WEBVTT

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(gentle music)

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(gentle music)

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- [Anabel] My name is
Anabel Mariko Stenzel.

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- [Isabel] My name is Isabel
Yuriko Stenzel Byrnes.

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We are twin sisters.

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We were both born with cystic fibrosis.

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The genes we share give us
the same face, the same body,

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the same cough, the same hospital room.

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- [Anabel] I\'ve had two
double lung transplants.

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- [Isabel] I have had a
double lung transplant.

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(audience shouting)

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We all are impacted by our
disease and by our transplants.

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And yet it\'s really about what\'s inside.

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♪ We\'re in, we\'re in ♪

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♪ We\'re in, we\'re in ♪

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♪ Sky ♪

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- [Isabel] It\'s about
people going for the goal.

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It\'s about determination,
making it to the end,

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no matter how fast or slow you are.

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- That\'s it, go!
♪ Skyscraper ♪

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- [Anabel] A person may
have a disfiguring scar

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on the outside, but they
have a liver that works.

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They have a heart that pumps.

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They have a lung that\'s
full of air and taking them

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across the swimming pool.

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It\'s the internal.

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♪ Skyscraper ♪

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- [Isabel] No matter
how bad things can seem,

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the hope of improved life
can carry so many through.

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♪ Skyscraper ♪

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(light music)

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- [Anabel] When I think about my childhood

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with cystic fibrosis,
there\'s a lot of memories

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that naturally come to surface.

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The first 10 years of our
lives, we did do treatments.

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We did go into the hospital once or twice.

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But primarily my earliest
memories growing up were

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about cultural influences.

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My mother being Japanese,
really set the background

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for who I am as an individual and how much

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the Japanese culture was infused into me.

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- My parents were so
dedicated and supportive

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and they did everything
that they had to do to raise

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my sister and I well.

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But they also came from
cultures where you didn\'t

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talk about your feelings
or you didn\'t talk

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about what was inside of your heart.

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We didn\'t express our emotions like that.

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- Every hospitalization they experienced

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when they were young, I felt
like I did something wrong,

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and it was very, very difficult.

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(soft music)

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- One of the things my
mother taught me was

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the idea of gaman.

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And gaman is a Japanese word that means,

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persevere, strength within.

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By the age of 11, we started to go

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in and out of the
hospital more frequently,

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where it did start to disrupt school.

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It was not just a little
vacation any more.

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It was fevers, it was shortness of breath,

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chronic coughing, coughing up blood,

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which is a very common
symptom of cystic fibrosis.

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(soft music)

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- Cystic fibrosis has a name
that\'s a little off putting.

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That\'s a lot of syllables.

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A lot of people aren\'t quite sure

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what this disease really is.

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Maybe they\'ve heard of it.

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Maybe they\'ve just heard it called CF.

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We all have two copies of
each gene in our system.

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One from mom, one from dad.

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Cystic fibrosis is caused by
misspellings in those genes.

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If you have two copies and
one of them isn\'t working,

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but the other one is, you\'re fine.

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But if you\'ve inherited a misspelled copy

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from your mother and
another from your father,

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so that both copies are not working,

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then you will develop cystic fibrosis.

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It is the most common, potentially fatal,

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genetic disease in Northern European

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background individuals, but
it occurs in others as well,

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as we see in the case of Ana and Isa.

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- One of the main issues
in cystic fibrosis

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is an imbalance of salt
and water in cells,

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and that causes thick mucus.

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Thick mucus causes
progressive lung disease,

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and ultimately, respiratory failure.

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- There is no cure for cystic
fibrosis at this point,

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as your lungs become more damaged,

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the only hope for survival
is lung transplantation.

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- Organ transplantation is a critical part

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of current medical therapies
for many conditions,

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CF being one example.

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And right now we have
this terrible problem

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of a limitation in the
numbers of available organs

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for those who desperately need them.

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- When you receive a gift
as amazing as a transplant,

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there is some sense of
obligation to give back.

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Nothing is possible if
we don\'t have health.

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And I\'ve learned that
more myself from personal

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experience than anything else.

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So now that I am healthy, I do what I can.

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- We\'re representing the
thousands of other people

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with CF or people who need transplants,

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that aren\'t able to go to Washington, DC.

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- We have thousands of
people desperate for an organ

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and desperate for a fighting
chance at a normal life.

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Even though we are making progress,

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the numbers of people on
the waiting lists are going

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up, not down.

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This is our collective societal issue,

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and everybody can make a contribution.

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- In America every day 19 people die

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because there is a shortage of organs.

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- Advocacy is the engine
of change for any issue

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in society, and particularly
for public health.

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And the beauty of advocacy
and the power of advocacy

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is it can start with one person.

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In this case, two people.

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- We are here on our fifth day of my 16th

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hospitalization and her...

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- 20th.
- 20th?

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- Yeah.

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Being in the hospital
really sort of sets in stone

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my abnormality, and none
of my other friends went

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into the hospital, so
this was just my story

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and Ana\'s story, and we
were the only ones going

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in and out.

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- I think that in terms
of growing up with a twin

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with cystic fibrosis, undoubtedly,
it was transformative.

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When we started to get sicker and we were

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in and out of the hospital
several times a year,

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we started to build our own cocoon.

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We became our own confidants.

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We became our best friends, our teachers,

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our personal therapists.

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- Our peers became adult
healthcare providers rather

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than our peers at school.

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And that comfort level also
made being in the hospital,

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not so scary.

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- I was a very emotional
child and writing gave me

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an outlet to express myself
and to record what I thought,

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would be a very short life.
(soft music)

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- I think Ana\'s the one
that started writing

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and she just started to list things,

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list her medicines and list her doctors.

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And then gradually we started
more of a diary format.

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We just started writing
about all the memories

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we had about previous hospital stays.

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- They were very, very special children.

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They had great motivation.

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I just encouraged them,
whatever they were doing.

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That\'s all I did.

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- [Narrator] Out of boredom,

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Anabel and Isabel Stenzel
say they started keeping

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a diary of their hospital
stays titled \"Life At Kaiser\".

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- \"Life At Kaiser\" was
sharing with the world

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what a patient\'s experience
was from the other side,

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from the internal side
of being in the hospital.

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- [Narrator] The book is illustrated,

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including how to do certain procedures,

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learned from experience,
plus tips on physical therapy

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of the chest.

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- I pound her back like this,

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to loosen secretions in the lung.

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Throughout our hospitalizations,

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and throughout our
experience with roommates,

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nobody really knows
what cystic fibrosis is.

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And so with our book, it
teaches people what it is.

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- [Narrator] Most startling
is the frank understanding

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of what they face.

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- When we were little, we
knew how bad CF could get.

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And we thought that we
were very lucky \'cause

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we were twins and we
shared the disease by two.

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But now we know that it progresses,

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and so now we each get as
sick as anybody else may get.

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- I plan to do my best in
school and get good grades

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and hopefully go on to college.

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And if I like, if I could last that long.

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♪ That makes two of us ♪

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♪ Who want to be ♪

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♪ Free ♪

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- This idea of Stanford
first occurred to us

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when we were about 14 years old.

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My parents said,

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this is where they do
heart lung transplants.

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And we\'re like, wow.

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That\'s like science fiction.

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- Stanford is really the
heart of us in many ways.

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We came here for college
and it opened up a whole new

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door of life for us, in
every way, emotionally,

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medically, academically.

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So certainly there were
fears going to college,

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but those fears were minimized
because we had each other.

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Little, did we know that
leaving for college was

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actually the most life-saving
best thing that we ever did.

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- [Isabel] Throughout our four years,

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pretty much we were always
a little bit outside

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of like the dorm partying and the dating,

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that didn\'t happen until senior year.

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- I fell in love with Isa
completely independent

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of cystic fibrosis.

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She sat me down and she
said I have an illness

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and I have to do therapy
every day with my sister

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and I cough a lot and I
just wanna let you know.

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I think that you should follow your heart,

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and if they\'re the right
person and the only issue is,

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well, they have a chronic illness

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that that shouldn\'t dissuade someone.

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- Ladies and gentlemen,

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I present to you Andrew and Isabel Byrnes,

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husband and wife.

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(people applauding)

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- Ana, I think had, I don\'t think, I know,

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had fundamental doubts and
concerns about our relationship.

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- And all of a sudden
this third person comes

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into the picture who takes Isa away to go

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to Napa Valley for the weekend.

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And she\'s having fun while
I\'m struggling thinking

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who\'s gonna take care of me.

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Observing romantic relationships around me

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and observing love without
ever experienced it myself

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was not easy.

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But at the same time,

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I was very happy for Isa,
that she found someone

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and that there was this
person who was so loving,

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so unconditionally
accepting of our dynamic.

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We all grew together.

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(soft music)

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- At Stanford Hospital, once a month,

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there is a support group
for people who are waiting

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for lung transplant and those who have

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received lung transplant.

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It\'s a really dynamic,
engaging, loving, open,

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and tremendously hopeful environment.

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- Welcome everybody.

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And this is a very special
gathering of lung recipients.

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To be here, to just talk
to each other and get

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to know each other even more.

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I thought of this prayer
flag project to give

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to Japanese donor families.

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They\'ve never really been
recognized and they think

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it would be meaningful to
share with those Japanese

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donor families, how we feel
about being recipients.

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- I received a heart double
lung transplant in 1997.

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And the underlying cause of my transplant

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was cystic fibrosis.

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Genetic disease, I still
have cystic fibrosis.

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It affects now my sinuses
mostly, my pancreas,

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but my lungs have returned.

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I\'m at a 100% lung capacity.

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- Great.

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- As you can imagine,
quickly, we become very close,

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because the journey of lung transplant

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is a roller coaster ride.

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And it\'s probably one of the
most pivotal, challenging,

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life-changing, existential
experiences that any

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human being can go through.

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- I was very, I don\'t
know if it was nervous.

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It was just all of these
really mixed emotions

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about waiting for someone
to pass away and hoping

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that they are gonna
give that gift of life.

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And just praying for
the family was really,

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really important to us and our family.

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If that person had not donated,
it could have ended very,

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very badly, so...

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- Yeah, it\'s a very sober
thing to realize it,

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someone has lost their life.

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But at the same time,

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they didn\'t lose their life
because I got my transplant.

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They would\'ve lost
their life whether I got

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the transplant or whether
the lungs went in the ground.

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- Every breath we take
from the minute we\'re born

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to the minute we die is about renewal.

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But when you have sick
lungs and then you have

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a lung transplant, it\'s a
bigger level of renewal,

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and it\'s about becoming alive again.

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- It is a completely
different feeling to breathe

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with a gift of these
donated lungs than it was

00:15:52.837 --> 00:15:55.240
to breathe my entire life.

00:15:55.240 --> 00:15:58.410
Because when I close my
eyes and I breathe in,

00:15:58.410 --> 00:16:01.460
I feel like I\'m in a sanctuary, you know.

00:16:01.460 --> 00:16:06.073
It\'s just peace. And that\'s
new for me, and that\'s awesome.

00:16:07.500 --> 00:16:08.333
It\'s awesome.

00:16:09.280 --> 00:16:12.230
Even though I have to wear
this mask for the next

00:16:12.230 --> 00:16:14.446
couple of months, it doesn\'t matter.

00:16:14.446 --> 00:16:15.696
That\'s awesome.

00:16:17.100 --> 00:16:19.120
- I decided to write my
donor family a letter

00:16:19.120 --> 00:16:21.403
about four months after my surgery.

00:16:23.010 --> 00:16:26.290
And then six months later, I
received a letter from them.

00:16:26.290 --> 00:16:30.380
My donor was a male and his
brother\'s the one who wrote

00:16:30.380 --> 00:16:33.093
me and he called me his sister.

00:16:34.530 --> 00:16:37.410
And just to find out his
name was very, I mean,

00:16:37.410 --> 00:16:40.160
I pray day in and day
out that I will be able

00:16:40.160 --> 00:16:43.877
to express my gratitude for
what they\'ve done for me

00:16:43.877 --> 00:16:45.223
and my family.

00:16:46.150 --> 00:16:51.100
- Breathing to me means
that my husband can have me

00:16:51.100 --> 00:16:52.660
and he\'s not a widow.

00:16:52.660 --> 00:16:55.053
And breathing means I\'m still with my twin

00:16:55.053 --> 00:16:57.320
and with my family.

00:16:57.320 --> 00:16:59.790
Breathing means I can write
a list of things I wanna

00:16:59.790 --> 00:17:01.610
do and actually do them.

00:17:01.610 --> 00:17:03.610
So that\'s really what breathing is to me,

00:17:03.610 --> 00:17:06.800
the possibility of so many things.

00:17:06.800 --> 00:17:08.228
Everyone, say breath.

00:17:08.228 --> 00:17:09.478
- [All] Breath.

00:17:17.941 --> 00:17:20.608
(Anna coughing)

00:17:28.290 --> 00:17:30.830
- I have a very strict daily regimen.

00:17:30.830 --> 00:17:32.653
And when I get up in the morning,

00:17:33.560 --> 00:17:35.560
the first thing I do
is my airway clearance

00:17:35.560 --> 00:17:36.890
and my nebulizers.

00:17:36.890 --> 00:17:41.840
I use albuterol, which
opens your lungs and allows

00:17:41.840 --> 00:17:44.220
you to take as deep of
a breath as possible.

00:17:44.220 --> 00:17:46.887
(Anna coughing)

00:17:48.960 --> 00:17:50.600
You have to work hard at getting stuff

00:17:50.600 --> 00:17:52.270
out and treatments aren\'t passive.

