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Two Against the Odds

The lungs that Ana and Isa Stenzel were born with could take them only so far. But with vigor, determination and organ donations, they are aging, gratefully.

Samantha Berg

Ana and Isa Stenzel

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By Jill Wolfson

Isabel Stenzel Byrnes, taking a seat at her twin sister Anabel Stenzel's dining room table, checks the clock and then holds up a wait-a-minute finger. "Pardon me," she says, "It's time for my cocktail." She downs a hefty handful of pills—immunosuppressant medications, antibiotics, antifungals, antivirals and nutritional supplements—with a small gulp of water. This happens twice a day, every day. There are also digestive enzymes and insulin throughout the day. When it comes to medication-taking, she admits with the easy laugh that punctuates so much of her conversation, both she and her sister are at the Olympic level.

"Oh, this is nothing. We're used to it," she says. "After all we've been through medically, all the treatments, hospitalizations, and transplants. . . . Taking pills—that's nothing. Life now is very good."

In 1972, in a Kaiser hospital nursery in Los Angeles, "Twin A" Ana needed emergency surgery when she was 3 days old for a bowel blockage. Because the problem can be a hallmark of cystic fibrosis (CF), the twin babies were tested. As children with Asian heritage—their mother is from Japan, their father from Germany—it seemed a long shot. A genetic disease familiar in people of Northern European descent, CF is extremely rare in Asia. Their papa, Reiner Stenzel, a physicist, did the math: The odds of having half-Japanese identical twins with CF were about one in 1.8 billion.

The unlikely diagnosis was confirmed. The prognosis in 1972 was dire: The girls would be lucky to live to age 10. In a memoir, the sisters report that Isa came home from the hospital at 6 weeks of age. Ana, with the ostomy she would need for her first year of life, came home at 12 weeks. Their toddler brother asked their mama, "More babies come home?" and Hatsuko Arima Stenzel said no, there were just these two. She hugged 21-month-old Ryuta, "relieved that at least her son would not die young."

But neither did her daughters. Isa and Ana turned 40 on January 8, the birthday they joke about sharing with Elvis. As they grew from fretful babies into cheerful and charming girls, Ana and Isa became as familiar with hospital wards as most children are with classrooms. But against the odds—and through decades marked with demanding daily treatment, near-death trips to the ER, clinical trials, lung transplants, organ rejection, CF-specific diabetes and a bout with cancer—Ana and Isa graduated from Stanford in 1994, lived abroad, finished graduate school at UC-Berkeley, built careers, and fell in love and married. Their lives, in large part devoted to advocating for others who live with medical challenges, are rich and full. "What I treasure most is growing and learning about acceptance and surrender as I age," Isa wrote in the Stanford Class Book for their 15th reunion. "I am grateful for the unexpected opportunities that have opened up, many because of the illness I never wanted."

Unwanted illness has shaped every aspect of the Stenzels' lives: from childhoods in which they learned to administer treatments to each other, to their choice of careers, to their avocations as authors and advocates. Their 2007 book, The Power of Two: A Twin Triumph Over Cystic Fibrosis (University of Missouri Press), details, among many topics, the strain their illness placed on their family and the emotional upheaval surrounding the deaths of many friends with fatal disease. The story easily could have succumbed to the clichés of a "misery memoir," but their wit, self-awareness and vivid storytelling elevate the tale. They hold nothing back, writing about how illness impacts their bodily functions and sexuality. They grapple with a sibling relationship—sometimes frustrating, sometimes life-saving—that transcends the usual symbiosis of identical twins. (Even their parents have difficulty telling their voices apart over the phone.)

Those who know the sisters best say that there are obvious differences between them: the shapes of their faces, the position of a scar. Ana is known for being more assertive and intellectual, while Isa is more reserved with a brighter disposition. As they mockingly describe themselves in their memoir, "Ana's the bitch. Isa's the sweetie pie." But in conversation, both come across with varying degrees of assertiveness and reserve. Both radiate good humor and good sense. Both are athletic and describe themselves as "constantly cheerful." They have the habit of commenting on each other's statements by exclaiming with affection: "That's so Isa!" or "That's so Ana!"

