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.

By Kathryn Roethel, SFgate.com

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.

Hawaii proposal

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.

New edition

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.

Kathryn Roethel is a freelance writer. E-mail: datebookletters@sfchronicle.com

“You Have the Power to Donate Life – Sign-up today! Tell Your Loved Ones of Your Decision”

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The Power of Two Canadian Premiere Feb 13 in Calgary

I had the pleasure of meeting Ana Stenzel in San Francisco and was very impressed with her drive and accomplishments considering she has lived with Cystic Fibrosis all her life and received a double-lung transplant in 2000. I would appreciate if you would share this with your contacts and hopefully the film will be well attended for it's Canadian premiere in Calgary. PS. The doctor that performed my lung transplant in 2002, Dr. Shaf Keshavjee, is in the film! He is Surgeon-in-Chief, University Health Network and Director, Toronto Lung Transplant Program.

ANNOUNCING THE POWER OF TWO  
DOCUMENTARY FILM

February 13, 2012 at the Picture This... Film Festival

CANADIAN PREMIERE!

Two Sisters – Two Cultures – Two New Chances at Life

The Power of Two, is a transformative film inspired by the memoir written by California native identical twins, Anabel & Isabel Stenzel (Univ of Missouri Press, 2007).

The Power of Two documentary film will premiere in Canada at the 11^th Annual “Picture This…Film Festival” on Monday, February 13, 2012 at 6:00pm at the

 Albert Park Radisson Heights Community Centre, 1310 - 28 Street SE, Calgary, Alberta.

This much-anticipated film will premiere as part of the Picture This…  Film Festival, an exhibition festival featuring films about disability.

Directed by Academy Award nominated producer Marc Smolowitz, The Power Of Two is a story about love, life and survival. The film offers an intimate portrayal of the bond between half-Japanese identical twins, Anabel & Isabel Stenzel, their lifelong battle with the genetic lung disease cystic fibrosis, survival through miraculous double lung transplants, and improbable emergence as authors, athletes and global advocates for organ donation.

Featuring expert interviews, archival footage and deeply personal testimony from those whose lives have been impacted by chronic illness and organ transplantation from the U.S. and Japan, the film provides unprecedented insight into the personal and societal aspects of this modern medical miracle saving hundreds of thousands of lives worldwide.  To   learn more about the film, see:  www.ThePowerOfTwoMovie.com/the-film.

Without question, The Power Of Two provides inspiration to anyone living with serious illness and those caring for them, by enlightening viewers about the twin bond, living with illness, patient advocacy, and cultural influences on health.    

For more information about the Picture This…Film Festival’s Power of Two show, see:  http://www.ptff.org/ptff_main/2012-film-catalogue/.

The Power of Two has won BEST FEATURE LENGTH DOCUMENTARY at the Picture This… Film Festival – please celebrate this with us by joining us for our Canadian premiere on Feb. 13!

The film has already shown in 18 film festivals and has won 6 awards. Reviews have been excellent:  http://www.starpulse.com/news/Jason_Coleman/2011/08/17/review_informative_documentary_the_pow .

The Power of Two will premiere in other USA cities throughout 2012. See: www.thepoweroftwomovie.com/events/ for current listings and help us spread the word!  

                                    

Thank you for your support! We hope to see you there!

--

Ana Stenzel

www.thepoweroftwomovie.com

Support Cystic Fibrosis Research Inc. 

www.cfri.org

Nurturing Families with Education, Support and Hope!

“You Have the Power to Donate Life – to become an organ and tissue donor Sign-up today!
Tell Your Loved Ones of Your Decision”

Australia, register at Australian Organ Donor Register

New Zealand, register at Organ Donation New Zealand

Canada - Ontario beadonor.ca
other Canadian provinces

South Africa, http://www.odf.org.za/

United States, donatelife.net

United Kingdom, register at NHS Organ Donor Register

Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You.

Organ transplant recipients start boot camp at Stanford

For years I've been advocating the importance of regular exercise to ensure optimal outcomes for organ transplants and congratulations go to the group at Stanford for this initiative. I'm not surprised that Anabel Stenzel is involved. I met her in San Francisco and was very impressed with her athleticism and participation in the Transplant Games, especially for someone who lived with Cystic Fibrosis all her life and is the recipient of two double-lung transplants. Ana and sister Isabel have been very active in promoting organ and tissue donation and I'm pleased to provide a promo for their upcoming movie below.

Ana Stenzel - Announcing the long awaited premeire of the Power of Two documentary film about CF/Transplant in San Francisco on 9/10/11 at 2pm and 7:30pm. For tix, please visit: Facebook page or www.thepoweroftwomovie.com/sept10. For those outside the SF area, stay tuned ! If you are interested in a screening near you, please see: Facebook screening page
Breathe!
By Jane J. Lee mercurynews.com

You'd think five kidney transplants would give someone a good excuse for skipping the gym.

