What made you want to become an advocate?I became an advocate because I wanted my voice to count. I wanted to speak for others living with kidney disease who can't speak for themselves.
How has kidney disease affected you and what has been your biggest challenge? Kidney disease affected me by changing the course of my life. I was going to pursue a career in law enforcement and kidney failure changed everything. My biggest challenge was coming to terms with losing that control aspect of my life because I am now dealing with an illness that I have no control over and for which there is no cure.
How has being an advocate helped you? Being an advocate has helped me realize that there is something I can do, I can effect change. Change in the way others think about those of us who live with it and changes in government policies.
What have you learned from being an advocate? Being an advocate I've learned that I'm a part of a community of patients that are all passionate about making positive changes so all patients living with kidney disease can have a higher quality of life.
Why should others become advocates? I think others should become advocates because although you're advocating for patients with the AKF, you are also empowering yourself by having that voice, by telling your story and shedding light on what we live with as patients.
What is something you’ve learned about kidney disease and dialysis that you wish you knew a lot sooner? Years ago when I was first diagnosed I had no clue of anything concerning kidney disease. I now know it’s not a death sentence and being compliant is the key to longevity living with kidney disease. 26 years and I am still here.
How would you like to stay connected to other advocates? I think as advocates we all have something to contribute? I feel there should be a contact directory so I can continue to stay in touch with the amazing people that I've met. I think as advocates we all have something to contribute. I feel there should be a contact directory so I can continue to stay in touch with the amazing people that I've met.
What are your best tips to get through the dialysis treatments? I've been able to cope with dialysis treatments by occupying my mind with anything but the treatment. I've read books, written short stories, had conversations with fellow patients, watched movies and slept. Sleeping was my favorite.
What do you wish elected officials knew about dialysis patients? I want elected officials to understand that dialysis patients are just people who want the best care possible. We don't expect to be treated better than anyone but at the same time we certainly don't want to be forgotten.
Do you have any advice for newly diagnosed kidney patients? My advice to patients who are newly diagnosed is to be compliant. Follow your doctor’s orders, put yourself in the best possible position to receive a transplant when a kidney becomes available for you.