Stumped
- Description
- Reviews
- Citation
- Cataloging
- Transcript
Will Lautzenheiser was chasing the loves of his life. A year into a promising relationship, he landed a dream job teaching film. Suddenly it was all interrupted by a persistent pain that, unbeknownst to him, was being caused by a deadly infection. When Will’s organs started shutting down, and his limbs began dying, doctors had to amputate both his arms and legs to save his life. Will’s world, as he knew it, would never be the same. As Will tries to accept his new life, news breaks about an experimental surgery that offers him new hope to reclaim his independence.
Putting his life and health on the line, Will risks it all to become the third patient to undergo a double-arm transplantation at the Brigham and Women’s Hospital in Boston. The documentary STUMPED chronicles how he copes with the loss of his filmmaking career by pursuing stand-up comedy; navigates an evolving relationship with his partner Angel, who becomes Will’s lover and caregiver; and gradually transforms, physically and spiritually, with newly transplanted arms. Filmed over four years, STUMPED explores themes of adversity, courage, as well as the life-changing potential of pioneering medicine.
Educational Media Resources Online (EMRO) | Reviewed by Linda Frederiksen, Washington State University
"By finding humor in tragedy and through the open discussion of amputation, organ donors, and transplants, Will’s story raises awareness of the multitude of issues and emotions surrounding disabilities. This well-crafted film is recommended for disabilities studies programs as well as general audiences."
Dell Medical School | Dr. Richard Freeman, Transplant Surgeon and Vice Dean of Clinical Affairs
"STUMPED is an award-winning documentary that tells the incredible story of quadruple amputee, Will Lautzenheiser, whose humility and courage will inspire us all. This deeply human story is made even more compelling and amplified because his journey includes a double-arm transplant. STUMPED is a superbly crafted film that highlights a myriad of profound patient-centered, and system-wide issues that to one level or another touch anyone experiencing the health system. Among many themes, Will’s story illuminates the altruism and ethics of transplantation, the compassion and humanity of donor families, and the questions that arise around pursuing new therapies at the frontiers of modern medicine, all of which have enlightened much of my personal growth throughout my career.
Learners in any field, even those from outside health professions, will glean valuable lessons from this film that, because of Will’s humanity, will stick with the audience and, ultimately I believe, make us all better humans. The interprofessional functioning of the teams that help Will through his care, the elements at home that have as much or more to do with his progress towards better health than the care teams, and especially, the person-centered approach that the film’s producers have taken, provide deeply impactful, broad learning opportunities."
New England Donor Services | Helen Nelson, Senior Vice President, Organ Donation Services
"Both funny and emotional, STUMPED is an authentic testimonial to the life changing gift of donation. The film gets real, telling the honest story of Will’s struggles, support systems and victories through the process of a remarkable double arm transplant surgery. I would highly recommend this beautiful film about the miracle of modern medicine and the strength of the human spirit that all students and professionals would benefit from viewing."
The Boston Globe | Peter Keough
"Robin Berghaus’s inspiring, heartbreaking, and sometimes hilarious STUMPED...takes up the traumatic tale of filmmaker and teacher William Lautzenheiser, who was just beginning his career when all his limbs were amputated to save his life from a rare infection. Lautzenheiser’s response? Stand-up (yes, he makes a joke about that) comedy. … After he agrees to undergo revolutionary double-arm transplantation surgery at Brigham and Women's Hospital, the doubts and ordeal put his sense of humor to the test."
Citation
Main credits
Lautzenheiser, Will (on-screen participant)
González, Angel (on-screen participant)
Berghaus, Robin (film director)
Berghaus, Robin (film producer)
Berghaus, Robin (editor of moving image work)
Davies, Bryan W. (film producer)
McCarthy, Kevin (film producer)
Kauffmann, Sam (film producer)
Other credits
Editors, Robin Berghaus and Renny McCauley; original music, Curtis Heath.
Distributor subjects
Health and Medicine; Physical + Occupational Therapy; Social Work; Disability Studies; LGBT StudiesKeywords
WEBVTT
00:00:04.713 --> 00:00:08.466
- You want to take
a deep breath in.
00:00:08.467 --> 00:00:10.177
Okay, you can breathe.
00:00:12.095 --> 00:00:13.221
- So, this is the donor.
00:00:13.222 --> 00:00:14.889
Excellent appearing extremities,
00:00:14.890 --> 00:00:16.724
because he really
hasn\'t been ill
00:00:16.725 --> 00:00:19.685
for a prolonged period of time.
00:00:19.686 --> 00:00:21.312
Given the number of
preformed antibodies
00:00:21.313 --> 00:00:24.106
that Will has, we think this
is about as good as it\'s ever
00:00:24.107 --> 00:00:25.734
gonna get for him.
00:00:28.654 --> 00:00:32.616
But everybody feels comfortable
moving ahead with this.
00:00:37.120 --> 00:00:39.872
- These arms aren\'t
gonna look the same
00:00:39.873 --> 00:00:41.166
when I wake up.
00:00:42.709 --> 00:00:45.711
The last couple of years
I\'ve been interacting
00:00:45.712 --> 00:00:48.839
with almost everything
either with my elbow
00:00:48.840 --> 00:00:50.634
or with this little dog-ear.
00:00:51.677 --> 00:00:54.095
And that\'s gonna be gone.
00:00:54.096 --> 00:00:55.973
There\'s gonna be a hand.
00:01:21.790 --> 00:01:23.124
- Please put your hands together
00:01:23.125 --> 00:01:25.335
and welcome to the stage
Will Lautzenheiser.
00:01:28.630 --> 00:01:30.256
- When people first see me,
00:01:30.257 --> 00:01:32.591
I think they are wondering,
\"What happened to him?\"
00:01:32.592 --> 00:01:35.344
And to keep people
on their toes,
00:01:35.345 --> 00:01:37.472
mainly because I can\'t keep
myself on my toes anymore,
00:01:38.807 --> 00:01:40.516
I try to come up with
different answers,
00:01:40.517 --> 00:01:41.893
depending on who\'s asking.
00:01:44.813 --> 00:01:47.773
So, if a child comes
up to me and says,
00:01:47.774 --> 00:01:48.816
\"What happened to you?\"
00:01:48.817 --> 00:01:51.445
I say, \"I didn\'t
listen to my parents.\"
00:01:55.949 --> 00:01:58.075
Sometimes, I feel like I want
to embellish what happened
00:01:58.076 --> 00:01:59.285
just to make it interesting
for me.
00:01:59.286 --> 00:02:03.998
So I say, \"This arm was bitten off
by a shark when I was surfing.\"
00:02:03.999 --> 00:02:06.375
\"This leg I got stuck
in an elevator door.\"
00:02:06.376 --> 00:02:10.589
\"This arm I had to eat off that
time I was stuck in a mine.\"
00:02:11.089 --> 00:02:14.342
\"And this leg I lost when I
went back to kick the ass\"
00:02:14.343 --> 00:02:15.703
\"of the shark that
bit my arm off.\"
00:02:17.012 --> 00:02:20.140
You have no idea how hard
it is to find a shark\'s ass.
00:02:32.194 --> 00:02:34.320
At the same time I was
getting ready for my move,
00:02:34.321 --> 00:02:37.616
I also began to feel
a cramp in my leg.
00:02:39.034 --> 00:02:42.996
I didn\'t really think
anything of that at the time.
00:02:43.663 --> 00:02:45.873
I taught my first two classes.
00:02:45.874 --> 00:02:48.000
These kids were so enthusiastic.
00:02:48.001 --> 00:02:50.211
I could tell it was gonna
be a great semester.
00:02:50.212 --> 00:02:51.670
Unfortunately, the second day,
00:02:51.671 --> 00:02:54.674
the pain in my leg
was excruciating.
00:02:55.926 --> 00:02:58.677
I had no inkling that anything
00:02:58.678 --> 00:03:01.390
really tragic was
about to happen.
00:03:03.642 --> 00:03:06.060
The doctor said, \"We really
don\'t know what\'s going
00:03:06.061 --> 00:03:08.312
\"on with you, but it
doesn\'t sound like a cramp,
00:03:08.313 --> 00:03:10.064
\"a muscle pull, or
something like that.
00:03:10.065 --> 00:03:13.442
\"It sounds like an infection,
and we have to do these tests.\"
00:03:13.443 --> 00:03:17.279
And I had this battery
of tests pretty quickly.
00:03:17.280 --> 00:03:20.908
- At that point the
record starts skipping
00:03:20.909 --> 00:03:24.955
off of the reality track
into surreal mode.
00:03:28.917 --> 00:03:33.046
- By night, I had essentially
total organ failure.
00:03:35.841 --> 00:03:37.425
- My twin brother,
00:03:37.426 --> 00:03:40.220
to see him so transformed, was
00:03:46.101 --> 00:03:47.978
completely a nightmare.
00:03:50.313 --> 00:03:53.274
I remember they took
the ventilation tube
00:03:53.275 --> 00:03:55.276
out of Will\'s throat, and,
00:03:55.277 --> 00:03:59.489
basically, the first thing he
asked me was, \"What happened?\"
00:04:01.032 --> 00:04:05.327
And I had to explain this
was septic shock caused
00:04:05.328 --> 00:04:06.997
by a group A strep infection,
00:04:09.124 --> 00:04:12.794
and it\'s caused this damage.
00:04:15.005 --> 00:04:17.339
Basically, the picture
that emerged was that
00:04:17.340 --> 00:04:19.467
in order to save his
life he would have
00:04:19.468 --> 00:04:22.053
to lose some parts of his limbs.
00:04:27.392 --> 00:04:30.269
- When I woke up, I just said,
00:04:30.270 --> 00:04:31.896
\"I want to live, I want to live,
00:04:31.897 --> 00:04:34.899
\"I want to live, I want
to live, I want to live.\"
00:04:34.900 --> 00:04:36.275
I don\'t know what
I would have done
00:04:36.276 --> 00:04:39.320
throughout the process
if you hadn\'t been there.
00:04:39.321 --> 00:04:41.238
I\'m not sure I would
have said, \"I want to live,\"
00:04:41.239 --> 00:04:43.116
if you hadn\'t been there.
00:04:46.119 --> 00:04:48.454
- I found myself imagining
what it would be like
00:04:48.455 --> 00:04:50.122
to not have hands.
00:04:50.123 --> 00:04:54.252
Your hands, if anything,
were finer than my hands.
00:04:56.963 --> 00:05:00.424
Every time I use my hands,
in the last several months,
00:05:00.425 --> 00:05:04.596
I\'ve thought, \"I\'m grateful,
and I\'m sorry for your loss.\"
00:05:06.890 --> 00:05:11.102
- My right hand had a mole
on it, and yours doesn\'t.
00:05:11.937 --> 00:05:14.813
So, that would be a... Oh, my gosh.
00:05:14.814 --> 00:05:18.692
You do have a mole
on your right hand.
00:05:18.693 --> 00:05:21.738
That\'s something I didn\'t know.
Look at that.
00:05:23.365 --> 00:05:26.116
- I suppose we should
00:05:26.117 --> 00:05:28.327
talk about getting married
in the first place.
00:05:28.328 --> 00:05:29.537
- That would help.
00:05:29.538 --> 00:05:31.914
- This is Old South Church in Boston.
00:05:31.915 --> 00:05:34.334
We got married in 1969.
00:05:35.293 --> 00:05:37.170
And I was born in 1915.
00:05:38.380 --> 00:05:42.007
So, you can figure
out how old I was.
00:05:42.008 --> 00:05:43.342
Not too young.
00:05:43.343 --> 00:05:45.261
- We didn\'t know I
was having twins.
00:05:45.262 --> 00:05:47.721
A young doctor came and told me.
00:05:47.722 --> 00:05:50.641
He said, \"Mrs. Lautzenheiser,
you had twin boys.\"
00:05:50.642 --> 00:05:52.060
I said, \"What?\"
00:05:59.609 --> 00:06:02.194
There\'s a certain bond.
00:06:02.195 --> 00:06:04.614
- They\'re still very close.
- Yes.
