Remembering Celeste Castillo Lee

Editor's note: Celeste Castillo Lee, a dialysis patient for 30 years and a patient advocate, died Feb. 9, 2017. She was 51.

I met Celeste when we were both speaking at a professional meeting and decided to have dinner together. We learned we were both Leos and laughed about how that played a role in how we approached health care.

Her insight, knowledge, and way with words were invigorating. I had met a kindred soul who had traveled the same path. She joked about being asked “How old are you?” and her replying “I’m aging in dog years.” The joke became the topic of an article she wrote for RSN where she shared specific strategies she utilized through the years to cope with kidney disease. Her voice was memorable and if she pursued a career in voice over work she would have won many more awards.

Celeste was diagnosed with Wegener’s Granulomatosis, which destroyed her kidneys in 1982 at the age of 17. She had a deceased donor kidney transplant in 1986 that lasted 9 years. She was unable to get another kidney transplant due to her high antibody count.

Although her optimism that medical innovation would find a solution for her was not materialized, she never stopped being grateful for dialysis – “a gift of life” in her own words – that kept her living the life she was meant to have.

She attended Syracuse University, and earned an interdisciplinary degree in non-profit management and clinical psychology from Lesley University. She was a faculty member at the Institute for Patient and Family-Centered Care (PFCC), a PFCC program manager at the University of Michigan Health System, and former Chief of Staff to the President and CEO of Duke University Health System.

Celeste was a tireless patient advisor, peer mentor, advocate and board member of numerous organizations.

Her work has been commemorated by a lecture at the International Conference for Patient- and Family-Centered Care; the National Kidney Foundation’s Celeste Castillo Lee Patient Engagement Award; the Celeste Castillo Lee Peer Mentor Award at Michigan Medicine; the American Association of Kidney Patients Medal of Excellence Award; Celeste Castillo Lee Endowed Lectureship by the American Society of Nephrology and by a bracelet titled “Amazing Grace” created by RSN’s Embrace Hope jewelry collection honoring amazing women in the kidney community.

I spoke regularly with Celeste over the past year as she started to come to terms with the deterioration of the quality of her life and about her options. In true “Celeste form,” she wanted to make her own informed choices up until the very end.

Last December, I interviewed Celeste on KidneyTalk about her decision to choose hospice. Her words of wisdom, courage, love of life, and peace she had with making this final choice will stay in my heart forever and help many as we make the final journey.

Celeste never let kidney disease stop her from pursuing her dreams and a full life. She had a devoted husband Daniel who loved her. She was a sister, daughter, mother, faithful friend, and passionate patient advocate and I was lucky to know her.

Services information

Calling hours will be held on February 25th at Philbin-Comeau Funeral Home from 9AM – 11AM in Clinton, Massachusetts, followed by a mass of Christian Burial starting at 11:30AM at St. John’s Church, Clinton, Massachusetts (80 Union Street, Clinton, MA 01510).

A memorial service at the Sarah B. Duke Gardens at Duke University in Durham, North Carolina will be held in March, with detail to follow.

In lieu of flowers, Celeste and her family request contributions to support either the American Society of Nephrology Celeste Castillo Lee endowed lectureship and organizations like Vasculitis Foundation, the National Kidney Foundation, Renal Support Network.