00:00:14,333 --> 00:00:18,416
Rob and Marie, it is so lovely
to be here with both of you today.
2
00:00:18,416 --> 00:00:20,166
It's great to be here with you, Jillian.
3
00:00:20,166 --> 00:00:21,166
Thank you. Great to be here as well.
4
00:00:21,333 --> 00:00:24,375
I'm so excited and looking
forward to this conversation.
5
00:00:24,500 --> 00:00:25,625
I'm going to start –
6
00:00:25,666 --> 00:00:29,625
before we get into why it's
the two of you here together –
7
00:00:29,625 --> 00:00:35,041
I want to start by asking each of you a
little bit about your journey to medicine.
8
00:00:35,083 --> 00:00:37,416
How it is that each of you
came to be doing
9
00:00:37,458 --> 00:00:40,083
what you were doing
before the part of the story
10
00:00:40,125 --> 00:00:42,125
that we're going to
talk about in a little bit.
11
00:00:42,166 --> 00:00:43,916
And Rob, maybe I'll start with you.
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00:00:44,000 --> 00:00:45,083
Sure.
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00:00:45,125 --> 00:00:50,875
I mean, I didn't start out in
university to pursue medicine at all.
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00:00:50,958 --> 00:00:54,416
I started in biology
and then got a little bit
15
00:00:54,458 --> 00:00:57,583
turned off by courses in insect biology.
16
00:00:57,625 --> 00:01:00,625
And so, I switched to psychology
and finished up in psychology.
17
00:01:00,625 --> 00:01:04,333
And then I got this idea that
maybe I would pursue psychiatry.
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00:01:04,875 --> 00:01:10,791
And I liked it very much, and right up
until my fourth year of medical school,
19
00:01:10,833 --> 00:01:15,958
psychiatry was going to
be my avenue to pursue.
20
00:01:15,958 --> 00:01:19,125
And then I did my surgery
rotation, and I knew I would like it,
21
00:01:19,125 --> 00:01:21,791
but I didn't know I
would absolutely love it.
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00:01:22,000 --> 00:01:27,666
So when I applied to
post-graduate training,
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00:01:27,708 --> 00:01:30,416
it was just straight surgery in those days
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00:01:30,458 --> 00:01:32,666
And so, I had to do a
little bit of tap dancing
25
00:01:32,666 --> 00:01:35,375
because I'd done all my
elective time in psychiatry
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00:01:35,375 --> 00:01:39,041
and had to convince them that
I truly wanted to be a surgeon.
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00:01:39,041 --> 00:01:40,250
And it worked out.
28
00:01:40,250 --> 00:01:43,583
And I just love what I do.
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00:01:43,625 --> 00:01:48,583
And then urology seemed like it
was the happiness business in surgery.
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00:01:48,583 --> 00:01:52,708
And I've enjoyed every day of
my career from that day to this.
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00:01:53,250 --> 00:01:54,291
Marie, how about you?
32
00:01:54,333 --> 00:01:56,750
Respirology. How did you
end up doing what you do?
33
00:01:56,750 --> 00:01:59,750
Yeah, good question.
34
00:01:59,791 --> 00:02:02,916
So, I studied biochemistry in undergrad
35
00:02:02,958 --> 00:02:07,250
but with a vision of going
to medicine or research.
36
00:02:07,291 --> 00:02:09,833
I was always thinking of both.
37
00:02:09,875 --> 00:02:12,791
So, it was a very happy
day when I got into medicine.
38
00:02:12,791 --> 00:02:16,791
I studied medicine in Montreal in
French at Université de Montréal,
39
00:02:16,833 --> 00:02:19,625
and then I went on to
do my internal medicine,
40
00:02:19,625 --> 00:02:21,750
not knowing really what I wanted to do.
41
00:02:21,791 --> 00:02:24,291
In fact, I thought I wanted
to do endocrinology,
42
00:02:24,291 --> 00:02:27,000
and I had done several research projects
43
00:02:27,000 --> 00:02:30,416
and had really gone and kind
of invested a lot in endocrinology.
44
00:02:30,458 --> 00:02:36,541
And then, once I started doing my rotation
and I landed on my respirology rotation,
45
00:02:36,583 --> 00:02:40,208
I was really taken with
the people in respirology.
46
00:02:40,208 --> 00:02:44,875
Like the respirologist, and also
the patients, it just felt like home,
47
00:02:44,916 --> 00:02:47,208
and I could see myself doing that.
48
00:02:47,208 --> 00:02:54,583
So, it was a maybe a smaller
switch than psychiatry to urology,
49
00:02:54,625 --> 00:02:57,958
but it was a pretty clear
switch for me to respirology.
50
00:02:58,000 --> 00:02:59,333
I sort of found my people,
51
00:02:59,333 --> 00:03:02,583
and then I came here to Toronto
to do the respirology training.
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00:03:03,041 --> 00:03:06,875
So, I want to move now
to talk about the snake bite:
53
00:03:06,916 --> 00:03:09,000
the snake bite that set
everything in motion.
54
00:03:09,041 --> 00:03:11,000
And Rob, I'm going to
ask you to begin there.
55
00:03:11,291 --> 00:03:16,916
Okay. Well, I went to visit
my daughter in Singapore.
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00:03:16,958 --> 00:03:20,916
She was doing a term away, which
was very much part of the culture
57
00:03:20,958 --> 00:03:23,041
at McGill University
where she was studying
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00:03:23,083 --> 00:03:24,875
to go away for a term in third year.
59
00:03:24,875 --> 00:03:27,791
And so, I wanted to make sure
that she was getting settled well.
60
00:03:27,791 --> 00:03:29,375
And about six weeks into it,
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00:03:29,416 --> 00:03:32,333
I said, "Sarah, I'm coming
for a week to visit you."
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00:03:32,375 --> 00:03:35,500
And she said, "Dad, we're not staying
in Singapore. We're going to Bangkok."
63
00:03:35,916 --> 00:03:39,166
And I said, "Oh, okay, well,
I'll make all the arrangements,
64
00:03:39,208 --> 00:03:43,208
and your only job is to get
me a ride on an elephant."
65
00:03:43,666 --> 00:03:47,083
And she said, "Dad, you can't
do that. That's animal abuse."
66
00:03:47,375 --> 00:03:50,458
And I thought, "Well, yeah,
I probably can't do that."
67
00:03:50,458 --> 00:03:53,875
And she said, "I'll take you
to an elephant sanctuary,
68
00:03:53,916 --> 00:03:57,958
and you can pet them, and you can
feed them, and I think you'll like it."
69
00:03:58,541 --> 00:04:02,333
And I thought, "Okay, let's do it.
You know, I'll humour you. We'll do that."
70
00:04:02,333 --> 00:04:07,125
And so, we had to hire a car to
drive us well outside of Bangkok.
71
00:04:07,166 --> 00:04:08,458
It was several hours.
72
00:04:08,708 --> 00:04:12,333
And when we got almost
there, the driver stopped
73
00:04:12,375 --> 00:04:16,125
at this beside-the-road fruit market,
74
00:04:16,166 --> 00:04:18,791
and he said, "We're stopping
here to get elephant food."
75
00:04:18,833 --> 00:04:21,583
And I said, "Well, what's elephant food?"
76
00:04:21,583 --> 00:04:23,833
He said, "Corn and bananas."
Well, that was simple.
77
00:04:23,875 --> 00:04:26,750
I said, "Sarah, you get the
corn. I'll get the bananas.
78
00:04:26,791 --> 00:04:30,166
We'll rendezvous back here in five
minutes, and we'll get on with our day."
79
00:04:30,166 --> 00:04:35,541
So she goes off to get corn, and I
found this pallet of bananas piled high.
80
00:04:35,833 --> 00:04:38,250
I thought, "This is simple.
This is elephant food."
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00:04:38,291 --> 00:04:43,000
And I stuck my hand into the banana
pile, and I felt this chomp on my hand,
82
00:04:43,041 --> 00:04:45,625
and I had my hand spread
and it was right on the web space
83
00:04:45,625 --> 00:04:47,500
between my thumb and first finger.
84
00:04:48,000 --> 00:04:51,333
I felt it - chomp -
and I pulled my hand out,
85
00:04:51,375 --> 00:04:54,750
and I looked at it, and I could see
the puncture marks in my hand,
86
00:04:54,791 --> 00:04:59,125
and I immediately googled
it, as one would I suppose,
87
00:04:59,166 --> 00:05:03,583
and realized that a viper
snake would have two fangs,
88
00:05:03,583 --> 00:05:08,166
like a poisonous snake might have two fang
with two puncture marks, but I had five.
89
00:05:08,750 --> 00:05:13,250
And so, I thought this is probably
not a poisonous animal that bit me.
90
00:05:13,250 --> 00:05:19,250
And then, I saw this silvery snake slither
out from the back of this banana pile
91
00:05:19,291 --> 00:05:21,458
and into what seemed to be the jungle
92
00:05:21,500 --> 00:05:24,041
because we were out in
the middle of nowhere really.
93
00:05:24,083 --> 00:05:31,333
And so, I quickly decided,
maybe not so well informed,
94
00:05:31,375 --> 00:05:35,041
but I decided at the moment
that this wasn't a poisonous snake
95
00:05:35,041 --> 00:05:37,500
and that I was going back to
Toronto the next day anyway,
96
00:05:37,500 --> 00:05:39,958
and I would just deal with
whatever eventuality happened.