Dr. David Weill, director of Stanford Hospital's Center for Advanced Lung Disease and the Lung Transplant Program, describes the Stenzels as "mentors to a lot of people who are newly diagnosed with CF, have had transplants or are contemplating transplants and don't know what to expect." He met them six years ago and is part of the team that has cared for them at Stanford. "In all my years of doing transplants, I haven't met anyone with this level of commitment and vigor to live their lives like each day could be their last. That's what makes them such good ambassadors. They show the world what's possible."

Their story also inspired a documentary film that premiered last year and is making the rounds of film festivals and community screenings throughout the United States and Japan. "In the book and the film, we wanted to convey the bittersweet aspects of CF—how we were well enough to pursue a normal life, but sick enough to really struggle to be able to have such a normal life," Isa explains. "We sacrificed our social lives, our youthful explorations of identity development, and even sometimes sacrificed our health just to try to follow the common path of college and career."

Ana agrees. "The message we want to give people is to cherish your life and health, live, breathe deeply!"

Difficulty breathing is only the most prominent symptom associated with cystic fibrosis; the disease also takes its toll on the digestive and endocrine systems. The gene mutation that causes CF creates thick, clogging secretions, especially in the lungs. Therapies include nebulized breathing treatments, percussion to loosen mucus, and supplements of digestive enzymes. Progress has been made in treatment, so that parents of children born with CF these days would not hear "lucky to live until 10" and would learn that while the illness's severity depends on the individual, the median life expectancy is now in the 30s.

While the Stenzels were girls, their care involved daily breathing treatments (two, then three, then four a day with sometimes a fifth in the middle of the night) and physical therapy in which their parents pounded on their backs and chests to loosen thick mucus that the girls would cough up and spit out. At around age 12, the twins started to perform the intense, time-consuming daily percussions on each other. (The pounder wore mittens, which kept the noise down and were useful if her hands cracked and bled from the blows.) When things were going well, the family was active—exercise was a boon to the girls' health. But there were frequent hospitalizations for lung infections or hemorrhages.

The twins' acceptance to Stanford had surprising ramifications because it meant their illness would be managed by the Kaiser hospital in Santa Clara, which had a leading-edge CF care center with protocols unfamiliar to their physician in Southern California. Initial appointments there brought them more effective pancreatic enzymes to take, more accurate testing of their lung function, and better practices and technology to help clear their lungs. The reed-thin freshmen gained weight and experienced menarche.

They shared a guest room at Larkin that had a private bathroom—the better to avoid germs. Chapters in their book describe their heady adjustment to college, marked by efforts to individuate and to mature that were sometimes funny ("When I wear my hair up, you wear your hair down") and sometimes fierce (they understood why an old friend, sublimating the "poking and prodding" pain involved in CF, had become a masochist performance artist in San Francisco). Their joy in academics and extracurricular activities (taiko drumming for Isa; a speaker's bureau with the disabled students' group for Ana) was counterweighted by the effort they spent on tasks of daily living that other students accomplished without a second thought.

After graduation, Isa taught English in Japan for a year as part of Stanford's Volunteers in Asia program. The sisters, joined at the lungs by their health needs, realized that the country they'd enjoyed visiting as children was an extremely difficult place for them to live. They seldom saw anyone who was disabled: Chronic illness, their grandmother told them, was considered burdensome or shameful in Japan. People with disabilities did not discuss, or even admit to, illness and often lived in institutions.

They returned to the United States to attend graduate school and embark on careers. Both work at Lucile Packard Children's Hospital at Stanford. Ana is a prenatal genetic counselor, offering information and support to people at risk for genetic disorders due to family history, age factors or ethnicity. Isa is a social worker offering help in the developmental issues of medically fragile infants.

 "Sometimes, I feel like the documentary is a Stanford promotional video," Isa jokes. "We attribute our survival to Stanford. It's given us education, medical care and careers. It made us who we are."

The idea to tell their story took hold as a "therapeutic writing process," when their mother, whom they call the real hero of their book, suggested in 2002 that they document their lives.

Ana's CF had advanced to the point where she had gotten a new set of lungs and with it a new chance at life. She was given the lungs of a 29-year-old man whose family wrote that he had loved the outdoors and AC/DC. The 12 days of the transplant surgery and recovery was the shortest hospitalization of her life until that time.

