Making a Difference in Washington: Interview with an Advocate

Earlier this month, the American Kidney Fund (AKF) hosted 10 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, Monica Jemison from Waukegan, Ill., to hear about her experience on Capitol Hill.

Kidney Today: What is your experience with kidney disease?

Monica Jemison: Kidney disease is no stranger to my family. My father developed kidney failure as a result of high blood pressure and received a transplant six years ago. In 2011, I also learned that my own battle with high blood pressure had resulted in chronic kidney disease and I would eventually need a transplant.  When I received this news, my kidneys were only functioning at 15 percent.

Kidney Today: How did your life change when you found out you had kidney disease?

Monica Jemison: It was a wake-up call! I immediately learned how to make healthy changes to my lifestyle. While it is not for everyone, my doctor suggested I have bariatric surgery. After surgery, I worked with a nutritionist, exercise therapist and others to ensure I was on the right track. I began exercising and experienced weight loss. I also adopted a healthy eating plan consisting of a diet low in fat and sodium and continue to have regular appointments with my nutritionist to ensure my diet is on par for my kidneys, as well as to maintain the weight loss.

When I first began exercising, I could only walk a few minutes very slowly. I have built up to an hour of exercise a day, but I listen very carefully to my body because I do not want to overdo it. My goal is to run a marathon one day to prove to myself I can beat this disease.

You always hear that making positive lifestyle changes can improve your life, but many people don’t ever take those steps and experience the life-changing benefits I did. I want everyone reading this to know that it is possible to improve their health. If I can do it, I know you can do it. As a result of managing my condition closely with my nephrologist and adapting healthier habits, I have been able to raise my kidney function to 21 percent and avoid starting dialysis for the time being.

Kidney Today: Why are you an advocate? Why is kidney advocacy important to you?

Monica Jemison: I’m an advocate with AKF because I want to prevent people from suffering from this devastating disease.  Though it’s a silent killer, showing no symptoms at first, many cases are preventable. If I can do my part raising awareness and preventing kidney disease through educating others, then I feel like I have helped in the effort to fight this disease. The leading causes of kidney disease are diabetes and high blood pressure; I had the latter, and now I am living with only 21 percent kidney function and fighting every day to stay off of dialysis.

Kidney disease can also be caused by hereditary or congenital conditions. That’s scary to me because even though you are practicing a healthy lifestyle, you can still develop kidney disease. But again, that’s a reminder why screening is so important. Early detection of kidney disease leads to better health outcomes.

Kidney Today: You were invited by AKF to participate in our fifth annual Kidney Action Day on the Hill. What was your first thought when you were asked to go to Washington and speak with legislators?

Monica Jemison: In all honesty, my first thought was ‘Oh my goodness, can I really do this?’ I signed up as an advocate because I wanted to help, but I never thought I would actually be chosen to attend such a special and life-changing event. I had so many emotions when I found out I was asked to visit Capitol Hill–a combination of surprise, apprehension and overall excitement.

Kidney Today: When you met with your Congressional representatives’ offices, what did you share with them?

Monica Jemison: I met with the offices of Sen. Richard Durbin (D-IL), Sen. Mark Kirk (R-IL) and Rep. Bradley Schneider (D- IL 10), and shared with them my personal story of how kidney disease has affected my family and me, and my experience achieving a healthier lifestyle to delay dialysis.

I also shared with the offices the importance of access to quality care for individuals on dialysis and those living with transplants, which includes adequate funding for the Medicare ESRD program for dialysis patients. I am proud that last February, Sen. Durbin introduced The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act. This bipartisan legislation will improve the quality of life for people with kidney transplants by ensuring transplant patients have access to rejection-preventing medications for the entire life of the transplant.

Kidney Today: Do you feel like you made an impact?

Monica Jemison: Not only do I feel like I made an impact, I know I did.

One of the things I did was urge my members of Congress to join the Congressional Kidney Caucus, and my Congressman did! After I met with Congressman Schneider’s office, he immediately took action and joined the Congressional Kidney Caucus. And if that wasn’t enough, a few days after I met with him, he signed on as a co-sponsor of The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act. I couldn’t have asked for better results. My voice was fully heard, and I feel blessed to have made a difference.

Kidney Today: What will you remember most about your experience on Capitol Hill?

Monica Jemison: It was my first visit to our nation’s capital. It was so exciting to be in the middle of all the action and to see the House and Senate floor. Meeting with my legislators is an experience I will never forget and an opportunity for which I will forever be thankful because it changed my life.

Kidney Today: You mentioned the visit to Capitol Hill changed your life. How?

Monica Jemison: Meeting the other nine patient-advocates reminded me how much kidney disease affects millions of people in our country, from a dialysis patient to a donor, even to the caregiver. This experience sparked something inside me, and I learned that my passion in life is to help others with kidney disease and other chronic conditions. I have decided to go back to school beginning in May to pursue a degree in public health education so I can help people every day and continue to make a positive difference in others’ lives.

Monica Jemison from Waukegan, Ill., is a member of the American Kidney Fund’s Advocacy Network.

Posted: | Author: AKF Staff

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