00:17:52.270 --> 00:17:56.030
You have to be pretty active
to make it work for you.

00:17:56.030 --> 00:18:00.520
But once it\'s done, then it\'s
like, oh, I can do it again.

00:18:00.520 --> 00:18:03.740
- So I\'ve known Anna
Modlin for 20 years now.

00:18:03.740 --> 00:18:06.950
The Modlin family means the world to me.

00:18:06.950 --> 00:18:10.403
I love them as much as
I love my own family.

00:18:11.850 --> 00:18:14.700
- My mom and I make a really good team

00:18:14.700 --> 00:18:16.090
in treating this disease.

00:18:16.090 --> 00:18:18.450
And we actually have
done that my whole life,

00:18:18.450 --> 00:18:21.880
not just at the end stage part.

00:18:21.880 --> 00:18:23.570
- The CF has been the center.

00:18:23.570 --> 00:18:28.060
And Anna has been the center
of my life and caring for her.

00:18:28.060 --> 00:18:31.333
It\'s been a very intense
experience of motherhood.

00:18:32.770 --> 00:18:37.770
- I am a patient who\'s been
having more issues lately.

00:18:38.660 --> 00:18:42.680
I have my oxygen, which I
have to use 24 hours a day.

00:18:42.680 --> 00:18:44.580
These are my travel tanks.

00:18:44.580 --> 00:18:49.580
So each one lasts about
four hours for two liters.

00:18:50.240 --> 00:18:52.640
- When Anna Modlin was nine years old,

00:18:52.640 --> 00:18:55.730
the gene for cystic
fibrosis was discovered.

00:18:55.730 --> 00:18:59.560
And I was 19 at the time
and I said, I promise you,

00:18:59.560 --> 00:19:03.483
that by the time you\'re 19,
there\'ll be a cure for CF.

00:19:04.370 --> 00:19:08.270
But unfortunately, that didn\'t happen yet.

00:19:08.270 --> 00:19:12.033
And she\'s 29 and she\'s at
the end of her life with CF.

00:19:14.760 --> 00:19:17.370
There\'s nothing more for
her. There\'s no new medicine.

00:19:17.370 --> 00:19:20.890
There\'s no cure. There\'s
no gene therapy yet.

00:19:20.890 --> 00:19:23.973
So the only hope for
her now is transplant.

00:19:26.760 --> 00:19:29.620
- That\'s the hardest part
is that no matter how hard

00:19:29.620 --> 00:19:31.650
I try and no matter what I do,

00:19:31.650 --> 00:19:36.210
how educated I am about the
illness, it\'s still gonna win.

00:19:36.210 --> 00:19:38.982
But what I\'m lucky
about is that transplant

00:19:38.982 --> 00:19:41.110
is the option at the end.

00:19:41.110 --> 00:19:43.840
And when I was born,
that wasn\'t an option.

00:19:43.840 --> 00:19:48.840
And when I first grasped that reality,

00:19:49.990 --> 00:19:52.640
made me obviously really
sad because at the end of...

00:19:53.980 --> 00:19:55.344
It means it\'s the end.

00:19:55.344 --> 00:20:00.344
Before, that would be it,

00:20:00.370 --> 00:20:03.020
there wasn\'t something else.

00:20:03.020 --> 00:20:06.203
But now it\'s so hopeful
that there\'s something

00:20:06.203 --> 00:20:08.020
on the other side.

00:20:08.020 --> 00:20:11.720
So I\'ve kind of shifted my focus that all

00:20:11.720 --> 00:20:15.090
of this is worth it
because I have to be strong

00:20:15.090 --> 00:20:18.470
to get through the surgery
and then live a life

00:20:18.470 --> 00:20:19.483
that I\'m gonna live.

00:20:22.950 --> 00:20:25.520
- Anna Modlin has become
one of the most important

00:20:25.520 --> 00:20:26.930
people in my life.

00:20:26.930 --> 00:20:31.630
We\'ve traveled the road of
this ugly disease together

00:20:31.630 --> 00:20:35.450
and watched it progress in
ways that we have fought very,

00:20:35.450 --> 00:20:38.230
very hard to not let that happen.

00:20:38.230 --> 00:20:41.360
I feel like she\'s a
little sister in a way.

00:20:41.360 --> 00:20:45.380
Anna Modlin was my camper
at cystic fibrosis camp.

00:20:45.380 --> 00:20:49.910
And we would spend one week
every summer, side-by-side,

00:20:49.910 --> 00:20:51.973
becoming close friends.

00:20:51.973 --> 00:20:54.640
(upbeat music)

00:20:57.430 --> 00:21:00.520
- So 11 to 24, I went to camp.

00:21:00.520 --> 00:21:01.900
It was that important to me.

00:21:01.900 --> 00:21:05.110
I made an effort to go every single summer

00:21:05.110 --> 00:21:08.400
and I would plan my
hospitalizations before camp,

00:21:08.400 --> 00:21:10.860
so I\'d be in good shape for camp,

00:21:10.860 --> 00:21:14.273
and make sure I didn\'t
get sick, and so on.

00:21:15.840 --> 00:21:18.720
This was a very special
place where we would go

00:21:18.720 --> 00:21:22.290
away to the mountains with
about 100 other children

00:21:22.290 --> 00:21:25.333
with cystic fibrosis
and we would be normal.

00:21:28.360 --> 00:21:33.360
- That one week they
looked forward whole year

00:21:33.380 --> 00:21:35.260
and they made great friends.

00:21:35.260 --> 00:21:39.250
- And it was the most
amazing coming of age,

00:21:39.250 --> 00:21:42.133
beautiful experience in my life.

00:21:43.080 --> 00:21:47.450
I learned about music. I learned
about expressing oneself.

00:21:47.450 --> 00:21:51.120
I learned about real
Americans and what they eat

00:21:51.120 --> 00:21:52.920
and what they say and what they do.

00:21:52.920 --> 00:21:55.990
And I learned about other
children with cystic

00:21:55.990 --> 00:21:57.680
fibrosis and how they cope

00:21:57.680 --> 00:22:00.163
with it and how their
families cope with it.

00:22:01.240 --> 00:22:03.520
And for the first time
it was like a curtain was

00:22:03.520 --> 00:22:07.710
lifted and I saw the
reality of my disease.

00:22:07.710 --> 00:22:09.700
- Certainly there were
children who were much sicker

00:22:09.700 --> 00:22:12.890
than I, some that were
barrel chested and some

00:22:12.890 --> 00:22:15.990
that were on oxygen when
they were seven years old

00:22:15.990 --> 00:22:20.400
or tube feeding or some
were in wheelchairs.

00:22:20.400 --> 00:22:22.970
- Those were the kids that taught me, wow,

00:22:22.970 --> 00:22:24.767
I better take this disease seriously.

00:22:24.767 --> 00:22:27.240
I better take care of myself.

00:22:27.240 --> 00:22:32.240
And it made me a wiser young
teenager. It changed me.

00:22:37.520 --> 00:22:40.250
- And there was an
older girls cabin called

00:22:40.250 --> 00:22:42.040
The Pink Ladies.

00:22:42.040 --> 00:22:46.170
And in a couple of years, all
the pink ladies were gone,

00:22:46.170 --> 00:22:50.410
and I thought, wow, that\'s what happens?

00:22:50.410 --> 00:22:53.640
Basically, we\'re all
heading towards extinction.

00:22:53.640 --> 00:22:56.350
You know, these little cliques of friends,

00:22:56.350 --> 00:22:58.820
one by one, dies.

00:22:58.820 --> 00:23:02.680
I mean, what a sad existence.

00:23:02.680 --> 00:23:05.180
And then I realized, you know,
those that did die, well,

00:23:05.180 --> 00:23:08.880
camp was the most important
part of their lives,

00:23:08.880 --> 00:23:11.573
because for one week a
year they were normal.

00:23:19.030 --> 00:23:21.089
- I think during our
college years was a time

00:23:21.089 --> 00:23:24.980
where we started to lose
friends to cystic fibrosis

00:23:24.980 --> 00:23:26.453
one after the other.

00:23:27.626 --> 00:23:29.459
♪ Ooh ♪

00:23:36.020 --> 00:23:37.300
- Sometimes it was kids.

00:23:37.300 --> 00:23:40.448
Sometimes it was older
people, all around us,

00:23:40.448 --> 00:23:43.090
one at a time, our friends died.

00:23:43.090 --> 00:23:46.070
And that was a very overwhelming feeling.

00:23:46.070 --> 00:23:48.790
That\'s the punishment
for being the survivor.

00:23:48.790 --> 00:23:52.330
We have to feel the pain
and the sadness and kind

00:23:52.330 --> 00:23:54.450
of the mystery of why did they go first

00:23:54.450 --> 00:23:55.873
and we\'re still here.

00:24:01.718 --> 00:24:06.718
♪ Ooh ♪

00:24:09.601 --> 00:24:12.070
♪ Ooh ♪

00:24:12.070 --> 00:24:15.340
- I\'m glad that I can
remember them and honor them.

00:24:15.340 --> 00:24:18.330
And I\'m glad that I knew
these people and I learned

00:24:18.330 --> 00:24:20.560
from them and I learned
from their families

00:24:20.560 --> 00:24:21.920
after they\'re gone

00:24:21.920 --> 00:24:26.920
how to go on in the world
when you have lost someone.

00:24:39.910 --> 00:24:42.680
I never really had much
expectation that I would

00:24:42.680 --> 00:24:46.350
live very long or that my
life would be so great.

00:24:46.350 --> 00:24:49.670
So when I found myself
in very advanced stage

00:24:49.670 --> 00:24:53.436
CF, I was really reflecting
on what I had and not

00:24:53.436 --> 00:24:55.170
what I didn\'t have.

00:24:55.170 --> 00:24:59.790
I didn\'t sit in a place
of despair and lose hope.

00:24:59.790 --> 00:25:01.700
I think a lot of that
had to do with the fact

00:25:01.700 --> 00:25:04.120
that transplant was offered to me.

00:25:04.120 --> 00:25:06.380
If I didn\'t have transplant
offered then there would

00:25:06.380 --> 00:25:08.823
be nothing to do but
prepare for one\'s death.

00:25:10.130 --> 00:25:14.640
- I was listed for a
transplant in 1997 when I was

00:25:14.640 --> 00:25:15.913
25 years old.

00:25:17.220 --> 00:25:20.580
At the time, my lung
capacity was about 30%.

00:25:20.580 --> 00:25:24.283
So I was functioning on about
a third of a normal lung.

00:25:25.380 --> 00:25:26.220
And most importantly,

00:25:26.220 --> 00:25:28.760
my day-to-day functioning
was more impaired.

00:25:28.760 --> 00:25:31.490
For example, my big event of
the weekend would be going

00:25:31.490 --> 00:25:32.760
to the market.

00:25:32.760 --> 00:25:35.100
I would go to the grocery
store, get my food for the week,

00:25:35.100 --> 00:25:37.150
come home, and just, that was it.

00:25:37.150 --> 00:25:40.183
I was exhausted. That\'s
pretty much all I could do.

00:25:41.400 --> 00:25:44.660
- It helped me to be able to
help her, by making dinner

00:25:44.660 --> 00:25:46.520
or taking garbage

00:25:46.520 --> 00:25:48.940
out because she was too
short of breath to do that.

00:25:48.940 --> 00:25:50.020
Those simple things.

00:25:50.020 --> 00:25:53.340
I was her partner in life,

00:25:53.340 --> 00:25:57.080
going through end-stage disease together.

00:25:57.080 --> 00:26:00.880
- The call came June 14th,
2000, right in the middle

00:26:00.880 --> 00:26:03.700
of the year, right in
the middle of the month,

00:26:03.700 --> 00:26:05.250
and in the middle of the night.

00:26:09.040 --> 00:26:11.560
- We got the call in the
middle of the night, basically,

00:26:11.560 --> 00:26:14.190
that we needed to be to the hospital.

00:26:14.190 --> 00:26:17.350
- [Woman] They asked us to
donate and we hadn\'t decided.

00:26:17.350 --> 00:26:19.230
- We decided that we were
gonna make it unanimous.

00:26:19.230 --> 00:26:21.970
It had to be unanimous or
it wasn\'t going to happen.

00:26:21.970 --> 00:26:23.420
- I don\'t know if you\'ve
ever been in a room

00:26:23.420 --> 00:26:24.870
where somebody\'s brain is dead,

00:26:24.870 --> 00:26:28.213
but they\'re not there
any more, they\'re gone.

00:26:29.240 --> 00:26:31.960
And you can feel it when you\'re walk in.

00:26:31.960 --> 00:26:34.140
- There was no going back from that.

00:26:34.140 --> 00:26:38.070
And he did not need his organs any more.

00:26:38.070 --> 00:26:40.860
He was somewhere else completely.

00:26:40.860 --> 00:26:45.860
And why not give them to
someone who needs them?

00:26:47.410 --> 00:26:49.950
- We went to the hospital
within two hours.

00:26:49.950 --> 00:26:52.130
That\'s the timeframe that
you\'re required to go

00:26:52.130 --> 00:26:53.810
to the hospital for lungs.

00:26:53.810 --> 00:26:57.140
I got checked in and they
do all kinds of tests on me

00:26:57.140 --> 00:26:59.930
to make sure that I\'m ready for surgery.

00:26:59.930 --> 00:27:01.905
- The individual who\'s
the recipient has to come

00:27:01.905 --> 00:27:04.650
in and be in good health and if you take

00:27:04.650 --> 00:27:06.060
their temperature and
they have a temperature

00:27:06.060 --> 00:27:09.465
of 100, transplant is called off.