00:06:05.615 --> 00:06:09.243
- When my brother Tom
and I were growing up
00:06:09.244 --> 00:06:11.704
we always used to play together.
00:06:11.705 --> 00:06:15.749
As we were getting a little
older, it kind of became clear
00:06:15.750 --> 00:06:19.044
that although we are identical,
00:06:19.045 --> 00:06:23.258
we also, of course, had different
personalities or interests.
00:06:24.509 --> 00:06:28.388
My brother tended to
explore the natural world,
00:06:29.889 --> 00:06:33.852
but I often stayed at
home and preferred a book.
00:06:35.395 --> 00:06:39.398
I like to think that he has
so much of the outward energy,
00:06:39.399 --> 00:06:43.403
and I might have directed
my energy more inward.
00:06:44.988 --> 00:06:49.200
I was about eight
when I determined
00:06:50.035 --> 00:06:52.078
that I wanted to be a filmmaker.
00:06:53.246 --> 00:06:54.663
I just remember thinking,
00:06:54.664 --> 00:06:59.209
\"I wonder how all of this would look
filmed.
00:06:59.210 --> 00:07:03.547
\"If I had a camera,
where would I put it?\"
00:07:03.548 --> 00:07:06.593
That type of
imagination persisted
00:07:07.135 --> 00:07:09.262
throughout my childhood.
00:07:22.067 --> 00:07:25.736
I wasn\'t so much interested
in narrative directly,
00:07:25.737 --> 00:07:29.281
but how we can put together
a collage where you
00:07:29.282 --> 00:07:31.533
may not be able
to exactly express
00:07:31.534 --> 00:07:33.494
why you\'re feeling the
way you\'re feeling,
00:07:33.495 --> 00:07:35.537
or what the images are doing,
00:07:35.538 --> 00:07:38.458
or even to recognize what
the images really are.
00:07:41.544 --> 00:07:45.297
For a long time, I was
photographing every cigarette butt
00:07:45.298 --> 00:07:48.092
that I saw on the sidewalk,
and all these different colors
00:07:48.093 --> 00:07:50.594
and textures formed
the environment
00:07:50.595 --> 00:07:52.638
of this one little blight.
00:07:52.639 --> 00:07:56.392
I began to come up with an
alternative history about them.
00:07:56.393 --> 00:07:59.103
It\'s narrated like a
nature documentary.
00:07:59.104 --> 00:08:02.648
They commonly die,
and remain to be seen
00:08:02.649 --> 00:08:05.819
in sidewalk crevices
and by curb stones.
00:08:06.820 --> 00:08:08.779
I\'ve also recorded sound.
00:08:08.780 --> 00:08:12.700
I was a camera assistant
on many projects.
00:08:12.701 --> 00:08:15.285
It is such a privilege
to be on a film set.
00:08:15.286 --> 00:08:18.372
Scene 45 Pick Up,
Flatulation. Take 1.
00:08:18.373 --> 00:08:21.458
Scene 129, Kill, Kill. Take 1.
00:08:21.459 --> 00:08:23.753
Scene 88, Fatidical. Take 1.
00:08:27.924 --> 00:08:29.800
- That\'s too cute.
00:08:29.801 --> 00:08:31.720
Are you trying to
point the camera at me?
00:08:32.303 --> 00:08:33.054
- Maybe.
00:08:33.055 --> 00:08:34.680
- That\'s not necessary.
00:08:34.681 --> 00:08:38.893
I\'m always fumbling.
00:08:41.855 --> 00:08:43.731
So you want your pants off?
00:08:43.732 --> 00:08:46.317
- Yeah, I gotta do it.
00:08:53.867 --> 00:08:57.620
- I\'ve been alone
for most of my life,
00:08:58.913 --> 00:09:01.415
just because I feel like I\'ve
never really quite connected,
00:09:01.416 --> 00:09:04.586
in one way or another,
with someone else.
00:09:06.129 --> 00:09:09.882
When Will and I started to
chat, it was like, okay,
00:09:09.883 --> 00:09:13.635
someone I can talk to
00:09:13.636 --> 00:09:15.638
who is at my level of thinking.
00:09:18.057 --> 00:09:19.808
He has a great way of being.
00:09:19.809 --> 00:09:24.939
His mind is fun
to interact with.
00:09:30.695 --> 00:09:34.657
I\'m trying to get a nice establishment
of sweet woodruff here.
00:09:35.867 --> 00:09:37.911
It needs a little help.
00:09:40.663 --> 00:09:43.207
Plants have a way of being.
00:09:43.208 --> 00:09:47.212
Trying to figure that out
is kind of fun for me.
00:09:48.797 --> 00:09:52.300
Playing marriage counselor
to some clients sometimes
00:09:53.551 --> 00:09:57.179
is interesting too,
00:09:57.180 --> 00:10:01.392
because she\'ll want one color
and he\'ll want another,
00:10:04.312 --> 00:10:07.106
but that\'s neither
here nor there.
00:10:13.738 --> 00:10:15.031
It\'s very nice.
00:10:16.866 --> 00:10:20.786
I do good work sometimes.
00:10:20.787 --> 00:10:24.999
My life before this, if I
wanted to just go to New York
00:10:25.834 --> 00:10:27.918
or go wherever for the weekend,
00:10:27.919 --> 00:10:30.963
I could have somebody
water my plants.
00:10:30.964 --> 00:10:32.757
It\'s not the same now.
00:10:35.844 --> 00:10:38.637
He\'s got family, but
they\'re not really capable.
00:10:38.638 --> 00:10:40.973
So, I guess I was his boyfriend,
00:10:40.974 --> 00:10:44.768
and then after he got
sick I was his partner.
00:10:44.769 --> 00:10:47.729
It was a little bit of a, like,
\"Okay, is this what I\'m doing?
00:10:47.730 --> 00:10:48.772
\"Okay, maybe yes.\"
00:10:48.773 --> 00:10:49.940
\"I\'m okay with that.\"
00:10:49.941 --> 00:10:51.860
\"Yes, we\'re fine.\"
00:10:53.111 --> 00:10:54.612
But,
00:10:57.323 --> 00:10:59.157
I moved in with him
00:10:59.158 --> 00:11:03.288
because, basically, he would
have nobody else to help him.
00:11:04.956 --> 00:11:08.458
So, in some ways we\'re
kind of stuck with each other,
00:11:08.459 --> 00:11:11.254
whether we like it or not.
00:11:15.925 --> 00:11:17.467
I guess it\'s kind of
like having a kid,
00:11:17.468 --> 00:11:20.387
where you\'re like, well,
I can\'t do anything now
00:11:20.388 --> 00:11:24.475
but take care of this kid,
except it\'s not a kid.
00:11:43.036 --> 00:11:44.329
- Okay.
00:12:01.095 --> 00:12:02.847
- Good job.
00:12:18.655 --> 00:12:20.531
- Let\'s see about this.
00:12:24.035 --> 00:12:27.872
Today, I am making
brownies from a boxed mix.
00:12:29.165 --> 00:12:33.169
Which, of course, is nothing
that I would do in real life.
00:12:34.045 --> 00:12:37.215
I would make brownies
from scratch.
00:12:38.174 --> 00:12:41.552
Now, you have to watch
this very carefully.
00:12:44.931 --> 00:12:48.476
This is the year of
reduced expectations,
00:12:49.936 --> 00:12:52.270
resorting to a boxed mix.
00:12:52.271 --> 00:12:53.271
It\'s not okay.
00:12:54.440 --> 00:12:56.067
Betty Crocker, eat
your heart out.
00:13:19.257 --> 00:13:20.340
- Oh, my goodness.
00:13:20.341 --> 00:13:24.637
- Unbelievable. I can\'t
believe that I hit it.
00:13:26.180 --> 00:13:29.599
It\'s a totally
altered state for me.
00:13:29.600 --> 00:13:32.352
It\'s a totally
different way of being.
00:13:32.353 --> 00:13:36.273
It\'s going to take every
bit of energy I have
00:13:36.274 --> 00:13:38.358
in order to try to get back
00:13:38.359 --> 00:13:41.279
to what I would
like to be doing.
00:13:58.171 --> 00:14:01.381
Before my amputations,
I never owned a car.
00:14:01.382 --> 00:14:03.717
So, I always walked.
00:14:03.718 --> 00:14:05.302
I\'d walk to work and back.
00:14:05.303 --> 00:14:07.387
I\'d walk all around
the neighborhood.
00:14:07.388 --> 00:14:11.141
Maybe, on average,
about five miles a day.
00:14:11.142 --> 00:14:14.311
And now, of course, walking
is going to be very difficult.
00:14:14.312 --> 00:14:17.565
When I do walk, it\'s going to
be more of a balancing act.
00:14:20.443 --> 00:14:21.693
- Ready?
- Yes.
00:14:21.694 --> 00:14:22.487
- Here we go.
00:14:22.488 --> 00:14:24.446
One, really rock.
00:14:24.447 --> 00:14:25.614
Two.
- Two,
00:14:25.615 --> 00:14:27.365
three.
00:14:27.366 --> 00:14:28.408
- Good.
00:14:28.409 --> 00:14:29.285
I think you\'re gonna...
00:14:29.285 --> 00:14:29.994
- No.
00:14:29.994 --> 00:14:30.994
- Okay, sit.
00:14:32.622 --> 00:14:36.416
- My foot has rotated some, too.
00:14:36.417 --> 00:14:37.210
- Ready, Will?
00:14:37.210 --> 00:14:38.210
- Yeah.
00:14:39.003 --> 00:14:39.921
- We could put it back on
00:14:39.922 --> 00:14:42.339
and see what happens again.
00:14:42.340 --> 00:14:44.216
Patients will come in and
say, \"I wanna get up.\"
00:14:44.217 --> 00:14:46.468
\"I wanna get walking,\"
where we have
00:14:46.469 --> 00:14:47.552
to go back to the basics.
00:14:47.553 --> 00:14:49.262
Your whole center of
gravity has changed
00:14:49.263 --> 00:14:51.098
after an amputation.
00:14:51.099 --> 00:14:53.600
- Three.
00:14:53.601 --> 00:14:55.143
Whoa.
00:14:55.144 --> 00:14:58.396
- My brain right now doesn\'t
even conceive of being up
00:14:58.397 --> 00:15:02.527
and saying, \"Okay, now I\'m
gonna take a step with this.\"
00:15:04.112 --> 00:15:06.613
- When you\'re walking you
really do use your arms,
00:15:06.614 --> 00:15:08.448
and they help you to balance.
00:15:08.449 --> 00:15:10.450
When your arms are amputated
it\'s more difficult
00:15:10.451 --> 00:15:13.453
and it is also scary.
Because if you go to fall,
00:15:13.454 --> 00:15:15.288
you put out your
arms immediately.
00:15:15.289 --> 00:15:17.457
It\'s a natural reflex
to break your fall.
00:15:17.458 --> 00:15:19.584
But someone like
Will can\'t do that.
00:15:19.585 --> 00:15:20.585
- Three.
00:15:21.754 --> 00:15:23.380
- Okay.
00:15:23.381 --> 00:15:25.465
- You guys really aren\'t
holding me though, right?
00:15:25.466 --> 00:15:26.675
- No.
00:15:26.676 --> 00:15:27.468
- This is perfect.
00:15:27.469 --> 00:15:28.802
- Ta-da.
00:15:28.803 --> 00:15:29.720
Wait, wait, wait,
wait, wait, wait.
00:15:29.721 --> 00:15:32.515
So, you guys, do that again.
00:15:33.599 --> 00:15:34.433
- You\'re standing.
00:15:34.434 --> 00:15:35.726
- I\'m standing.
00:15:37.436 --> 00:15:38.478
- You\'re gonna try dancing?
00:15:38.479 --> 00:15:40.397
- And take a step.
00:15:40.398 --> 00:15:42.440
- Perfect.
- Good job, Will.
00:15:42.441 --> 00:15:43.525
- Thumbs up.
00:15:43.526 --> 00:15:44.318
- Yay!
00:15:44.319 --> 00:15:45.902
- Not bad for your first day.
00:15:45.903 --> 00:15:47.947
- That\'s my thumbs up sign,
by the way.