97
00:05:40,833 --> 00:05:42,416
And so that's what happened.
98
00:05:42,458 --> 00:05:47,125
We went on our little elephant tour,
and we had a great time and I was
99
00:05:47,166 --> 00:05:51,166
going home the next day, but it's
a 21-hour flight to get back to Toronto,
100
00:05:51,166 --> 00:05:54,875
and by the time I landed in
Toronto, I had a temperature of 40
101
00:05:54,916 --> 00:05:59,875
and wasn't feeling well getting off
the plane and went to work the next day
102
00:05:59,875 --> 00:06:04,000
and spoke to one of my plastic surgery
colleagues who looked at it and said,
103
00:06:04,000 --> 00:06:07,333
"You know, you've got cellulitis from the
tip of your fingers up to your shoulder.
104
00:06:07,333 --> 00:06:09,833
And I think your tendons
are infected as well.
105
00:06:10,375 --> 00:06:11,833
And we're going to put
you on some antibiotics,
106
00:06:11,875 --> 00:06:13,541
and I'm going to put
you in a plaster cast."
107
00:06:13,833 --> 00:06:18,125
So, that happened, and
I thought we had a plan.
108
00:06:19,125 --> 00:06:22,125
Three days later,
things weren't getting better.
109
00:06:22,125 --> 00:06:26,875
And so, like a great patient,
I took the cast off myself
110
00:06:26,875 --> 00:06:31,625
and realized that the cellulitis
wasn't really getting better.
111
00:06:31,666 --> 00:06:34,458
And I thought, "Well, maybe I could get an
opinion
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00:06:34,500 --> 00:06:36,958
from one of the tropical disease experts."
113
00:06:38,041 --> 00:06:40,083
And so I called him up, and he said,
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00:06:40,125 --> 00:06:44,083
"I don't know what lives in the
mouth of a snake in Thailand.
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00:06:44,500 --> 00:06:47,333
But," he said, "I think you
should ramp up the antibiotics,
116
00:06:47,333 --> 00:06:48,750
you know, broader spectrum."
117
00:06:48,791 --> 00:06:51,291
And so he put me on
amoxicillin/clavulanic acid,
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00:06:51,333 --> 00:06:56,958
and lo and behold, within five days,
the cellulitis seemed to be regressing,
119
00:06:57,000 --> 00:07:00,291
but I continued to have
fevers and chills every night.
120
00:07:00,333 --> 00:07:04,916
And then I got all of the symptoms that we
associate with Stevens-Johnson syndrome.
121
00:07:04,958 --> 00:07:09,208
That took a couple of weeks,
but a rash that covered my trunk,
122
00:07:09,250 --> 00:07:14,583
sort of a target-style rash that then
coalesced into something very confluent.
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00:07:14,625 --> 00:07:17,750
I had small joint arthritis.
124
00:07:17,750 --> 00:07:21,416
All sorts of arthralgias
in my hands and wrists.
125
00:07:21,458 --> 00:07:25,750
And then the skin on my lips and
the inside of my mouth sloughed off,
126
00:07:25,750 --> 00:07:30,041
and everything I ate tasted so spicy.
127
00:07:30,041 --> 00:07:31,875
Anything I ate, no matter how bland it was
128
00:07:31,875 --> 00:07:34,416
it just tasted spicy because
the inside of my mouth was raw.
129
00:07:34,458 --> 00:07:36,541
But that all healed up
within a couple of weeks.
130
00:07:36,583 --> 00:07:40,666
But the thing that seemed to
persist were these nightly fevers
131
00:07:40,708 --> 00:07:42,541
and profound fatigue.
132
00:07:43,000 --> 00:07:46,666
And I was told that, "We
could plasmapherese you,
133
00:07:46,666 --> 00:07:49,041
we could put you on
high-dose steroids,
134
00:07:49,083 --> 00:07:51,708
but they don't necessarily
work all that well,
135
00:07:51,708 --> 00:07:54,125
and maybe the best thing
to do is just tough it out,
136
00:07:54,125 --> 00:07:56,958
and probably within six months
it should get better."
137
00:07:57,000 --> 00:08:00,666
And so, for all those months,
I sort of had my fingers crossed,
138
00:08:00,708 --> 00:08:06,500
hoping against hope that this would
just naturally resolve into the background
139
00:08:06,875 --> 00:08:07,958
But it didn't.
140
00:08:07,958 --> 00:08:10,708
And at six months, it was
maybe even a bit worse.
141
00:08:10,750 --> 00:08:12,750
And eight months, worse yet.
142
00:08:12,791 --> 00:08:14,791
And then about 10 or 11 months,
143
00:08:14,791 --> 00:08:18,500
I felt that I didn't
really have a diagnosis.
144
00:08:18,541 --> 00:08:20,791
It wasn't just Stevens-Johnson Syndrome;
145
00:08:20,791 --> 00:08:23,708
it was something worse
because I was getting worse.
146
00:08:23,708 --> 00:08:26,375
And I couldn't function
very well at work at that time.
147
00:08:26,375 --> 00:08:30,125
And so, I spoke to my
Surgeon-in-Chief and said,
148
00:08:30,166 --> 00:08:32,541
"I believe I need some time
to get to the bottom of this.
149
00:08:32,541 --> 00:08:35,583
I need to take some time
off and just get this sorted."
150
00:08:36,208 --> 00:08:42,625
And so, I went to a hospital and saw a
general internal medicine person one day
151
00:08:42,666 --> 00:08:45,416
and went through a whole bevy of tests,
152
00:08:45,416 --> 00:08:48,125
imaging up and down and a
whole bunch of blood work.
153
00:08:48,125 --> 00:08:51,083
And at the end of the day,
she came back, and she said,
154
00:08:51,125 --> 00:08:55,583
"This has affected your liver
as it can affect end organs."
155
00:08:55,625 --> 00:08:58,708
Stevens-Johnson syndrome,
we've seen it in kidneys,
156
00:08:58,708 --> 00:09:01,000
and in my business,
I've seen it occasionally.
157
00:09:01,000 --> 00:09:04,625
And I knew it could affect livers,
but it was so off my radar screen
158
00:09:04,625 --> 00:09:06,916
to think that this could be
happening in the background.
159
00:09:07,458 --> 00:09:10,750
And she said, "Tomorrow, I'm
sending you to the transplant clinic."
160
00:09:10,750 --> 00:09:12,958
And it was literally like that.
161
00:09:13,000 --> 00:09:16,208
It was just an anvil between my eyes.
162
00:09:16,208 --> 00:09:19,291
I had no reason to
suspect this was going on.
163
00:09:19,291 --> 00:09:22,416
And there I was in the
transplant clinic the very next day.
164
00:09:22,916 --> 00:09:27,041
Wow. So a span of
eight, ten months, totally,
165
00:09:27,041 --> 00:09:30,041
between that first bite, that random event
166
00:09:30,083 --> 00:09:32,125
and finding yourself as a
patient in the transplant clinic.
167
00:09:32,125 --> 00:09:33,666
That's right. That's right.
168
00:09:34,125 --> 00:09:38,416
Marie, when did you first get wind
of what was happening with Rob?
169
00:09:39,000 --> 00:09:43,708
So, I think it was kind
of March or something
170
00:09:43,708 --> 00:09:49,125
when I heard that Rob
needed an organ donor.
171
00:09:49,166 --> 00:09:54,375
And we heard about it – I heard
about it at our division meeting.
172
00:09:54,375 --> 00:10:00,833
So, we were around the table having
one of our usual division conversations,
173
00:10:00,833 --> 00:10:03,500
talking about everything that's going on,
174
00:10:03,541 --> 00:10:06,625
and then that morning,
we had all gotten an email
175
00:10:06,666 --> 00:10:09,041
from the chief of medicine;
176
00:10:09,083 --> 00:10:13,291
it was a letter from
Marg, from Rob's wife,
177
00:10:13,333 --> 00:10:15,125
saying that Rob was sick
178
00:10:15,166 --> 00:10:23,500
and that he needed a liver transplant and
that they were looking for an organ donor.
179
00:10:23,541 --> 00:10:34,541
An additional detail that was in that
letter was that Rob was O negative, right?
180
00:10:34,583 --> 00:10:36,291
And that they needed an O-negative donor.
181
00:10:36,333 --> 00:10:40,125
So, we're sitting around the table
in our division, and everyone's like,
182
00:10:40,125 --> 00:10:42,250
"Marg is one of our colleagues, right.
183
00:10:42,291 --> 00:10:45,125
And Rob is one of our colleagues.
184
00:10:45,166 --> 00:10:48,458
And we have connections with both of them.
185
00:10:48,500 --> 00:10:52,625
And everyone, I think, at that table
was like, "What are we going to do?
186
00:10:52,666 --> 00:10:56,916
What can we do? How do
we help Rob find a donor?"
187
00:10:57,458 --> 00:11:02,041
But I think maybe I felt it even
more that day because I'm O negative.
188
00:11:02,083 --> 00:11:06,416
And I was just like,
"Right, like I could do this."
189
00:11:07,208 --> 00:11:10,666
And so, that was kind of when
my thinking started about it.