00:27:09.465 --> 00:27:12.670
So there\'s lots of little
things that can influence it.

00:27:12.670 --> 00:27:15.610
You have a little cold that
day, it\'s not gonna happen.

00:27:15.610 --> 00:27:18.640
- Treating the lung in the
donor is somewhat cumbersome.

00:27:18.640 --> 00:27:22.110
It takes time. We don\'t
have that much time always.

00:27:22.110 --> 00:27:25.000
And there are a number of
issues that make it challenging.

00:27:25.000 --> 00:27:26.300
Possible, but challenging.

00:27:27.620 --> 00:27:30.840
The standard way that we preserve organs

00:27:30.840 --> 00:27:33.968
for transplantation is we cool them down.

00:27:33.968 --> 00:27:38.300
By cooling an organ down, you
slow down the dying process.

00:27:38.300 --> 00:27:42.810
So instead of it dying at 100%
rate, it\'s dying at 5% rate.

00:27:42.810 --> 00:27:45.580
So you\'re still rushing,
but you\'ve got some time.

00:27:45.580 --> 00:27:48.420
That is what made
transplantation possible.

00:27:48.420 --> 00:27:50.990
- It took a while for all
the preparation to happen

00:27:50.990 --> 00:27:55.320
and for the donor\'s lungs
to be removed and flown

00:27:55.320 --> 00:27:57.560
by helicopter here to Stanford.

00:27:57.560 --> 00:27:59.650
It was a nine hour surgery.

00:27:59.650 --> 00:28:03.040
I woke up in the ICU and the
first thing I thought is,

00:28:03.040 --> 00:28:04.920
wow, I\'m alive.

00:28:04.920 --> 00:28:08.250
Throughout my life, I\'ve
probably had over 800

00:28:08.250 --> 00:28:10.830
X-rays taken of my chest.

00:28:10.830 --> 00:28:15.830
My X-ray would look very white,
like cloudy day in the sky.

00:28:17.840 --> 00:28:21.590
Doctors would look at
the X-rays and give kind

00:28:21.590 --> 00:28:23.400
of a sad sigh.

00:28:23.400 --> 00:28:26.545
And it wasn\'t until later
where I learned that black

00:28:26.545 --> 00:28:30.310
is air and white is lung damage.

00:28:30.310 --> 00:28:34.280
Then suddenly I had a
transplant and my X-ray

00:28:34.280 --> 00:28:36.200
was all black.

00:28:36.200 --> 00:28:40.170
And for the first time I
was like, wow, that\'s air.

00:28:40.170 --> 00:28:42.220
And that\'s only air.

00:28:42.220 --> 00:28:44.710
And I\'m seeing the wires
and the staples and all

00:28:44.710 --> 00:28:47.652
of the medical technology
that\'s holding this foreign

00:28:47.652 --> 00:28:52.652
lung stapled in me, breathing for me.

00:28:52.760 --> 00:28:53.790
And we have this twin thing.

00:28:53.790 --> 00:28:55.850
If she shows her scar, I\'ll show mine.

00:28:55.850 --> 00:28:59.340
If I show mine, she\'ll
show her. So it\'s okay.

00:28:59.340 --> 00:29:00.970
We have nothing to be embarrassed about.

00:29:00.970 --> 00:29:02.193
- Right, so here we go.

00:29:03.299 --> 00:29:05.249
And you have to, like,
excuse the super padded bra.

00:29:05.249 --> 00:29:07.520
- (laughs) Do we take that off?

00:29:07.520 --> 00:29:09.230
- Absolutely.

00:29:09.230 --> 00:29:11.133
What would it be like if
you just had a bra on?

00:29:11.133 --> 00:29:14.190
I don\'t care. So, there you go.

00:29:14.190 --> 00:29:15.860
This is the transplant scar,

00:29:15.860 --> 00:29:17.620
which goes under the breastbone.

00:29:17.620 --> 00:29:20.130
And then these are the port-a-cath scars

00:29:20.130 --> 00:29:22.170
where we had our infusions.

00:29:22.170 --> 00:29:23.700
And then I don\'t think you can even see

00:29:23.700 --> 00:29:26.210
my chest tube scars.

00:29:26.210 --> 00:29:30.810
So I had some chest tubes as
well. So these are chest tubes.

00:29:30.810 --> 00:29:32.680
They look like gunshot wounds.

00:29:32.680 --> 00:29:36.580
And then my main transplant
scar goes across here.

00:29:36.580 --> 00:29:37.950
- Yeah, I think mine is darker

00:29:37.950 --> 00:29:41.130
than Ana\'s, just because of keloid.

00:29:41.130 --> 00:29:43.330
- Because I was born with
the bowel obstruction,

00:29:43.330 --> 00:29:45.548
I had surgery at three days of age.

00:29:45.548 --> 00:29:49.720
And in 1972, the surgeon\'s attitude was,

00:29:49.720 --> 00:29:51.910
this baby has cystic fibrosis,

00:29:51.910 --> 00:29:53.445
she\'s not gonna live very long,

00:29:53.445 --> 00:29:56.810
so we don\'t need to make the scar pretty.

00:29:56.810 --> 00:30:00.330
And yeah, it doesn\'t really stretch.

00:30:00.330 --> 00:30:01.690
So that\'s why it looks like,

00:30:01.690 --> 00:30:04.281
I\'m fat on the top and
the bottom. (laughs)

00:30:04.281 --> 00:30:06.864
(gentle music)

00:30:13.540 --> 00:30:15.230
- When I was first transplanted,

00:30:15.230 --> 00:30:18.060
one of my friends who was
transplanted six years

00:30:18.060 --> 00:30:21.130
earlier told me that when
you go to special places,

00:30:21.130 --> 00:30:23.550
blow bubbles, because
you can honor your donor

00:30:23.550 --> 00:30:26.583
and you can see his gift in the bubbles.

00:30:27.840 --> 00:30:30.260
- [Anabel] And it\'s a
beautiful symbol of life,

00:30:30.260 --> 00:30:33.000
that life comes out of breath

00:30:33.000 --> 00:30:34.832
and that life floats and is taken

00:30:34.832 --> 00:30:36.960
by the grace of wind.

00:30:36.960 --> 00:30:39.763
And it can take you in
all different directions.

00:30:42.020 --> 00:30:43.910
- It seems like throughout our whole life,

00:30:43.910 --> 00:30:47.690
one of us has been strong,
when the other has been weak.

00:30:47.690 --> 00:30:51.030
And when we finally both had transplants,

00:30:51.030 --> 00:30:53.500
we were finally both strong.

00:30:53.500 --> 00:30:56.120
And what a celebration.

00:30:56.120 --> 00:30:59.650
It was like the party was just beginning.

00:30:59.650 --> 00:31:03.140
And we had overcome

00:31:03.140 --> 00:31:08.140
this life long hard
work of cystic fibrosis.

00:31:08.700 --> 00:31:13.090
And we were two kids in a candy
store, ready to make plans,

00:31:13.090 --> 00:31:15.073
run free and have fun.

00:31:20.590 --> 00:31:21.890
- [Anabel] We were free.

00:31:21.890 --> 00:31:24.430
We did anything and everything we wanted,

00:31:24.430 --> 00:31:26.380
we were just each other\'s best friends.

00:31:32.643 --> 00:31:35.544
♪ There\'s more to believe ♪

00:31:35.544 --> 00:31:39.371
♪ And so much more to see ♪

00:31:39.371 --> 00:31:41.704
♪ I am free ♪

00:31:43.922 --> 00:31:45.820
♪ Free to be ♪
- And it was such

00:31:45.820 --> 00:31:48.200
a fabulous adventure.

00:31:48.200 --> 00:31:51.497
We went to places we never
dreamed we could go to.

00:31:51.497 --> 00:31:54.090
- I\'m nine months post-transplant.

00:31:54.090 --> 00:31:57.440
I\'m at the Grand Canyon
at 7,000 feet elevation.

00:31:57.440 --> 00:31:58.963
I can\'t believe I\'m here.

00:32:00.200 --> 00:32:03.780
It was almost like,
pinch me, is this real?

00:32:03.780 --> 00:32:07.113
In the sense that nothing
would hold us back.

00:32:07.990 --> 00:32:11.533
It was magical. It was redemption.

00:32:13.400 --> 00:32:16.360
- When we started to
speak to drug companies

00:32:16.360 --> 00:32:19.350
and doctors and nurses and
conferences about living

00:32:19.350 --> 00:32:22.760
with cystic fibrosis, people
validated us and loved

00:32:22.760 --> 00:32:25.100
our story and wanted to hear more.

00:32:25.100 --> 00:32:28.400
That encouraged me, that
I had something to say.

00:32:28.400 --> 00:32:30.990
- Isa and I had decided to write a book,

00:32:30.990 --> 00:32:34.880
more as our own sense of
documenting our lives,

00:32:34.880 --> 00:32:38.280
we set out to organize our own book tour

00:32:38.280 --> 00:32:39.760
by calling bookstores,

00:32:39.760 --> 00:32:43.350
by calling cystic fibrosis
centers and driving

00:32:43.350 --> 00:32:44.490
across the country.

00:32:44.490 --> 00:32:47.810
We wanted to leave
reflections of what we learned

00:32:47.810 --> 00:32:51.130
and what we experienced
and the emotional mental

00:32:51.130 --> 00:32:54.647
growth that cystic fibrosis gave to us.

00:32:54.647 --> 00:32:57.760
(announcer speaking)

00:32:57.760 --> 00:33:02.760
(people applauding)
(upbeat music)

00:33:03.660 --> 00:33:04.887
- So after two years,

00:33:04.887 --> 00:33:07.600
\"The Power of Two,\" in
English was translated

00:33:07.600 --> 00:33:10.400
into Japanese and became
(speaking in foreign language).

00:33:14.178 --> 00:33:18.095
(speaking in foreign language)

00:33:31.980 --> 00:33:34.310
So we\'re here 10 days
before we leave to our trip

00:33:34.310 --> 00:33:37.100
to Japan, and we\'re
having a dress rehearsal

00:33:37.100 --> 00:33:38.431
of our speeches.

00:33:38.431 --> 00:33:41.230
Keep in mind that we\'re
half Japanese, so we speak

00:33:41.230 --> 00:33:43.060
half-assed Japanese.

00:33:43.060 --> 00:33:46.350
- I think I just deleted all
the extra medical statements.

00:33:46.350 --> 00:33:48.220
- Initially we had decided to go,

00:33:48.220 --> 00:33:51.153
just Isa and I, as a trip to go and talk

00:33:51.153 --> 00:33:55.820
about our book and maybe
tour around, visit family.

00:33:55.820 --> 00:33:58.860
And then it completely
changed into much more

00:33:58.860 --> 00:34:03.160
of a professional
opportunity with more than 19

00:34:03.160 --> 00:34:05.530
speeches that we\'re giving with 10 cities

00:34:05.530 --> 00:34:06.380
that we\'re visiting.

00:34:06.380 --> 00:34:09.570
And I feel like the
expectations are very high.

00:34:09.570 --> 00:34:11.670
- It\'s purely a cultural problem

00:34:11.670 --> 00:34:14.921
in Japan that organ
donation is not popular.

00:34:14.921 --> 00:34:19.670
And this is a country who
has excellent medical care.

00:34:19.670 --> 00:34:23.270
- And I know that the way
that Japanese culture deals

00:34:23.270 --> 00:34:26.130
with death and transplant
and organ donation

00:34:26.130 --> 00:34:28.130
is very different from us.

00:34:28.130 --> 00:34:31.300
- It\'s not fair that because we were born

00:34:31.300 --> 00:34:34.890
in America, we had the chance
to receive transplants.

00:34:34.890 --> 00:34:36.020
It\'s not fair.

00:34:36.020 --> 00:34:38.500
If we had been born in
Japan, we would have died

00:34:38.500 --> 00:34:39.730
of that disease.

00:34:39.730 --> 00:34:42.070
This is about dozens of people

00:34:42.070 --> 00:34:46.660
in Japan and in America who
are kind of mobilizing us

00:34:46.660 --> 00:34:49.673
to go and be spokespersons for this cause.

00:34:51.090 --> 00:34:54.650
I\'ve never been away for
one month post-transplant

00:34:54.650 --> 00:34:57.710
and I\'m healthy, but
it\'s still a little scary

00:34:57.710 --> 00:35:00.270
because I fear problems.

00:35:00.270 --> 00:35:01.103
Of course, when you\'re far

00:35:01.103 --> 00:35:04.760
away from your transplant
center, it just, it gets scary.

00:35:04.760 --> 00:35:07.290
- With any transplant
patient we always take a long

00:35:07.290 --> 00:35:09.008
time to prepare for our trips.

00:35:09.008 --> 00:35:12.200
This is my repertoire of medications.

00:35:12.200 --> 00:35:14.610
After transplant it\'s primarily pills.

00:35:14.610 --> 00:35:17.070
I do still have cystic fibrosis.

00:35:17.070 --> 00:35:20.830
I do still have plenty of
gastrointestinal problems

00:35:20.830 --> 00:35:23.250
to remind me that I have cystic fibrosis.

00:35:23.250 --> 00:35:27.080
- So the TOBI and the
ULTRASE, the enzymes.

