AKF Ambassador Spotlight: Nieltje Gedney

What made you want to become an ambassador?

I am committed to being an advocate for home dialysis. The more exposure I have with different groups better enables me to both understand what patients want, and help patients understand the benefits of home dialysis. On the advocacy side, every organization presents a different perspective to government, congressional, industry and patient groups, so participating as an AKF Ambassador broadens my reach.

How has being an ambassador helped you?

Being part of a credible organization strengthens my advocacy and education efforts.

What have you learned from being an ambassador?

Being an AKF Ambassador has broadened my horizons, opened doors for other advocacy opportunities, and helped me understand what it is that AKF does, and how they are dedicated to helping patients.

Why should others become ambassadors?

Everyone should participate in their care as much as possible. This includes self-care, self- management, and expanding your responsibilities as much as you can to improve conditions, treatments and renal replacement therapies for CKD and ESRD patients. Someone helped pave the way for us, and I believe we have a moral responsibility to pass it on, at whatever level you can manage.

What is something you've learned about kidney disease and dialysis that you wish you knew a lot sooner?

Everything. While I did research as much as possible about CKD during the 20 years I was avoiding dialysis, I had my head in the sand when it came to dialysis. I was totally unprepared when I crashed into dialysis, and went through the first months in a fog.

How would you like to stay connected to other advocates?

Always. Advocacy is a huge part of my life, and learning from others makes me a better advocate.

What are your best tips to get through the dialysis treatments?

I have been doing home dialysis for almost 6 years, and truthfully, I look forward to my treatment. It is almost soothing, since I can regulate my treatment and fluid removal so as to not stun my system. I have no recovery time, and feel really relaxed during the treatment. I use the time as "me" time, and veg out on streaming British murder mysteries.

What do you wish elected officials knew about dialysis patients?

The cost not only in dollars for treatment, but the untold cost in lost wages, self-esteem, overall health due to comorbid conditions, and quality of life. Research for CKD and Renal Replacement Therapy is lower for kidney disease than any other illness, and yet it has the greatest impact on the CMS budget for Medicare. The total cost of CKD and ESRD is 1% of the total Federal Budget – sounds small, but when you look at that in numbers it is huge and only going to get bigger!

Do you have any advice for newly diagnosed kidney patients?

Learn everything you can about your disease. Take an active role in your care and treatment. Learn about your lab values, all of them, and what your treatment parameters are. Understand all your treatment options, and choose one that will fit your lifestyle.  I believe that dialysis done right should not hurt, and if it does, it is your job (and the job of your medical team) to find out why.

How does it help having a family member be part of the process?

Actually, I preferred not to have anyone participate in my care. It is my disease, my treatment. I prefer to manage it myself, leaving my time with friends and family free for fun!

What do you wish other family members knew about kidney disease or knew about helping others?

Encourage the patient to understand his disease and treatment, to take charge in the management of both. An engaged patient is a healthy patient.

What are some interesting facts about yourself that you'd like to share?

At 67 years old, I have the luxury of looking back at my life and wondering what I'd do differently. What seemed like a disconnected hodge-podge of careers, beginning at 16 working on Capitol Hill, doing accounting and business management for small businesses, administration jobs at private schools, advocating for lowering the voting age, and passing the Violence Against Women Act, working at VAW, Victims of Crime office and Juvenile Justice, and marketing and sales for large newspapers nationwide, all came together when I began working for Home Dialyzors United. As a small non-profit with a limited budget, all the skills I learned over the years have blended together and helped me take the organization to the next level.