190
00:11:10,708 --> 00:11:12,500
So you started thinking at that point,
191
00:11:12,541 --> 00:11:17,583
and what happened as you moved
from that period between contemplation
192
00:11:17,583 --> 00:11:23,125
and taking the first step of a very
long process?
193
00:11:23,166 --> 00:11:25,000
Take us through that.
194
00:11:25,000 --> 00:11:31,208
I think that making the decision
was the hardest part, actually.
195
00:11:32,041 --> 00:11:35,291
I think at first
I just asked random people
196
00:11:35,291 --> 00:11:39,125
questions without revealing anything.
197
00:11:39,583 --> 00:11:44,500
Because maybe it was a crazy idea
to even be thinking about it.
198
00:11:44,541 --> 00:11:46,666
But I remember at that
division meeting saying,
199
00:11:46,708 --> 00:11:49,541
"Well, what's it like
to be a liver donor?"
200
00:11:49,583 --> 00:11:51,666
And several people
at the table said things,
201
00:11:51,708 --> 00:11:53,875
but probably with not
all that much information.
202
00:11:53,916 --> 00:11:57,625
Maybe it takes a few months to recover,
203
00:11:57,666 --> 00:12:00,041
or there was sort of some
very vague information.
204
00:12:00,375 --> 00:12:04,250
And then I kind of thought, "Okay."
205
00:12:04,291 --> 00:12:06,541
I wasn't consciously
thinking about it yet,
206
00:12:06,541 --> 00:12:09,333
but then it seemed like every day
when I got on my bike ride home,
207
00:12:09,375 --> 00:12:12,291
which is always when I
do my clearest thinking,
208
00:12:12,333 --> 00:12:13,666
it just kept coming back
to me.
209
00:12:13,708 --> 00:12:14,416
I was thinking,
210
00:12:14,416 --> 00:12:19,583
"Well, Rob needs a
donor. And why isn't it me?"
211
00:12:19,625 --> 00:12:21,750
And so, I would go through all these
reasons why.
212
00:12:21,791 --> 00:12:23,083
Well, I have patients to look after.
213
00:12:23,125 --> 00:12:26,541
I've got my kids and I've
got et cetera, et cetera.
214
00:12:26,583 --> 00:12:30,416
And then I realized after
a couple of weeks of this
215
00:12:30,458 --> 00:12:33,791
that I didn't have enough information.
216
00:12:33,833 --> 00:12:38,166
But I really needed to know, to ask
someone who could really
217
00:12:38,208 --> 00:12:42,375
give me detailed
information so I could decide.
218
00:12:42,416 --> 00:12:46,375
So, lucky me, one of my cycling
friends is a liver transplant surgeon.
219
00:12:46,416 --> 00:12:50,333
So, I just messaged him one
day, sort of randomly, and said,
220
00:12:50,333 --> 00:12:53,041
"You know, hey, what's
it like to be a liver donor?"
221
00:12:53,083 --> 00:12:55,833
And he said, "Why don't we
meet for coffee tomorrow?"
222
00:12:55,833 --> 00:12:58,750
So, we met for coffee.
So, this is an amazing thing,
223
00:12:58,750 --> 00:13:01,375
right, to be able to message
a liver transplant surgeon,
224
00:13:01,416 --> 00:13:03,708
"Hey, can you tell me what it's like?"
225
00:13:03,750 --> 00:13:06,583
without telling anybody else
that I'm asking this crazy question
226
00:13:06,583 --> 00:13:09,000
because I was wondering
if it was a crazy idea.
227
00:13:09,208 --> 00:13:14,416
So, I met with Gonzalo, and
he told me about it, basically.
228
00:13:14,458 --> 00:13:16,750
And I told him why I was asking,
229
00:13:16,750 --> 00:13:19,416
but I said I have no idea if
this is the right thing or not,
230
00:13:19,458 --> 00:13:20,958
but tell me what it's about.
231
00:13:20,958 --> 00:13:23,833
And he wasn't trying to convince me.
232
00:13:23,833 --> 00:13:28,791
He just kind of said it like it was, "This
is what the surgery is,
233
00:13:28,833 --> 00:13:32,833
this is our experience
in the UHN program."
234
00:13:32,875 --> 00:13:35,333
And by the end of the
conversation, I was like,
235
00:13:35,375 --> 00:13:39,083
"Well, you know, that seems pretty
doable. Like, what do I do next?"
236
00:13:39,416 --> 00:13:43,083
And so, from there, I signed up.
237
00:13:43,125 --> 00:13:47,916
I went online and filled out a form to
say yes, I'd be interested in doing this.
238
00:13:47,958 --> 00:13:51,666
And then you kind of wait to hear, right?
239
00:13:51,708 --> 00:13:55,041
He did tell me that they only
assess one person at a time.
240
00:13:55,083 --> 00:13:57,291
So, you might sign up
and hear nothing for a while.
241
00:13:57,291 --> 00:13:59,750
So, it was a couple of
weeks that I didn't hear anything,
242
00:13:59,750 --> 00:14:01,416
but I thought, "Okay, this is good.
243
00:14:01,458 --> 00:14:04,000
I made at least the step to get checked."
244
00:14:05,416 --> 00:14:08,583
So that was a very
important first part of it.
245
00:14:08,625 --> 00:14:11,875
And it meant a lot to
be able to ask a friend
246
00:14:11,875 --> 00:14:13,541
who was so knowledgeable about it.
247
00:14:13,541 --> 00:14:15,791
Like, it's a special thing
as a doctor, right,
248
00:14:16,000 --> 00:14:19,500
that we have these friends
who can really tell us like it is.
249
00:14:19,500 --> 00:14:23,208
And also, that it didn't
seem that scary to me.
250
00:14:23,208 --> 00:14:26,125
I was still worried about, that
was the medical part, right?
251
00:14:26,166 --> 00:14:29,791
I was still worried about
work, patients, family, you know
252
00:14:29,791 --> 00:14:31,791
all the other things on my list.
253
00:14:31,791 --> 00:14:35,416
But at least the medical, surgical
part didn't seem that scary to me
254
00:14:35,416 --> 00:14:38,041
because I had all the information
and I knew what it meant.
255
00:14:38,291 --> 00:14:41,333
So that was a very important first step.
256
00:14:41,333 --> 00:14:47,166
That demystification of the process
in a language that we already speak.
257
00:14:47,666 --> 00:14:50,875
Exactly. So that was
kind of like the first step.
258
00:14:50,916 --> 00:14:53,416
And then I didn't tell
anyone when I did that,
259
00:14:53,458 --> 00:14:56,750
but my husband was away when I signed
up online, and when he came back,
260
00:14:56,791 --> 00:14:59,250
I was having dinner with him.
261
00:14:59,291 --> 00:15:02,000
That was kind of the next
step because I thought,
262
00:15:02,041 --> 00:15:04,791
"Well, I need to tell him
before it's too far along,
263
00:15:04,791 --> 00:15:06,833
need to see what he thinks."
264
00:15:06,958 --> 00:15:08,666
So, I was having dinner with him,
265
00:15:08,666 --> 00:15:10,666
and we were just having
a nice dinner talking.
266
00:15:10,708 --> 00:15:12,666
And I said, "You know, there's
something I want to tell you about.
267
00:15:12,666 --> 00:15:14,291
I've been thinking about this thing."
268
00:15:14,333 --> 00:15:18,833
And I told him, and it was
like the end of the conversation.
269
00:15:18,833 --> 00:15:22,833
He was like crickets
for the rest of dinner.
270
00:15:22,833 --> 00:15:30,291
So I just sort of floated it out there,
but he was clearly blindsided by it.
271
00:15:30,291 --> 00:15:33,833
So, I needed to give him
a bit of time to process it.
272
00:15:34,458 --> 00:15:38,458
And he did. Eventually, like
a week later, I said,
273
00:15:38,458 --> 00:15:43,458
"You know, I wanted to ask you
again about that thing about the liver.”
274
00:15:43,500 --> 00:15:47,458
And, basically, he said,
275
00:15:47,500 --> 00:15:50,625
"You know, is there any chance
you're going to die doing this?"
276
00:15:50,666 --> 00:15:53,708
And I said, "No, you know,
here's the data from Gonzalo.
277
00:15:53,708 --> 00:15:55,666
I've read the paper and, you know,
278
00:15:55,666 --> 00:15:58,291
these are the things you've got
that could happen but not that.”
279
00:15:58,291 --> 00:16:00,416
He said, "Well, then, I think it's good.
280
00:16:00,416 --> 00:16:02,958
I think if you want to
do it, you should do it."
281
00:16:03,000 --> 00:16:07,833
So that was a second really
important part of the process for me.
282
00:16:08,041 --> 00:16:09,291
Yeah, big milestone.
283
00:16:09,333 --> 00:16:12,291
What I really hear in what
you were just saying is that gulf
284
00:16:12,291 --> 00:16:17,125
between the uncertainty of
what something will really be like
285
00:16:17,125 --> 00:16:22,916
and then the necessity of filling in
those gaps with actual information.
286
00:16:22,916 --> 00:16:25,500
And it just makes me think, Rob,
287
00:16:25,500 --> 00:16:31,750
of your experience as a transplant
surgeon, albeit a different organ.