00:35:27.080 --> 00:35:28.452
Some of the vitamins I\'m taking

00:35:28.452 --> 00:35:32.120
because of CF, and the rest are mostly

00:35:32.120 --> 00:35:35.040
immunosuppressants
because of the transplant,

00:35:35.040 --> 00:35:37.820
but also medicines that
I have to take to counter

00:35:37.820 --> 00:35:40.830
the side effects of
those immunosuppressants.

00:35:40.830 --> 00:35:43.390
- I don\'t want this to
stress me out so much

00:35:43.390 --> 00:35:44.740
that I get sick.

00:35:44.740 --> 00:35:48.330
To be honest, I\'ll just do my
best. I\'m gonna do my best.

00:35:48.330 --> 00:35:50.110
I\'m gonna enjoy.

00:35:50.110 --> 00:35:52.370
And I\'m gonna remember that
most important it\'s gonna

00:35:52.370 --> 00:35:53.890
be about having fun.

00:35:53.890 --> 00:35:56.940
- We just realized we have
to do exactly what we want,

00:35:56.940 --> 00:36:01.493
taking the appropriate
precautions and go and live.

00:36:02.336 --> 00:36:04.375
(plane engine roaring)

00:36:04.375 --> 00:36:07.237
- [Woman] Ladies and
gentlemen, we are launching...

00:36:07.237 --> 00:36:09.820
(upbeat music)

00:36:26.040 --> 00:36:29.200
- When I\'m in Japan, I love it there.

00:36:29.200 --> 00:36:32.190
It\'s clean, people are kind,

00:36:32.190 --> 00:36:34.863
people are polite, they\'re courteous.

00:36:36.630 --> 00:36:40.820
So I do go back with, you
know, certain nostalgia,

00:36:40.820 --> 00:36:44.883
fondness, appreciation of
my mother and her family,

00:36:45.880 --> 00:36:48.063
but also a yearning for more.

00:36:50.660 --> 00:36:55.320
While Japanese culture undoubtedly
has incredible strengths,

00:36:55.320 --> 00:36:58.250
there are certain aspects
in the organ donation

00:36:58.250 --> 00:37:03.250
picture that are a little bit
more difficult to understand.

00:37:04.124 --> 00:37:08.374
(man speaking in foreign language)

00:37:18.440 --> 00:37:20.620
- In Japan if you need a transplant,

00:37:20.620 --> 00:37:23.300
you have to wait a very long time.

00:37:23.300 --> 00:37:26.524
20 years for a kidney,
six years for a heart,

00:37:26.524 --> 00:37:28.750
four years for a lung.

00:37:28.750 --> 00:37:33.560
This is because there are so
few Japanese organ donors.

00:37:33.560 --> 00:37:38.460
In America, out of approximately
307 million people,

00:37:38.460 --> 00:37:43.460
nearly 28,500 organs were
transplanted in 2009.

00:37:44.110 --> 00:37:47.090
When you compare that with
Japan, which has a little

00:37:47.090 --> 00:37:50.353
less than half of the
population of America, only

00:37:50.353 --> 00:37:55.353
193 organs were transplanted
in the same year.

00:37:55.360 --> 00:37:58.180
This places Japan at
the bottom of the list

00:37:58.180 --> 00:38:00.923
of industrialized nations for transplant.

00:38:01.950 --> 00:38:04.260
- Some actually pay for the organ by going

00:38:04.260 --> 00:38:06.780
to China or Pakistan.

00:38:06.780 --> 00:38:09.510
Some raise money to pay
for medical expenses

00:38:09.510 --> 00:38:10.830
here in America.

00:38:10.830 --> 00:38:13.940
Unfortunately, Germany,
Australia, Great Britain

00:38:13.940 --> 00:38:16.210
have closed their doors to the Japanese.

00:38:16.210 --> 00:38:19.220
They say, you have the money,
you have the technology,

00:38:19.220 --> 00:38:21.220
you find your own donors.

00:38:21.220 --> 00:38:24.276
We have friends who are
raising money by standing

00:38:24.276 --> 00:38:27.650
on street corners with a box saying,

00:38:27.650 --> 00:38:30.310
please give money for a transplant.

00:38:30.310 --> 00:38:33.740
- It\'s a situation I
could never have imagined

00:38:33.740 --> 00:38:36.810
when I was waiting, \'cause at that point,

00:38:36.810 --> 00:38:39.300
all I wanted to do was breathe.

00:38:39.300 --> 00:38:41.663
I couldn\'t even imagine fundraising.

00:38:43.270 --> 00:38:46.020
It\'s unbelievable what the
Japanese have to go through.

00:38:49.075 --> 00:38:52.992
(speaking in foreign language)

00:39:37.600 --> 00:39:41.370
The people in Japan have
been extraordinarily

00:39:41.370 --> 00:39:45.520
receptive to our visit.
(speaking in foreign language)

00:39:45.520 --> 00:39:49.580
And have planned unbelievable
amount of engagements.

00:39:49.580 --> 00:39:51.793
And we\'re so thankful to them.

00:39:53.640 --> 00:39:57.740
- My father had a hepatitis C virus.

00:39:57.740 --> 00:39:59.880
He was a former deputy prime minister

00:39:59.880 --> 00:40:01.870
and the former foreign minister.

00:40:01.870 --> 00:40:03.580
He was very famous.

00:40:03.580 --> 00:40:08.580
End of the 2001 he was
hospitalized and doctors told us,

00:40:09.850 --> 00:40:12.880
if we do the liver transplant,

00:40:12.880 --> 00:40:17.080
that\'s probably the only
way to have him live longer

00:40:17.080 --> 00:40:18.750
than six months.

00:40:18.750 --> 00:40:22.070
I gave a part of my liver to my father.

00:40:22.070 --> 00:40:24.650
So we decided to go public

00:40:24.650 --> 00:40:28.740
even before the operation and
the operation was successful.

00:40:28.740 --> 00:40:30.200
So he\'s now healthy.

00:40:30.200 --> 00:40:31.670
Wherever he goes, I mean,

00:40:31.670 --> 00:40:34.450
people know that he had a new liver

00:40:34.450 --> 00:40:36.970
and he\'s now very healthy.

00:40:36.970 --> 00:40:39.210
And then I realized,

00:40:39.210 --> 00:40:43.370
if we can do organ transplant operation

00:40:43.370 --> 00:40:45.200
from the brain dead people,

00:40:45.200 --> 00:40:48.480
we don\'t actually have to cut the body

00:40:48.480 --> 00:40:52.023
of the healthy people.
(gentle music)

00:40:53.870 --> 00:40:56.850
- The Japanese believe that death happens

00:40:56.850 --> 00:40:58.570
when the heart stops.

00:40:58.570 --> 00:41:02.260
So the idea of the brain dying first,

00:41:02.260 --> 00:41:03.690
while the heart is beating,

00:41:03.690 --> 00:41:05.780
when a person is on life support,

00:41:05.780 --> 00:41:08.270
it\'s very difficult to understand.

00:41:08.270 --> 00:41:12.070
- If you\'re asked right
now in Japan, do you really

00:41:12.070 --> 00:41:14.670
wanna get a transplant
or do you want your child

00:41:14.670 --> 00:41:15.640
to have a transplant?

00:41:15.640 --> 00:41:17.350
Most people would say yes.

00:41:17.350 --> 00:41:19.440
But if you ask the different question,

00:41:19.440 --> 00:41:22.390
such as if your child is brain dead,

00:41:22.390 --> 00:41:24.530
would you consider organ donation?

00:41:24.530 --> 00:41:26.020
I can bet to you,

00:41:26.020 --> 00:41:30.910
the answer will be no in 80%
or even 100, close to 100%.

00:41:30.910 --> 00:41:33.307
- Japanese society has
been sort of spoiled

00:41:33.307 --> 00:41:38.213
by a negative incident in
transplantation in the 1960s.

00:41:39.350 --> 00:41:43.267
(speaking in foreign language)

00:41:48.180 --> 00:41:53.180
- I was a medical student
as he performed the first

00:41:53.270 --> 00:41:55.309
heart transplantation in japan.

00:41:55.309 --> 00:42:00.110
He, he was my mentor and
I was very impressed.

00:42:00.110 --> 00:42:03.970
But it\'s a very big
problem with that event,

00:42:03.970 --> 00:42:05.843
1968 with Dr. Wada.

00:42:06.830 --> 00:42:08.920
- After the transplant occurred,

00:42:08.920 --> 00:42:13.810
investigation found that this
was not an ethical situation.

00:42:13.810 --> 00:42:15.840
The patient was not brain dead.

00:42:15.840 --> 00:42:18.940
And the patient who
received the organ was not

00:42:18.940 --> 00:42:21.000
at the very end of his life.

00:42:21.000 --> 00:42:23.900
- There was very much
of a big media coverage,

00:42:23.900 --> 00:42:26.880
and the recipient dies at the end.

00:42:26.880 --> 00:42:28.580
After the recipient died, there was a lot

00:42:28.580 --> 00:42:32.384
of suspicion was raised from the public.

00:42:32.384 --> 00:42:36.301
(speaking in foreign language)

00:43:03.260 --> 00:43:05.143
- So that was a big setback.

00:43:06.290 --> 00:43:10.550
From that time for almost
30 years there was no

00:43:10.550 --> 00:43:13.619
official brain deaths donor.

00:43:13.619 --> 00:43:17.536
(speaking in foreign language)

00:43:50.210 --> 00:43:53.030
- That law in 1997 made it very strict,

00:43:53.030 --> 00:43:58.030
it was that you have to
have the signed donor card

00:43:58.260 --> 00:44:01.706
prior to brain death time.

00:44:01.706 --> 00:44:02.856
- In America or Europe,

00:44:03.940 --> 00:44:07.220
you can give the donors
without donation card

00:44:07.220 --> 00:44:10.620
if there\'s a relative say, okay, we want.

00:44:10.620 --> 00:44:12.770
But in Japan it was not allowed.

00:44:12.770 --> 00:44:15.506
- There is a belief in
Japan, that all things

00:44:15.506 --> 00:44:19.200
from nature are perfect the way they are.

00:44:19.200 --> 00:44:21.030
And that means that your body,

00:44:21.030 --> 00:44:24.290
when it\'s sick and when
it\'s dying is just the way

00:44:24.290 --> 00:44:25.870
that nature intended.

00:44:25.870 --> 00:44:29.020
And so taking an organ
from someone who has died

00:44:29.020 --> 00:44:32.108
and putting it into someone
who is sick is totally

00:44:32.108 --> 00:44:36.576
against nature and cannot be supported.

00:44:36.576 --> 00:44:40.493
(speaking in foreign language)

00:45:18.710 --> 00:45:22.627
(speaking in foreign language)

00:46:09.680 --> 00:46:14.680
- Every year we had our
list on 10 cases of donation

00:46:15.270 --> 00:46:17.480
from the brain dead people.

00:46:17.480 --> 00:46:21.200
So only less than 1% of
people actually sign up.

00:46:21.200 --> 00:46:22.917
We need to change the law.

00:46:24.106 --> 00:46:28.023
(speaking in foreign language)

00:47:06.331 --> 00:47:09.164
(people clapping)

00:47:12.379 --> 00:47:16.296
(speaking in foreign language)

00:47:23.160 --> 00:47:25.230
- So this was a milestone law.

00:47:25.230 --> 00:47:27.780
This was a huge change
for a country that has

00:47:27.780 --> 00:47:30.240
generally been against organ donation.

00:47:30.240 --> 00:47:34.860
- Plan A is allowing a
different definition of brain

00:47:34.860 --> 00:47:39.860
death as death for families
who choose organ donation

00:47:39.912 --> 00:47:42.820
at the time of a tragedy.

00:47:42.820 --> 00:47:46.330
- It also would legally
allow children who died

00:47:46.330 --> 00:47:48.980
and became brain dead
to donate their organs.

00:47:48.980 --> 00:47:52.910
- So now the door is open, how
are we gonna enter the room?

00:47:52.910 --> 00:47:55.800
That\'s the key issue.

00:47:55.800 --> 00:47:59.340
- So it\'s really not the law any more.

00:47:59.340 --> 00:48:04.140
It is really, truly is
Japanese people acceptance

00:48:04.140 --> 00:48:08.473
of organ donation.
(people applauding)

00:48:14.703 --> 00:48:18.620
(speaking in foreign language)

00:48:33.774 --> 00:48:36.641
- I went to the Japan Transplant
Games and it\'s literally

00:48:36.641 --> 00:48:39.830
about 1/15th of the size

00:48:39.830 --> 00:48:42.009
of the United States Transplant Games.

00:48:42.009 --> 00:48:44.393
But the power was still there.

00:48:46.560 --> 00:48:48.210
In the beginning people were a little bit

00:48:48.210 --> 00:48:50.720
shy, Japanese style.

00:48:50.720 --> 00:48:52.350
And then within a few hours,

00:48:52.350 --> 00:48:55.930
everybody opened up and
just became a very bonded,

00:48:55.930 --> 00:48:57.113
close knit community.

00:48:58.880 --> 00:49:00.970
People would ask, what
kind of organ do you have

00:49:00.970 --> 00:49:03.040
and where are you from
and things like that.

00:49:03.040 --> 00:49:06.063
And we just felt a sense
of family immediately.

00:49:08.300 --> 00:49:09.940
- Everyone at the transplant games

00:49:09.940 --> 00:49:11.830
in Japan can participate.

00:49:11.830 --> 00:49:14.150
Not only the recipients themselves,

00:49:14.150 --> 00:49:17.570
but the donor families and
the healthcare providers.

