The Power of Two - 85

The Power of Two - 85.

THE POWER OF TWO

8/21/2011

Timecode / Video / Dialogue /
01:00:00 / OPENING CREDITS / [MUSIC]
01:00:24 / ANABEL
My name is Anabel Mariko Stenzel
01:00:28 / ISABEL
My name is Isabel Yuriko Stenzel Byrnes. We are twin sisters. We were both born with cystic fibrosis. The genes we share give us the same face, the same body, the same cough, the same hospital room.
01:00:47 / THE POWER OF TWO / [MUSIC]
01:00:52 / ANABEL
I’ve had two double lung transplants.
01:00:55 / ISABEL
I have had a double lung transplant.
01:00:58 / [MUSIC]
01:01:14 / ANABEL
We all our impacted by our disease, by our transplants, and yet, it’s really about what’s inside.
01:01:27 / [MUSIC]
01:01:37 / ANABEL
It’s about people going for the gold, it’s about determination, making it to the end, no matter how fast or slow you are.
01:01:45 / ISABEL
Missy, go!
01:01:51 / ANABEL
A person may have a disfiguring scar on the outside, but they have a liver that works, they have a heart that pumps, they have a lung that’s full of air and taking them across the swimming pool. It’s the internal
01:02:07 / [MUSIC]
01:02:13 / ANABEL
No matter how bad things can seem, the hope of improved life can carry somebody through.
01:02:22 / THE POWER OF TWO
A TWIN TRIUMPH OVER CYSTIC FIBROSIS / [MUSIC]
01:02:53 / ANABEL “ANA” STENZEL / ANABEL
When I think about my childhood with cystic fibrosis, there’s a lot of memories that naturally come to surface.
01:03:04 / ANA ISA / ANABEL
The first ten years of our lives, we did do treatments, we did go into the hospital once or twice, but primarily, my earliest memories growing up were about cultural influences. My mother, being Japanese, really set the, the background for who I am as an individual, and how much the Japanese culture was infused into me.
01:03:28 / ISABEL “ISA” STENZEL BYRNES / ISABEL
My parents were so dedicated and supportive, and they did everything that they had to do to raise my sister and I well, but they also came from cultures where you didn’t talk about your feelings or you didn’t talk about what was inside of your heart. We didn’t express our emotions like that.
01:03:44 / HATSUKO STENZEL
MOTHER OF ANA & ISA / HATSUKO
Every hospitalization they experienced when they were young, I felt like I did something wrong. And it was very, very difficult.
01:03:57 / ANABEL
One of the things my mother taught me was the idea of Gaman, and Gaman is an Japanese word that means persevere, strength within. By the age of 11 we started to go in and out of the hospital more frequently, where it did start to disrupt school. It was not just a little vacation anymore, it was fevers, it was shortness of breath, chronic coughing, coughing up blood, which is a very common symptom of cystic fibrosis.
01:04:37 / WASHINGTON, D.C.
DR. FRANCIS COLLINS
DIRECTOR, NATIONAL INSTITUTES OF HEALTH
DISCOVERED CYSTIC FIBROSIS GENE / DR. FRANCIS COLLINS
Cystic fibrosis has a name that’s a little off-putting, it’s a lot of syllables, a lot of people aren’t quite sure what this disease really is. Maybe they’ve heard of it, maybe they’re just heard it called CF. We all have two copies of each gene in our system, one from mom, one from dad. Cystic fibrosis is caused by misspellings in those genes. If you have two copies, and one of them isn’t working, but the other one is, you’re fine. But if you’ve inherited a misspelled copy from your mother and another from your father, so that both copies are not working, then you will develop cystic fibrosis. It is the most common, potentially fatal genetic disease, in northern European background individuals, but it occurs in others as well, as we see in the case of Ana and Isa.
01:05:29 / ANA
EXCESSIVE THICK MUCUS
PROGRESSIVE LUNG DISEASE / ANABEL
One of the main issues in cystic fibrosis is an imbalance of salt and water in cells, and that causes thick mucus. Thick mucus cases progressive lung disease. And ultimately respiratory failure.
01:05:45 / ISABEL
There is no cure for cystic fibrosis at this point, as your lungs become more damaged, the only hope for survival is lung transplantation.