288
00:16:31,791 --> 00:16:34,375
What were some of the gaps that you faced
289
00:16:34,375 --> 00:16:38,250
when you were now in this
situation in the transplant clinic?
290
00:16:38,250 --> 00:16:41,541
What you might have
thought that you would know
291
00:16:41,541 --> 00:16:44,041
that you actually had no
knowledge of whatsoever?
292
00:16:44,541 --> 00:16:49,041
Yeah. Exactly. I mean, they said
to me on that first appointment,
293
00:16:49,083 --> 00:16:52,916
"Rob, you need a transplant, and
you should start looking for a donor."
294
00:16:52,958 --> 00:16:57,125
And frankly, I had no idea where to begin.
295
00:16:57,125 --> 00:17:00,666
There's no clear algorithm
here. There just isn't.
296
00:17:00,666 --> 00:17:05,000
And it was pointed out to me by
a senior surgeon in the program
297
00:17:05,041 --> 00:17:08,333
that I couldn't be an advocate for myself.
298
00:17:08,333 --> 00:17:09,083
It doesn't work.
299
00:17:09,083 --> 00:17:14,625
It's too awkward for the potential
donor being approached like that, you know
300
00:17:14,666 --> 00:17:16,125
"I need a liver."
301
00:17:16,458 --> 00:17:20,583
That's difficult.
And it's awkward for me to ask.
302
00:17:20,625 --> 00:17:23,458
And so he said – and it
was very good advice:
303
00:17:23,458 --> 00:17:25,625
"Get somebody to be your advocate."
304
00:17:25,625 --> 00:17:29,791
And Margaret did. I mean, she
just really stepped up and did it,
305
00:17:29,833 --> 00:17:33,333
and she took it on like a huge project.
306
00:17:33,375 --> 00:17:36,791
And she was on her
laptop at 4 a.m. every day,
307
00:17:36,833 --> 00:17:42,833
contacting colleagues and
friends in Europe and elsewhere.
308
00:17:42,875 --> 00:17:46,083
And that seemed to be very helpful,
309
00:17:46,083 --> 00:17:49,875
and other folks have social
groups that they can reach out to.
310
00:17:49,875 --> 00:17:54,250
I mean, the first people who came
forward were all of my family members.
311
00:17:54,291 --> 00:17:56,416
But for various reasons,
it didn't work out.
312
00:17:56,416 --> 00:18:00,541
You know, I'm six foot two and
there's a size matching element
313
00:18:00,583 --> 00:18:02,208
that has to be considered, et cetera.
314
00:18:02,250 --> 00:18:04,375
And so, my family members didn't work.
315
00:18:04,416 --> 00:18:08,000
And so, then the next
sort of concentric circle
316
00:18:08,041 --> 00:18:11,500
were friends, colleagues,
things like that.
317
00:18:11,541 --> 00:18:13,750
And as a kidney transplant surgeon,
318
00:18:13,791 --> 00:18:17,875
we don't get involved in
the search for a donor kidney.
319
00:18:17,916 --> 00:18:22,250
We meet the recipient at the very
end, you know close to
the time of their surgery.
320
00:18:22,291 --> 00:18:24,750
And so, all of this has already transpired
321
00:18:24,791 --> 00:18:28,458
And so, I didn't really...
I mean I knew it went on, of course,
322
00:18:28,458 --> 00:18:32,666
but I didn't have any firsthand experience
with people searching for a donor.
323
00:18:32,708 --> 00:18:34,708
So that part was really new to me.
324
00:18:35,000 --> 00:18:38,875
It's interesting you know
when you talk about
325
00:18:38,875 --> 00:18:41,666
through the process
needing to appoint an advocate
326
00:18:41,666 --> 00:18:46,916
and that being a very clear
requirement for it to be someone else.
327
00:18:46,916 --> 00:18:50,208
I think there are a lot of people
outside of the medical community
328
00:18:50,250 --> 00:18:54,750
who would assume that being a
physician going through these things –
329
00:18:54,791 --> 00:18:56,791
and as we talked about,
there are definite advantages.
330
00:18:56,833 --> 00:18:59,708
There are ways that our
socioeconomic status helps us.
331
00:18:59,750 --> 00:19:02,750
There are ways in which being
part of the medical community,
332
00:19:02,750 --> 00:19:04,208
we speak the language already.
333
00:19:04,250 --> 00:19:06,250
There are lots of things that we do know,
334
00:19:06,250 --> 00:19:09,166
but there are some paradoxes there, right,
335
00:19:09,208 --> 00:19:14,916
in terms of being able to advocate for
ourselves and being in the role of patient
336
00:19:14,958 --> 00:19:17,541
And I wonder if you could
talk about your experience
337
00:19:17,583 --> 00:19:19,250
navigating some of those things, Rob.
338
00:19:19,500 --> 00:19:23,000
Well, being a patient was an
entirely new experience for me.
339
00:19:23,041 --> 00:19:28,875
I really didn't have much
background experience.
340
00:19:28,875 --> 00:19:31,375
I didn't have a way forward.
341
00:19:31,375 --> 00:19:34,250
I didn't know how to conduct myself
342
00:19:34,250 --> 00:19:37,833
as I was learning slowly
to become a patient.
343
00:19:37,875 --> 00:19:41,083
It's a gradual process. It
doesn't happen overnight.
344
00:19:41,125 --> 00:19:46,750
And I initially remember vividly
sitting in these waiting rooms,
345
00:19:46,750 --> 00:19:50,708
the transplant clinics, they're big
waiting rooms with lots of people.
346
00:19:50,708 --> 00:19:54,125
And I would just sit there
and look around the room.
347
00:19:54,125 --> 00:19:56,666
And, of course, you
invent a story for everybody
348
00:19:56,666 --> 00:19:59,625
that you see on a regular
basis at these appointments
349
00:19:59,625 --> 00:20:04,458
and try to understand what their situation
might be like as you bide the time.
350
00:20:04,916 --> 00:20:11,958
And as a physician, all of us can resonate
with this idea of having a busy clinic,
351
00:20:11,958 --> 00:20:16,041
taking one patient's chart, going out
to a waiting room, calling that patient,
352
00:20:16,083 --> 00:20:18,583
ushering them into an examining room,
353
00:20:18,625 --> 00:20:23,708
and you are sort of laser-focused
on that individual in that moment.
354
00:20:23,750 --> 00:20:27,250
But in the waiting room, as I
was learning to become a patient,
355
00:20:27,291 --> 00:20:32,708
what I started to realize was an
appreciation of the collective suffering.
356
00:20:32,708 --> 00:20:35,583
You look around the room,
and everybody is suffering.
357
00:20:35,583 --> 00:20:37,125
Everybody has a story.
358
00:20:37,125 --> 00:20:40,458
And in many cases, it was a
story that was so much more
359
00:20:40,458 --> 00:20:42,916
harrowing and frightening than my own.
360
00:20:42,958 --> 00:20:46,458
You make me think of the
concept of inattention blindness.
361
00:20:46,500 --> 00:20:51,708
That really we are trained to focus on
the one thing in front of us,
362
00:20:51,750 --> 00:20:54,458
to tune out everything
else, to look at the lesion
363
00:20:54,500 --> 00:20:57,041
as opposed to everything
surrounding the lesion.
364
00:20:57,041 --> 00:21:00,916
And it is an unlearning process when
we sort of learn to see things again
365
00:21:00,958 --> 00:21:06,708
with different eyes that doesn't
necessarily go with that conditioning.
366
00:21:07,000 --> 00:21:07,708
Yeah, very much so.
367
00:21:07,750 --> 00:21:10,916
Yeah. So, Marie, you were also a
patient. What was that like for you?
368
00:21:11,666 --> 00:21:14,666
You know, it was a really
good experience for me, actually.
369
00:21:14,708 --> 00:21:18,625
It's a pretty different thing
to decide to be a patient,
370
00:21:18,666 --> 00:21:22,208
which doesn't happen very often, I think.
371
00:21:22,250 --> 00:21:26,916
So, it's a very different experience
than I think being sick and having to
372
00:21:26,958 --> 00:21:33,333
deal with illness and deal with
this unwanted, unexpected situation.
373
00:21:33,333 --> 00:21:35,791
To me, it was something I
very clearly decided to do.
374
00:21:35,791 --> 00:21:41,250
And, in fact, once I found out that
I was a good match, so to speak,
375
00:21:41,250 --> 00:21:43,666
I was really excited to move forward.
376
00:21:43,708 --> 00:21:46,500
So, I honestly felt a lot
of excitement about it.
377
00:21:46,541 --> 00:21:51,125
A lot of nervousness about planning, but
a lot of excitement about moving forward.
378
00:21:51,125 --> 00:21:56,208
And I think the other thing is that the
team at UHN, I mean, they were amazing.
379
00:21:56,250 --> 00:22:02,250
So, everything was super organized
and everything went according to plan.
380
00:22:02,291 --> 00:22:06,916
So, it was really a
remarkable experience for me.
381
00:22:07,500 --> 00:22:13,375
The one thing I remember that I
found a little bit difficult is
382
00:22:13,375 --> 00:22:15,833
when we were in the hospital afterwards.
383
00:22:15,875 --> 00:22:18,541
I say we because we were
on the same ward, okay, right?
