didn’t look good. I asked if he was okay and he informed me that he was having heart issues. I felt my anxiety level rising. Darrell had gone into renal failure on the side of the road nine years ago when he was only 21 years old. I listened intently as he said, “I am scared. I can’t talk to my Mom and Dad, but I know I can talk to you.” When I looked into his eyes and saw fear, I knew I had to find help or at least some hope. KPMP scientists are both.
I knew I had to find help or at least some hope. KPMP scientists are both.
When I was invited to attend the KPMP meeting, I thought “What the heck is KPMP? Kidney Precision Medicine Project?” I rolled my eyes. Smarty-pants scientists have come up with yet another acronym that means absolutely nothing to me. This already sounded questionable! Despite my reservations about what I would find in D.C., I couldn’t leave that stone unturned and I had to go. Now I am glad I did. The KPMP team is the future.
The nine family members I have lost to CKD did not die in vain. As a patient advocate, I understand the brevity of life. A longitudinal study is long-term, 15 years or more. KPMP scientists are obtaining voluntary research biopsies from current patients in order to create better options for future patients. Teams of scientists from multiple disciplines are working together; I nicknamed them the Kidney Calvary.
After taking it all in the first day I certainly didn’t understand everything, but I understood enough. I knew that I was sitting with a group of scientists who were about to make history. I went back to my room and cried.
I knew that I was sitting with a group of scientists who were about to make history.
As a patient advocate for KPMP, I listened to the scientists and researchers while trying to understand all that I could. The research is fascinating, complicated, and clearly prolific. The technology and medicines that will aid kidney patients of the future are going to come out of this patient-focused research group. Patients informing scientific investigators? Wow, that is an often talked about, but rarely attempted.
In my family kidney disease has been devastating. It was indescribably difficult to watch the toll that it took on the lives of my family members. One-after-another I watched the disease take their joy, their health, and eventually their lives. Each going from being gregarious and full of life to simply existing.
Darrell is the catalyst that caused me to become a voice for patients. I couldn’t watch this happen to him or anyone else without a knock-down-drag-out fight. The Kidney Calvary are the strongest warriors we have in this fight. They are dedicating years of their lives to this longitudinal study. Thoughtfully, they are making an effort to include patient input in every phase and aspect of the study.
The Kidney Calvary are the strongest warriors we have in this fight. They are dedicating years of their lives to this longitudinal study.
I spend a lot of time thinking about healthcare. I am consumed with the desire to help others avoid the fate of my family members. I publicly put on a calm optimistic face; as a patient advocate, my job is to provide hope. When I am alone my fears regarding kidney disease still take my breath away. The KPMP Kidney Calvary have calmed those fears. I can see the future when I look at their work. The answers are in the biopsies.