00:49:17.570 --> 00:49:20.153
(upbeat music)

00:49:23.080 --> 00:49:24.110
At the welcome party,

00:49:24.110 --> 00:49:28.340
I met a very dynamic donor
father who sadly lost

00:49:28.340 --> 00:49:33.010
his daughter about nine
years ago at the age of 27.

00:49:33.010 --> 00:49:36.423
And he loved to share his story.

00:49:37.811 --> 00:49:41.728
(speaking in foreign language)

00:50:47.241 --> 00:50:50.074
(people shouting)

00:50:52.940 --> 00:50:55.485
- It was remarkable to
swim alongside another

00:50:55.485 --> 00:50:58.560
Japanese lung recipient.

00:50:58.560 --> 00:51:00.390
I honor the Japanese more

00:51:00.390 --> 00:51:02.260
than the Americans in the many ways,

00:51:02.260 --> 00:51:07.260
because they had to wait 17
years, 20 years for a kidney.

00:51:08.990 --> 00:51:12.130
- It\'s wonderful just swim
together with the Japanese.

00:51:12.130 --> 00:51:14.350
We\'re all doing our best.

00:51:14.350 --> 00:51:17.340
- It\'s such a celebration
when we are near death

00:51:17.340 --> 00:51:20.383
and then resurrected by organ transplant.

00:51:21.830 --> 00:51:24.470
- It\'s a very small community of people,

00:51:24.470 --> 00:51:27.960
but those people are
rockets and those people are

00:51:27.960 --> 00:51:30.570
moving transplantation forward in Japan,

00:51:30.570 --> 00:51:33.383
amidst a lot of resistance.

00:51:42.232 --> 00:51:46.149
(speaking in foreign language)

00:52:00.693 --> 00:52:02.370
- [Anabel] All these people work so hard

00:52:02.370 --> 00:52:05.090
and they\'re so passionate
and they are the ones

00:52:05.090 --> 00:52:07.370
that are going out into the community,

00:52:07.370 --> 00:52:10.340
thinking strategically about how do we get

00:52:10.340 --> 00:52:11.830
this message out there?

00:52:11.830 --> 00:52:13.680
How do we get people out there to care

00:52:13.680 --> 00:52:14.923
about organ donation?

00:52:16.651 --> 00:52:20.568
(speaking in foreign language)

00:52:43.550 --> 00:52:45.910
We connected with people
with chronic illness.

00:52:45.910 --> 00:52:50.070
We connected with donor
families who were grieving,

00:52:50.070 --> 00:52:53.478
and I\'m hoping that our presence in Japan

00:52:53.478 --> 00:52:57.349
influenced other
recipients to come forward

00:52:57.349 --> 00:52:59.630
and say thank you.

00:52:59.630 --> 00:53:02.550
And to show donor families, look,

00:53:02.550 --> 00:53:04.230
you\'ve done something great,

00:53:04.230 --> 00:53:07.520
and don\'t be ashamed, it\'s okay.

00:53:07.520 --> 00:53:09.563
It\'s okay, you did something good.

00:53:13.637 --> 00:53:18.637
(people applauding)
(light music)

00:53:42.259 --> 00:53:46.176
(speaking in foreign language)

00:55:44.670 --> 00:55:49.670
I\'ve waited 37 years to meet
another CF family in Japan.

00:55:49.730 --> 00:55:51.790
To see the Japanese people coming together

00:55:51.790 --> 00:55:54.780
as a community for charity,

00:55:54.780 --> 00:55:57.540
for purposes of learning from us

00:55:57.540 --> 00:56:00.900
how to advocate for the
patients and families

00:56:00.900 --> 00:56:02.270
with cystic fibrosis.

00:56:02.270 --> 00:56:04.318
It shows they care.

00:56:04.318 --> 00:56:08.235
(speaking in foreign language)

00:56:44.630 --> 00:56:47.150
- To learn that Mr.
Adachi\'s son never went

00:56:47.150 --> 00:56:50.370
to the middle school or
high school or college.

00:56:50.370 --> 00:56:52.750
That is a personal story that shows me

00:56:52.750 --> 00:56:57.500
how Japanese CF patients live.
(soft music)

00:56:57.500 --> 00:56:59.720
- To see the malnourishment,

00:56:59.720 --> 00:57:04.720
the lack of any kind of
expertise and vision of health.

00:57:06.420 --> 00:57:07.633
It just broke my heart.

00:57:09.910 --> 00:57:14.235
- Tonight, it struck me
that these people don\'t

00:57:14.235 --> 00:57:17.410
really have the choice of lung transplant.

00:57:17.410 --> 00:57:19.430
And for a second it hurt.

00:57:19.430 --> 00:57:21.790
What right do we have to still be alive?

00:57:21.790 --> 00:57:23.630
Why are we still alive,

00:57:23.630 --> 00:57:26.830
when most of the world\'s
CF patients don\'t live.

00:57:26.830 --> 00:57:28.600
And so I was reminded,

00:57:28.600 --> 00:57:32.050
what would I be like
in my life if I had no

00:57:32.050 --> 00:57:34.320
choice of transplant?

00:57:34.320 --> 00:57:36.230
- Since I\'ve been with Isa,

00:57:36.230 --> 00:57:39.479
she has nearly passed away twice.

00:57:39.479 --> 00:57:42.580
And the first time was
the day before her 30th

00:57:42.580 --> 00:57:44.400
birthday in 2002.

00:57:44.400 --> 00:57:48.650
- I had had a massive life
threatening lung bleed.

00:57:48.650 --> 00:57:52.000
And I was put in the hospital.
I was on a ventilator.

00:57:52.000 --> 00:57:53.530
I lost a ton of blood.

00:57:53.530 --> 00:57:57.340
My lung capacity just dropped, like 15%.

00:57:57.340 --> 00:57:59.200
I became oxygen dependent.

00:57:59.200 --> 00:58:01.250
I remember bleeding in
the middle of the night

00:58:01.250 --> 00:58:04.480
and then coughing into this
bin that was filled with blood.

00:58:04.480 --> 00:58:07.570
And then somehow the nurses
and doctors left and I was

00:58:07.570 --> 00:58:10.570
in the room in the dark
and I started just crying

00:58:10.570 --> 00:58:13.060
and crying, like this is it.

00:58:13.060 --> 00:58:14.580
What a miserable existence.

00:58:14.580 --> 00:58:17.110
I can\'t breathe and I\'m
gonna bleed to death.

00:58:17.110 --> 00:58:19.060
And of course, then I start thinking,

00:58:19.060 --> 00:58:20.300
if this bleeding stops,

00:58:20.300 --> 00:58:22.170
I\'m gonna get listed for a transplant.

00:58:22.170 --> 00:58:24.890
I\'ll be eligible. And then
I\'m gonna get a transplant.

00:58:24.890 --> 00:58:27.610
And then I\'m gonna be like
Ana and be able to hike

00:58:27.610 --> 00:58:28.880
and run and swim.

00:58:28.880 --> 00:58:32.550
And I might die in the process,
but at least I\'m trying.

00:58:32.550 --> 00:58:36.410
I wanted more time, because
yes, 30 is a good lifespan,

00:58:36.410 --> 00:58:37.683
but it\'s not enough.

00:58:39.050 --> 00:58:43.080
- In early 2004, Isa went to the hospital

00:58:43.080 --> 00:58:46.730
at Stanford and she just
wasn\'t getting any better.

00:58:46.730 --> 00:58:49.230
This was something we had
never experienced before.

00:58:49.230 --> 00:58:52.540
This wasn\'t the usual, get
sick, go to the hospital,

00:58:52.540 --> 00:58:53.610
get well and leave.

00:58:53.610 --> 00:58:56.415
And so over the ensuing days,

00:58:56.415 --> 00:58:59.600
she was really unable to get up.

00:58:59.600 --> 00:59:03.190
- It was incredibly touch
and go and there was

00:59:03.190 --> 00:59:06.090
really nothing we could
do to make it better.

00:59:06.090 --> 00:59:09.580
It was just always about hanging on.

00:59:09.580 --> 00:59:12.860
- The focus at that time
was her oxygen saturation.

00:59:12.860 --> 00:59:17.100
100% is perfect, and then
obviously down from there,

00:59:17.100 --> 00:59:18.530
and that was sort of the measure,

00:59:18.530 --> 00:59:20.260
because if her lungs were
really, really damaged,

00:59:20.260 --> 00:59:22.460
then even if she\'s able to breathe in,

00:59:22.460 --> 00:59:25.207
if she\'s not absorbing
it, it doesn\'t matter.

00:59:25.207 --> 00:59:27.110
And I remember that there was one time

00:59:27.110 --> 00:59:29.290
where the saturation levels were very bad.

00:59:29.290 --> 00:59:32.500
She was so out of it and sort of childlike

00:59:32.500 --> 00:59:33.480
in a certain way.

00:59:33.480 --> 00:59:35.840
And so that respiratory
therapist and I told her,

00:59:35.840 --> 00:59:36.673
oh, it\'s good.

00:59:36.673 --> 00:59:37.670
We didn\'t tell her what the numbers.

00:59:37.670 --> 00:59:38.847
We said, oh, it\'s, really, oh yeah,

00:59:38.847 --> 00:59:41.610
you\'re doing great, you\'re doing great.

00:59:41.610 --> 00:59:46.610
And it sort of was that environment
where you knew... (sobs)

00:59:51.188 --> 00:59:55.260
You knew that it was,
that she was gonna die.

00:59:55.260 --> 00:59:59.340
In order to feel as
good as she could feel,

00:59:59.340 --> 01:00:02.063
you wanted to tell her
that it would be fine.

01:00:07.790 --> 01:00:10.240
I mean, she had this sort
of tone of voice that was

01:00:10.240 --> 01:00:13.050
just as ethereal, it was
her, but it wasn\'t her,

01:00:13.050 --> 01:00:15.383
saying that there would be a miracle.

01:00:17.850 --> 01:00:20.040
That day, people started to arrive.

01:00:20.040 --> 01:00:21.350
My parents started to arrive.

01:00:21.350 --> 01:00:24.030
Her parents, friends,
family in the waiting room,

01:00:24.030 --> 01:00:26.860
and we dubbed it camp Isa.

01:00:26.860 --> 01:00:29.670
- They\'d hung these beautiful prayer flags

01:00:29.670 --> 01:00:33.690
that you associate with Mount
Everest climbers all over.

01:00:33.690 --> 01:00:36.800
And people had written these
incredibly personal notes

01:00:38.270 --> 01:00:42.983
and just this incredible
love and commitment to her.

01:00:45.880 --> 01:00:47.827
- Isa started to sort of run in place.

01:00:47.827 --> 01:00:49.250
She was laying down on her bed,

01:00:49.250 --> 01:00:52.540
but she was running in
place and calling out names

01:00:52.540 --> 01:00:54.400
of people who had passed away.

01:00:54.400 --> 01:00:56.780
And Ana and I were sort
of huddled in the corner,

01:00:56.780 --> 01:00:58.040
holding each other and crying,

01:00:58.040 --> 01:01:01.470
because it would seem to me
that this was going to be it.

01:01:01.470 --> 01:01:05.730
We were waiting and praying
and hoping for a transplant,

01:01:05.730 --> 01:01:08.740
which was not likely.

01:01:08.740 --> 01:01:11.890
- She was not the first
person on the list.

01:01:11.890 --> 01:01:15.680
And I was kinda told
that and my heart sank,

01:01:15.680 --> 01:01:18.180
because it seemed so incredibly close

01:01:18.180 --> 01:01:20.100
and yet it was so far.

01:01:20.100 --> 01:01:22.860
- We were preparing for a funeral,

01:01:22.860 --> 01:01:24.293
but hoping for a miracle.

01:01:25.500 --> 01:01:28.090
In the mid-afternoon of that day,

01:01:28.090 --> 01:01:30.993
I went in and I think Ana
had gone in kind of with me.

01:01:32.160 --> 01:01:34.210
And Isa started, I mean, of course,

01:01:34.210 --> 01:01:36.533
since she has CF, the stuff,

01:01:36.533 --> 01:01:39.810
the junk and mucus continues
to build up in your lungs.

01:01:39.810 --> 01:01:41.210
And so that needs to be cleared out.

01:01:41.210 --> 01:01:43.740
But if you\'re basically just laying there,

01:01:43.740 --> 01:01:45.950
then you can\'t cough it out.

01:01:45.950 --> 01:01:49.480
So they were trying to
suction her and it was

01:01:49.480 --> 01:01:51.543
something was not going well with that.

01:01:52.670 --> 01:01:57.200
And so the doctors came in
and kind of ushered us out.

01:01:57.200 --> 01:01:59.590
Ushered Ana and me out.

01:01:59.590 --> 01:02:04.590
And before we left,
Ana told Isa it\'s okay,

01:02:06.030 --> 01:02:07.853
you don\'t have to fight any more.

01:02:09.180 --> 01:02:11.880
And Ana and I got into a
big fight in the waiting

01:02:11.880 --> 01:02:12.713
room about that.

01:02:12.713 --> 01:02:17.680
Because I said no, she has
to fight. She has to. (sobs)

01:02:19.233 --> 01:02:21.993
She has to fight, we have to be together.

01:02:24.520 --> 01:02:27.070
As we\'re fighting, we see
these doctors coming down

01:02:27.070 --> 01:02:32.070
the hall, and they said,
we have lungs for Isa.

01:02:39.800 --> 01:02:42.230
- Two months before he
died, he told his mother,

01:02:42.230 --> 01:02:43.940
if anything ever happens to me,

01:02:43.940 --> 01:02:47.070
I wanna be an organ donor
because I wanna help people.

