Mission: To be a resource for transplant information; to be an advocate for organ & tissue donation awareness; to promote funding for transplant research.
Wednesday, October 02, 2013
Anabel Stenzel, organ transplant advocate, dies
Anabel Stenzel battled cystic fibrosis. Photo: Lea Suzuki, The Chronicle
It's with a heavy heart that I post this announcement and my thoughts and condolences go to Ana's family and friends as we remember the amazing contribution she made to organ and tissue donation awareness. I had the pleasure of working with Ana at a conference in San Francisco and was impressed with her upbeat enthusiasm and zest for life in spite of going through the ordeal of two double-lung transplants. Merv.
Anabel Stenzel, a Bay Area woman with cystic fibrosis who received two double lung transplants and authored a memoir with her twin sister, also a double lung transplant recipient, that inspired a documentary film, ("The Power of Two") died Sept. 22 at her Redwood City home of cancer. She was 41.
When Ms. Stenzel and her sister, Isabel Stenzel Byrnes, were born with cystic fibrosis in 1972, doctors said they probably would not reach their 10th birthdays. Over the next four decades, Ms. Stenzel graduated from Stanford, earned a master's degree from Cal and married. She worked as a genetic counselor at Lucile Packard Children's Hospital for 16 years, was a competitive swimmer and runner who won more than 20 medals in six national transplant Olympic-like games and was an international advocate of organ donation.
Ms. Stenzel was born in Los Angeles to immigrant parents who called her Ana and her sister Isa. The twins shared everything, from hospital rooms throughout their childhood, to a dorm room at Stanford, to an apartment in Japan, where they both taught English after graduating Stanford in 1994.
TEDx talk in 2013
In May 2013, in what was one of Ms. Stenzel's last public appearances, the twins gave a TEDx talk in Menlo Park about their experience with cystic fibrosis, a disease that can lead to lung failure.
"What has really gotten us this far? I think it's our love," said Stenzel Byrnes, who is generally healthy as she approaches the 10th anniversary in February of her own lung transplant. "Illness can be a very lonely experience, and we feel very privileged that we have never, ever felt alone."
Ms. Stenzel received two lifesaving lung transplants, the first in 2000 and the rare second one after her body rejected her donor lungs in 2007.
"I want to encourage donor families to know that somebody out there is living and enjoying life and thinking of them on a moment-by-moment basis," Ms. Stenzel said in a 2010 San Francisco Chronicle interview. "I think of my donor family every single day."
In 2007, Ms. Stenzel and her sister published their memoirs, "The Power of Two." The book became a documentary directed by Marc Smolowitz.
A few months before her second lung transplant, Ms. Stenzel met Trent Wallace through a dating website. Wallace was by Ms. Stenzel's side during transplant recovery and became attracted to "how strong she was." He proposed on a trip to Hawaii, and the couple wed in June 2010. The documentary film closes with scenes from their wedding.
Shortly after the film's fall 2011 premiere, Ms. Stenzel was diagnosed with small bowel cancer - a common complication for middle-aged cystic fibrosis patients.
While she was undergoing chemotherapy and clinical trials, Ms. Stenzel was the Northern California team manager for the 2012 U.S. Transplant Games and won gold medals in swimming and running. She also was a board member of Cystic Fibrosis Research Inc., co-founded an exercise boot camp for transplant recipients in the Bay Area and volunteered for several other nonprofits.
Stenzel Byrnes said her sister's donated lungs were "perfect, right until the end." And although cancer meant she could not donate organs or most tissues, the life-long advocate donated her corneas.
In the spring of 2014, publishers plan to issue a second edition of the twins' book, this time including a 50-page afterword they wrote together before Ms. Stenzel's death. "She wrote the conclusion to her life," Stenzel Byrnes said. "And what an extraordinary life that she has lived - that we have lived."
In addition to her sister and her husband, Ms. Stenzel is survived by her parents, Hatsuko and Reiner Stenzel; and her brother, Ryuta Stenzel.
A memorial service will take place at 2 p.m. Oct. 26 in Portola Valley at Valley Presbyterian Church, 945 Portola Road. Gifts in Stenzel's memory may be made to a cystic fibrosis oncology research fund at http://makeagift.ucsf.edu. The family also welcomes donations to Cystic Fibrosis Research Inc. and California Transplant Donor Network.