Her adjustment to new lungs wasn't easy, though; she battled depression and felt disoriented by the months, while she was immunosuppressed, of forced separation from Isa. But she emerged free from the CF medical regimen that had consumed hours each day. She blossomed with energy beyond anything she had ever known and she swam competitively and hiked and climbed. A long-time romantic relationship ended as the couple's roles and expectations changed post-transplant. Ana returned to work and got involved in advocacy for organ transplantation. Desperate to "hold onto every sight, sound, smell and taste forever," she "drank the juices of life."

Isa, however, was growing sicker. She took disability leave in 2002 and began to feel very much in need of a project. "We've always coped with our illness by distraction, which included academics," Isa explains. "I was on full-time oxygen and stuck at home, so the one thing I could do was to write. It became an obsession. On a deeper level, I knew I was at the end of my life and felt compelled to document my story, to prove to the world that I had existed. . . .

"Ana and I both have what we call GSD personalities—get-shit-done personalities. When you live with illness, you don't have the luxury of procrastination."

Isa took writing courses and assigned Ana specific topics, divvying up aspects of their lives. They delved into the copious journals they kept as children. There was lots of collaboration, complaining, mutual editing and what they jokingly refer to as "twin bickering." Then, Isa's health collapsed. The terrible drama of end-stage CF—marked in Isa's case by suffocation and bleeding out—prompted Ana to write:

Isa was dying. Dying. Dying. No fucking way. I can't believe this. What happened? There's so much left to do together. What about our aspirations to hike, travel, write a book together after our transplants? I had always envied her. Was it some cruel justice that I was meant to live with new lungs and she wasn't? I felt sick at the thought of Isa dying without ever having experienced life without CF. Would God be so cruel?

The Stenzels named this penultimate chapter, "The Miracle," because "in an instant, the ominous cloud of impending death was lifted" by a Stanford doctor's announcement: "We have lungs available for Isabel."

Isa, now with the lungs of a high school senior who had died after a car accident, began to experience the thrill of living without CF, the exultation that Ana had experienced two years before. She took up the bagpipes, to sound off with her new lungs. Ana was feeling so well that she wondered if her memories of being sick were fading to the point that she wouldn't be an effective spokeswoman for their memoir.

But the only way to end CF—with transplanted lungs—still leaves the patient with chronic health risks. In 2006, a week after meeting with the publisher who accepted their memoir, medical monitoring began to show that Ana's body was rejecting her transplanted lungs. Within eight months, she was barely functioning.

Ana required a rare second transplant—but was an excellent candidate for such because of her athletic conditioning. She had been training to run a half-marathon and she walked it even after tests showed that her lungs were losing capacity. Her recovery from the second transplant surgery was less emotionally fraught.

After the book came out, the twins say the next four years were "run, run, run." They took a 40-day road trip filled with speaking engagements. Ana returned to work part time, got engaged to Trent Wallace, a corporate accounts manager for a financial-data firm, and married in 2010.

Last year, she was diagnosed with cancer: small bowel adenocarcinoma, a not-uncommon side effect from anti-rejection medication. Sitting at her dining room table and serving red bean mochi from a nearby Japanese market, she looks the picture of health. But because she is undergoing chemotherapy, she is too immunosuppressed to work.

"I know that cancer has a stigma and there's a lot of fear around it," she says. "But for me, it's only one more thing. And I kind of have Cancer Lite. Truthfully, I've lived my whole life not letting illness get in my way. Why would I let it stop me now?"

It is this attitude that piqued the interest of Marc Smolowitz, an Academy Award-nominated producer who filmed the Stenzels' story. He describes the 94-minute documentary, also named The Power of Two, as "an intimate, inspirational tale of sisters who got the gift of life and didn't retreat into their private lives, but decided to do something with this gift. It's about the making of advocates."

After their memoir was accepted for publication in Japan, the twins embarked on a book tour in a country where, because of stigma and cultural taboos, organ donation is seldom considered. It wasn't until 2009 that a law in Japan defined brain death as death so that families could designate the donation of loved ones' organs. In 2009, there were six such donations in the country; the number went up to about 30 in 2010—a year in which more than 12,000 Japanese were officially waiting for life-saving organ transplants. Because doctors aren't proactive about recommending transplantation, that number is thought to be smaller than the actual number needed. (More than 112,000 Americans need transplants, and an average of 18 people die daily waiting for an organ.)