01:02:47.070 --> 01:02:50.820
And so she knew that when
he had his car accident,

01:02:50.820 --> 01:02:53.880
and when his brain death diagnosis came,

01:02:53.880 --> 01:02:55.263
they knew what he wanted.

01:02:56.470 --> 01:02:59.470
- When she actually went
to the operating room.

01:02:59.470 --> 01:03:03.110
there\'s no doubt she
was just within 12 hours

01:03:03.110 --> 01:03:04.123
or so of death.

01:03:05.320 --> 01:03:08.860
This probably more than
any case I can remember was

01:03:08.860 --> 01:03:12.750
one where we were right on
the edge of going either way.

01:03:12.750 --> 01:03:15.640
- In the morning at about seven or eight,

01:03:15.640 --> 01:03:18.780
they told us that the lungs had arrived,

01:03:18.780 --> 01:03:20.993
and they were gonna start the transplant.

01:03:21.860 --> 01:03:26.860
And I went home to sleep a few
hours, and when I got back,

01:03:27.840 --> 01:03:29.310
she had been transplanted.

01:03:29.310 --> 01:03:31.840
Now, granted, she had tons
of tubes and she looked

01:03:31.840 --> 01:03:33.550
like she had been hit by a truck.

01:03:33.550 --> 01:03:36.938
But she was pink and she
was breathing and she never

01:03:36.938 --> 01:03:40.697
would have been that way had
she not had the transplant.

01:03:42.942 --> 01:03:47.942
♪ Oh, I believe in happy endings ♪

01:03:49.346 --> 01:03:54.346
♪ And I wanna see the good in you ♪

01:03:56.034 --> 01:04:01.034
♪ And I believe the
world is worth mending ♪

01:04:01.755 --> 01:04:05.588
♪ And I think that you do too ♪

01:04:08.810 --> 01:04:10.373
- These are my favorite pictures.

01:04:11.790 --> 01:04:15.820
So at Stanford Hospital,
after lung transplant,

01:04:15.820 --> 01:04:20.010
you are invited to see your
own lungs as a way of closure,

01:04:20.010 --> 01:04:22.250
to see what happened to them and kind

01:04:22.250 --> 01:04:26.773
of understand physically
why you needed a transplant.

01:04:27.750 --> 01:04:31.240
And so ironically, the room
is called The Gross Room.

01:04:31.240 --> 01:04:33.000
And two weeks after my transplant,

01:04:33.000 --> 01:04:37.690
I was wheeled over there and
I got to see these, grotesque,

01:04:37.690 --> 01:04:41.890
brown, crumbled, sliced up,

01:04:41.890 --> 01:04:45.980
scarred lungs that were grossly oversized,

01:04:45.980 --> 01:04:48.103
because I had been breathing so hard.

01:04:49.050 --> 01:04:51.130
If I can show you the pictures,

01:04:51.130 --> 01:04:53.600
these are the pictures of my lung tissue.

01:04:53.600 --> 01:04:57.200
And the pathology report said no evidence

01:04:57.200 --> 01:04:59.380
of functional lung tissue remaining.

01:04:59.380 --> 01:05:01.880
So I really was at the end of my life,

01:05:01.880 --> 01:05:03.930
there was nothing more I could have done.

01:05:05.140 --> 01:05:09.140
I still identify as being
someone with cystic fibrosis.

01:05:09.140 --> 01:05:11.310
This disease got me to where I am.

01:05:11.310 --> 01:05:14.530
Because of CF I needed a transplant.

01:05:14.530 --> 01:05:17.960
Because of CF I still
take lots of medication.

01:05:17.960 --> 01:05:21.210
I still have to limit my
choices in life so I can

01:05:21.210 --> 01:05:23.070
be healthy in the long term.

01:05:23.070 --> 01:05:26.250
I still have this impending
cloud of doom over my head

01:05:26.250 --> 01:05:27.763
of when am I gonna die?

01:05:33.495 --> 01:05:35.995
(tense music)

01:05:41.360 --> 01:05:44.010
Since I live with cystic
fibrosis for 38 years,

01:05:44.010 --> 01:05:46.453
I feel like I\'m a professional patient.

01:05:47.510 --> 01:05:50.440
Hi, I have an appointment for my annual,

01:05:50.440 --> 01:05:51.800
Isabel Stenzel Byrnes.

01:05:51.800 --> 01:05:54.370
- Your last name please?
- Stenzel Byrnes.

01:05:54.370 --> 01:05:56.080
- [Employee] And this is for a transplant?

01:05:56.080 --> 01:05:57.519
- Yes, lung.

01:05:57.519 --> 01:05:59.769
- Just one moment.
- Thanks.

01:06:03.565 --> 01:06:04.398
- You can have a seat,

01:06:04.398 --> 01:06:05.450
and then I will call you back shortly.

01:06:05.450 --> 01:06:06.950
- Okay, thank you very much.

01:06:11.900 --> 01:06:13.320
When you\'re a patient,

01:06:13.320 --> 01:06:16.320
the most important thing
for a doctor and a nurse

01:06:16.320 --> 01:06:19.240
and a respiratory therapist
is that you trust them.

01:06:19.240 --> 01:06:23.140
- Your oxygen saturation
is at 100. You pulse is 70.

01:06:23.140 --> 01:06:23.973
Follow me.

01:06:28.620 --> 01:06:30.663
- Nice and clear. Excellent.

01:06:38.942 --> 01:06:42.275
(Isa breathing heavily)

01:06:51.140 --> 01:06:53.313
Okay, no problems with that. Great.

01:06:58.307 --> 01:07:00.974
Push down, push down, push down.

01:07:08.033 --> 01:07:09.830
- Jim, I\'m kind of nervous.

01:07:09.830 --> 01:07:12.457
I haven\'t had an EFT in five months.

01:07:12.457 --> 01:07:14.060
- We\'ll get it.

01:07:14.060 --> 01:07:15.673
And a big deep breath in.

01:07:16.855 --> 01:07:19.890
All the way out. Further,
further, further.

01:07:19.890 --> 01:07:21.293
Breath in, quick.

01:07:22.500 --> 01:07:23.350
Looks good to me.

01:07:26.040 --> 01:07:28.446
- I went to the doctor for the first time

01:07:28.446 --> 01:07:32.010
after Japan, and for some unknown reason,

01:07:32.010 --> 01:07:35.170
my lung capacity increased 7%.

01:07:35.170 --> 01:07:40.170
So it\'s now 123% of normal.
And I don\'t understand that.

01:07:40.550 --> 01:07:42.880
- When you see what happened
to the twins you realize

01:07:42.880 --> 01:07:44.880
that it\'s a phenomenal miracle.

01:07:44.880 --> 01:07:47.330
These two people who would have been dead

01:07:47.330 --> 01:07:50.196
of their underlying lung
disease have been given

01:07:50.196 --> 01:07:51.473
a new life.

01:07:52.490 --> 01:07:55.310
Transplantation is actually very abnormal

01:07:55.310 --> 01:07:58.970
or unusual solution to the
problem of organ failure.

01:07:58.970 --> 01:08:02.722
- In 2006, I was jogging and
I felt a little tight like

01:08:02.722 --> 01:08:04.957
I was having asthma.

01:08:04.957 --> 01:08:07.110
So I called my doctor and said,

01:08:07.110 --> 01:08:10.020
something doesn\'t feel
right, and can I get checked?

01:08:10.020 --> 01:08:12.890
And it turned out that
I had acute rejection.

01:08:12.890 --> 01:08:14.950
- So she got to the point
where her lung function

01:08:14.950 --> 01:08:16.630
started to decline.

01:08:16.630 --> 01:08:18.330
She got sicker and sicker.

01:08:18.330 --> 01:08:20.381
And then she looked very much like she did

01:08:20.381 --> 01:08:23.160
before her original transplant.

01:08:23.160 --> 01:08:26.380
- When Ana went into rejection,
it was really traumatic,

01:08:26.380 --> 01:08:30.830
because we realized that
this is all so temporary.

01:08:30.830 --> 01:08:33.720
- Our lungs weren\'t programmed to be taken

01:08:33.720 --> 01:08:36.760
out of one person and
put into another person.

01:08:36.760 --> 01:08:38.590
And so when you do that,

01:08:38.590 --> 01:08:43.020
the recipient will always
see those lungs as foreign.

01:08:43.020 --> 01:08:45.599
So your immune system attacks those lungs

01:08:45.599 --> 01:08:48.497
and slowly slowly attacks them over time.

01:08:48.497 --> 01:08:50.170
- It was like suffocating.

01:08:50.170 --> 01:08:53.000
It was, my body couldn\'t adjust to it.

01:08:53.000 --> 01:08:56.990
When I lost 70% of my lung
capacity in eight months,

01:08:56.990 --> 01:08:59.610
I had met Trent, who is now my fiance.

01:08:59.610 --> 01:09:02.650
He never knew that two
months into our relationship

01:09:02.650 --> 01:09:04.460
he\'d be pushing me in a wheelchair.

01:09:04.460 --> 01:09:05.630
It was that fast.

01:09:05.630 --> 01:09:09.290
- So then we made the
decision to do a re-transplant

01:09:09.290 --> 01:09:11.610
on her, and a re-double lung transplant.

01:09:11.610 --> 01:09:15.250
- On July 13th, 2007, I was called

01:09:15.250 --> 01:09:17.310
for my second transplant.

01:09:17.310 --> 01:09:20.399
Majority of people don\'t
get second transplants.

01:09:20.399 --> 01:09:23.100
You can count them on
your fingers and toes.

01:09:23.100 --> 01:09:24.060
It\'s pretty rare.

01:09:24.060 --> 01:09:26.690
- The second one was
more difficult for us.

01:09:26.690 --> 01:09:29.810
And I think it was probably
more difficult for Ana as well.

01:09:29.810 --> 01:09:33.330
Her will to live or
motivation was sky high

01:09:33.330 --> 01:09:37.350
and enabled her to be a second
lung transplant survivor,

01:09:37.350 --> 01:09:39.993
which is an elite group, that\'s for sure.

01:09:41.340 --> 01:09:45.370
- It seems unreal that Ana
got a second transplant,

01:09:45.370 --> 01:09:48.290
because she went downhill so quickly,

01:09:48.290 --> 01:09:51.670
got her transplant again
and went uphill so quickly

01:09:51.670 --> 01:09:53.870
and went on with her normal life.

01:09:53.870 --> 01:09:58.600
We learned that there will always be fear

01:09:58.600 --> 01:10:00.530
about what comes next.

01:10:00.530 --> 01:10:02.940
But when you\'re aware of that fear,

01:10:02.940 --> 01:10:05.933
you realize that you cannot
let it immobilize you.

01:10:07.932 --> 01:10:10.349
(soft music)

01:10:14.107 --> 01:10:17.024
- Hi.
- Hi, it\'s so good to see you.

01:10:22.950 --> 01:10:24.910
- I think it\'s always meaningful to come

01:10:24.910 --> 01:10:26.700
to James\'s hometown.

01:10:26.700 --> 01:10:30.190
When I\'m here, I feel his presence.

01:10:30.190 --> 01:10:32.700
Obviously I don\'t have his lungs any more.

01:10:32.700 --> 01:10:34.700
So there\'s some mixed emotion.

01:10:34.700 --> 01:10:36.690
There are some, truthfully,

01:10:36.690 --> 01:10:40.760
some shame about what happened
that I lost his lungs,

01:10:40.760 --> 01:10:44.200
but they will always hold a
special place in my heart.

01:10:44.200 --> 01:10:45.440
- I know Ana feels guilt,

01:10:45.440 --> 01:10:48.110
because I\'ve seen it in
her emails, I know that.

01:10:48.110 --> 01:10:49.193
And I\'ve told her over and over and over,

01:10:49.193 --> 01:10:51.220
she shouldn\'t feel that way,

01:10:51.220 --> 01:10:54.700
but it\'s something she has internalized,

01:10:54.700 --> 01:10:59.700
and I guess only she can work that out.

01:10:59.950 --> 01:11:03.980
- You gave me the best
six years of my life,

01:11:03.980 --> 01:11:08.450
and I will always remember
that, even on my death bed,

01:11:08.450 --> 01:11:12.050
whatever happens in the
future that I lived so hard

01:11:12.050 --> 01:11:17.040
for James and I climbed
mountains and I breathed

01:11:17.040 --> 01:11:20.980
the top of a mountain with
his lungs and I felt it go

01:11:20.980 --> 01:11:25.500
to my feet when I took a deep
breath and I was nonstop.

01:11:25.500 --> 01:11:28.069
I think I took two naps in six years.

01:11:28.069 --> 01:11:29.830
(people laughing)

01:11:29.830 --> 01:11:31.536
- I mean, look at what she\'s accomplished

01:11:31.536 --> 01:11:34.370
with James\'s lungs when she had them.

01:11:34.370 --> 01:11:37.570
How could we feel negative
over the fact that it was

01:11:37.570 --> 01:11:41.870
a biological thing, nothing
that she had any control over,

01:11:41.870 --> 01:11:45.483
just like she had no control
over the cystic fibrosis.

01:11:46.350 --> 01:11:49.930
We donated his organs
with no strings attached.

01:11:49.930 --> 01:11:51.970
There\'s more out there that we know.

01:11:55.164 --> 01:12:00.164
And James was her bridge
to get to where she is now.

01:12:06.580 --> 01:12:08.130
That\'s what God needed, right,

01:12:08.130 --> 01:12:10.543
it was for her to have that bridge.