384
00:22:18,541 --> 00:22:21,875
But I remember being really self-conscious
385
00:22:21,916 --> 00:22:25,166
about hearing whether people
were sanitizing their hands or not
386
00:22:25,208 --> 00:22:26,875
when they were coming in to see me.
387
00:22:26,916 --> 00:22:29,583
So it was one of those
kind-of-painful things of being a doctor,
388
00:22:29,583 --> 00:22:32,750
and you know too much because
you know the sound of them sanitizing
389
00:22:32,750 --> 00:22:35,875
and whether they were
rubbing their hands long enough.
390
00:22:35,875 --> 00:22:37,416
And the sound of them not sanitizing.
391
00:22:37,416 --> 00:22:40,875
Right. And so, it'd be
like, "Oh, hi, you know."
392
00:22:40,916 --> 00:22:44,916
So, I found that I was in a bit of
a heightened awareness state
393
00:22:44,958 --> 00:22:46,250
because I didn't want to get sick,
394
00:22:46,250 --> 00:22:49,041
and I was going in there healthy
and wanted to come out healthy.
395
00:22:49,250 --> 00:22:52,041
But really, they were stellar.
396
00:22:52,083 --> 00:22:54,666
So I had a very good experience.
397
00:22:55,166 --> 00:22:58,166
There's a moment that Rob
told me about a little bit earlier
398
00:22:58,166 --> 00:23:00,708
that I wonder if you could expand on.
399
00:23:00,708 --> 00:23:05,041
And it was sort of a moment in
conversation between the two of you
400
00:23:05,083 --> 00:23:10,583
when your liver really became, in
conversation between the two of you,
401
00:23:10,583 --> 00:23:14,666
Rob's liver, and we were talking about whe
does that happen? When is that transition?
402
00:23:14,708 --> 00:23:17,166
So, what was that
moment for the two of you?
403
00:23:17,583 --> 00:23:18,708
That's a good question.
404
00:23:18,708 --> 00:23:21,208
I mean, I remember pretty soon after
405
00:23:21,250 --> 00:23:27,166
that we were talking about it, and Rob
and Marg were always so grateful.
406
00:23:27,166 --> 00:23:29,083
And I remember saying at a certain point,
407
00:23:29,083 --> 00:23:31,375
and I think this might have been
what you were talking about, I was like,
408
00:23:31,375 --> 00:23:33,375
"You know what, it's fully yours now;
409
00:23:33,416 --> 00:23:36,291
you don't need to keep
thanking me for it, you know."
410
00:23:36,291 --> 00:23:37,583
And Margaret would be like,
411
00:23:37,583 --> 00:23:39,416
"Rob's going to take
good care of that liver."
412
00:23:39,458 --> 00:23:43,458
And I was like, "It's fine. It's fully
yours, you know. No takebacks."
413
00:23:43,500 --> 00:23:47,041
With respect, Marie, it
was even more than that
414
00:23:47,041 --> 00:23:51,708
because we'd had coffee that day
and I had brought up this idea of you know
415
00:23:51,750 --> 00:23:54,291
I'm trying to take good care of your liver
416
00:23:54,333 --> 00:23:56,083
And you didn't say anything at the time,
417
00:23:56,125 --> 00:24:00,625
but when we got out of the coffee shop,
you squared off with me and you said,
418
00:24:00,625 --> 00:24:02,833
"Rob," and you hugged me, and you said,
419
00:24:02,833 --> 00:24:06,833
"Rob, this is your liver now.
Don't talk about it in any other way."
420
00:24:07,041 --> 00:24:08,041
I'm glad you heard me.
421
00:24:08,041 --> 00:24:10,083
I heard you. I did.
422
00:24:10,083 --> 00:24:12,416
But it was a very meaningful moment for me
423
00:24:12,416 --> 00:24:17,625
Because it's a gradual process
to then believe that this is…
424
00:24:17,625 --> 00:24:20,583
…something that's real.
425
00:24:20,625 --> 00:24:26,375
Because, you know, becoming an organ
donor is the purest of elective surgery.
426
00:24:26,416 --> 00:24:32,375
And that altruistic gift is an
extreme expression of empathy.
427
00:24:33,125 --> 00:24:40,250
Marie was such the hero in this exchange
because she had a big decision to make.
428
00:24:40,250 --> 00:24:42,500
I didn't have a decision to make.
429
00:24:42,500 --> 00:24:46,708
You know, there was nothing I could do
about my situation. I couldn't help myself
430
00:24:46,750 --> 00:24:49,125
And that was probably the
most frustrating thing of all.
431
00:24:49,125 --> 00:24:52,958
We're used to being in the
driver's seat, turning the dials;
432
00:24:53,000 --> 00:24:56,041
you know, we're all sort
of type A personalities.
433
00:24:56,083 --> 00:24:59,791
And this was very
difficult to be a passenger
434
00:24:59,833 --> 00:25:03,083
and be out of control and feeling helpless
435
00:25:03,583 --> 00:25:04,875
Yeah. So, that just takes me back
436
00:25:04,916 --> 00:25:06,833
to something Marie was
saying a few minutes ago
437
00:25:06,875 --> 00:25:08,708
about the locus of control,
438
00:25:08,750 --> 00:25:12,291
sort of making the choice to do this.
439
00:25:12,291 --> 00:25:16,916
And we have some very
positive framing in terms
440
00:25:16,958 --> 00:25:20,958
of what it feels like
to make that decision,
441
00:25:21,000 --> 00:25:24,750
make that step. How
it is actually reclaiming
442
00:25:24,791 --> 00:25:27,875
sort of that same
being-in-the-driver's seat
443
00:25:27,916 --> 00:25:30,250
feeling that you talked about, Rob.
444
00:25:30,291 --> 00:25:32,125
I wonder if you have any other
thoughts about that, Marie?
445
00:25:32,125 --> 00:25:38,833
Yeah, it felt great to make the decision.
446
00:25:38,833 --> 00:25:41,125
And in retrospect now,
447
00:25:41,125 --> 00:25:44,833
I think that it was an amazing experience.
448
00:25:44,833 --> 00:25:46,541
I'm so glad I did it.
449
00:25:46,583 --> 00:25:49,541
You know, it's like the
best decision I ever made.
450
00:25:49,583 --> 00:25:54,208
And so I feel really good about that.
451
00:25:54,208 --> 00:25:56,000
And I kind of think, "Wow,
I could have missed it"
452
00:25:56,041 --> 00:26:00,000
if I had just sort of kept thinking
why it wasn't a good idea.
453
00:26:00,000 --> 00:26:05,000
So, you're right, a big part of it was
figuring out whether it was a good idea.
454
00:26:05,000 --> 00:26:08,625
And also, part of making the decision
455
00:26:08,666 --> 00:26:13,083
and having the decision be a good
one was also all the people around me.
456
00:26:13,125 --> 00:26:16,416
So, once I went through
the medical part, and then,
457
00:26:16,416 --> 00:26:19,250
it was like, okay, is this
going to be okay at work?
458
00:26:19,291 --> 00:26:21,291
And is this going to be okay at home?
459
00:26:21,333 --> 00:26:26,416
And both home and work
people were just like a huge yes.
460
00:26:26,458 --> 00:26:32,166
So, that was really neat, and that
gave me kind of the extra courage
461
00:26:32,208 --> 00:26:36,875
to make that final step and really
decide to do it. And I'm so glad I did.
462
00:26:37,375 --> 00:26:38,708
And I love that framing.
463
00:26:38,750 --> 00:26:43,458
I think you really enrich our
understanding of the fact that
464
00:26:43,500 --> 00:26:46,666
it was clearly the person at the centre
465
00:26:46,708 --> 00:26:50,541
of the effort was you
in terms of the donation,
466
00:26:50,583 --> 00:26:54,333
but there was just this real, practical,
tangible,
467
00:26:54,375 --> 00:26:57,125
necessary support from your colleagues…
468
00:26:57,125 --> 00:26:59,333
…and your medical community
and your friends and your family.
469
00:26:59,375 --> 00:27:00,958
A hundred percent.
470
00:27:00,958 --> 00:27:05,125
At work, it really kind of blew me away.
471
00:27:05,166 --> 00:27:07,500
You know, like the minute
I told people at work,
472
00:27:07,541 --> 00:27:11,291
because I'm going to have
to figure out some coverage
473
00:27:11,333 --> 00:27:14,125
and make some arrangements
and ask for some favours.
474
00:27:14,125 --> 00:27:16,166
And the minute I told people
at work, everyone was like,
475
00:27:16,208 --> 00:27:18,916
"What can we do? How
can we be part of this?”
476
00:27:19,375 --> 00:27:25,250
It was really touching, actually.
477
00:27:25,291 --> 00:27:26,791
Surprise is not the right word,
478
00:27:26,833 --> 00:27:30,125
but I wasn't ready for that because
I'd been so worried about the details
479
00:27:30,125 --> 00:27:33,958
that I had forgotten that when
you want to do something special
480
00:27:34,000 --> 00:27:39,208
and you decide to do something
generous or to help somebody,
481
00:27:39,208 --> 00:27:43,208
other people want to be part
of it. So, that was amazing.
482
00:27:43,250 --> 00:27:45,083
So, it was actually really easy,
483
00:27:45,083 --> 00:27:51,375
like all of the arrangements at work
and making all all those coverage plans
484
00:27:51,416 --> 00:27:53,208
and everyone wanted to help out.