00:15:51.117 --> 00:15:53.869
There are some advantages,
really, to being amputated.
00:15:53.870 --> 00:15:55.996
One of the best things is
that I no longer have to wash
00:15:55.997 --> 00:15:57.874
my hands after I pee.
00:15:59.917 --> 00:16:01.585
It\'s really great,
00:16:01.586 --> 00:16:04.004
because I can have unusual
Facebook profile pictures,
00:16:04.005 --> 00:16:05.256
like this one.
00:16:08.509 --> 00:16:11.220
Not that many
people can do that.
00:16:13.222 --> 00:16:15.725
It\'s got 37 likes
so far and counting.
00:16:17.310 --> 00:16:20.980
There are some downsides, of
course, to being amputated.
00:16:21.647 --> 00:16:23.648
I can\'t masturbate.
00:16:23.649 --> 00:16:25.985
I always have to ask
someone else to lend a hand.
00:16:29.530 --> 00:16:33.910
Maybe that\'s actually the best
part about being amputated.
00:16:34.243 --> 00:16:37.996
What really happened to me
is I got toxic shock syndrome
00:16:37.997 --> 00:16:40.332
from a group A strep infection
00:16:40.333 --> 00:16:43.376
that went haywire
and killed my limbs.
00:16:43.377 --> 00:16:45.629
And that\'s not really funny.
00:16:45.630 --> 00:16:48.256
But I always thought,
00:16:48.257 --> 00:16:50.592
before all of this happened,
that toxic shock syndrome
00:16:50.593 --> 00:16:53.428
was something that you
could only get from wearing
00:16:53.429 --> 00:16:55.848
certain tampons. That\'s
not how I got it.
00:16:57.642 --> 00:17:00.727
In fact, the doctors are
having a hard time describing
00:17:00.728 --> 00:17:02.020
exactly what happened to me.
00:17:02.021 --> 00:17:03.897
They have a word for
that which is, \"idiopathic.\"
00:17:03.898 --> 00:17:05.482
It\'s a technical term.
00:17:05.483 --> 00:17:09.403
It means, \"We have no idea what
the heck happened to you.\"
00:17:10.738 --> 00:17:12.322
The extent that I\'ve been
able to hold myself together
00:17:12.323 --> 00:17:16.202
has been through humor,
really kind of gallows humor
00:17:16.702 --> 00:17:18.370
or dark humor.
00:17:18.371 --> 00:17:21.748
I think that that\'s a healthy
way of trying to deal with it.
00:17:21.749 --> 00:17:26.044
Because, otherwise, one would
just be probably sitting
00:17:26.045 --> 00:17:30.715
in a corner weeping, which
isn\'t really good for me,
00:17:30.716 --> 00:17:34.302
and it\'s not really good for
anyone around me, either.
00:17:34.303 --> 00:17:35.971
So, a lot of people are saying
00:17:35.972 --> 00:17:37.389
maybe I should write a memoir,
00:17:37.390 --> 00:17:39.641
because it could be
really inspirational.
00:17:39.642 --> 00:17:42.560
I look back to certain books,
00:17:42.561 --> 00:17:44.938
and maybe there\'s a title
there that I could reference.
00:17:44.939 --> 00:17:48.109
I think I might call the
memoir, \"A Farewell to Arms
00:17:49.902 --> 00:17:50.902
\"and Legs.\"
00:17:51.904 --> 00:17:54.407
That\'s it, everyone.
Thanks very much.
00:18:00.997 --> 00:18:02.956
Thanks, Rob.
00:18:02.957 --> 00:18:05.584
- Give it up for Will.
00:18:18.597 --> 00:18:20.724
- Is it still sticky?
00:18:20.725 --> 00:18:22.309
- Yeah, it\'s still sticky.
00:18:22.310 --> 00:18:24.602
- I guess add some
more flour then.
00:18:24.603 --> 00:18:25.812
- One tablespoon?
00:18:25.813 --> 00:18:26.814
- No, a few.
00:18:33.195 --> 00:18:35.030
It\'s gonna need a lot
more flour than that.
00:18:35.031 --> 00:18:36.323
You can tell already.
00:18:36.324 --> 00:18:37.824
- So, why do you wait
for me to put this?
00:18:37.825 --> 00:18:39.034
- Just add a quarter cup.
00:18:39.035 --> 00:18:39.869
Grab one of these
00:18:39.870 --> 00:18:41.745
and just add some.
00:18:41.746 --> 00:18:42.787
- That\'s a third.
00:18:42.788 --> 00:18:45.332
- That\'s a third,
but that\'s okay.
00:18:45.333 --> 00:18:47.334
You don\'t have to fill
it all the way up.
00:18:47.335 --> 00:18:48.752
- Well.
00:18:48.753 --> 00:18:50.129
What if I do this?
00:18:53.841 --> 00:18:55.509
- What are you doing?
00:19:00.097 --> 00:19:03.850
I used to be really
fiercely independent.
00:19:03.851 --> 00:19:05.643
- It\'s a little better.
00:19:05.644 --> 00:19:06.853
- Great.
00:19:06.854 --> 00:19:10.482
Now I have to micromanage everyone else,
00:19:10.483 --> 00:19:13.526
or try not to
micromanage everyone else
00:19:13.527 --> 00:19:15.737
in doing things for me.
00:19:15.738 --> 00:19:17.864
I think this dough
is really nice.
00:19:17.865 --> 00:19:21.493
It\'s not really sticky,
and it\'s kinda satiny.
00:19:21.494 --> 00:19:23.078
It\'s really beautiful.
00:19:23.079 --> 00:19:26.956
Everything falls onto
my partner, Angel.
00:19:26.957 --> 00:19:29.793
And he has to take up the
slack for all the stuff
00:19:29.794 --> 00:19:33.213
that I can\'t do. And that\'s
a lot for one person.
00:19:33.214 --> 00:19:35.298
Are you trying to make
it into a rectangle?
00:19:35.299 --> 00:19:36.841
- I don\'t know. I want it to be
00:19:36.842 --> 00:19:39.803
like a rustic, ugly pizza.
00:19:39.804 --> 00:19:40.929
- Why?
00:19:40.930 --> 00:19:41.847
- You know.
00:19:41.847 --> 00:19:42.765
I\'m letting the dough tell me
00:19:42.766 --> 00:19:44.265
which shape it wants to be.
00:19:44.266 --> 00:19:46.894
- You\'re crazy.
00:19:49.730 --> 00:19:53.025
I feel like I make
too many demands,
00:19:54.402 --> 00:19:56.779
because it almost doesn\'t stop.
00:19:57.530 --> 00:20:00.198
Made by a person who
doesn\'t know circles.
00:20:00.199 --> 00:20:02.618
- You\'re being a jerk again.
00:20:05.913 --> 00:20:08.081
You get into arguments
about things,
00:20:08.082 --> 00:20:10.917
and I don\'t know how
many times he\'s kicked me
00:20:10.918 --> 00:20:12.961
out of the house.
00:20:12.962 --> 00:20:16.381
I ignore him.
00:20:16.382 --> 00:20:18.550
Because I know he
doesn\'t mean it.
00:20:18.551 --> 00:20:21.803
As difficult as it is for
me to sort of sit there
00:20:21.804 --> 00:20:24.013
and take it, I kind of
understand that it\'s part
00:20:24.014 --> 00:20:27.226
of the process, and
he\'s gotta grieve.
00:20:29.228 --> 00:20:33.441
As long as he doesn\'t stay
there, then I\'m fine with that.
00:20:34.525 --> 00:20:36.151
And we need to
figure out how to get
00:20:36.152 --> 00:20:40.364
to a more sustainable
lifestyle, for me especially.
00:20:43.534 --> 00:20:45.160
- It\'s a hard way for me to be,
00:20:45.161 --> 00:20:48.539
especially because I still feel
in myself to be independent,
00:20:50.416 --> 00:20:52.960
and I have to
realize that I\'m not.
00:20:54.253 --> 00:20:56.754
- That\'s how I lose my fingers.
00:20:56.755 --> 00:21:00.134
We\'d become the
reality show, \"Amputee Family.\"
00:21:24.492 --> 00:21:26.451
- NewsCenter 5 has
learned exclusively
00:21:26.452 --> 00:21:28.661
doctors at Brigham and
Women\'s Hospital have done
00:21:28.662 --> 00:21:32.207
their first successful
double-hand transplant
00:21:32.208 --> 00:21:34.417
on a 65-year-old
Revere man.
00:21:34.418 --> 00:21:37.254
- Mr. Mangino came
to us with a dream
00:21:37.922 --> 00:21:39.631
to once again have arms,
00:21:39.632 --> 00:21:41.466
to have hands,
00:21:41.467 --> 00:21:43.010
to sense touch.
00:21:44.345 --> 00:21:47.472
And this team of pioneers
has done everything possible
00:21:47.473 --> 00:21:50.893
to help Mr. Mangino
achieve this dream.
00:21:54.104 --> 00:21:56.731
- That\'s unbelievable.
00:21:56.732 --> 00:21:59.235
Unbelievable, back and forth
in the pool the first time.
00:22:08.744 --> 00:22:10.370
- I was in the hospital
00:22:10.371 --> 00:22:14.583
when Richard Mangino had
his arm transplant surgery.
00:22:16.460 --> 00:22:20.338
And people sent articles
to me that came out,
00:22:20.339 --> 00:22:24.968
asking whether this would
be a possibility for me also
00:22:24.969 --> 00:22:26.386
to get arm transplants.
00:22:26.387 --> 00:22:27.971
And at the time, I thought
00:22:27.972 --> 00:22:30.266
that\'s just not gonna happen.
00:22:31.934 --> 00:22:33.977
I was still in the ICU.
00:22:33.978 --> 00:22:36.187
I was still a mess.
00:22:36.188 --> 00:22:37.939
My skin hadn\'t healed.
00:22:37.940 --> 00:22:41.944
It needed a couple of hours
of wound care every day.
00:22:43.320 --> 00:22:46.656
Seven months or so
after my amputations,
00:22:46.657 --> 00:22:50.869
I met a plastic surgeon,
and this surgeon said,
00:22:52.121 --> 00:22:54.080
\"I had dinner with
a friend last night.\"
00:22:54.081 --> 00:22:55.873
\"He\'d like to talk with you.\"
00:22:55.874 --> 00:22:58.418
And I said, \"Okay,
who\'s your friend?\"
00:22:58.419 --> 00:23:01.963
And he said, \"It\'s Bohdan
Pomahac. He\'s in charge
00:23:01.964 --> 00:23:05.508
\"of the face and
arm transplant team
00:23:05.509 --> 00:23:09.262
\"at Brigham and Women\'s, and
we can try to arrange a meeting,
00:23:09.263 --> 00:23:13.266
\"and see whether this would be
a possibility for you.\"
00:23:13.267 --> 00:23:17.646
Well, I felt like I was
knocked over sideways.
00:23:18.647 --> 00:23:21.190
- Thank you very much.
It\'s really a pleasure to be here.
00:23:21.191 --> 00:23:24.277
What I want to share with you
today is a story of Dallas,
00:23:24.278 --> 00:23:25.737
a young man from Texas.
00:23:25.738 --> 00:23:28.072
Here he is playing with
his two-year-old daughter,
00:23:28.073 --> 00:23:30.283
and the next thing
he knows is this,
00:23:30.284 --> 00:23:33.745
four months later, after
coma and multiple operations.
00:23:33.746 --> 00:23:35.371
The surgeon did a terrific job.
00:23:35.372 --> 00:23:37.832
He saved his life, but the
patient has no eyelids,
00:23:37.833 --> 00:23:42.046
no nose, no lips. He cannot
kiss his daughter or smile.
00:23:43.297 --> 00:23:44.631
Conventional techniques
generally include using
00:23:44.632 --> 00:23:46.633
the patient\'s own body and
replace what\'s missing
00:23:46.634 --> 00:23:49.677
with something that
you can spare, ideally.
00:23:49.678 --> 00:23:51.929
In some cases, like
face or missing arms,
00:23:51.930 --> 00:23:53.222
there\'s just nothing.