01:12:15.960 --> 01:12:20.960
- It\'s not that hard to do
what we did and that it makes

01:12:21.150 --> 01:12:22.590
a huge difference.

01:12:22.590 --> 01:12:27.590
- They used his heart, his
lungs, both his kidneys,

01:12:28.370 --> 01:12:33.213
his liver, his pancreas and the eyes,

01:12:34.350 --> 01:12:36.890
the cornea of the eyes.

01:12:36.890 --> 01:12:37.827
So, a lot.

01:12:40.643 --> 01:12:42.570
- I know!
- I think it\'s a little bit,

01:12:42.570 --> 01:12:45.300
she, somehow she had learned the name...

01:12:45.300 --> 01:12:47.430
They had mentioned that
they are in contact

01:12:47.430 --> 01:12:49.740
with Doni, the pancreas recipient

01:12:49.740 --> 01:12:52.910
of James, who happened
to live in Maryland.

01:12:52.910 --> 01:12:56.720
Within three days of reaching out to her,

01:12:56.720 --> 01:12:58.856
we had a plan to meet.

01:12:58.856 --> 01:13:00.806
I think I\'m gonna ditch the sunglasses.

01:13:01.770 --> 01:13:03.270
I like to see what I\'m seeing.

01:13:04.460 --> 01:13:09.370
I was actually not nervous at
all. I felt very open to it.

01:13:09.370 --> 01:13:12.090
I didn\'t have any expectations.

01:13:12.090 --> 01:13:16.140
I felt very positive that
this would be something good.

01:13:16.140 --> 01:13:18.740
- I think Ana was excited
to meet Doni Bell.

01:13:18.740 --> 01:13:22.290
I think it was such a
great connection to just be

01:13:22.290 --> 01:13:26.277
reunited with another
part of James\'s legacy.

01:13:26.277 --> 01:13:29.698
- Hey, are you Doni?
- Hey, how are you?

01:13:29.698 --> 01:13:32.682
Hi, so nice to meet you.

01:13:32.682 --> 01:13:34.580
- There was just a lot of acceptance.

01:13:34.580 --> 01:13:37.670
I was in a mood of just
going with the flow

01:13:37.670 --> 01:13:40.330
and learning as much
as I could about Doni.

01:13:40.330 --> 01:13:42.240
- I think, I\'m gonna swim. I am.

01:13:42.240 --> 01:13:44.760
I just got my medical waiver cleared.

01:13:44.760 --> 01:13:46.770
- It means so much to
the Dorns to have both

01:13:46.770 --> 01:13:49.750
of us correspond with
them and know that a part

01:13:49.750 --> 01:13:51.900
of James has lived on.

01:13:51.900 --> 01:13:54.140
- I had no doubt that meeting you would be

01:13:54.140 --> 01:13:56.820
this very comfortable, easy connection.

01:13:56.820 --> 01:13:59.511
And then of course, having
James\'s spirit in us,

01:13:59.511 --> 01:14:04.010
just feeling like, wow,
this is like another sister,

01:14:04.010 --> 01:14:06.640
and my name\'s Anabel, this is Isabel,

01:14:06.640 --> 01:14:09.473
and here\'s Doniebel. (laughs)

01:14:11.430 --> 01:14:13.710
Isa and I invited Doni to go with us

01:14:13.710 --> 01:14:16.993
to the National Donor Memorial
in Richmond, Virginia.

01:14:16.993 --> 01:14:19.493
(light music)

01:14:37.610 --> 01:14:39.110
In a way it was like a pilgrimage

01:14:39.110 --> 01:14:41.810
to a Mecca, because this is the place

01:14:41.810 --> 01:14:46.330
where our country pays
tribute to all the people

01:14:46.330 --> 01:14:48.960
who have said yes to organ donation.

01:14:48.960 --> 01:14:51.670
And it\'s a place to
memorialize and remember,

01:14:51.670 --> 01:14:53.973
and honor their gift of life.

01:14:56.230 --> 01:14:58.550
To be at the National Donor Memorial

01:14:58.550 --> 01:15:02.570
with Doni was unbelievable.

01:15:02.570 --> 01:15:05.750
Not a day goes by that I
don\'t think of my donors.

01:15:05.750 --> 01:15:08.820
I wish I had a piece
of paper with a pencil

01:15:08.820 --> 01:15:11.963
to kinda sketch it.
- Yeah.

01:15:13.230 --> 01:15:16.470
- Doni and Ana are
friends because of James.

01:15:16.470 --> 01:15:20.800
And so here is this person
who no longer exists,

01:15:20.800 --> 01:15:22.960
he died 10 years ago,

01:15:22.960 --> 01:15:27.070
but because of his gift
and because of his story,

01:15:27.070 --> 01:15:29.833
Ana and Doni now have a story together.

01:15:33.640 --> 01:15:37.750
In a way, James represents
both of my donors,

01:15:37.750 --> 01:15:39.230
because my second donor,

01:15:39.230 --> 01:15:43.070
I have no idea about this person at all.

01:15:43.070 --> 01:15:45.220
In essence, both of them are similar.

01:15:45.220 --> 01:15:46.623
They both saved my life.

01:15:47.678 --> 01:15:50.095
(soft music)

01:15:54.410 --> 01:15:57.760
- The day that I got the phone
call that I was on the list,

01:15:57.760 --> 01:16:00.830
I looked at my cell
phone, it said withheld,

01:16:00.830 --> 01:16:03.300
and withheld means that
it\'s from Stanford.

01:16:03.300 --> 01:16:06.720
And I was like, uh oh, this
is it. So I answered it.

01:16:06.720 --> 01:16:09.420
And the usual woman that\'s
supposed to call you

01:16:09.420 --> 01:16:10.480
wasn\'t in that day.

01:16:10.480 --> 01:16:12.840
And so it was a different nurse.

01:16:12.840 --> 01:16:16.259
And she\'s like, is this
Anna? And I was like, yes.

01:16:16.259 --> 01:16:19.180
And she\'s like, well, it came through.

01:16:19.180 --> 01:16:21.790
And the only thing I said,
I was like, holy shit.

01:16:21.790 --> 01:16:23.110
And I was like, oh my God, I\'m so sorry.

01:16:23.110 --> 01:16:25.467
I\'m so sorry. (laughs)

01:16:25.467 --> 01:16:27.967
(Anna coughs)

01:16:29.360 --> 01:16:34.360
My health in the last year has
changed pretty drastically.

01:16:36.230 --> 01:16:40.070
My cough has gotten a
lot deeper with the more

01:16:40.070 --> 01:16:41.680
intense lung disease.

01:16:41.680 --> 01:16:44.270
It\'s just, I cough and cough and cough

01:16:44.270 --> 01:16:45.620
until I can\'t breathe.

01:16:45.620 --> 01:16:49.000
And then you turn up the
oxygen, take a deep breath,

01:16:49.000 --> 01:16:52.913
and it\'s just, it\'s so exhausting.

01:16:54.030 --> 01:16:56.284
Talk amongst yourselves.

01:16:56.284 --> 01:16:57.210
- Okay.

01:16:57.210 --> 01:17:02.190
- I had to switch my means of
therapy from using the vest,

01:17:02.190 --> 01:17:06.380
which I did independently,
to percussion therapy,

01:17:06.380 --> 01:17:09.178
which is where I\'m dependent
on another person to beat

01:17:09.178 --> 01:17:12.122
on my back to loosen up
the mucus so that I can

01:17:12.122 --> 01:17:13.273
cough it out.

01:17:15.080 --> 01:17:17.070
- We have to really beat hard.

01:17:17.070 --> 01:17:19.520
It\'s like beating on a ketchup bottle.

01:17:19.520 --> 01:17:22.410
And so we\'re back again where
we were in the beginning.

01:17:22.410 --> 01:17:26.920
- My life exists as CF, that\'s
all it is at this point.

01:17:26.920 --> 01:17:31.920
Is just treatments and medicines
and eating and sleeping.

01:17:32.660 --> 01:17:34.280
That\'s pretty much it.

01:17:34.280 --> 01:17:36.530
So that\'s how you know
you need a transplant.

01:17:37.570 --> 01:17:39.773
- A year ago today,

01:17:40.791 --> 01:17:44.210
I don\'t think I would
have thought that we are

01:17:44.210 --> 01:17:47.833
at the place of transplant
where we are today.

01:17:53.120 --> 01:17:58.030
I knew the transplant was
gonna be in the future

01:17:58.030 --> 01:17:59.813
and I knew it was our great hope,

01:18:00.660 --> 01:18:04.260
but I didn\'t know that it
was gonna come so soon.

01:18:04.260 --> 01:18:07.160
- So what it means to be on the list,

01:18:07.160 --> 01:18:10.610
how they figure out who gets a transplant

01:18:10.610 --> 01:18:14.110
is you\'re divided up not
only by your blood type,

01:18:14.110 --> 01:18:16.850
because the way that they
match lungs is blood type

01:18:16.850 --> 01:18:18.160
as well as size.

01:18:18.160 --> 01:18:19.360
And then in terms of that,

01:18:19.360 --> 01:18:23.660
then they also go according
to your lung allocation score.

01:18:23.660 --> 01:18:27.660
And your lung allocation score is anywhere

01:18:27.660 --> 01:18:29.540
from zero to 100.

01:18:29.540 --> 01:18:31.390
But there\'s a certain
window, which is called

01:18:31.390 --> 01:18:34.570
the transplant window,
which is where you are sick

01:18:34.570 --> 01:18:36.330
enough to need a transplant,

01:18:36.330 --> 01:18:39.040
but healthy enough to
survive the transplant.

01:18:39.040 --> 01:18:42.170
So you\'re a good bet. That\'s
kind of what they want.

01:18:42.170 --> 01:18:46.043
So with my score of 37.7 blah-blah-blah,

01:18:46.930 --> 01:18:49.010
that\'s right in that window.

01:18:49.010 --> 01:18:51.850
It\'s right in a sweet
spot where I\'m just sick

01:18:51.850 --> 01:18:53.280
enough where I need it,

01:18:53.280 --> 01:18:55.500
but I\'m definitely not
too sick where I\'m not

01:18:55.500 --> 01:18:59.380
gonna survive it, statistically speaking.

01:18:59.380 --> 01:19:02.863
So that\'s where I am on the
list, sitting and waiting.

01:19:04.890 --> 01:19:09.800
- So the idea that we\'re
gonna go into another chapter

01:19:09.800 --> 01:19:12.160
and there\'s gonna be no more CF lungs,

01:19:12.160 --> 01:19:14.310
because that is the center of CF.

01:19:14.310 --> 01:19:17.970
That has to do with all the treatments

01:19:17.970 --> 01:19:22.970
and the coughing and that\'s
not gonna be there any more.

01:19:23.720 --> 01:19:27.353
That\'s a huge, huge change.

01:19:31.120 --> 01:19:32.467
- Hello!
- Hi!

01:19:36.920 --> 01:19:38.560
- Now that I\'m listed,

01:19:38.560 --> 01:19:41.700
the whole support network
has to be put in place,

01:19:41.700 --> 01:19:44.320
including my family and
surrounding friends.

01:19:44.320 --> 01:19:47.110
And Ana and Isa have
volunteered that they will be

01:19:47.110 --> 01:19:49.440
there in that network.

01:19:49.440 --> 01:19:53.637
I was not in an acceptance
of my illness last year.

01:19:53.637 --> 01:19:57.910
I was really fighting it and
really embarrassed by it.

01:19:57.910 --> 01:19:59.430
And, like, I failed.

01:19:59.430 --> 01:20:01.520
And it\'s actually more hopeful now

01:20:01.520 --> 01:20:02.470
than when I was

01:20:02.470 --> 01:20:03.750
a little bit healthier.
- Right.

01:20:03.750 --> 01:20:05.310
- \'Cause there\'s actually a chance.

01:20:05.310 --> 01:20:09.430
- Getting a transplant
is all about redemption.

01:20:09.430 --> 01:20:13.480
So you\'re working your ass off
right now, and you\'re tired,

01:20:13.480 --> 01:20:15.467
but you\'ve gotta do your
treatments and you\'ve gotta

01:20:15.467 --> 01:20:17.620
eat and you\'ve gotta go
to the doctor and take

01:20:17.620 --> 01:20:18.453
care of yourself.

01:20:18.453 --> 01:20:23.315
Work so hard, both Robin
and Anna, but my prayer

01:20:23.315 --> 01:20:28.315
and hope is that you will
be redeemed by this life,

01:20:28.750 --> 01:20:30.890
where you get to complain
about being tired

01:20:30.890 --> 01:20:34.640
because you\'ve just been
traveling too much. (laughs)

01:20:34.640 --> 01:20:37.140
- We\'ve paid our dues by
dealing with end-stage

01:20:37.140 --> 01:20:41.180
CF, where air is so desired.

01:20:41.180 --> 01:20:43.320
And when you work through that,

01:20:43.320 --> 01:20:45.320
and then you get rewarded by transplant,

01:20:45.320 --> 01:20:48.670
you can always look back
and feel like you climbed

01:20:48.670 --> 01:20:51.308
that mountain and that you paid your dues

01:20:51.308 --> 01:20:52.940
and nobody can ever-

01:20:52.940 --> 01:20:54.620
- You deserve every bit of goodness

01:20:54.620 --> 01:20:56.400
that\'s coming to you.
- Exactly.

01:20:56.400 --> 01:20:58.160
- Yeah, and you, and you do.