01:05:54 / DR. FRANCIS COLLINS
Organ transplantation is a critical part of current medical therapies for many conditions, CF being one example. And right now we have this terrible problem of a limitation in the numbers of available organs for those who desperately need them.
01:06:10 / ANABEL
When you receive a gift as amazing as a transplant, there is some sense of obligation to give back. Nothing is possible if we don’t have health. And I’ve learned that more myself from personal experience than anything else. So now that I am healthy, I do what I can.
01:06:32 / ISA / ISABEL
We’re representing the thousands of other people with CF, or people who need transplants, that aren’t able to go to Washington D.C.
01:06:42 / DR. HOWARD KOH
ASSISTANT SECRETARY FOR HEATH
DEPARTMENT OF HEALTH & HUMAN SERVICES / DR. HOWARD KOH
We have thousands of people desperate for an organ and desperate for a fighting chance at a normal life. Even though we are making progress, the numbers of people on the waiting list are going up, not down. This is our collective societal issue and everybody can make a contribution.
01:06:59 / ANABEL
In America, every day 19 people die because there is a shortage of organs.
01:07:04 / DR. HOWARD KOH
Advocacy is the engine of change, for any issue in society, and particularly for public health. And the beauty of advocacy and the power of advocacy is it can start with one person. In this case, two people.
01:07:19 / ANABEL
We’re here on our fifth day of my 16th hospitalization, and her 20th.
01:07:27 / CLERK
20th?
01:07:28 / ISABEL
Yeah.
01:07:28 / ISA / ISABEL
Being in the hospital really sort of sets in stone my abnormality. None of my other friends went into the hospital, so this was just my story and Ana’s story and we were the only ones going in and out.
01:07:42 / ANABEL
I think that in terms of growing up with a twin with cystic fibrosis, undoubtedly, it was transformative. When we started to get sicker, and we were in and out of the hospital several times a year. We started to build our own cocoon. We became our own confidantes, we became our best friends, our teachers, our personal therapists
01:08:05 / ISABEL
Our peers became adult health care providers, rather than our peers at school. And that comfort level also made being in the hospital not so scary.
01:08:19 / ANABEL
I was a very emotional child, and writing gave me an outlet to express myself and to record what I thought would be a very short life.
01:08:34 / ISABEL
I think Ana’s the one that started writing and she just started to list things, list her medicines and list her doctors. And then gradually we started more of a diary format, we just started writing about all the memories we had about previous hospital stays.
01:08:55 / HATSUKO
They were very, very special children, they had great motivation. I just encouraged them, whatever they were doing, that’s all I did.
01:09:07 / REPORTER
Out of boredom, Anabel and Isabel Stenzel say they started keeping a diary of their hospital stays, titled “Life at Kaiser.”
01:09:15 / ANABEL
“Life at Kaiser” was sharing with the world, what the patient’s experience was from the other side, from the internal side of being in the hospital.
01:09:26 / REPORTER
The book is illustrated, including how to do certain procedures learned from experience, plus, tips on physical therapy of the chest.
01:09:34 / ANABEL
I pound her back like this, to loosen secretions in the lung
01:09:40 / ANABEL STENZEL
AUTHOR / ANABEL
Throughout our hospitalization and throughout our experience with roommates, nobody really knows what cystic fibrosis is, and so with our book it teaches people what it is.
01:09:49 / REPORTER
Almost startling is the frank understanding of what they face.
01:09:54 / ISABEL STENZEL
AUTHOR / ISABEL
When we were little, we knew how bad CF could get, and we thought that we were very lucky cause we were twins, and we shared the disease by two. But now we know that it progresses, and so now we each get as sick as anybody else may get
01:10:11 / ANABEL
I plan to do my best in school and get good grades and hopefully go on to college, and if I, like, if I last that long.
01:10:21 / STANFORD UNIVERSITY
STANFORD, CALIFORNIA / [MUSIC]
01:10:38 / ISA / ISABEL
This idea of Stanford, first occurred to us when we were about 14 years old. My parents said, this is where they do heart lung transplants, and we’re like wow, that’s like science fiction.