00:23:53.223 --> 00:23:55.767
It seemed that it was
worthwhile exploring
00:23:55.768 --> 00:23:57.602
alternative avenues
that would give
00:23:57.603 --> 00:24:00.397
our patients something more.
00:24:09.156 --> 00:24:12.825
The fantasy that one could
donate a part of the body
00:24:12.826 --> 00:24:15.245
to someone else is very old.
00:24:15.746 --> 00:24:18.247
- It\'s moving.
00:24:18.248 --> 00:24:20.333
It\'s alive! It\'s alive! It\'s alive!
00:24:20.334 --> 00:24:24.545
Our imagination has,
in many ways,
00:24:24.546 --> 00:24:28.634
predicted or forecasted what may be
coming in the future.
00:24:31.679 --> 00:24:34.222
Back then, they had no
technical feasibilities
00:24:34.223 --> 00:24:37.266
to make it happen, but they
certainly depicted something
00:24:37.267 --> 00:24:41.480
that people were hoping, perhaps,
one day will be feasible.
00:24:43.482 --> 00:24:47.694
Every war brings major
medical improvement,
00:24:47.695 --> 00:24:50.614
development and breakthrough.
00:24:55.494 --> 00:24:57.578
Somewhat parallel to
that was evolution
00:24:57.579 --> 00:25:00.790
of transplantation itself,
coincidentally started
00:25:00.791 --> 00:25:04.837
by a plastic surgeon who was
interested in treating burns.
00:25:11.760 --> 00:25:14.470
- In my World War II
experiences,
00:25:14.471 --> 00:25:18.684
when we used skin from dead
persons to cover burns,
00:25:20.018 --> 00:25:24.231
we knew that the skin
would eventually melt away.
00:25:25.441 --> 00:25:28.109
Whereas if his own
skin had been used,
00:25:28.110 --> 00:25:31.320
the skin would have
permanently survived.
00:25:31.321 --> 00:25:34.657
And I wondered how the
body could be so smart
00:25:34.658 --> 00:25:37.744
as to distinguish
between a piece of skin
00:25:37.745 --> 00:25:40.581
which to you and me
would look the same.
00:25:47.921 --> 00:25:51.884
- He went to kidney as a
model of transplantation,
00:25:54.136 --> 00:25:56.596
because you could monitor
certain markers in the blood
00:25:56.597 --> 00:25:59.682
that gave you early signs
of decline of the function
00:25:59.683 --> 00:26:01.602
and therefore
signs of rejection.
00:26:05.105 --> 00:26:06.856
- And one day, John
Merrill called and said,
00:26:06.857 --> 00:26:08.065
\"Joe, you\'ll never
guess.\"
00:26:08.066 --> 00:26:09.859
He said, \"We\'re
getting a patient in.
00:26:09.860 --> 00:26:11.402
\"They\'re dying of
kidney disease,
00:26:11.403 --> 00:26:15.031
\"and there\'s an identical twin
who is a possible donor.\"
00:26:15.032 --> 00:26:17.909
We were excited because we
had everything ready to go,
00:26:17.910 --> 00:26:20.870
except the
immunological barrier,
00:26:20.871 --> 00:26:22.205
and there\'s no
immunological barrier
00:26:22.206 --> 00:26:23.707
between identical twins.
00:26:58.784 --> 00:27:02.495
- I was wondering if you
ran into any ethical issues
00:27:02.496 --> 00:27:04.163
during facial
transplantation and a lot
00:27:04.164 --> 00:27:06.666
of the work you\'ve done.
00:27:06.667 --> 00:27:07.959
- I wouldn\'t know
where to start.
00:27:07.960 --> 00:27:11.587
There are so many ethical
issues from the fundamental idea
00:27:11.588 --> 00:27:14.632
of whether this
is even something
00:27:14.633 --> 00:27:16.050
that we should do for patients,
00:27:16.051 --> 00:27:19.470
to subject them to life
on immunosuppression
00:27:19.471 --> 00:27:21.347
for non-life-saving organ.
00:27:21.348 --> 00:27:25.561
That was probably the
biggest ethical dilemma.
00:27:26.395 --> 00:27:27.687
The next frontier is gonna be,
00:27:27.688 --> 00:27:31.148
can we push that limit
a little farther should
00:27:31.149 --> 00:27:33.609
the immunosuppression not
be as much of an issue.
00:27:33.610 --> 00:27:36.153
And that\'s, I think, what\'s
holding our field back,
00:27:36.154 --> 00:27:38.823
because it has to be
something truly dramatic,
00:27:38.824 --> 00:27:42.994
life-changing, life-altering and disabling,
00:27:42.995 --> 00:27:46.289
so that we could say and feel
comfortable ourselves
00:27:46.290 --> 00:27:48.916
that yes, this is worth
it for the patient,
00:27:48.917 --> 00:27:51.794
because he\'s regaining
arms when he had nothing.
00:27:51.795 --> 00:27:54.505
He\'s regaining face
when they had nothing,
00:27:54.506 --> 00:27:57.133
when they were not able
to go out in public.
00:27:57.134 --> 00:27:59.802
- We\'re gonna witness
a miracle right now.
00:27:59.803 --> 00:28:02.138
A devastating accident
burned Dallas Wiens\'s face off,
00:28:02.139 --> 00:28:04.891
but thanks to a donor, the
young father is the recipient
00:28:04.892 --> 00:28:08.854
of the first full-face
transplant here in the U.S.
00:28:10.022 --> 00:28:11.355
- This face transplant
will allow Dallas,
00:28:11.356 --> 00:28:13.357
who by all accounts
is a devoted father,
00:28:13.358 --> 00:28:16.445
to more fully participate
in Scarlett\'s life.
00:28:17.362 --> 00:28:18.614
That\'s a true gift.
00:28:20.616 --> 00:28:23.910
- I could have lived like I was.
00:28:23.911 --> 00:28:26.580
- You could have
lived without a face?
00:28:40.552 --> 00:28:41.552
- Okay.
00:28:47.893 --> 00:28:49.770
And you can go back down.
00:28:52.105 --> 00:28:54.066
Yeah.
00:29:10.999 --> 00:29:13.292
Let\'s try that again.
00:29:13.293 --> 00:29:17.129
I was working at ImprovBoston,
and Will rolled in
00:29:17.130 --> 00:29:19.090
and did his bit.
00:29:19.091 --> 00:29:21.592
It was his first show,
and he was so good at it,
00:29:21.593 --> 00:29:25.054
just was comfortable in
front of an audience.
00:29:25.055 --> 00:29:26.222
That\'s how we met,
00:29:26.223 --> 00:29:28.474
and we started doing
comedy together.
00:29:28.475 --> 00:29:32.562
Basking in the sun, eating,
what else do cats do?
00:29:36.692 --> 00:29:37.692
Action.
00:29:38.735 --> 00:29:40.778
- Many people who are very funny
00:29:40.779 --> 00:29:44.908
spend years trying to
find their hook in comedy.
00:29:46.660 --> 00:29:49.955
And I really lucked
into having a hook.
00:29:58.171 --> 00:30:01.215
I\'m here to talk about
something a little serious,
00:30:01.216 --> 00:30:05.220
which is the issue of
disability and visibility.
00:30:06.555 --> 00:30:10.224
Every day when I go out, if
I see a kid on the sidewalk,
00:30:10.225 --> 00:30:14.438
as I go by, I hear, \"Mom,
that guy broke both his legs.\"
00:30:17.065 --> 00:30:20.192
And I often wanna say,
\"Don\'t you even notice
00:30:20.193 --> 00:30:22.320
\"that I don\'t have my arms too?\"
00:30:23.655 --> 00:30:26.282
One of the aspects of
being a disabled person
00:30:26.283 --> 00:30:30.161
is that you\'re kind of
either viewed as an object
00:30:30.162 --> 00:30:34.040
of pity or as an object
of inspiration, and ...
00:30:34.041 --> 00:30:38.253
- But, I treat him as
an object of annoyance.
00:30:38.628 --> 00:30:39.920
- Right.
00:30:39.921 --> 00:30:42.339
- Which you\'re not
supposed to treat people
00:30:42.340 --> 00:30:43.841
like him that way.
00:30:43.842 --> 00:30:45.301
- We thought instead
of just talking
00:30:45.302 --> 00:30:48.012
about this, we\'d have some
video of me in public.
00:30:48.013 --> 00:30:51.140
And you can actually see
this type of thing at work.
00:30:51.141 --> 00:30:53.350
There\'s this mermaid,
obviously mocking me.
00:30:53.351 --> 00:30:54.978
I couldn\'t even look at her.
00:30:56.188 --> 00:30:58.355
- The mermaid was just
promoting a show.
00:30:58.356 --> 00:30:59.398
She wasn\'t taunting you.
00:30:59.399 --> 00:31:02.234
- Okay, so, I kinda
went after that mermaid.
00:31:02.235 --> 00:31:04.654
And I told her to
grow a pair of legs.
00:31:09.326 --> 00:31:10.659
She got the police involved.
00:31:10.660 --> 00:31:13.412
He, believe it or not, said,
\"Please keep your hands
00:31:13.413 --> 00:31:14.831
\"where I can see them.\"
00:31:17.209 --> 00:31:18.709
- He escaped from the handcuffs.
00:31:18.710 --> 00:31:21.546
- The handcuffs just kept
falling off my stumps.
00:31:24.299 --> 00:31:27.009
There\'s a lot of stuff
that I have trouble doing.
00:31:27.010 --> 00:31:28.385
I need help with bathing,
00:31:28.386 --> 00:31:31.180
and I need help with
food preparation,
00:31:31.181 --> 00:31:33.891
and with laundry, and
other household tasks.
00:31:33.892 --> 00:31:37.019
I think you noticed that
we needed help around here,
00:31:37.020 --> 00:31:38.687
more than we had.
00:31:38.688 --> 00:31:42.441
- It was too obvious a
fit for me not to offer.
00:31:42.442 --> 00:31:43.859
So, I offered.
00:31:43.860 --> 00:31:45.820
They accepted.
00:31:45.821 --> 00:31:49.240
- Steve is one of my
personal care assistants.
00:31:49.241 --> 00:31:51.992
But because he\'s
also a comedian,
00:31:51.993 --> 00:31:54.286
I get to play around
with that a little bit.
00:31:54.287 --> 00:31:57.581
And at a show that I
hosted last summer,
00:31:57.582 --> 00:32:03.838
I got to say, \"Our next comedian,
not only is really funny, but
00:32:03.839 --> 00:32:07.466
\"he also washes my
scrotum twice a week.\"
00:32:07.467 --> 00:32:10.553
\"Please everyone
welcome Steve Delfino.\"
00:32:10.554 --> 00:32:11.887
Which, I don\'t know.
00:32:11.888 --> 00:32:14.473
I hope that doesn\'t
seem too demeaning.
00:32:14.474 --> 00:32:16.101
- That\'s my favorite intro ever.
00:32:21.565 --> 00:32:23.399
- What do you think?
00:32:23.400 --> 00:32:24.441
- Let\'s do it.
00:32:24.442 --> 00:32:25.484
There is no try.
00:32:25.485 --> 00:32:26.444
There is only do.
00:32:26.444 --> 00:32:27.444
- There is.
00:32:28.989 --> 00:32:31.615
And if you get up
and it\'s not working,
00:32:31.616 --> 00:32:32.409
you\'re sitting back down.
00:32:32.410 --> 00:32:33.534
- I sit back down.
00:32:33.535 --> 00:32:34.452
No worries.
00:32:34.453 --> 00:32:36.204
Here we go.
- It\'s right there.
00:32:45.088 --> 00:32:46.547
Beautiful.
00:32:46.548 --> 00:32:48.592
Now, you\'re centering.
00:32:56.808 --> 00:32:58.434
- Okay, I\'m gonna
try to take a step.
00:32:58.435 --> 00:32:59.852
Your shoulder is right there.
00:32:59.853 --> 00:33:01.103
- Mm-hmm.
00:33:01.104 --> 00:33:02.104
- Ready?
00:33:06.776 --> 00:33:07.986
My gosh.
00:33:47.651 --> 00:33:49.568
- Like that.
- Okay.