01:20:58.160 --> 01:20:58.993
- When you\'re listed,

01:20:58.993 --> 01:21:01.043
you kind of feel like
you\'re straddling offense

01:21:01.043 --> 01:21:03.750
because you\'re hoping
to go to the other side

01:21:03.750 --> 01:21:05.750
of transplant and not have this any more,

01:21:05.750 --> 01:21:08.480
but you\'re still fighting
the day-to-day struggle,

01:21:08.480 --> 01:21:11.295
\'cause you can\'t let up until it\'s time.

01:21:11.295 --> 01:21:13.878
(upbeat music)

01:21:32.310 --> 01:21:33.430
- Being at the Rose Parade

01:21:33.430 --> 01:21:35.870
for the Donate Life Float, it always

01:21:35.870 --> 01:21:40.280
reminds me of what an
incredible fortunate society

01:21:40.280 --> 01:21:44.600
we have to celebrate
the gift of life on such

01:21:44.600 --> 01:21:47.400
a national and international level.

01:21:47.400 --> 01:21:50.780
- There are so many
different people decorating

01:21:50.780 --> 01:21:55.223
who were donor families,
recipients, volunteers.

01:21:56.530 --> 01:21:59.190
There was a tower of all the floragraphs,

01:21:59.190 --> 01:22:04.040
all the faces of people
who died and gave life

01:22:04.040 --> 01:22:05.453
to recipients like us.

01:22:06.390 --> 01:22:07.590
For the last three years,

01:22:07.590 --> 01:22:10.530
I have dedicated a rose
to my donor and also

01:22:10.530 --> 01:22:15.530
to Ana\'s donor, just as an act
of celebrating this moment.

01:22:16.801 --> 01:22:19.384
(upbeat music)

01:22:24.505 --> 01:22:27.255
(crowd cheering)

01:22:31.070 --> 01:22:34.120
When I saw all of the riders on the float,

01:22:34.120 --> 01:22:37.360
it tells me that this is
a gift of life that many,

01:22:37.360 --> 01:22:38.900
many people are experiencing.

01:22:38.900 --> 01:22:43.470
And it is so deeply emotional
and so deeply shared

01:22:43.470 --> 01:22:47.970
as a yin and yang
experience of grief and hope

01:22:47.970 --> 01:22:50.273
and love and sadness.

01:22:52.280 --> 01:22:56.110
- Today, it seems so celebratory.

01:22:56.110 --> 01:22:59.680
Even the donor families are celebrating

01:22:59.680 --> 01:23:03.200
that their loved ones are
remembered and 40 million

01:23:03.200 --> 01:23:05.850
people will watch them on TV.

01:23:05.850 --> 01:23:09.000
Their loved ones physically
died, but through donation,

01:23:09.000 --> 01:23:12.233
they continue to live in the
hearts and minds of all of us.

01:23:15.554 --> 01:23:18.973
♪ I feel it comin\' ♪

01:23:18.973 --> 01:23:21.235
♪ I feel it comin\' ♪

01:23:21.235 --> 01:23:24.152
♪ I feel it comin\' ♪

01:23:30.130 --> 01:23:33.680
- Xavier would be 24 years old right now.

01:23:33.680 --> 01:23:36.010
That\'s the prime of his life.

01:23:36.010 --> 01:23:40.080
He is in the utmost health in his cells.

01:23:40.080 --> 01:23:42.320
He is still growing with me.

01:23:42.320 --> 01:23:43.460
Every joy I have,

01:23:43.460 --> 01:23:46.683
every sorrow I have he\'s
part of that journey.

01:23:49.750 --> 01:23:52.180
- Knowing that it\'s gonna be
10 years since the passing

01:23:52.180 --> 01:23:55.420
of James Dorn, I think
about where would he be now?

01:23:55.420 --> 01:23:58.040
He would be 39 years old.

01:23:58.040 --> 01:23:59.990
And so there\'s a lot of
mixed emotions as I go

01:23:59.990 --> 01:24:02.430
into this new decade of thinking, wow,

01:24:02.430 --> 01:24:04.760
I wouldn\'t be here without
James and I wouldn\'t be

01:24:04.760 --> 01:24:06.600
here without my second donor.

01:24:06.600 --> 01:24:10.130
I\'ve gained 10 years of the best,

01:24:10.130 --> 01:24:13.003
most fabulous party of my life.

01:24:14.826 --> 01:24:16.243
Can you help her?

01:24:20.340 --> 01:24:24.510
I always define happiness as
not wanting a moment to end,

01:24:24.510 --> 01:24:27.255
and definitely the day of
my wedding was a moment

01:24:27.255 --> 01:24:30.923
of incredible happiness
where I just wish the time

01:24:30.923 --> 01:24:33.060
could just stand still.

01:24:33.060 --> 01:24:36.300
It was an incredible reunion
of many of my friends

01:24:36.300 --> 01:24:38.770
and family from all walks of my life.

01:24:38.770 --> 01:24:40.470
I felt fabulous.

01:24:40.470 --> 01:24:43.610
And then just to walk down
that aisle and see Trent there,

01:24:43.610 --> 01:24:46.050
it was just so beautiful.

01:24:46.050 --> 01:24:49.010
- We come here on this
splendid day to witness

01:24:49.010 --> 01:24:52.930
the marriage of Anabel Mariko Stenzel

01:24:52.930 --> 01:24:55.030
and Trent Wallace Junior...

01:24:55.030 --> 01:24:58.440
- Truthfully, it is an
absolute privilege and it would

01:24:58.440 --> 01:25:02.100
not have been possible
without my donor families.

01:25:02.100 --> 01:25:04.950
- Ana\'s wedding was absolutely perfect.

01:25:04.950 --> 01:25:09.071
And for me, I felt so happy
that finally she would have

01:25:09.071 --> 01:25:11.890
a chance to have what I\'ve had.

01:25:11.890 --> 01:25:15.653
She\'s been waiting to
have a partner in life.

01:25:17.560 --> 01:25:20.726
Everyone at the wedding really understood

01:25:20.726 --> 01:25:24.573
what a milestone it was
because Ana had survived.

01:25:27.720 --> 01:25:31.790
- I told myself at 28, when
I got my first transplant,

01:25:31.790 --> 01:25:34.470
that I would love to live half my years

01:25:34.470 --> 01:25:37.410
with CF and half my years with transplant.

01:25:37.410 --> 01:25:41.330
My wedding was the most
amazing gift of a 10 year

01:25:41.330 --> 01:25:44.110
mark that I could ever, ever imagine.

01:25:44.110 --> 01:25:46.070
18 more to go.

01:25:46.070 --> 01:25:48.822
I have my hopes up high
and my prayers in line

01:25:48.822 --> 01:25:51.030
that that will be possible.

01:25:51.030 --> 01:25:54.330
- The wedding wasn\'t
just about Ana and Trent.

01:25:54.330 --> 01:25:58.813
It\'s about spreading this
yearning for more life in all

01:25:58.813 --> 01:26:00.940
of these families.

01:26:00.940 --> 01:26:04.580
Anna Modlin was very sick
in the hospital a few

01:26:04.580 --> 01:26:07.710
weeks earlier, and really had kind of come

01:26:07.710 --> 01:26:09.940
to the sickest place of her life.

01:26:09.940 --> 01:26:11.380
I couldn\'t believe it.

01:26:11.380 --> 01:26:13.980
This is my friend who
was so vibrant and alive

01:26:13.980 --> 01:26:15.755
just a few months earlier.

01:26:15.755 --> 01:26:18.830
- For her to make the
effort to come to my wedding

01:26:18.830 --> 01:26:20.752
and to put the oxygen on.

01:26:20.752 --> 01:26:23.977
I certainly have immense
love for her and hope

01:26:23.977 --> 01:26:27.990
that she will pull through
enough to get a transplant.

01:26:27.990 --> 01:26:30.514
And it scares me to think
that she might not survive

01:26:30.514 --> 01:26:32.203
if an organ is not found.

01:26:47.800 --> 01:26:52.380
Organ donation is an extremely
complicated personal topic,

01:26:52.380 --> 01:26:54.830
but I do believe firmly,

01:26:54.830 --> 01:26:58.530
both in Japan and
America, that storytelling

01:26:58.530 --> 01:27:00.500
is how you change people,

01:27:00.500 --> 01:27:03.610
make them start thinking
about what this issue

01:27:03.610 --> 01:27:04.773
is really about.

01:27:07.530 --> 01:27:10.440
- Stories can make people truly understand

01:27:10.440 --> 01:27:14.880
what is going on in this small
little segment of society,

01:27:14.880 --> 01:27:17.037
so that there can be change.

01:27:26.587 --> 01:27:31.000
- Change takes stories
and change takes effort.

01:27:31.000 --> 01:27:34.940
Before I was very apprehensive
of being so public,

01:27:34.940 --> 01:27:39.940
but now I see it as an opportunity
to touch people\'s lives.

01:27:51.470 --> 01:27:54.223
♪ This world ♪

01:27:54.223 --> 01:27:57.760
♪ See, it\'s wonderful ♪

01:27:57.760 --> 01:28:02.760
♪ It\'s beautiful when you\'re around ♪

01:28:03.546 --> 01:28:07.402
♪ When you\'re around ♪

01:28:07.402 --> 01:28:10.937
♪ See, it\'s magical ♪

01:28:10.937 --> 01:28:15.937
♪ When all that\'s lost is then found ♪

01:28:16.685 --> 01:28:20.311
♪ Oh, then found ♪

01:28:20.311 --> 01:28:25.311
♪ Oh, the world ♪

01:28:26.338 --> 01:28:30.798
♪ Oh, the world ♪

01:28:30.798 --> 01:28:35.798
♪ Oh ♪

01:28:37.444 --> 01:28:42.444
♪ Oh ♪

01:28:43.815 --> 01:28:48.815
♪ Oh ♪

01:28:50.407 --> 01:28:52.157
♪ Oh ♪

01:29:21.320 --> 01:29:26.320
♪ That\'s it, I\'m all better now ♪

01:29:27.548 --> 01:29:32.016
♪ Spit up the last of what made me hurt ♪

01:29:32.016 --> 01:29:37.016
♪ And I feel light as a feather now ♪

01:29:39.617 --> 01:29:44.356
♪ At last I finally know my worth ♪

01:29:44.356 --> 01:29:49.356
♪ I thought I\'d never learn to be alone ♪

01:29:51.876 --> 01:29:56.876
♪ Open all my windows wide ♪

01:29:58.335 --> 01:30:03.335
♪ Turn the ringer off the phone ♪

01:30:03.646 --> 01:30:07.895
♪ Light my orange candles at night ♪

01:30:07.895 --> 01:30:11.366
♪ And I\'m wishing on a new moon ♪

01:30:11.366 --> 01:30:14.598
♪ Something better is coming ♪

01:30:14.598 --> 01:30:19.598
♪ It\'s coming soon ♪

01:30:20.092 --> 01:30:23.826
♪ I feel it comin\' ♪

01:30:23.826 --> 01:30:26.809
♪ I feel it comin\' ♪

01:30:26.809 --> 01:30:31.809
♪ I feel it comin\' ♪

01:30:34.530 --> 01:30:39.530
♪ I close my eyes up on
the high, high dive ♪

01:30:40.632 --> 01:30:45.632
♪ Stretch my arms up to the sky ♪

01:30:46.871 --> 01:30:51.651
♪ Endless water lies deep below ♪

01:30:51.651 --> 01:30:56.473
♪ But somewhere in the
air I\'ll learn to fly ♪

01:30:56.473 --> 01:30:59.908
♪ And I\'m wishing on a new moon ♪

01:30:59.908 --> 01:31:03.340
♪ Something better is coming ♪

01:31:03.340 --> 01:31:08.340
♪ It\'s coming soon ♪

01:31:08.569 --> 01:31:12.491
♪ And I feel it comin\' ♪

01:31:12.491 --> 01:31:15.230
♪ I feel it comin\' ♪

01:31:15.230 --> 01:31:20.230
♪ I feel it comin\' ♪

01:31:20.991 --> 01:31:24.457
♪ I feel it comin\' now ♪

01:31:24.457 --> 01:31:29.457
♪ I feel it comin\' now ♪

01:31:33.892 --> 01:31:38.892
♪ This is me inside a violent world ♪

01:31:41.341 --> 01:31:46.341
♪ Where I used to numb the violent hurt ♪

01:31:49.615 --> 01:31:54.615
♪ We will live, and we will die ♪

01:31:57.367 --> 01:32:00.898
♪ And I will love you ♪

01:32:00.898 --> 01:32:04.915
♪ Until the end of this life ♪

01:32:04.915 --> 01:32:09.340
♪ Then in the afterlife ♪

01:32:09.340 --> 01:32:13.236
♪ The afterlife ♪

01:32:13.236 --> 01:32:17.253
♪ The afterlife ♪

01:32:17.253 --> 01:32:19.920
♪ The afterlife ♪

01:33:11.754 --> 01:33:16.754
♪ This is me inside a hopeful world ♪

01:33:19.733 --> 01:33:24.733
♪ Where I used to numb the helpless hurt ♪

01:33:27.766 --> 01:33:32.766
♪ We will live, and we will die ♪

01:33:35.274 --> 01:33:40.274
♪ And will love you until
the end of this life ♪

01:33:43.027 --> 01:33:47.369
♪ Then in the afterlife ♪

01:33:47.369 --> 01:33:51.262
♪ The afterlife ♪

01:33:51.262 --> 01:33:55.281
♪ The afterlife ♪

01:33:55.281 --> 01:33:57.948
♪ The afterlife ♪