Remembering a leader in patient advocacy

Remembering a leader in patient advocacy
Dale Ester passes on

By Mark E. Neumann, NN&I executive Editor

This past week, family and friends buried Dale Ester, 50, a kidney/pancreas transplant patient from Queen Creek, Ariz. I met Dale years ago at an American Association of Kidney Patients annual conference here in Phoenix, an organization he was involved in. We kept in touch; Dale wrote articles for NN&I, we shared viewpoints on bringing mandatory technician certification to Arizona––he helped to initiate that campaign––and he served as an unofficial liaison between patients who had issues with their dialysis provider. Dale never dodged the bullet; when it was easy to back down and side with the provider or grievance committee, he searched for one more approach to reach an agreement.

It is often said that a transplant is the gift of life, and Dale, who was diagnosed with diabetes before the age of 10, did his best to protect his gifts---and use them to their fullest. At the time of his death, Dale was on an annual family camping and elk hunting trip. He had been putting off coronary bypass surgery – a side effect of the transplant drugs he was taking. He died before he could get it done (perhaps that was one bullet he was hoping to dodge…)

But what made his own gift to life even more measurable was the outreach he achieved through his patient listserv. Over 1,000 patients from around the world knew Dale Ester, and looked to him for advice and counseling. A virtual guest book set up at www.azcentral.com includes submissions from all over the United States and abroad.
Wrote Patricia Colongione of Albany, NY: “…Gosh how I needed Dale and the others as I started to cope with my husband's dialysis. This group is truly a family of our own and we have lost one of our very own family. Dale will forever be remembered for his kindness, knowledge and outstanding care of the support group.”
Wrote Susan and Stan Kopczyk, of Yorktown, Va., “My deepest condolences to Dale's family. He was truly a great man and, for my family, a gift from God. My husband has ESRD and Dale and his website have answered our questions and held my hand in the hard times. He has touched so many lives across the world.”

And, from Ramesh Swaminathan, in Hyderabad, India: “My family has been in deep grief with the news of Dale's passing away. The ESRD group set up by him was the only lifeline we had to understand the disease and various treatment options when my Father was diagnosed with ESRD. He promptly replied to my emails and helped us in handling emergencies when they came up. May his Soul rest in peace. What a great man he was. He had enlightened our house with his knowledge and I feel a lot poorer without him around in this world. Thanks Dale. Thanks a lot for all the great work you did for people like me.”

Dale was the Ann Landers of patient advocacy, helping those who didn’t understand kidney disease and how to cope with the stress it placed on self and family. The listserv helped him reach out to many who he never met, but helped to steer them through the emotional upheaval of a chronic illness.

Dale started the dialysis_support listserv in 1995, and “it was truly a labor of love,“ wrote Dori Schatell, who along with dialysis patient Bill Peckham helped Dale with moderating the listserv. “He devoted countless hours to reading and editing posts, moderating discussions, looking up information, and administering all of the details to keep it
running smoothly.

“When I joined dialysis_support in 1997, there were about 250 members. As of today, there are 1,223. All of this is even more extraordinary if you met Dale--due to diabetes, he was legally blind,” wrote Schatell.

Dale’s presence as a husband, brother, and son will be missed. Likewise, his contributions behind the scenes to help patients cope every day with renal disease will never be replaced. Thank you, Dale.

Editor’s Note: until the dialysis_support listserv is reorganized, patients can go to
"Dialysis_Support Listserv Discussion" http://www.lifeoptions.org/boards/forumdisplay.php?f=32 to participate in a patient discussion group.

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