00:33:49.569 --> 00:33:51.570
- And then go ahead and kick back.
00:33:51.571 --> 00:33:52.781
And straighten.
00:34:45.834 --> 00:34:47.377
Good.
00:34:48.712 --> 00:34:52.381
- Soon after his limb loss,
I met Will to be evaluated
00:34:52.382 --> 00:34:55.884
for upper extremity
transplant surgery.
00:34:55.885 --> 00:34:58.053
There are a whole
battery of different tests
00:34:58.054 --> 00:35:00.055
to make sure that their
blood vessels are appropriate
00:35:00.056 --> 00:35:01.765
and that we know where they are
00:35:01.766 --> 00:35:03.726
to make sure that we know
what nerves they have
00:35:03.727 --> 00:35:06.021
and what we can connect up,
00:35:07.439 --> 00:35:09.148
and numerous other
medical tests to make sure
00:35:09.149 --> 00:35:10.733
that we\'re not gonna
run into problems
00:35:10.734 --> 00:35:14.945
when we start giving
somebody immunosuppression.
00:35:14.946 --> 00:35:16.822
We try not to amputate
further up the arm,
00:35:16.823 --> 00:35:19.116
so that on the chance that
they do lose their limb,
00:35:19.117 --> 00:35:22.077
either acutely, which is
sort of in the early stages
00:35:22.078 --> 00:35:23.954
from what\'s called
\"acute rejection\"
00:35:23.955 --> 00:35:27.958
or with chronic rejection,
where the vessels slowly,
00:35:27.959 --> 00:35:31.671
slowly fibrose up and we
have to remove the limb,
00:35:32.797 --> 00:35:33.797
we\'re not making
them anymore disabled
00:35:33.798 --> 00:35:34.798
than they were to start with.
00:35:34.799 --> 00:35:38.844
Obviously, that for
all of us is a tragedy.
00:35:38.845 --> 00:35:40.721
But we have to have it
in the back of our minds,
00:35:40.722 --> 00:35:43.223
because it\'s always
a possibility.
00:35:43.224 --> 00:35:45.184
Understanding all the
different risks is the key
00:35:45.185 --> 00:35:46.852
to being able to
determine whether
00:35:46.853 --> 00:35:48.729
or not you feel
comfortable with going
00:35:48.730 --> 00:35:51.232
through this kind of operation.
00:35:54.694 --> 00:35:56.987
- When a suitable
donor is identified,
00:35:56.988 --> 00:35:58.655
whose family has
expressed a willingness
00:35:58.656 --> 00:36:01.033
for that patient to
be an organ donor,
00:36:01.034 --> 00:36:02.368
the New England Organ Bank
00:36:02.369 --> 00:36:04.578
then evaluates the
patient initially,
00:36:04.579 --> 00:36:08.624
and then if that donor
meets certain criteria
00:36:08.625 --> 00:36:11.835
that are specific to Will,
they contact our program.
00:36:11.836 --> 00:36:14.421
- So, this is the one that
is clinical, not research,
00:36:14.422 --> 00:36:16.673
and we\'re just gonna
get going on these.
00:36:16.674 --> 00:36:19.051
- Alright.
00:36:19.052 --> 00:36:21.053
- And so literally, at the
New England Organ Bank,
00:36:21.054 --> 00:36:22.137
there\'s a list sitting there
00:36:22.138 --> 00:36:25.517
that now has Will\'s
name on it for arms.
00:36:28.812 --> 00:36:32.606
Transplantation is a lifelong
commitment to rehabilitation
00:36:32.607 --> 00:36:35.067
and to medication compliance.
00:36:35.068 --> 00:36:37.319
The ability for
someone to be grounded,
00:36:37.320 --> 00:36:39.446
and stable and,
actually, frankly,
00:36:39.447 --> 00:36:42.616
have a sense of humor about
things is incredibly important.
00:36:42.617 --> 00:36:44.828
So, Will really displays
all those things in spades.
00:36:47.205 --> 00:36:49.958
- This goes like that.
00:36:51.376 --> 00:36:52.168
How\'s that?
00:36:52.169 --> 00:36:53.752
- That\'s good.
00:36:53.753 --> 00:36:54.753
Okay.
00:36:57.006 --> 00:36:58.758
Aargh.
00:37:00.969 --> 00:37:02.052
- This way.
00:37:02.053 --> 00:37:04.179
- Yeah, I like that.
00:37:04.180 --> 00:37:06.974
- This is not a topic that
anybody else could joke about,
00:37:06.975 --> 00:37:10.436
but he can. And
he\'s using it as a humor
00:37:10.437 --> 00:37:12.939
that just breaks
down the barriers.
00:37:17.068 --> 00:37:19.027
- Will\'s comedy was one of
the things that helped him
00:37:19.028 --> 00:37:21.488
to get through a very
dark situation for him.
00:37:21.489 --> 00:37:24.575
It also allowed him to make a
connection with other people.
00:37:24.576 --> 00:37:26.535
Because when you
have a disability,
00:37:26.536 --> 00:37:28.120
people don\'t want
to talk about it.
00:37:28.121 --> 00:37:29.413
And if they do want
to talk about it,
00:37:29.414 --> 00:37:32.374
often they skirt
around the issues.
00:37:32.375 --> 00:37:35.377
Will\'s ability to take
humor to express himself
00:37:35.378 --> 00:37:38.213
and to make it okay to
talk about his disability
00:37:38.214 --> 00:37:41.175
was an incredibly liberating
experience for him.
00:37:41.176 --> 00:37:43.677
I think he also did an
incredible amount of good
00:37:43.678 --> 00:37:45.304
for the amputee community,
00:37:45.305 --> 00:37:47.682
because he brought
it out into the open.
00:37:52.145 --> 00:37:53.104
Sit, sit.
00:37:53.105 --> 00:37:54.856
Good girl. Stay.
00:37:55.315 --> 00:37:58.567
On a totally personal
level, I find it hilarious.
00:37:58.568 --> 00:38:02.529
I think his comedy is really
clever. It\'s very witty.
00:38:02.530 --> 00:38:04.239
And I love taking care of him,
00:38:04.240 --> 00:38:06.283
because he always comes
in with a new joke.
00:38:06.284 --> 00:38:09.204
- Raspberry syrup.
00:38:10.121 --> 00:38:10.914
- Oh, it\'s cold.
00:38:10.915 --> 00:38:13.333
- Is it too cold?
00:38:15.794 --> 00:38:17.044
We were gonna eat that.
00:38:17.045 --> 00:38:17.962
- I guess you\'re
not gonna eat it now.
00:38:17.963 --> 00:38:19.042
- Where\'s the black stuff?
00:38:55.625 --> 00:38:58.753
- I used to do so
much with my hands.
00:39:02.298 --> 00:39:05.259
I could play the violin.
I was a very good cook.
00:39:05.260 --> 00:39:06.594
I painted some.
00:39:07.804 --> 00:39:11.182
All these things came
to a pretty abrupt end.
00:39:18.273 --> 00:39:21.149
One of the things
that I\'m hoping for
00:39:21.150 --> 00:39:23.694
with getting the arm transplants
00:39:23.695 --> 00:39:27.991
is that I\'ll be able to
take back on, after a time,
00:39:28.408 --> 00:39:31.369
a lot of the things
that I\'ve lost.
00:39:32.328 --> 00:39:35.831
But as soon as I get the
arms, I will also have
00:39:35.832 --> 00:39:38.375
to go on
immunosuppressant drugs,
00:39:38.376 --> 00:39:41.169
which have potential
side effects:
00:39:41.170 --> 00:39:44.214
cancers, diabetes, heart disease
00:39:44.215 --> 00:39:46.593
and several chronic illnesses.
00:39:47.760 --> 00:39:51.221
Those are frightening prospects.
00:39:51.222 --> 00:39:54.434
I keep focused on
the positive things.
00:39:55.602 --> 00:39:58.812
I keep focused on
what I hope to gain.
00:39:58.813 --> 00:40:03.026
I can\'t wait to be able to
feel things with the arms,
00:40:03.901 --> 00:40:05.485
to be able to feel pressure,
00:40:05.486 --> 00:40:07.362
to maybe be able
to feel the wind,
00:40:07.363 --> 00:40:10.324
to be able to feel hot and cold.
00:40:10.325 --> 00:40:12.743
I\'ll be able to scratch
the back of my head.
00:40:12.744 --> 00:40:16.831
I\'ll be able to pull my shirt
down if it rides up in back.
00:40:24.922 --> 00:40:28.384
I hope that I\'ll be able to put
on my leg prostheses myself.
00:40:33.389 --> 00:40:36.350
It would be fantastic,
for example,
00:40:36.351 --> 00:40:38.645
if I could do my own laundry.
00:40:42.357 --> 00:40:45.860
I most hope to
gain independence.
00:40:47.445 --> 00:40:49.488
Then, maybe I\'ll be able
00:40:49.489 --> 00:40:53.451
to have a little less pressure
on Angel to help out so much.
00:40:57.163 --> 00:40:59.873
- I don\'t know that having
to take immunosuppressants
00:40:59.874 --> 00:41:02.626
for the rest of your life
is the greatest thing.
00:41:02.627 --> 00:41:06.631
If it were my body, I
probably wouldn\'t do it.
00:41:09.467 --> 00:41:12.053
But I stand behind his decision.
00:41:14.889 --> 00:41:17.475
I\'m there to help him through it.
00:41:25.441 --> 00:41:30.613
And I hope everything comes
out well in the end.
00:41:31.948 --> 00:41:34.158
But I\'m also worried about
00:41:37.495 --> 00:41:41.624
that it might cause more
of a mess than anything.
00:41:42.959 --> 00:41:47.004
Rejection episodes is not
something that either one
00:41:47.839 --> 00:41:49.172
of us are keen on.
00:41:49.173 --> 00:41:52.509
So, having to be
reamputated would
00:41:52.510 --> 00:41:56.472
probably be a little
bit of a difficult blow.
00:41:58.683 --> 00:42:00.767
There are a lot of
things to consider.
00:42:00.768 --> 00:42:04.897
In the end, you couldn\'t ever
deny somebody the ability
00:42:05.732 --> 00:42:07.567
to touch again with hands.
00:42:09.819 --> 00:42:11.654
- Help me up.
00:42:21.122 --> 00:42:22.248
Okay, I\'m up.
00:42:31.591 --> 00:42:34.301
- Yeah, I can feel it,
but not as much
00:42:34.302 --> 00:42:37.513
as up here, down here.
00:42:38.723 --> 00:42:39.723
Here\'s more sensitive.
00:42:39.724 --> 00:42:40.724
Here\'s not as sensitive.
00:42:40.725 --> 00:42:42.976
Here\'s more sensitive.
That tickles.
00:42:42.977 --> 00:42:45.687
I describe it like this.
00:42:45.688 --> 00:42:49.650
When I met my wife, when we
held hands it was electric.
00:42:50.985 --> 00:42:51.944
It was likes sparks
went through my body,
00:42:51.945 --> 00:42:53.278
but it was really awesome.
00:42:53.279 --> 00:42:57.115
Well, there\'s a time,
about a year and a half,
00:42:57.116 --> 00:42:58.742
when I started
getting some feeling,
00:42:58.743 --> 00:43:00.827
that whenever you touched
me it was like that.
00:43:00.828 --> 00:43:03.747
It was unbelievable.
It was electric, but it was good.
00:43:03.748 --> 00:43:04.790
When somebody grabbed my hands,
00:43:04.791 --> 00:43:05.916
it was like electricity
went right through me,
00:43:05.917 --> 00:43:07.751
but it was really cool.
00:43:07.752 --> 00:43:09.669
I just wanted a finger, so
I could scratch my nose
00:43:09.670 --> 00:43:11.296
and scratch my face.
00:43:11.297 --> 00:43:13.298
I mean, you put that hook
on your face to do this.
00:43:13.299 --> 00:43:15.510
- It\'s ridiculous, yeah.
00:43:16.844 --> 00:43:19.346
Yeah, if I have an itch down
here it takes me ten minutes.
00:43:19.347 --> 00:43:20.639
- And people don\'t understand
what can you do with your hands.
