This month we profile two AKF Ambassadors who were honored at our national gala, The Hope Affair, on Oct. 3, 2018. Ron Krokey of Woodstock, Georgia, who spent 19 years on dialysis before his kidney transplant, received our 2018 Hero of Hope Award for his ongoing work to make life better for people on dialysis. Juan Calle of Atlanta received our 2018 KidneyNation Excellence Award for raising over $38,000 to support AKF programs and services in memory of his sister Laura.
1. What made you want to become an AKF Ambassador?
Juan: My younger sister Laura Calle battled chronic kidney disease during the latter part of her life. She lost the battle to this horrible disease at age 26. It is because of her that I decided to get involved with AKF. She made a decision to get involved with AKF and raise awareness about kidney disease prior to her passing. I am carrying her torch and doing as she would.
Ron: Once I started to become more involved in my own health, it naturally progressed to becoming an advocate for others. My mom died from kidney failure. She was the most caring, kind and generous person I have ever known. She always helped people whenever possible. She taught us to be kind, and to encourage and help others whenever you can. When I started making great strides in my own health, I wanted others to see what was possible.
2. How has being an Ambassador helped you?
Juan: Being an Ambassador has brought me closer to my sister and her spirit. If Laura were still alive, she would be an Ambassador. I am happy to be able to help those who are battling the same struggles my sister battled throughout her last years.
Ron: Being an Ambassador for others has strengthened me immensely. When I started helping myself, it naturally led me to help others. This has an incredible ripple effect. It not only helps others in a direct manner but then spills over into their families. When patients feel the support and backing of others, it motivates them to try harder. Once they start trying.... they find it hard to stop and they grow stronger and stronger in all areas of their lives. It is a beautiful thing to behold.
3. What have you learned from being an Ambassador?
Juan: The huge impact that this disease has in the U.S. and especially in minorities and lower income communities.
Ron: I have learned that being an Ambassador helps put life in a different perspective. We must always be mindful of ourselves and our health but the larger and more important goal in life is to help others. Share your blessing to those that feel alone and lost. That is what really matters. Give others hope by knowing that they are not alone. That is the greatest gift AKF gives to us. Hope.
4. Why should others become AKF Ambassadors?
Juan: Our voices are heard in numbers. Patients battling chronic kidney disease have many limitations in what they can do daily. We need to speak up on behalf of the millions of patients suffering that have no voice or little ability to fight for themselves.
Ron: Others should be Ambassadors because it helps them focus on doing something bigger than helping themselves. Helping others is the most noble act a person can do. When you help others, you are deeply helping yourself. When you help yourself, you want to help others....and so on and so on. It feeds off itself and raises everyone to new heights that you could swear were unattainable.
5. What is something you’ve learned about kidney disease and dialysis that you wish you knew a lot sooner?
Juan: The fact that symptoms may not be present until it is too late.
Ron: In the beginning, I wish that I knew how strong I really was. By the grace of God, I could do things that I would have never imagined. The old saying, "every journey begins with a single step" is so true in every way. When you find out that you have kidney disease or need to start dialysis, you panic. You think your life if over. It is terrifying. I learned much later that if I just started trying to do a little bit more, I would astound myself and accomplish feats that boggle my mind.
7. How would you like to stay connected to other Ambassadors?
Juan: I would like to stay connected to other Ambassadors through social media, newsletters and updates about opportunities to get involved in our communities.
Ron: The best way I have been able to stay connected to other advocates is by being active at the ESRD Network level. Another great way is to participate in events like AKF’s Kidney Action Days around the country.
8. What are your best tips to get through the dialysis treatments?
Juan: Family and community support is very important for those undergoing dialysis treatments.
Ron: Understand how necessary and important it is. Don't fight it, embrace it. Stay as active as possible and be in the best shape you can. It makes the ugliness of treatments much less ugly and actually bearable. I exercised EVERY night after treatment. EVERY night. It helped me push the blahs away and the endorphin release made me feel great.
9. What do you wish elected officials knew about dialysis patients?
Juan: I wish that our representatives understood the daily struggles of kidney disease and the economic hardship endured by the patients affected by this.
Ron: I wish elected officials knew how taxing dialysis is on the body and that they should be encouraging the actions of AKF. AKF exists to help patients. Kidney disease may not be a sexy disease, but research should still be properly and equitably funded.
10. Do you have any advice for newly diagnosed kidney patients?
Juan: Take action as soon as possible. Follow your doctors’ orders. Your actions on a daily basis will dictate the future of your disease.
Ron: You are so much stronger that you can possibly imagine. This disease wants to break you. Stand up and fight this disease and don't fight fair. Take ownership of your health, know your lab numbers and get into beast mode. Fight this disease not only for yourself but also for your family. Let them see what a fighter looks like. It will make them stronger as well.
11. What did it mean to you to win your award from AKF?
Juan: It was an honor to be recognized with this award. I accepted the award on behalf of my sister Laura. My involvement with AKF is because of her and in honor of her life and her wishes to help others who are battling this disease. She is my driving force, and I will continue to try to help those who are suffering from this disease.
Ron: Winning the Hero of Hope Award was very humbling. Hopefully, it encourages other patients to be an advocate and to step up and help those around them. When kidney patients see other kidney patients succeeding, it breeds hope, encouragement and action. We show each other that a fruitful and happy life is attainable even though we have this horrible disease. It also rekindled that fire in me to continue to try to make a difference in kidney patients lives. If not me, then who? I have been blessed. I owe it to share that blessing.