485
00:27:53,250 --> 00:27:54,916
Yeah. You can just sort
of hear it in your story,
486
00:27:54,916 --> 00:27:56,458
just taking on a life of its own, you know
487
00:27:56,458 --> 00:27:57,791
and enlivening…
488
00:27:57,791 --> 00:28:02,041
…giving everyone a positive focus
of something at a time of, again,
489
00:28:02,083 --> 00:28:04,291
when that control is taken away.
490
00:28:04,625 --> 00:28:09,291
And even when they came back after,
coming back,
491
00:28:09,333 --> 00:28:11,916
it was hilarious to me because
everywhere I would go in the hospital,
492
00:28:11,958 --> 00:28:13,333
people would be giving me thumbs up,
493
00:28:13,375 --> 00:28:20,541
people I didn't know.
494
00:28:20,583 --> 00:28:21,958
That was really special.
495
00:28:22,000 --> 00:28:23,750
Or I'd see a patient, and they'd say,
496
00:28:23,791 --> 00:28:26,250
"You know, I'm also a
patient of Dr. Stewart's."
497
00:28:26,250 --> 00:28:28,916
I don't know if I ever told you that.
People would say, and I'd be like, "Oh!"
498
00:28:28,958 --> 00:28:32,375
And they'd say, "We really
appreciate what you did for him."
499
00:28:32,375 --> 00:28:34,125
And it would really surprise me.
500
00:28:34,166 --> 00:28:35,041
So, it would come out...
501
00:28:35,041 --> 00:28:38,541
it came at me all these
different ways at work afterwards,
502
00:28:38,583 --> 00:28:44,125
and it just gave me a real
sense of, how just like you said,
503
00:28:44,166 --> 00:28:47,875
it means a lot to people to
be part of something positive,
504
00:28:47,916 --> 00:28:52,666
and it meant a lot to me to have this
community that kind of joined me in this,
505
00:28:52,708 --> 00:28:57,083
and it made me feel more
confident about the whole plan.
506
00:28:57,083 --> 00:29:02,458
Well, you just make me think of too...
we're so overwhelmed with horrible things,
507
00:29:02,458 --> 00:29:03,458
negative cases,
508
00:29:03,458 --> 00:29:05,666
difficult outcomes, suffering.
509
00:29:05,666 --> 00:29:09,708
But when there's something
that people can believe in,
510
00:29:09,750 --> 00:29:13,875
something where a person
can see a different trajectory,
511
00:29:13,875 --> 00:29:17,041
a different path, the whole
other ending to the story.
512
00:29:17,041 --> 00:29:22,125
It's so powerful. And especially
for a community. That's amazing.
513
00:29:22,416 --> 00:29:28,041
Rob, I want to go back and talk a
little bit more about physician as patient
514
00:29:28,041 --> 00:29:30,958
because certainly one
of the things in our series,
515
00:29:31,000 --> 00:29:33,333
we've had the opportunity to talk
516
00:29:33,333 --> 00:29:37,833
and will continue to talk to physicians
who have faced life-altering diagnoses.
517
00:29:37,875 --> 00:29:41,416
And I know one of the things
that I think it's really helpful
518
00:29:41,416 --> 00:29:45,125
for us to explore together
in these conversations
519
00:29:45,166 --> 00:29:49,041
are the barriers, the things
that are conditioned into us.
520
00:29:49,083 --> 00:29:52,041
We talked about the type A personalities
521
00:29:52,083 --> 00:29:56,833
but also the medical exceptionalism,
the things that we are marinated in,
522
00:29:56,875 --> 00:30:01,250
in terms of medical culture, that
can influence our behaviours, again,
523
00:30:01,250 --> 00:30:04,875
in ways that the general
public might not understand,
524
00:30:04,875 --> 00:30:09,791
or might think are completely
illogical for us as physicians.
525
00:30:09,791 --> 00:30:15,541
And I wonder, as you move to this
other part and phase of your life now,
526
00:30:15,583 --> 00:30:18,166
and certainly one where everybody
knows that you have been
527
00:30:18,166 --> 00:30:21,708
and continue to be
a physician-patient,
528
00:30:21,708 --> 00:30:25,083
what other things
have really been illuminated for you?
529
00:30:25,333 --> 00:30:26,875
Well, a number of
things. I mean, I think that
530
00:30:26,875 --> 00:30:30,500
we can talk about the
physician as a patient.
531
00:30:30,541 --> 00:30:35,500
We can also talk about the physician who i
looking after a physician who is a patient
532
00:30:35,541 --> 00:30:38,250
And so, it's all sort of part of the same,
533
00:30:38,250 --> 00:30:42,250
but it comes from a different
angle, a different lens.
534
00:30:42,291 --> 00:30:46,875
And the two are very much
intertwined at times, and I think that
535
00:30:46,875 --> 00:30:51,041
when a physician becomes
a physician of another patient,
536
00:30:51,083 --> 00:30:54,291
it can sort of challenge
our equanimity a little bit.
537
00:30:54,291 --> 00:30:58,916
Boundaries become blurred, and
assumptions are made, as we all know.
538
00:30:58,916 --> 00:31:02,041
You know, people tend to
talk over your head quite a bit.
539
00:31:02,041 --> 00:31:04,791
And I was really frightened
that people would assume
540
00:31:04,833 --> 00:31:07,000
that I had knowledge that I may not have
541
00:31:07,041 --> 00:31:09,083
and that they would talk over
my head, and there would be gaps
542
00:31:09,125 --> 00:31:12,166
in my understanding of exactly
what was going to happen.
543
00:31:12,166 --> 00:31:13,916
And so, I made it clear
with all of my doctors,
544
00:31:13,916 --> 00:31:18,541
"Please talk to me like you
talk to all of your other patients.
545
00:31:18,541 --> 00:31:23,000
Don't let all of these years of
training and rigour go out the window
546
00:31:23,041 --> 00:31:27,041
because you think you're going to do
me a favour by cutting a few corners
547
00:31:27,083 --> 00:31:30,708
and just getting right
to the final statement."
548
00:31:30,708 --> 00:31:34,250
I really needed to hear it,
like all patients needed to.
549
00:31:34,250 --> 00:31:39,041
In part because it was overwhelming
for me emotionally, and I wasn't well;
550
00:31:39,083 --> 00:31:41,500
I wasn't thinking as
clearly as I normally would.
551
00:31:41,500 --> 00:31:44,916
And so, for a number of reasons,
it was really important for me
552
00:31:44,958 --> 00:31:47,833
to be treated just like a patient
553
00:31:47,875 --> 00:31:52,125
and not to feel that someone was
trying to go the extra mile for me
554
00:31:52,125 --> 00:31:55,375
by talking to me at a very
high level or something like that.
555
00:31:55,416 --> 00:31:57,708
I didn't need that at that time.
556
00:31:57,708 --> 00:31:59,166
The doctors and the nurses
557
00:31:59,208 --> 00:32:02,083
and the allied health
professionals were fantastic at that.
558
00:32:02,083 --> 00:32:04,000
They were so skilled,
559
00:32:04,041 --> 00:32:08,000
and they immediately allayed
any fears that I might have had
560
00:32:08,041 --> 00:32:09,875
that that would be the case that
would sort of turn out that way.
561
00:32:09,875 --> 00:32:11,291
It didn't.
562
00:32:11,333 --> 00:32:14,916
They were really, really
excellent at what they did.
563
00:32:14,916 --> 00:32:20,250
But somewhere in our training,
I guess, we get armoured up
564
00:32:20,291 --> 00:32:25,333
to believe that we can't experience
disease because we cure disease
565
00:32:25,375 --> 00:32:29,041
and that we are somehow
different from others when, in fact,
566
00:32:29,041 --> 00:32:32,416
we are as vulnerable as
all of the patients we treat.
567
00:32:33,250 --> 00:32:36,625
And one of the other things
that I started thinking about
568
00:32:36,625 --> 00:32:38,375
as I was going through it
569
00:32:38,416 --> 00:32:42,583
was that we have this compassion
and empathy for our patients.
570
00:32:42,583 --> 00:32:43,708
And it's very real.
571
00:32:43,708 --> 00:32:48,291
It comes from a very real,
genuine place, I believe.
572
00:32:48,291 --> 00:32:52,041
And yet, when we get sick
ourselves, we judge ourselves.
573
00:32:52,083 --> 00:32:55,416
We see illness in ourselves as weakness.
574
00:32:55,458 --> 00:32:57,791
And I couldn't get over
that for the longest time.
575
00:32:57,833 --> 00:33:02,291
I carried a big stick and
flagellated myself for getting sick.
576
00:33:02,333 --> 00:33:07,916
And we need allow ourselves
to have or to permit
ourselves, I guess,
577
00:33:07,958 --> 00:33:12,833
to experience illness the same
way as the people we care for.
578
00:33:12,875 --> 00:33:16,541
And I think that it can extend
even within our community
579
00:33:16,583 --> 00:33:19,416
to something that is
also to be unwished for,
580
00:33:19,458 --> 00:33:22,541
and that is when we judge
our colleagues who get sick.
581
00:33:22,541 --> 00:33:24,958
You know, I mean, we need
to be more caring.