01:10:51 / ANABEL
Stanford is really the heart of, of us in many ways. We came here for college, and it opened up a whole new door of life for us, in every way, emotionally, medically, academically. Certainly there were fears, going to college, but those fears were minimized because we had each other. Little did we know that leaving for college is actually the most life saving, best thing that we ever did.
01:11:20 / ISABEL
Throughout our four years pretty much, we were always a little bit outside of like the dorm partying, and the dating. That didn’t happen till senior year.
01:11:31 / ANDREW BYRNES
ISA’S HUSBAND / ANDREW
I fell in love completely independent of cystic fibrosis. She sat me down and, uh, she said, you know, I have an illness, and I have to do therapy every day with my sister, and I cough a lot, and I just wanted to let you know.
I think that you should follow your heart, and if they’re the right person, and the only issue is, well, they have a chronic illness, that that shouldn’t dissuade someone.
01:12:05 / PRIEST
Ladies and gentlemen, I present to you, Andrew and Isabel Byrnes, husband and wife. [APPLAUSE]
01:12:13 / ANDREW
Ana I think, had, I don’t think, I know, had fundamental doubts and concerns about our relationship
01:12:21 / ANABEL
And all of a sudden, this third person comes into the picture who takes Isa away to go to Napa Valley for the weekend, and she’s having fun, while I’m struggling thinking who’s gonna take care of me. Observing romantic relationships around me and observing love without ever experienced it myself, was not easy. But at the same time I was very happy for Isa, that she found someone and that there was this person who was so loving, so unconditionally accepting of our dynamic. We all grew together.
01:12:54 / [MUSIC]
01:12:58 / ISABEL
At Stanford Hospital, once a month, there is a support group for people who are waiting for lung transplant and those who have received lung transplant. It’s a really dynamic, engaging, loving, open and tremendously hopeful environment.
01:13:16 / ISABEL
Welcome everybody, this is a very special gathering of lung recipients, to be here to just talk to each other and get to know each other even more. I thought of this prayer flag project to give to Japanese donor families. They’ve never really been recognized, and I think it would be meaningful to share with those Japanese donor families how we feel about being recipients.
01:13:42 / MALE LUNG RECIPIENT
I received a heart, double lung transplant in 1997. It, the underlying cause of my transplant was cystic fibrosis, genetic disease. I still have cystic fibrosis it affects now my sinuses mostly, my pancreas, but my lungs have returned, I’m at 100 percent lung capacity.
01:14:05 / ISABEL
Great.
01:14:07 / ANABEL
As you can imagine, quickly we become very close, because the journey of lung transplant is a roller coaster ride, and it’s probably one of the most pivotal, challenging, life changing, existential experiences that any human being can go through.
01:14:28 / FEMALE LUNG RECIPIENT
I was very, I don't know if it was nervous, it was just all of these really mixed emotions about, you know, waiting for, for someone to pass away and hoping that they were gonna give that gift of life, and just praying for the family was really, really important to, um, to us and our family. If that person had not donated it could have, you know, ended very, very badly.
01:14:55 / MALE LUNG RECIPIENT
It’s a, it’s a very sober thing to realize someone has lost their life, you know. But at the same time, I, they didn’t lose their life because I got my transplant, they would have lost their life whether I got the transplant or whether the lungs went in the ground.
01:15:14 / ANABEL
Every breath we take from the minute we’re born to the minute we die is about renewal. But when you have sick lungs and then you have a lung transplant, it’s a bigger level of renewal, and it’s about becoming alive again.
01:15:31 / MALE LUNG RECIPIENT 02
It is a completely different feeling to breathe with the gift of these donated lungs than it was to breath my entire life, because when I close my eyes and I breathe in, I feel like I’m in a sanctuary. You know. It’s just peace. And that’s new for me. And that’s awesome. It’s awesome. Even though I have to wear this mask for the next couple of months, it doesn’t matter, it’s awesome.
01:16:03 / FEMALE LUNG RECIPIENT 02
I decided to write my donor family a letter about four months after my surgery. Um, and then six months later I received a letter from them. My donor is a male and his brother’s the one who wrote me and he called me his sister. And just to find out his name was very, I mean, I prayed day in and day out that I will be able to express my gratitude for what they’ve done for me and my family.