00:43:20.640 --> 00:43:21.682
This is huge.
00:43:22.767 --> 00:43:26.687
If I could do that, I would
do anything to do that.
00:43:27.814 --> 00:43:29.982
I just wanted a
finger, just a finger.
00:43:30.817 --> 00:43:32.150
The whole thing about it is,
00:43:32.151 --> 00:43:33.860
you wanna get the arms
to get it over with.
00:43:33.861 --> 00:43:37.614
So, the waiting was a year,
and that was terrible,
00:43:37.615 --> 00:43:40.909
because now that you have
your life that you are living,
00:43:40.910 --> 00:43:42.869
and so you accepted
where you are
00:43:42.870 --> 00:43:43.995
and you\'re going forward.
00:43:43.996 --> 00:43:45.747
Now, you\'re gonna wait for arms,
00:43:45.748 --> 00:43:47.959
so you kinda stopped life
00:43:49.460 --> 00:43:52.337
because now you wanna
start it again with arms.
00:43:52.338 --> 00:43:53.256
- No regrets?
00:43:53.257 --> 00:43:54.548
- For me, it\'s worth it.
00:43:54.549 --> 00:43:56.049
Yeah, it\'s always a
concern on my mind
00:43:56.050 --> 00:43:59.010
that I would not like to
be taking the medication.
00:43:59.011 --> 00:44:01.931
Don\'t forget, I learned
how to live without them.
00:44:24.161 --> 00:44:26.873
- 52 feet, 3 inches.
00:44:29.584 --> 00:44:32.711
Will\'s transition was a
shattering of identity for him,
00:44:32.712 --> 00:44:36.715
but also for me in that
I always thought of Will
00:44:36.716 --> 00:44:39.886
as myself who had
different experiences.
00:44:41.012 --> 00:44:42.846
To have him so radically changed
00:44:42.847 --> 00:44:46.475
in this traumatic way
was shocking for me.
00:44:50.187 --> 00:44:52.814
To some degree, that
fear of losing him
00:44:52.815 --> 00:44:57.028
still sort of echoes through
my relationship with him.
00:45:09.749 --> 00:45:10.833
Good balance.
00:45:14.128 --> 00:45:15.921
Good balance.
00:45:15.922 --> 00:45:18.382
You\'re getting better every day.
00:45:20.384 --> 00:45:23.011
Before Will got sick, I maybe
talked with him once a week
00:45:23.012 --> 00:45:26.806
or twice a week or something,
and since he\'s gotten sick,
00:45:26.807 --> 00:45:29.434
I call him most every day.
00:45:29.435 --> 00:45:34.231
That connection has been
really important for me.
00:45:37.360 --> 00:45:40.236
I accompanied Will
on his first visit
00:45:40.237 --> 00:45:42.448
to meet the surgical team.
00:45:44.575 --> 00:45:47.077
This is really an
extraordinary opportunity
00:45:47.078 --> 00:45:51.206
for Will to regain a lot of
function and independence
00:45:51.207 --> 00:45:55.044
that he hasn\'t had for
the last three years.
00:45:58.547 --> 00:46:02.634
It\'s a huge investment by the
hospital and the surgical team
00:46:02.635 --> 00:46:06.806
to go for this procedure,
to put anyone through it.
00:46:08.057 --> 00:46:11.476
And Will would ideally and
ultimately benefit from this,
00:46:11.477 --> 00:46:15.188
but it\'s also a huge
sacrifice on his part,
00:46:15.189 --> 00:46:18.233
to essentially,
- To subject himself.
00:46:18.234 --> 00:46:22.446
- put himself on the altar of science
and medicine, and say,
00:46:23.698 --> 00:46:26.575
\"Okay, I\'m willing to
risk it all for this.\"
00:46:31.956 --> 00:46:33.999
But the one thing
that was, I think,
00:46:34.000 --> 00:46:37.253
really courageous and
idealistic of Will
00:46:37.753 --> 00:46:39.587
is that
00:46:39.588 --> 00:46:43.801
right from the get go, one of the
first questions he asked was,
00:46:44.802 --> 00:46:47.013
\"Can you learn from this?\"
00:46:47.888 --> 00:46:51.099
They said, \"Well, we learn with it.
00:46:51.100 --> 00:46:55.312
\"Every one of these we
do, we learn something.\"
00:46:57.648 --> 00:46:58.690
And that was it.
00:46:58.691 --> 00:47:00.192
That was enough for Will.
00:47:08.242 --> 00:47:09.160
- Is that okay?
00:47:09.161 --> 00:47:10.452
- Mm-hmm.
00:47:10.453 --> 00:47:12.620
- You don\'t feel like
you are getting choked?
00:47:12.621 --> 00:47:13.414
- No.
00:47:13.415 --> 00:47:17.959
- Okay, then
00:47:17.960 --> 00:47:19.253
15 it is.
00:47:32.224 --> 00:47:33.392
- That\'s better.
00:47:44.195 --> 00:47:45.653
- Will, you are widely known
00:47:45.654 --> 00:47:48.531
as a talented filmmaker
and film professor.
00:47:48.532 --> 00:47:52.327
Little aside here, Will
was the graduate assistant
00:47:52.328 --> 00:47:53.661
to Saul Bellow.
00:47:53.662 --> 00:47:56.456
- No, I was his
executive secretary.
00:47:56.457 --> 00:47:57.457
- Executive secretary
00:47:57.458 --> 00:47:58.875
to Saul Bellow.
00:47:58.876 --> 00:48:00.460
I was told earlier that the
00:48:00.461 --> 00:48:03.338
very best recommendation
ever written for anyone
00:48:03.339 --> 00:48:05.256
to get into our graduate
program was written
00:48:05.257 --> 00:48:08.134
by Saul Bellow on Will\'s behalf.
00:48:08.135 --> 00:48:09.427
But you\'ve kept fighting.
00:48:09.428 --> 00:48:10.970
You fought for two
arm transplants,
00:48:10.971 --> 00:48:13.932
and we know as soon as you
get to return to filming,
00:48:13.933 --> 00:48:15.266
you\'ll fight to
make your next piece
00:48:15.267 --> 00:48:17.644
as riveting as the last.
00:48:17.645 --> 00:48:19.437
Even now, you\'re pursuing the arts
00:48:19.438 --> 00:48:22.941
as a comedian, raising
awareness about disabilities.
00:48:22.942 --> 00:48:25.360
We are honored to present
you, Will Lautzenheiser,
00:48:25.361 --> 00:48:28.113
with a Boston University
College of Communication
00:48:28.114 --> 00:48:29.990
Distinguished Alumnus Award.
00:48:36.372 --> 00:48:37.664
- I hope you don\'t
mind that I\'ll sit here
00:48:37.665 --> 00:48:38.791
for my remarks.
00:48:40.209 --> 00:48:42.877
Of course, I had no
expectation that I might get
00:48:42.878 --> 00:48:44.379
to this award a little sooner
00:48:44.380 --> 00:48:47.508
than I might have
originally planned,
00:48:49.009 --> 00:48:52.805
and not for anything that
had to do with my work,
00:48:54.014 --> 00:48:56.474
in particular, but for
this unfortunate event.
00:48:56.475 --> 00:48:57.767
My advice?
00:48:57.768 --> 00:48:59.435
Keep focusing on
what\'s important.
00:48:59.436 --> 00:49:02.397
For me, that\'s now looking
ahead to these transplants
00:49:02.398 --> 00:49:04.566
which could come at any time.
00:49:04.567 --> 00:49:05.775
That\'s true for
everyone, though.
00:49:05.776 --> 00:49:08.153
You never know when
a call might come in
00:49:08.154 --> 00:49:10.238
that changes you forever.
00:49:10.239 --> 00:49:14.451
So, do your work and
keep a positive attitude.
00:49:15.119 --> 00:49:16.452
I want to thank my family—
00:49:16.453 --> 00:49:18.663
my parents are here—
and my partner Angel, most of all.
00:49:18.664 --> 00:49:20.874
And I wouldn\'t
have been able to get through
00:49:20.875 --> 00:49:23.377
any of this without him
00:49:24.587 --> 00:49:26.629
and without this whole
community of people.
00:49:26.630 --> 00:49:29.466
Thank you.
00:49:41.979 --> 00:49:46.192
I feel, right now, that I\'m
not quite yet in a place
00:49:47.484 --> 00:49:50.654
where I can be an
effective teacher.
00:49:52.448 --> 00:49:56.618
Could I make a go of fitting
into this context again
00:49:56.619 --> 00:49:58.661
after being kind of
wrenched out from it
00:49:58.662 --> 00:50:00.956
in such a horrible fashion?
00:50:03.292 --> 00:50:05.084
It\'s something that
I would really love
00:50:05.085 --> 00:50:08.881
to be able to do again.
And being here today
00:50:09.548 --> 00:50:11.049
really brings that home
00:50:11.050 --> 00:50:14.345
and brings up all
those feelings again.
00:50:19.350 --> 00:50:20.434
I don\'t know.
00:50:46.585 --> 00:50:47.835
I\'m nervous.
00:50:47.836 --> 00:50:50.129
I\'m feeling a
little bit of shock,
00:50:50.130 --> 00:50:52.632
because I\'ve settled into a routine
00:50:52.633 --> 00:50:54.717
of going about my
life other ways.
00:50:54.718 --> 00:50:57.554
And then the call comes
in, and we\'re jumping.
00:51:16.490 --> 00:51:18.866
- There are risks involved
in any type of surgery.
00:51:18.867 --> 00:51:20.952
Those include bleeding,
include infection
00:51:20.953 --> 00:51:22.161
or potentially death.
00:51:22.162 --> 00:51:23.830
- Yes.
00:51:23.831 --> 00:51:27.250
- These are not things that we
expect by any stretch at all.
00:51:27.251 --> 00:51:29.961
We tell them to you in the
spirit of full disclosure.
00:51:29.962 --> 00:51:31.629
Is there anything that
I can answer for you
00:51:31.630 --> 00:51:33.632
based on what I\'ve gone over?
00:51:34.717 --> 00:51:35.883
- Where do I sign?
00:51:35.884 --> 00:51:38.012
- Okay, good question.
00:51:49.606 --> 00:51:53.234
- To think that
someone will be dying
00:51:53.235 --> 00:51:55.611
for this is not an easy thought.
00:51:55.612 --> 00:51:59.407
This is an individual
who has a family
00:51:59.408 --> 00:52:02.994
going through a
tremendously difficult time.
00:52:02.995 --> 00:52:07.166
And all I can hope for is that
they will consider this a way
00:52:08.751 --> 00:52:12.880
for their loved one to make
a huge difference for me.
00:52:17.259 --> 00:52:18.968
I just really want to say,
\"Thank you all\"
00:52:18.969 --> 00:52:21.137
\"for treating me and for being here.\"
00:52:21.138 --> 00:52:25.351
This is, obviously, a
tremendous impact on my life,
00:52:26.185 --> 00:52:28.854
and I hope for all good things.
00:52:32.066 --> 00:52:34.400
And I am extremely
grateful for you
00:52:34.401 --> 00:52:37.278
to be here as my care team,
00:52:37.279 --> 00:52:40.698
all of you, those I know
and those I don\'t know.
00:52:40.699 --> 00:52:42.950
Thank you.
00:52:42.951 --> 00:52:44.912
- We\'ll take good care of you, Will.
00:52:51.752 --> 00:52:52.752
- Now I\'m gonna have you
00:52:52.753 --> 00:52:54.587
take nice deep breaths.
00:52:54.588 --> 00:52:56.757
You just want to fill those
lungs up completely.
00:53:02.930 --> 00:53:04.305
- Communication is critical.
00:53:04.306 --> 00:53:06.015
It\'s a little dramatic to
say we run a stopwatch,
00:53:06.016 --> 00:53:08.643
but we actually say, \"Okay, go,\"
00:53:08.644 --> 00:53:10.853
and both teams start
at the same time.
00:53:10.854 --> 00:53:13.315
- Go, go, go, go, go.
00:53:15.567 --> 00:53:16.984
- All right, guys.
