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Tuesday, October 25, 2011

Twin Sisters Anabel and Isabel Talk About How Lung Transplants Saved Their Lives

Posted By on Tue, Oct 25, 2011 at 7:30 AM

Norbert von der Groeben/Stanford Hospital and Clinics

Anabel Stenzel (left) and Isabel Stenzel-Byrnes suffer from cystic fibrosis.
The Power Of Two, a documentary about twins who battle cystic fibrosis and have emerged as global advocates for organ donation, screens this week as part of the United Nations Association Film Festival. Recipients of double lung transplants, half-Japanese sisters Anabel Stenzel and Isabel Stenzel Byrnes spread awareness about the importance of organ donation throughout the United States and in Japan, where donation remains rare. We spoke with the Stenzels recently about their illness and their role as international educators.

How did you develop into global advocates for organ donation?

It was something we did not actively pursue, but rather it occurred by chance. When we were sick, we were consumed by our own health needs. However, after our transplants, we both had enormous energy and needed a productive, meaningful outlet for service.

Once we were transplanted, and our memoir was published in 2007, this became a vehicle from which to launch an educational opportunity about cystic fibrosis awareness and the benefits of organ donation.

Organ donation remains highly controversial and therefore extremely limited in Japan. As half-Japanese, we were welcomed into an opportunity to put a spotlight on the non-Caucasians around the world who suffer tremendously from this disease.

Why is organ donation rare in Japan? How have you worked to raise awareness there?

Being barely routine for 30 years, organ transplantation (hence donation) is a relatively new science for all the world. It takes time for some cultures to reconcile this new medicine with their cultural beliefs about death, altruism, and spirituality.

In addition, there are cultural taboos against touching a deceased body, sending a deceased body to the afterlife with organs removed, and cultural differences in which giving unconditionally to strangers is not as customary as in our country.

Japan passed a new law in favor of organ donation in July 2009; our book tour occurred in October 2009, so we also could show our support for this new law. Because we are half Japanese, we believe the listeners for the most part were receptive to our message. Based on feedback we received, we believe we opened up some hearts and minds.

You have achieved a lot in spite of difficulties associated with your disease. What has been your greatest success?

(Ana) Our greatest success has been to still be alive! Lung transplant is one of the riskiest solid organ transplants, and the risk of infection, rejection, and cancer is always there.

(Isa) My greatest success is publishing my book and witnessing all the opportunities to unfold because of the book. When you are faced with a life-limiting illness, there is an instinct to somehow prove that you have existed. I needed to write my story to make sense of all the losses and hardships, as well as the victories and joys. Another thing I'm very proud of is growing older to become wiser and more mature inside. That's a gift, but something I've also worked at.

How has working together helped you face the challenge of your illness?

(Ana) Being an identical twin is a special experience for any twin, but when you experience congenital, lifelong, life-threatening illness with your twin, I can't imagine any other two human beings who could possibly be closer. We act as each other's parent, sibling, best friend, therapist, and as an "old married couple" all at the same time. We know for a fact that we would not be alive had we not been born twins.

(Isa) Our story represents a very basic human fact: Survival is more successful with teamwork. By helping each other physically (with treatments) and mentally with our diseases, we are able to survive and thrive.

What do you hope to accomplish with this film?

(Ana) In this day and age of health care reform and debate, I hope that people can see the good of American health care, the patient's role and responsibility in self-care, and the opportunity that an illness community can offer in education, enhancing coping, and improving quality of life.

Most of all, I hope people will consider signing up to be an organ donor. Though I never would wish upon anyone to actually face tragedy and be an organ donor, we know that tragedies happen, and after the fact, donating organs allows a person to leave a legacy. To sign up to be an organ donor:

What do you see as the biggest misconception about organ donation?

(Ana) I think that most people in general have a fear of thinking or talking about death, so talking about organ donation can be difficult. There are also misconceptions that if you are signed up to be an organ donor, then your doctor is less likely to save you in the event of an accident or illness, or that organ donation benefits only the wealthy or famous.

On a personal note, I feel that the greatest misconception about lung transplantation is that once a person has new lungs, he or she is cured and will live happily ever after. We still have cystic fibrosis in our gut and sinuses, we often develop side effects from the medications, and we are at risk of infections due to a compromised immune systems. It just reinforces our need to cherish each day, enjoy the good days and embrace the gift even more.

(Isa) I believe people who are hesitant about organ donation focus on the death part. In other words, they think organ donation is about death. I hope this film shows that organ donation is about life. Organ donation is one way to make a difference, do something good and help others after death. That's pretty awesome.

The Power of Two screens Wednesday at 8:30 p.m. at Stanford University as part of the United Nations Association Film Festival. Admission is $10.

For more events in San Francisco this week and beyond, check out our calendar section. Follow us on Twitter at @ExhibitionistSF and like us on Facebook.

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Beth Hillman


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