Those following the blog for the last three years know that I was diagnosed with kidney disease. Every March, National Kidney Month, I use my story to educate and encourage. And in honor of World Kidney Day (opppss…one day off), I want to share my greatest story yet.
I had the honor of participating in the American Kidney Funds’ Kidney Action Day on the Hill. I was one of 12 advocates chosen to speak with congress members about my personal story and how legislation and budget appropriations affect those with kidney disease. This was the fifth year AKF has done this and it was my turn to tell my story.
The first day was advocacy training. We were greeted by the President of AKF and she thanked us for our courage and strength. We met with the ladies who were responsible for putting the trip together (booking our flights, aligning interviews and meetings, making sure we had everything we needed). We learned how to convey our messages to Congress and how to handle the media. But the best part was hearing the stories of the other advocates.
Sitting in the room listening to al those people on dialysis, I almost felt like I shouldn’t be there. After all, I only have moderate CKD (Chronic Kidney Disease) and control mine with medication. But that’s why I was here to tell of different struggles. I was the only one who was immunocompromised. And listening to these people’s stories gave me hope. They had full lives and were loved. I have hope.
One young man had a very different story. He had actually donated a kidney to his mother. He wanted to tell Congress that kidney disease doesn’t just affect the patients; it affects whole families. He also moved me to tears because he reminded the advocates that we are loved that our true friends and families don’t think we are a burden and they want us to be around for as long as possible.
Onto Kidney Action Day! Each advocate was meeting with the Senate and House Representatives for their state if their offices were available. I met with representatives from Jeff Sessions, Richard Shelby, and Martha Roby’s offices. I also met with an assistant for the Committee for Health, Education, Labor and Pensions (this committee reports back to the President!). This one was really exciting because it was a group meeting, and the advocates got to bounce ideas back and forth with the representative.
What really moved me in that the people in Congress cared. They listened to my stories. They asked me questions and were receptive to the fact that policies could negatively affect my life. I discussed were not cutting funding for research, education, and prevention. This meant a lot to me personally. My doctors aren’t sure if my kidneys were affected by my immune issues or if the immune issues were caused by my kidneys. This is truly something that needs research into.
We also discussed Medicare and funding for immunosuppressants for transplant patients. Medicare was going to cover these drugs for three years after the transplant and then leave the transplant patients on their own. For people with any kind of transplant, you have to take them your entire life or your body will reject the new organ. As I told Congress, this scares me for my future. If I am able to get a kidney transplant, how long would be able to keep it? I received great news Tuesday. This policy will not affect me; it has been thrown out and now people on Medicare don’t have to worry about not getting their medication,
AKF also set up a kidney screening on Capitol Hill. These free screening gauged blood pressure and diabetes which are risk factors for kidney disease. Advocates shared their stories to the crowd and Pink Berry gave out free yogurt (yum!). Special speeches were made by Mark Rubio head of the Kidney Caucus and Congressman Jim McDermott. Not only were we challenging policies we were challenging people to live better.
I can’t conclude this story without talking about my own personal “advocate.” We each had a chaperon from the AKF staff who accompanied us throughout the day. They helped get the services we needed and made sure we hit all our talking points when speaking with Congress. My chaperon had a big task ahead of her. I am mobility challenged and she had to push a wheel chair. I was unable to rent a scooter because the chairs had to go through Congress security. She never complained and helped me every step of the way. She was such a kind hearted woman and it brings tears to my eyes to know that people like her do exist. I was blessed that she crossed my path and changed my life.
That night we had dinner at Ruth’s Chris Steakhouse. It was a family atmosphere and we shared large sides and just enjoyed each other’s company. We had filled our bellies, our hearts, and our minds. The trip was a blessing and each and every one of us was changed that day.
I cannot begin to truly explain this feeling in my heart. I changed the world. I made a difference! My future with kidney disease is now a little bit brighter. I can’t thank God enough for this blessing.