Changing the Lives of Kidney Patients: Interview with an American Kidney Fund Advocate
In March, the American Kidney Fund (AKF) hosted 12 advocates from our Advocacy Network in Washington to meet with legislators and raise awareness for kidney disease prevention, education and research. We sat down with one patient-advocate and AKF grant recipient, Ronald Krokey from Woodstock, Georgia, to hear about his experience on Capitol Hill.
Kidney Today: What is your experience with kidney disease?
Ronald Krokey: My experience with kidney disease began with my mother, who passed away in 1993 due to kidney failure. I don’t have the disease that she had; I have focal glomerulosclerosis (FSGS). In 1988, I was as healthy as could be. I participated in a triathlon, ran 10Ks and worked out four days a week. During an unassuming health screening, I was told that my blood pressure was a bit high. I went to the doctor and had it checked out. They found protein in my urine, which can be a sign of kidney disease. They then ran a battery of tests, including a biopsy, and determined that I had FSGS.
In 1999, I started peritoneal dialysis, which I was on until 2009 when I got a severe case of peritonitis that turned into septic shock. I was in the hospital for seven weeks, lost 70 pounds and could barely walk or breathe. My strength was gone, and I was collecting fluid in my abdomen, under my lungs and around my heart. I switched over to hemodialysis, which I am still undergoing. Since then, I have slowly and steadily increased my physical activity and walk a mile each day. Also each week I swim three miles, do 8,600 crunches, 1,700 shoulder lifts, and 1,700 light weight curls.
Kidney Today: How did your life change when you found out you had kidney disease?
Ronald Krokey: In the beginning, I tried to let it change me as little as possible. I had three young sons and didn’t want to miss out on anything. I coached all of their baseball, football and basketball teams. We hiked all the time. The biggest, immediate change was my diet. I had to watch what I ate to be sure it was renal friendly. I also had to go to the doctor’s office every month to have my blood chemistry monitored.
Kidney Today: Why are you an advocate? Why is kidney advocacy important to you?
Ronald Krokey: I’m an advocate because I have been blessed with another opportunity to help people. I should have died in 2009, but by the grace of God and the strength of my wife, Andrea, I am still here. Being an advocate is the least I can do to help the community that I’m a part of. If not me, then who? We all need to try to help each other. I’m far from perfect, but I do know how nice it is when someone helps me. Our cause is noble and worthy. Our advocacy changes and improves lives.
Kidney Today: You were invited by AKF to participate in our sixth annual Kidney Action Day on the Hill. What was your first thought when you were asked to go to Washington and speak with legislators?
Ronald Krokey: My first thought was, “Woot! Woot!” Followed by, “What in the world am I going to say?” I was very excited to be able to participate in this event. For me, going to Washington to talk to legislators is like throwing a kid in a candy store. Although there was certainly an intimidation factor at first, the outstanding training done by the AKF staff greatly reduced my initial nervousness.
Kidney Today: When you met with your Congressional representatives’ offices, what did you share with them?
Ronald Krokey: The meetings started with a discussion about The Chronic Kidney Disease Improvement in Research and Treatment Act of 2015. This is a bi-partisan bill aimed at addressing improvements in research, treatment and care of chronic kidney disease. There are 30 million Americans who have chronic kidney disease (CKD) – that’s an incredible amount! Two-thirds are caused by high blood pressure and diabetes. Once the kidneys fail, the only choice the person has is dialysis or transplant. There is no cure. Kidney disease also disproportionately affects minorities. This bill attempts to address these important issues. I also shared some of my personal story with legislators. They were as kind and accommodating as you would hope.
Kidney Today: Do you feel like you made an impact?
Ronald Krokey: Yes, I believe we did make an impact. We certainly informed them of our concerns and issues. Time will tell if they end up supporting the bill. I have had follow-up communications with each of their offices and not just the canned, “Thank you for your concern, and we look forward hearing from you in the future.” In fact, I plan on meeting with my Georgia Senators and Representatives at their local offices when they are in-district.
Kidney Today: What will you remember most about your experience on Capitol Hill?
Ronald Krokey: I will remember most how engaging and kind Rep. Barr of Kentucky and Rep. Loudermilk of Georgia were and how friendly the legislative staffers were. They all made us feel like what we were saying mattered to them. Some had very personal family connections to CKD and end-stage renal disease (ESRD). Lastly and maybe most significantly, I will remember how fantastic the AKF staff and support people were. Everyone made us comfortable and knowledgeable about the topics that we were going to discuss. They are changing lives for the better. Not just mine, but millions of others.
Ronald Krokey from Woodstock, Georgia, is a member of the American Kidney Fund’s Advocacy Network.