Just to give you a heads up
00:53:16.985 --> 00:53:18.945
with the other team.
00:53:18.946 --> 00:53:21.489
The arms are ready, but they
have to do the osteotomy
00:53:21.490 --> 00:53:24.158
and the ligation, which they
are estimating at 20 minutes.
00:53:24.159 --> 00:53:26.953
And they need a
30 minute heads up
00:53:26.954 --> 00:53:28.079
to get the attendings
back in the room.
00:53:28.080 --> 00:53:29.581
- Okay.
00:53:32.084 --> 00:53:34.752
- The moment we detach the
tissues from the donor,
00:53:34.753 --> 00:53:37.881
we have four hours
to reconnect them.
00:53:40.134 --> 00:53:41.342
- Once those limbs do arrive,
00:53:41.343 --> 00:53:43.636
we identify the various
structures in both Will
00:53:43.637 --> 00:53:45.555
and in the donor limb,
00:53:45.556 --> 00:53:49.768
bones, nerves, muscles
and tendons, and so on.
00:53:50.936 --> 00:53:53.105
And then we hook them
up one at a time.
00:53:54.731 --> 00:53:58.277
Got superficial radial PIN,
ulnar nerve, vascular structures.
00:54:00.988 --> 00:54:04.198
We can only go so long
before we deprive the limb
00:54:04.199 --> 00:54:06.159
irreversibly of
various nutrients,
00:54:06.160 --> 00:54:09.579
and the way that we restore
that is by restoring blood flow.
00:54:09.580 --> 00:54:13.708
That\'s the most time-critical
aspect of the operation.
00:54:13.709 --> 00:54:16.169
- Under a microscope, we join up
the arteries with tiny microstitches
00:54:16.170 --> 00:54:20.256
that are about the size
of a human hair.
00:54:20.257 --> 00:54:22.467
- Once we open up
those blood vessels,
00:54:22.468 --> 00:54:25.511
you literally see the
hand pink up again.
00:54:25.512 --> 00:54:27.513
You can watch blood flow return,
00:54:27.514 --> 00:54:29.056
because you can see the color change.
00:54:29.057 --> 00:54:31.976
It goes from a very white
cadaveric appearance
00:54:31.977 --> 00:54:34.228
to the pink appearance
that we know
00:54:34.229 --> 00:54:36.063
as a healthy human being.
00:54:36.064 --> 00:54:38.191
That\'s a kind of
quasi-religious experience
00:54:38.192 --> 00:54:40.068
when you see it happen.
00:54:40.819 --> 00:54:42.613
It is, indeed.
00:54:45.199 --> 00:54:47.409
Exactly, well done.
00:55:09.681 --> 00:55:11.182
- Should we run through things?
00:55:11.183 --> 00:55:12.266
- Sure.
00:55:12.267 --> 00:55:14.268
- So, our major concern
at the moment is
00:55:14.269 --> 00:55:16.771
that he\'s got some
donor-specific antibodies,
00:55:16.772 --> 00:55:18.606
and the levels of
those have been rising.
00:55:18.607 --> 00:55:20.233
And so we\'ve been
plasmapheresing him to try
00:55:20.234 --> 00:55:22.151
and get rid of
antibodies in his system,
00:55:22.152 --> 00:55:24.320
but we want to make sure that
we\'re not missing an infection
00:55:24.321 --> 00:55:27.241
that is part of
this whole picture.
00:55:37.876 --> 00:55:39.294
- 98.5. Perfect.
00:55:55.978 --> 00:55:57.436
- Your white count is
a little bit up again.
00:55:57.437 --> 00:55:59.397
It\'s a really hard thing
to say exactly what that is,
00:55:59.398 --> 00:56:00.232
because nothing
else is coming up
00:56:00.233 --> 00:56:01.983
with any explanation for it.
00:56:01.984 --> 00:56:02.776
So, could it be the steroids?
00:56:02.777 --> 00:56:04.068
Sure.
00:56:04.069 --> 00:56:05.361
Could it be an infection?
00:56:05.362 --> 00:56:07.154
Possibly. But none of
the labs have come back
00:56:07.155 --> 00:56:10.534
with anything worrying
yet, which is good.
00:56:12.077 --> 00:56:16.206
I see nothing worrying about his
arms at all. It really looks pristine.
00:56:24.548 --> 00:56:26.633
It\'s amazing. Isn\'t it?
00:56:29.177 --> 00:56:30.761
- All right.
00:56:30.762 --> 00:56:31.680
- Looks good.
00:56:31.681 --> 00:56:33.389
- Looks good. You said it.
00:56:33.390 --> 00:56:34.932
We didn\'t even need to say it.
00:56:34.933 --> 00:56:36.267
These guys will come
back and change that side
00:56:36.268 --> 00:56:37.852
when all the
plasmapheresis is finished.
00:56:37.853 --> 00:56:38.645
Okay?
00:56:38.646 --> 00:56:40.438
- Very good.
00:56:40.439 --> 00:56:41.523
- See you guys.
00:57:11.345 --> 00:57:13.471
- From a surgical standpoint,
00:57:13.472 --> 00:57:15.848
we\'re looking at
a total success.
00:57:15.849 --> 00:57:19.560
The arm is well
vascularized, and in fact,
00:57:19.561 --> 00:57:23.774
we\'re ahead of schedule on
things like nail regrowth.
00:57:25.359 --> 00:57:28.069
My nails need trimming now,
and they weren\'t expecting
00:57:28.070 --> 00:57:31.280
to need that for another
two or three weeks.
00:57:31.281 --> 00:57:35.494
I have a really tiny bit of
sensation below the join line.
00:57:36.787 --> 00:57:40.456
So I can just begin to feel
the skin on the donor arm,
00:57:40.457 --> 00:57:42.249
which means my nerves
are already getting
00:57:42.250 --> 00:57:44.627
down there, slightly.
00:57:44.628 --> 00:57:46.462
- My goodness.
00:57:46.463 --> 00:57:48.714
- The way I\'m thinking
about the arms now is
00:57:48.715 --> 00:57:52.928
in a Joycean way, where Joyce
has a line in \"Ulysses\" about ...
00:57:54.179 --> 00:57:56.138
Stephen is on the
beach and he thinks
00:57:56.139 --> 00:57:59.100
about all of his borrowed
clothes and whatnot.
00:57:59.101 --> 00:58:01.227
And he says, \"Hismy sandal.\"
00:58:01.228 --> 00:58:04.647
\"Hismy\" is one word. H-I-S-M-Y.
00:58:04.648 --> 00:58:06.023
It just seems so apt.
00:58:06.024 --> 00:58:09.945
It\'s like these are my hands,
but they were/are his hands,
00:58:11.321 --> 00:58:13.364
and so they\'re hismy hands.
00:58:13.365 --> 00:58:15.074
Maybe all human
hands are beautiful,
00:58:15.075 --> 00:58:18.119
but these strike me as
especially beautiful.
00:58:18.120 --> 00:58:22.332
I am absolutely in awe
of this possibility,
00:58:23.667 --> 00:58:28.213
and I have so much hope that
it\'s gonna work out for me.
00:58:39.516 --> 00:58:41.225
- As with all transplants,
00:58:41.226 --> 00:58:43.686
procedures such as
this do not take place
00:58:43.687 --> 00:58:45.771
without the kindness
and the generosity
00:58:45.772 --> 00:58:48.399
of a donor and a donor family.
00:58:48.400 --> 00:58:50.359
As you\'ve already
heard in this case,
00:58:50.360 --> 00:58:52.570
a family suffering a deep
personal loss was able
00:58:52.571 --> 00:58:55.489
to say yes to this
donation request
00:58:55.490 --> 00:58:58.200
and give hope and
health to others.
00:58:58.201 --> 00:59:00.453
And we thank that family
for their selflessness
00:59:00.454 --> 00:59:03.664
and for the gifts that forever
changed the life of the strangers
00:59:03.665 --> 00:59:06.292
who they knew were
in great need.
00:59:06.293 --> 00:59:09.754
This weekend, the parents
of Will\'s donor provided
00:59:09.755 --> 00:59:12.798
to New England Organ
Bank a short message
00:59:12.799 --> 00:59:15.634
that they would like to
have passed on to Will.
00:59:15.635 --> 00:59:17.803
And they were willing
00:59:17.804 --> 00:59:21.849
to have us share that
publicly this morning.
00:59:21.850 --> 00:59:23.852
I hope I can read this.
00:59:27.564 --> 00:59:30.734
They wrote, \"Our son
gave the best hugs.
00:59:32.027 --> 00:59:35.781
\"We pray that you make
a wonderful recovery,
00:59:36.740 --> 00:59:38.491
\"and that your loved
ones will be able
00:59:38.492 --> 00:59:40.660
\"to enjoy your warm embrace.\"
00:59:42.120 --> 00:59:43.830
Thank you.
01:00:21.910 --> 01:00:23.577
- This is him,
01:00:23.578 --> 01:00:27.791
so this shouldn\'t feel
like anything different.
01:00:28.291 --> 01:00:29.583
Close your eyes.
01:00:29.584 --> 01:00:33.672
Well, we start at
the top of the graft.
01:00:34.172 --> 01:00:36.215
- That I feel.
01:00:36.216 --> 01:00:38.718
- What if I do it very soft?
01:00:41.137 --> 01:00:42.222
- Not really.
01:00:44.140 --> 01:00:47.726
I definitely feel
something there.
01:00:47.727 --> 01:00:49.520
- Good or bad?
01:00:49.521 --> 01:00:50.729
- It\'s just a sensation.
01:00:50.730 --> 01:00:52.899
It\'s not either good or bad.
01:00:54.401 --> 01:00:57.736
- How are you guys doing?
01:00:57.737 --> 01:00:58.988
- Do you wanna take that?
01:00:58.989 --> 01:01:01.491
- No.
01:01:02.742 --> 01:01:03.826
How am I doing?
01:01:03.827 --> 01:01:06.203
How are we doing?
- How are we doing
01:01:06.204 --> 01:01:10.125
with the schedule and
all the responsibilities?
01:01:11.835 --> 01:01:13.295
- How are we doing?
01:01:25.181 --> 01:01:27.182
- How hard was this for you
01:01:27.183 --> 01:01:28.809
to go through this?
01:01:28.810 --> 01:01:31.437
- How hard is it?
It\'s still hard.
01:01:31.438 --> 01:01:33.731
One way you can
explain it is that
01:01:33.732 --> 01:01:35.065
when someone has a child
01:01:35.066 --> 01:01:38.569
you might instantly
love that child.
01:01:38.570 --> 01:01:40.946
And that\'s how I kind
of felt about the hands,
01:01:40.947 --> 01:01:43.033
sort of like the newborn.
01:01:45.952 --> 01:01:48.829
- In some ways, I think
we are both growing
01:01:48.830 --> 01:01:51.625
in a way that we
didn\'t expect to.
01:01:54.711 --> 01:01:58.255
- I feel like a newborn,
haplessly moving around
01:01:58.256 --> 01:02:01.592
through space and
trying to reintegrate,
01:02:01.593 --> 01:02:04.095
and doing it rather fumblingly.
01:02:08.975 --> 01:02:11.685
I certainly had
other ideas about
01:02:11.686 --> 01:02:15.356
what my life might look like
01:02:15.357 --> 01:02:19.193
and what my life might
be like with Angel.
01:02:19.194 --> 01:02:23.113
And it didn\'t involve spending
01:02:23.114 --> 01:02:25.866
so much time in the hospital
01:02:25.867 --> 01:02:29.871
and losing most
of my independence.
01:02:32.207 --> 01:02:35.125
But all you can
really do is say,
01:02:35.126 --> 01:02:37.127
\"Well, this happened.\"
01:02:37.128 --> 01:02:40.673
And if we\'re gonna
try to make this work,
01:02:40.674 --> 01:02:44.886
then we kind of have to just
move beyond that feeling.
01:02:52.143 --> 01:02:53.852
- You guys have wrapped
those beautifully.
01:02:53.853 --> 01:02:56.063
- Angel has really
been practicing.
01:02:56.064 --> 01:02:58.023
- He\'s clearly doing a good
job, because I can already see
01:02:58.024 --> 01:03:00.442
that your swelling has come
down a lot since I last saw you.