But for Tiffany Van Alst, "There are no excuses."

Each week, the 44-year-old Los Gatos woman runs laps, does push-ups and lifts weights with fellow organ transplant recipients.

The three-hour boot camp aims to improve the quality of life for kidney, lung and liver patients through exercise. Transplant physicians haven't always encouraged their patients to exercise, but that has changed in recent years.

Now the boot campers attack their cardio workouts with such vigor it's hard to believe that many of them couldn't breathe without a ventilator before their surgeries.

"We have to work twice as hard for half the benefit," said Anabel Stenzel, of Redwood City. She and her twin sister, Isabel, are boot camp members who received lung transplants.

As they do push-ups, clenched teeth and grunts interrupt the flow of conversation among the group, which also includes family and friends of the transplant recipients.

Van Alst had her first transplant at age 17, and the six-time medalist at the National Kidney Foundation U.S. Transplant Games helped start the organ transplant boot camp at Stanford's Cobb Track and Angell Field with some of her teammates.

It was either get a transplant or get your affairs in order, said Brett Barker, a 29-year-old lung transplant patient and one of the newer members of the group.

Although exercise is the focus, the patients also act as a support group for one another. They chat excitedly about gaining weight and compare lung function scores, which indicate how healthy their lungs are. Some drive in from Sacramento to participate.

The Stenzel twins, Tom Martin and Lara Borowski were all lung transplant recipients who trained together with Van Alst for the competitions. Borowski died in May while waiting for a second set of lungs after her body rejected her first set.

They wanted to keep exercising in Borowski's memory, so they formed the boot camp and opened it up to anyone who wanted to participate.

Anabel Stenzel is one of the few survivors of two double-lung transplants. About 25 percent of them survive, Van Alst said.

Van Alst attributes her survival and health to exercise. Working out builds up their muscles and helps the lung patients clear their new organs of bacteria. It also builds up a fitness capital that the patients can fall back on if they get sick again.

"We're becoming increasingly aware of how beneficial exercise is for these patients," said Dr. David Weill, director of the lung and heart-lung transplant program at Stanford University. "I think transplant physicians in the past had simple survival in mind. But now they're taking into account quality of life, and exercise helps with that."

The benefits of exercise for regular people apply to transplant patients as well. An added bonus for organ recipients is that it can help to counteract some of the side effects of the immunosuppressant drugs they take, such as loss of muscle mass, said Patricia Painter a researcher at the University of Utah who ran a transplant exercise rehabilitation program for kidney and dialysis patients at UC San Francisco for five years.

But not all transplant patients are so fired up about working out. "They're scared of damaging (the organ)," Painter said. She explained that the patients consider it a gift and they don't want to screw it up.

The boot camp attendees admit they worry about getting hurt, because a broken leg or infection would quickly undo all their hard work.

Before her surgeries, exercise for Anabel Stenzel consisted of just getting out of bed because she was so weak. The thought of being laid up again with an infection is anathema to this group of people determined to stay healthy.

"They're either very sedentary or they're absolutely wound up and they exercise a lot," said Weill, describing the willingness among his lung transplant patients to exercise.

Barker wanted to get back in shape after his lung transplant surgery April 1, but he wasn't sure what to do. His doctors gave him advice about exercise, "but I've gotten a lot of useful information here," he said about the boot camp.

"I used to hate to exercise," said Anna Modlin, a lung transplant recipient. But now her sister, who is not a transplant patient, is teaching her how to run properly, starting with laps around the track in bare feet.

Van Alst credits the organ donors who saved her life, and exercise that kept her healthy, for giving her the chance to start a family -- she wouldn't have been able to give birth to her son, now 5, without them. "When you donate an organ, you're helping someone to live, not just survive," she said.

To become a donor
The boot camp attendees are grateful for their new organs, and would like to see more people choose to become donors.

Though California drivers can attach those little pink stickers to their license indicating they're a donor, people can also sign up at http://donatelifecalifornia.org.

To join
To join the organ transplant boot camp, email anana1872@yahoo.com.

THE 'BOOT CAMP' WORKOUT

Because health challenges differ, the transplant boot camp doesn't have a set workout. But here's a typical routine:

• Step 1: The group begins with stretching.
• Step 2: Next comes a walk -- or jog for those who can -- around a track for several laps.
• Step 3: A series of arm exercises follows, which may include weights or push-ups.
• Step 4: The group then climbs the stairs on the bleachers about 10 times.
• Step 5: Finally, a 5-pound Pilates ball is thrown around for more upper-arm exercise.

“You Have the Power to Donate Life – Sign-up today! Tell Your Loved Ones of Your Decision”

Canada - Ontario beadonor.ca,
Canada - British Columbia, other Canadian provinces

United States, organdonor.gov (Select your state - top right)

United Kingdom, register at NHS Organ Donor Register

Australia, register at Australian Organ Donor Register

Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You