582
00:33:25,000 --> 00:33:28,208
We need to be more
accepting within ourselves.
583
00:33:28,208 --> 00:33:32,666
And I think that pushing for better
wellness within our medical community
584
00:33:32,708 --> 00:33:34,833
is something that's
always worth striving for.
585
00:33:35,416 --> 00:33:39,416
You know, there's so
much to take apart in what you just said.
586
00:33:39,458 --> 00:33:42,291
But one thing I really think
is this idea of compassion,
587
00:33:42,333 --> 00:33:44,083
that compassion for other people.
588
00:33:44,125 --> 00:33:49,291
We know that in many cases, people
in general struggle with self-compassion,
589
00:33:49,291 --> 00:33:53,833
but in medicine, of course, there is this
perception that exists in certain quarters
590
00:33:53,833 --> 00:33:57,958
that self-compassion is a kind of
weakness, a kind of self-indulgence.
591
00:33:58,000 --> 00:34:02,708
We are averse to it
despite literature that tells us
592
00:34:02,708 --> 00:34:04,291
that actually it does
make us better doctors
593
00:34:04,333 --> 00:34:07,875
and does help with personal
resilience, et cetera, et cetera.
594
00:34:07,875 --> 00:34:11,166
But there's also something
curious in there that I think
595
00:34:11,166 --> 00:34:15,000
ties right back into those roots
around medical exceptionalism.
596
00:34:15,041 --> 00:34:16,833
You know because on the
one hand, it's like,
597
00:34:16,875 --> 00:34:21,625
I don't deserve this, what other
people have, but there is a kind of, again
598
00:34:21,666 --> 00:34:23,791
grandiosity in that conditioning.
599
00:34:23,833 --> 00:34:26,791
I don't think we come to
medicine embedded with this idea.
600
00:34:26,833 --> 00:34:29,041
I think it's implanted and sort of evolves
601
00:34:29,083 --> 00:34:32,083
as we live in this professional
culture for a long time.
602
00:34:32,083 --> 00:34:36,250
But, gee, I must be terribly
special if I'm not worthy
603
00:34:36,250 --> 00:34:38,541
of the same compassion
that everyone else is.
604
00:34:38,583 --> 00:34:44,208
So, there's even this flip side to it
that it's not just I don't deserve it.
605
00:34:44,208 --> 00:34:47,791
It's like I'm special,
so I don't deserve it.
606
00:34:47,791 --> 00:34:48,625
Or don't need it.
607
00:34:48,625 --> 00:34:51,333
Like it's a complex...
or need it or require it as well.
608
00:34:51,333 --> 00:34:52,666
Yeah
609
00:34:52,666 --> 00:34:54,916
And this piece that
you talked about, again,
610
00:34:54,958 --> 00:34:59,500
I think is so interesting of
berating yourself for getting sick,
611
00:34:59,500 --> 00:35:03,875
but when we think about it, we think
about what else are we conditioned to do?
612
00:35:03,916 --> 00:35:07,583
Work without sleep, work without
food, work without expressing emotions.
613
00:35:07,625 --> 00:35:11,625
So, it really isn't a far
distance to go then to think,
614
00:35:11,625 --> 00:35:14,000
"Well, I should also be able
to work without getting sick."
615
00:35:14,041 --> 00:35:18,125
And this is one more, again,
interesting thing to tease apart.
616
00:35:18,166 --> 00:35:21,416
Yeah. It is. And we
have this medical mantra,
617
00:35:21,458 --> 00:35:24,708
and we're all very familiar with
it, and it goes something like this:
618
00:35:24,708 --> 00:35:28,458
Push. Push harder. Push even harder.
619
00:35:28,583 --> 00:35:32,750
And that, for sure, is not
conducive to healing oneself…
620
00:35:32,750 --> 00:35:34,125
…for sure.
621
00:35:34,125 --> 00:35:38,750
And so, that's something that
I think that, if as a community
622
00:35:38,791 --> 00:35:43,083
we explored more fully
and shared more honestly,
623
00:35:43,083 --> 00:35:46,416
it could make us all better at what we do.
624
00:35:46,458 --> 00:35:50,958
At least how we care for
ourselves is a big piece of that.
625
00:35:51,458 --> 00:35:56,208
I think in terms also of
this idea that you mentioned
626
00:35:56,250 --> 00:36:00,333
of treating colleagues
who are our patients.
627
00:36:00,375 --> 00:36:04,333
You make another point
that should be so apparent,
628
00:36:04,375 --> 00:36:07,458
and yet I think it so often is not.
629
00:36:07,500 --> 00:36:10,000
Whether it's when we
are patients or whether
630
00:36:10,041 --> 00:36:11,916
we're caring for colleagues as patients,
631
00:36:11,916 --> 00:36:16,250
and we forget that in the
moments when we're not well,
632
00:36:16,250 --> 00:36:20,083
our brains are not functioning
in the same way that they are
633
00:36:20,083 --> 00:36:24,375
when we are at work as the attending
physician or the physician in clinic.
634
00:36:24,416 --> 00:36:27,875
And it seems so obvious it shouldn't
even need to be said, and yet,
635
00:36:27,875 --> 00:36:31,333
I think time and time again, we make
some of those cognitive shortcuts,
636
00:36:31,333 --> 00:36:32,708
caring for each other.
637
00:36:32,708 --> 00:36:37,291
We think, "Well, I feel silly telling Rob
this, because, surely, he knows this."
638
00:36:37,291 --> 00:36:40,791
And then maybe Rob is going to
think, "I don't think he's very smart."
639
00:36:40,833 --> 00:36:44,166
And we get caught up
in all this kind of narration
640
00:36:44,166 --> 00:36:46,375
related to power dynamics and hierarchies
641
00:36:46,416 --> 00:36:49,875
and pre-existing relationships when really
642
00:36:49,916 --> 00:36:54,208
there's a need for kind of
returning back to the basics.
643
00:36:54,250 --> 00:36:58,875
And you said something else a
while ago, before our interview today,
644
00:36:58,875 --> 00:37:00,750
but you talked about this perception
645
00:37:00,791 --> 00:37:05,625
that we have that some of these shortcuts
and curbside consults are added value.
646
00:37:05,666 --> 00:37:07,583
Could you just reframe that a little bit?
647
00:37:07,583 --> 00:37:09,500
Because I thought that
was such great framing.
648
00:37:09,541 --> 00:37:14,083
Well, I think oftentimes that we are
trying to do our colleagues a favour.
649
00:37:14,125 --> 00:37:18,708
I'll see you in the hallway, and we'll
just quickly go over your symptoms.
650
00:37:18,750 --> 00:37:23,625
But in so doing, we throw
out the rigour of our training.
651
00:37:23,666 --> 00:37:28,958
We really try to distill it down
to something that's maybe
652
00:37:28,958 --> 00:37:34,541
not fully illustrative
of the larger problem.
653
00:37:34,583 --> 00:37:40,750
You know, we don't appreciate it with
the same rigour that we would normally.
654
00:37:40,750 --> 00:37:44,416
And in trying to do a
better job for our colleagues,
655
00:37:44,458 --> 00:37:49,416
I fear that it's possible at
times to do a less good job
656
00:37:49,458 --> 00:37:51,791
because of these shortcuts
that sometimes take place.
657
00:37:52,041 --> 00:37:54,541
It's not always the
case, but it can happen.
658
00:37:54,541 --> 00:37:58,458
And I think we can all see how
we could be vulnerable to doing so.
659
00:37:59,833 --> 00:38:01,750
Do you think, in your experience,
660
00:38:01,791 --> 00:38:07,958
that when we are seeing colleagues
or other health care workers as patients
661
00:38:08,000 --> 00:38:09,958
that we ask enough about
their emotional suffering,
662
00:38:10,000 --> 00:38:13,333
or is that something that we
maybe handle differently as well?
663
00:38:13,666 --> 00:38:17,958
I think we handle it differently.
I know I did; for sure, I did.
664
00:38:17,958 --> 00:38:23,625
I underplayed it because of that
sort of doctors-don't-get-sick-type thing.
665
00:38:24,250 --> 00:38:29,250
And now, as I have learned – or am
still learning – to be a patient myself.
666
00:38:29,250 --> 00:38:31,208
It's a very gradual process.
667
00:38:31,250 --> 00:38:36,291
Even though your traditional hierarchy,
in my case, got flipped upside down -
668
00:38:36,333 --> 00:38:40,541
and not gradually, but in
an instant in my experience -
669
00:38:40,583 --> 00:38:46,333
but still, it is a growing period of reall
670
00:38:46,333 --> 00:38:49,750
internalizing the fact
that you are a patient
671
00:38:49,750 --> 00:38:54,500
and in need and that you can't always
make the best decisions for yourself.
672
00:38:54,500 --> 00:38:58,750
You certainly can't heal yourself
in many of these situations,
673
00:38:58,791 --> 00:39:03,750
and you're so dependent in a way
that maybe we haven't been before.
674
00:39:03,791 --> 00:39:08,083
And that's a new role
for us to grapple with.
675
00:39:08,291 --> 00:39:14,291
Rob, you talked about a couple of things
that were really impactful and surprising
676
00:39:14,333 --> 00:39:17,666
about the whole experience, and I
wonder if you could share those now.
