As a dialysis patient himself, advocating for Ryan isn’t just personal, but is all about improving care for all kidney patients.
What made you want to become an advocate?
My decision to advocate on behalf of myself and other kidney patients was born out of my frustration both at my health situation and my thoughts that we, as dialysis patients, were not getting the care that we need.
How has kidney disease affected you and what has been your biggest challenge?
Kidney disease has turned my life upside down. I have lost almost every material thing that is valued so much in this life - except my life.
How has being an advocate helped you?
Being an advocate has helped me because I’m not just waiting around for the next shoe to drop. I’m fighting not just for my life, but for the well-being of my fellow warriors.
What have you learned from being an advocate?
I learned a lot since becoming an advocate, from legislative issues and priorities that effect kidney patients, to the myriad of activities that we as kidney patients can get involved in to help in the fight against this silent killer.
Why should others become advocates?
Becoming an advocate gives you something constructive to do that isn’t just about just you, but about helping improve the lives of kidney patients everywhere. It gives you a sense of purpose and fulfillment that is worthwhile and satisfying.
What is something you’ve learned about kidney disease and dialysis that you wish you knew a lot sooner?
Kidney disease may be slow and sneaky, but you can’t afford to ignore it. Educating yourself about kidney disease is your best defense to know what you can do to slow its attack and maybe even prevent it from getting worse. Being an advocate for yourself first and then others should be your priority.
How would you like to stay connected to other advocates?
It is important to stay connected with others that are on this journey as well. Become involved with support groups either locally or online. There are numerous helpful and supportive Facebook groups and other websites that will allow to stay connected with your fellow kidney warriors.
What are your best tips to get through the dialysis treatments?
Take everything one day at a time, don’t focus on what the next treatment or exchange will mean. Put yourself in a position to be successful at this. Listening to music or watching youtube videos or movies will occupy your time. Communicate with your healthcare team… If you don’t tell them, they won’t know.
What do you wish elected officials knew about dialysis patients?
People on dialysis are still people. We can be productive and creative members of society that should be treasured and not ignored. No one chooses to end up with ESRD, and those of us that walk this road, need your support and encouragement.
Do you have any advice for newly diagnosed kidney patients?
Keep a copy of all your tests results and engage your healthcare team about any questions you have. There will be good days and bad, just remember that whatever doesn’t kill you makes you stronger.