01:03:00.443 --> 01:03:01.653
- Yes, it has.
01:03:03.321 --> 01:03:05.114
- Whenever we transplant
a limb onto somebody,
01:03:05.115 --> 01:03:06.865
probably the biggest thing
that we worry about is
01:03:06.866 --> 01:03:08.242
rejection of the limbs.
01:03:08.243 --> 01:03:09.576
And we educate our
patients to look
01:03:09.577 --> 01:03:10.953
for the signs of rejection,
01:03:10.954 --> 01:03:13.580
which most commonly are a rash.
01:03:13.581 --> 01:03:15.833
In Will\'s case, when he
did show a skin rash,
01:03:15.834 --> 01:03:17.584
and we did notice it
was an early rejection,
01:03:17.585 --> 01:03:20.045
we treated him with
some strong drugs.
01:03:20.046 --> 01:03:24.258
Fortunately, those things
all were very simply treated.
01:03:24.259 --> 01:03:26.719
Nail folds are very sensitive
to any signs of rejection.
01:03:26.720 --> 01:03:29.513
They look absolutely fine.
01:03:29.514 --> 01:03:32.182
Suddenly, you\'ve got a new arm
that has no sensation
01:03:32.183 --> 01:03:33.143
for a period of time,
01:03:33.144 --> 01:03:35.310
and that you don\'t
have much control over.
01:03:35.311 --> 01:03:37.855
And so you actually
become less capable
01:03:37.856 --> 01:03:40.357
for those few months
after surgery.
01:03:40.358 --> 01:03:42.276
These muscles power this joint.
01:03:42.277 --> 01:03:44.361
These muscles power this joint.
01:03:44.362 --> 01:03:45.280
- Okay.
01:03:45.281 --> 01:03:46.655
- These muscles power some of the
01:03:46.656 --> 01:03:49.283
small finger joints, that move them apart.
01:03:49.284 --> 01:03:50.868
One of the things
01:03:50.869 --> 01:03:54.163
that makes an arm functional is
nerves reaching their targets.
01:03:54.164 --> 01:03:56.206
When your nerve has to grow from
the upper arm all the way
01:03:56.207 --> 01:03:58.208
to the hand, it
takes a long time.
01:03:58.209 --> 01:03:59.752
A millimeter a day
is around about
01:03:59.753 --> 01:04:02.296
what we say a nerve grows,
and so it takes a long time
01:04:02.297 --> 01:04:03.964
for it to get down there.
01:04:03.965 --> 01:04:06.175
- And that can take years
in certain circumstances.
01:04:06.176 --> 01:04:09.303
So, over time, as the nerves
recover and as the muscles
01:04:09.304 --> 01:04:10.846
and tendons recover,
01:04:10.847 --> 01:04:14.099
we tend to witness
increasing function.
01:04:14.100 --> 01:04:15.434
But in order to
achieve that function,
01:04:15.435 --> 01:04:19.647
people need to do, for the most
part, lifelong hand therapy.
01:04:20.940 --> 01:04:23.233
And it\'s really intense
in the initial phases.
01:04:23.234 --> 01:04:26.236
We are talking in the order
of seven to eight hours a day
01:04:26.237 --> 01:04:29.364
for several months, acutely.
And then it tapers off
01:04:29.365 --> 01:04:32.494
as time goes by.
But that\'s a huge investment.
01:04:33.661 --> 01:04:35.788
- It only takes about
three days for the brain
01:04:35.789 --> 01:04:38.248
to forget how to do an activity.
01:04:38.249 --> 01:04:40.542
- Oh, no.
- Only three days.
01:04:40.543 --> 01:04:43.253
So that\'s why bodybuilders
01:04:43.254 --> 01:04:46.924
really have to do their
exercises every single day.
01:04:46.925 --> 01:04:49.468
Lift up, lift up, lift
up. You did though.
01:04:49.469 --> 01:04:51.804
Go, go, go. You can do it.
You can do it. You can do it.
01:04:51.805 --> 01:04:52.805
Good job.
01:04:57.227 --> 01:04:58.603
Whack.
01:05:00.480 --> 01:05:02.481
- That\'s the reason to get arms.
01:05:02.482 --> 01:05:05.818
It\'s to be able to slap people.
- That\'s right.
01:05:05.819 --> 01:05:09.238
- Part of what we do is
trying to get the brain
01:05:09.239 --> 01:05:11.615
to reassimilate
the motions again,
01:05:11.616 --> 01:05:13.408
because for many years now,
01:05:13.409 --> 01:05:15.828
the brain didn\'t have
this type of movement.
01:05:15.829 --> 01:05:20.041
So, we have to retrain the
brain to learn how to move.
01:05:20.708 --> 01:05:22.042
- Look at my fingers.
01:05:22.043 --> 01:05:23.669
- Yes, you can go
hitchhiking now.
01:05:23.670 --> 01:05:25.546
- Yeah, thumbs up.
01:05:25.547 --> 01:05:27.756
- And then down.
01:05:27.757 --> 01:05:29.049
You\'re still going up.
01:05:29.050 --> 01:05:30.051
Okay, relax.
01:05:34.139 --> 01:05:37.349
- As people recover, as nerves
heal, they start to pick up
01:05:37.350 --> 01:05:41.563
on the vibration and hot/cold first.
So, if you wanna go
01:05:43.064 --> 01:05:44.481
right along that area
and see if Will feels it,
01:05:44.482 --> 01:05:46.525
that would be great.
01:05:46.526 --> 01:05:47.485
Do you feel any of that?
01:05:47.486 --> 01:05:49.778
- Yes, especially there.
01:05:49.779 --> 01:05:51.572
- Good.
01:05:51.573 --> 01:05:54.449
Steve, I\'ll have you switch over,
so we\'ll get both sides.
01:05:54.450 --> 01:05:55.909
Will, you\'re feeling
all that vibration?
01:05:55.910 --> 01:05:57.161
- Pretty well.
01:05:57.162 --> 01:05:59.454
Actually, Steve, the
most is, come back down.
01:05:59.455 --> 01:06:01.331
Yeah, there is the most.
01:06:01.332 --> 01:06:02.332
- Nice.
01:06:15.722 --> 01:06:19.934
- He\'s just so happy when
he can do stuff like that.
01:06:21.144 --> 01:06:24.522
People are so excited
to see his progress.
01:06:27.066 --> 01:06:31.070
I think he likes that people
are rooting for him.
01:06:33.156 --> 01:06:35.158
- Slow and easy.
01:06:36.576 --> 01:06:40.330
Just push together.
Push together. Push together.
01:06:40.830 --> 01:06:42.289
Push together.
01:06:42.290 --> 01:06:44.833
Push together. Push together.
Push together.
01:06:44.834 --> 01:06:46.711
Oh, you have it on you now.
01:06:47.629 --> 01:06:48.837
Would you be able to?
01:06:48.838 --> 01:06:50.589
No, okay.
01:06:50.590 --> 01:06:53.634
- I remember the day
he looked at his arms,
01:06:53.635 --> 01:06:56.763
and said, \"Steve,
I have goosebumps.\"
01:07:03.519 --> 01:07:04.729
I got goosebumps.
01:07:07.774 --> 01:07:11.277
- Now, remember my
hand is there, okay?
01:07:14.239 --> 01:07:15.073
Strong.
01:07:15.074 --> 01:07:16.657
- This is no good.
01:07:16.658 --> 01:07:17.699
Sorry.
01:07:17.700 --> 01:07:19.410
All right.
01:07:21.663 --> 01:07:23.330
- Good job. Easy does it.
01:07:23.331 --> 01:07:24.874
There you go. Hold on.
01:07:30.588 --> 01:07:32.590
- Try that again.
01:07:35.134 --> 01:07:37.469
- Keep holding. Keep holding.
Keep holding.
01:07:37.470 --> 01:07:41.683
As you come down, keep holding.
Keep holding. Keep holding.
01:07:43.142 --> 01:07:44.727
Excellent. Good job.
01:07:45.728 --> 01:07:47.104
Concentration.
01:07:47.105 --> 01:07:48.438
There.
01:07:48.439 --> 01:07:51.692
Wonderful. That\'s
your Jenga skill here.
01:07:51.693 --> 01:07:52.776
All right.
01:07:52.777 --> 01:07:56.655
- I\'m probably not ever
gonna be a Jenga master,
01:07:56.656 --> 01:07:58.741
but whatever.
01:08:02.370 --> 01:08:04.288
- One thing that\'s been restored
01:08:04.289 --> 01:08:07.624
as part of the surgery is
not just Will having arms,
01:08:07.625 --> 01:08:10.877
but it was therapeutic for me.
01:08:10.878 --> 01:08:14.464
The door is open for
really great things
01:08:14.465 --> 01:08:18.510
for Will, and that\'s been
restabilizing for me.
01:08:18.511 --> 01:08:22.056
- Now there\'s a new
living room under there.
01:08:23.933 --> 01:08:26.143
- I feel like the road is ahead,
01:08:26.144 --> 01:08:28.938
and Will can choose
where he goes.
01:08:32.817 --> 01:08:35.902
- I\'m looking into
my crystal ball.
01:08:35.903 --> 01:08:38.280
Will I get it into
the basket or not?
01:08:38.281 --> 01:08:39.906
- Yes.
01:08:39.907 --> 01:08:40.907
- Doubtful.
01:08:41.743 --> 01:08:42.952
- Yay.
01:08:44.037 --> 01:08:45.037
- Hurrah.
01:08:46.998 --> 01:08:48.875
Okay, there\'s one.
01:10:03.282 --> 01:10:06.576
- Well, when we spoke to
you last you also said,
01:10:06.577 --> 01:10:09.371
\"You know, maybe I\'ll
go for the legs too,
01:10:09.372 --> 01:10:12.332
\"a double-leg transplant.\"
01:10:12.333 --> 01:10:16.546
- Yes. With all the commitment
to the arms,
01:10:17.380 --> 01:10:18.672
I had been thinking lately,
01:10:18.673 --> 01:10:21.633
well, maybe it\'s okay
to wait on the legs.
01:10:21.634 --> 01:10:25.847
Maybe I don\'t need to
spend most of my
40s in the hospital.
01:10:27.140 --> 01:10:30.517
But then, about two
weeks ago,
I was transferring
01:10:30.518 --> 01:10:34.731
to my shower bench,
and I just had a
thought,
01:10:36.023 --> 01:10:39.026
\"Maybe, if we want to revisit
that, it might be time.\"
01:10:40.611 --> 01:10:44.198
And oddly, later that day,
one of my doctors called
01:10:45.199 --> 01:10:47.325
and said, \"We\'ve been
thinking about this.\"
01:10:47.326 --> 01:10:49.744
\"And maybe you want to reconvene
01:10:49.745 --> 01:10:53.623
\"and start having a
discussion about it?\"
01:10:53.624 --> 01:10:54.958
- Angel, how do you feel
about that?
01:10:54.959 --> 01:10:57.377
That would be several more years
01:10:57.378 --> 01:11:00.798
of this hard daily
work and caregiving.
01:11:02.175 --> 01:11:06.095
- It\'s scary in many ways,
because he\'s got arms now.
01:11:07.180 --> 01:11:08.430
So, we\'re now putting the arms
01:11:08.431 --> 01:11:11.224
in maybe a compromised position
01:11:11.225 --> 01:11:12.893
if things don\'t go well,
01:11:12.894 --> 01:11:15.896
and we don\'t want to lose that.
01:11:15.897 --> 01:11:18.982
- I\'ve come so far with
the arms, and for me,
01:11:18.983 --> 01:11:23.196
this surgery was
absolutely the right thing.
01:11:24.530 --> 01:11:26.615
The question of legs is kind of
up in the air right now,
01:11:26.616 --> 01:11:30.828
in part, because the surgery
is very, very experimental,
01:11:31.829 --> 01:11:33.915
so the risks are greater.
01:11:34.999 --> 01:11:37.835
Yet, there\'s something
very alluring
01:11:39.754 --> 01:11:43.174
about the possibility
of being restored.