677
00:39:17,916 --> 00:39:19,125
Sure.
678
00:39:19,125 --> 00:39:22,500
You know, when I was told that
I would require a liver transplant,
679
00:39:22,541 --> 00:39:26,750
I had no idea what that involved.
And I alluded to that earlier.
680
00:39:27,166 --> 00:39:29,250
I didn't know how to begin.
681
00:39:29,291 --> 00:39:39,916
But as I began to search, I started to
realize the importance of how anonymous
682
00:39:39,958 --> 00:39:44,583
the donor recipient issues
have to stay by necessity.
683
00:39:44,625 --> 00:39:48,833
They have to be kept very separate
to be respectful of a potential donor
684
00:39:48,875 --> 00:39:52,125
who may have a change of heart at
the 11th hour or something like that.
685
00:39:52,208 --> 00:39:53,750
It has to be an anonymous,
686
00:39:53,750 --> 00:39:56,416
separate work-up
687
00:39:56,416 --> 00:40:01,458
so as to eliminate any
possibility of coercion, for instance.
688
00:40:02,291 --> 00:40:07,208
And while I understood
that, intellectually,
689
00:40:07,250 --> 00:40:15,250
to experience that frustrating
opacity was just challenging
690
00:40:15,291 --> 00:40:19,708
because I had all these doctors
who were cheering me on.
691
00:40:19,708 --> 00:40:21,000
They were saying, "Rob, just keep running.
692
00:40:21,000 --> 00:40:23,833
We're looking for a donor. We're looking
for a donor. Just keep running the race."
693
00:40:23,875 --> 00:40:28,333
But you have no idea where
the finish line is. You just don't.
694
00:40:28,375 --> 00:40:36,125
And so again that loss of control was
really a challenging part of the process.
695
00:40:36,708 --> 00:40:42,000
So, I want to go back for a moment
to a bit of a bigger picture worldview,
696
00:40:42,041 --> 00:40:45,083
and I'm going to ask you first, Marie.
697
00:40:45,125 --> 00:40:50,250
How has this experience changed
your perspective on medicine and life?
698
00:40:50,708 --> 00:40:53,833
I think the way that it
changed me the most
699
00:40:53,875 --> 00:40:59,333
is it made me realize the
privilege of the position I have
700
00:40:59,375 --> 00:41:04,291
and to think about privilege.
701
00:41:04,333 --> 00:41:08,708
This is something over the last couple
of years that I've thought more about
702
00:41:08,708 --> 00:41:12,125
when I've tried to talk to
people about being a donor.
703
00:41:12,125 --> 00:41:14,791
Actually, I'll take a step
back. You know, Rob and I
704
00:41:14,791 --> 00:41:21,125
decided the day after the surgeries that
we were going to talk about this, right?
705
00:41:21,125 --> 00:41:25,000
And that we had decided
that we were, even before,
706
00:41:25,000 --> 00:41:27,791
that we weren't worried
about our confidentiality.
707
00:41:27,833 --> 00:41:31,833
We were going to talk openly about it
because everyone was going to know anyway,
708
00:41:31,833 --> 00:41:34,958
so maybe it was better
that they weren't whispering.
709
00:41:34,958 --> 00:41:39,500
But as the days unfolded
after the surgeries,
710
00:41:39,541 --> 00:41:43,333
we agreed that it was important
to talk to other people about it.
711
00:41:43,375 --> 00:41:46,250
And so, that got me
thinking about what is it
712
00:41:46,250 --> 00:41:48,041
that I want to say to
other people about it?
713
00:41:48,083 --> 00:41:53,583
And one of the first things was
that it was not that difficult to do this.
714
00:41:53,625 --> 00:41:56,750
And then that made me really
kind of think about the fact
715
00:41:56,750 --> 00:41:59,875
that one of the reasons it
was not that difficult for me
716
00:41:59,916 --> 00:42:03,958
is because of this
lucky position that I'm in.
717
00:42:04,500 --> 00:42:10,791
That as you mentioned before, we
have financial stability as doctors,
718
00:42:10,791 --> 00:42:13,833
and as I mentioned before,
we have a lot of knowledge
719
00:42:13,875 --> 00:42:16,916
about the process and the
surgeries and the recovery.
720
00:42:16,916 --> 00:42:22,166
So all those things kind of take down
a lot of the obstacles and scary things,
you know?
721
00:42:22,583 --> 00:42:28,958
So, it made me think about that
and be prepared to talk about it.
722
00:42:29,000 --> 00:42:31,833
Like I remember going to talk to
someone about the experience
723
00:42:31,875 --> 00:42:34,958
of being a donor and talking
to my daughter about it first.
724
00:42:35,000 --> 00:42:38,208
And my daughters are very
wise; they always teach me things.
725
00:42:38,250 --> 00:42:39,791
And so, I was saying to my daughter
726
00:42:39,791 --> 00:42:43,583
that I wanted to talk about
the fact that having this position,
727
00:42:43,625 --> 00:42:48,541
there were some things about the
privileged position that I'm living in
728
00:42:48,541 --> 00:42:50,833
that made it possible for me to be a donor
729
00:42:50,875 --> 00:42:53,500
but that that was uncomfortable
for me to talk about.
730
00:42:53,500 --> 00:42:56,291
And she said, "You know what, privilege,"
731
00:42:56,291 --> 00:42:58,375
she taught me such a simple thing.
732
00:42:58,416 --> 00:43:01,416
She said,
"You don't need to deny your privilege;
733
00:43:01,458 --> 00:43:04,666
you need to acknowledge it
and do good things with it."
734
00:43:04,958 --> 00:43:08,166
And so, that made me think,
maybe that's what this is.
735
00:43:08,208 --> 00:43:10,875
And maybe that's what I can share is that
736
00:43:10,916 --> 00:43:15,041
maybe as health care
professionals, as doctors,
737
00:43:15,083 --> 00:43:20,000
we're in a kind of a privileged position,
and maybe that makes us really good donors
738
00:43:20,041 --> 00:43:24,791
for a lot of the reasons I said already.
739
00:43:24,833 --> 00:43:28,291
And since doing the surgery,
740
00:43:28,333 --> 00:43:31,958
I've had two pretty close friends
741
00:43:32,000 --> 00:43:36,958
or part of my personal family
connections kind of thing
742
00:43:36,958 --> 00:43:39,791
who have donated livers.
743
00:43:39,833 --> 00:43:45,125
And so, that was really neat to
me to be able to use my experience
744
00:43:45,125 --> 00:43:48,458
and the fact that I was
game to talk about it
745
00:43:48,500 --> 00:43:50,791
meant that people came to
me and asked me questions
746
00:43:50,791 --> 00:43:54,125
and I was able to help them feel
comfortable in their decision process.
747
00:43:54,750 --> 00:43:59,500
So I think that those were the
most important things for me.
748
00:43:59,541 --> 00:44:03,750
Yeah. The way that we influence
the people around us with our choices
749
00:44:03,791 --> 00:44:05,583
in ways that we might never…
750
00:44:05,583 --> 00:44:08,166
…imagine is what I
really take away from that.
751
00:44:08,250 --> 00:44:10,708
Yeah, it was a hundred percent.
752
00:44:11,166 --> 00:44:15,416
Marie, I remember even before
the surgery, we talked a few times.
753
00:44:15,416 --> 00:44:19,458
And just sort of getting
a sense of each other
754
00:44:19,458 --> 00:44:22,500
and how we felt about
what we were about to do.
755
00:44:22,541 --> 00:44:26,791
And just before the surgery,
we talked, and we agreed, I think,
756
00:44:26,833 --> 00:44:30,041
that we both felt pensive, but not scared.
757
00:44:30,166 --> 00:44:32,750
The night before the surgery, right?
758
00:44:32,791 --> 00:44:34,750
The night before the surgery, yeah.
759
00:44:34,750 --> 00:44:37,708
But at that time, I think
we even agreed then
760
00:44:37,708 --> 00:44:40,500
that this was something that we
were going to talk about and share…
761
00:44:40,541 --> 00:44:43,416
…our experience,
whether it was good or bad.
762
00:44:43,833 --> 00:44:46,125
Ultimately, it was wonderful.
763
00:44:46,166 --> 00:44:47,708
And we were very lucky.
764
00:44:47,708 --> 00:44:54,416
But it's something that we would openly
share with others to the extent possible
765
00:44:54,458 --> 00:44:57,625
because it's such an
important thing to consider.
766
00:44:57,625 --> 00:45:03,166
I mean, the idea that we can be an organ
donor and save someone's life is profound.
767
00:45:03,750 --> 00:45:07,291
Yeah. It has just been a privilege to
have this conversation with you today.
768
00:45:07,333 --> 00:45:13,875
It's amazing to hear your story, to see yo
together and to hear both of you sharing
769
00:45:13,875 --> 00:45:18,458
this incredible experience
from different vantage points
770
00:45:18,458 --> 00:45:20,541
but ending up in the same place.
771
00:45:21,083 --> 00:45:22,166
Well, thank you for having us.
772
00:45:22,166 --> 00:45:22,958
Thank you.
773
00:45:23,000 --> 00:45:25,000
It was a real pleasure.
774
00:45:25,000 --> 00:45:26,666
Oh, pleasure was mine.