Like the book, the film started as a personal, rather than a public, chronicle. Before setting off on their Japanese tour, Isa's college sweetheart and husband of 14 years, Andrew Brynes, '94, sought advice on videotaping the twins' speeches. A Harvard-trained lawyer who works in intellectual property and election law, he belongs to the philanthropic organization Full Circle Fund, where he met filmmaker Smolowitz and sought advice. "We just wanted to make a family video of our experience," Isa explains.

Smolowitz saw larger possibilities. "I was immediately drawn to Ana and Isa, for who they are. They have a powerful, personal story with the potential to change hearts and minds on a global scale. In that way, they are both ordinary and extraordinary."

This past fall, hundreds of family members, friends and those involved in the CF and transplant communities packed the Castro Theater in San Francisco for two public showings of the film. Beforehand, the twins stood in the lobby graciously greeting viewers and answering questions.

Almost as soon as the lights dimmed, some audience members were in tears. The film follows the twins in Japan as they speak at hospitals, social welfare organizations and schools. In other poignant scenes, they work on the Donate Life float in the Rose Bowl parade and swim in the U.S. Transplant Games, and Ana meets the family of her first donor. Among those interviewed on screen are Dr. Bruce Reitz, '66, the cardiothoracic surgeon who in 1981 did the first successful heart-lung transplant and who performed all three of the twins' transplants, and pulmonologist Weill.

"I talk to doctors around the country and they are referring their patients to this movie," Weill says. "The Stenzels talk about the good and the bad of the transplant experience. They are realistic and that carries a lot of weight coming from other patients, rather than from the doctor. The movie—and the Stenzels—will have a lasting impact on the education of patients."

Some of the most touching moments in the film are archival footage, which show the spindly girls who, during long hospital stays, wrote, illustrated and sold a booklet titled "Life at Kaiser." In another segment, the sisters, now adults, remove their blouses to show the scars from their many surgeries.

"Taking our shirts off was probably the most controversial thing we did in the movie," Ana says. They discussed whether this act would be exploitive, offensive to their family, inconsiderate of their husbands, unduly attention-seeking. "The thinking was: We were so healthy-looking that it was hard to fathom what we went through. Showing our scars was proof to the audience of what was underneath. . . . We want to tell the truth, the real day-by-day, minute-by-minute life—inside and out—of what it's like to live with an illness. What is there to hide about this life? Somewhere, somehow someone will relate to it and feel a little less alone."

At first, the hoopla—the book, the opportunities to speak, the movie and its invitation to film festivals, including the Tokyo International Film Festival—confused Isa and Ana. They find it puzzling that other patients, caregivers and medical personnel seem amazed by their candor. They bristle slightly when it is suggested that they are inspirations: They feel they've done nothing extraordinary. As they put it, they are just two sick kids who grew up and talk about it.

"CF is a culture," Ana explains, "part of our identity. For me, it has actually created so many positive things in my life—a career, the people that I've met—that I can't walk away from it."

"That's so Ana," Isa notes. Then she discusses being public about what so many people would keep private.

"We all have fears of death and pain. We are all scared of shortness of breath. And we all have the capacity to confront the same range of human emotions that Ana and I confront. Perhaps, we are reminders to people of their own strength and their own courage."

"And that," says Ana, "is so Isa."

As a child, Isa recalls reading in National Geographic that for 99 percent of human history, 99 percent of humans lived less than 40 years. "My life goal was always to make it to 40."

Then, speaking for her sister as well as herself, "But of course, our next goal is to make it to 50!"


Jill Wolfson is a journalist and novelist in Santa Cruz. Her young-adult novel Cold Hands, Warm Heart deals with organ transplantation.

 

Comments (1)


  • Mr. Andrew Carl Byrnes

    For more information about "The Power Of Two" book and documentary film featuring Ana and Isa, including to watch the trailer and view upcoming screenings, please go to www.ThePowerOfTwoMovie.com.

    Posted by Mr. Andrew Carl Byrnes on Mar 19, 2012 2:41 PM

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