Gift of Life
09
October

By Adem Lewis / in , , /


[SIDE CONVERSATION] Hi everyone. We’ll get started. Welcome to the first [email protected]
of the new academic year. It’s a good thing. I’m Jeffrey Stanton. I’m the communications and
External Relations manager here at Harvard Medical School. Our next talk, if I can
do this, is on October 28, and it will be part of
a day long celebration, commemorating the anniversary
of the 1969 initiative led by faculty and
students that paved the way for a culture of
diversity and inclusion at Harvard Medical School and
the Harvard School of Dental Medicine. The talk called Then to
Now will bring together school leadership for
discussion moderated by dean for diversity and
community partnership Joan Reid about the evolution
of the school’s diversity and inclusion initiatives. So save the date. In this monthly
[email protected] series, we’ve hosted a wide range of
researchers and physicians who have shared the
advances in medicine that are having a dramatic
impact on human suffering and disease. Today we will hear from
a patient and his journey before and after
receiving a lifesaving life changing organ transplant. Once considered an experimental
procedure with low success and high organ rejection
rates, organ transplantation has transformed over
the last 60 years through advances in medical
and surgical procedures, becoming a viable
treatment for many patients with end stage organ disease. Approximately 80
Americans each day receive transplants, but the
demand far exceeds supply. So Bill Tupper, who
is here with us today, considers himself among
the very fortunate to be among those who
have a new lease on life. Bill is an engineer and
a chemistry technologist at Brigham and Women’s
clinical labs here in Boston. Five and 1/2 years ago
and nearly 30 years since being diagnosed with
type 1 diabetes, Bill underwent a simultaneous
kidney-pancreas transplant. Joining Bill are key
members of his medical team. Melanie Hoenig who is a clinical
nephrologist at Beth Israel Deaconess Medical Center. She was the course director
for renal pathophysiology at Harvard Medical School
for more than 12 years. She has served as co-chair for
the recent curriculum reform at Harvard Medical School,
and is now the course director for homeostasis 2, which
includes renal, endocrine, and gastrointestinal
pathophysiology. And Martha Pavlakis who
served as the medical director of kidney and pancreas
transplantation at Beth Israel
Deaconess for 20 years. She’s also involved with
the transplant education for renal fellows at the IDMC. Our speakers will take questions
after today’s presentation. If you’re watching the Facebook
or live stream on YouTube, submit your questions
in the comments section below the video. And now please join me in
welcoming Bill, Melanie, and Martha. [APPLAUSE] Great. Thank you all so
much for coming. It sounds like this will be a
little bit different from some of the other sessions
that have been held here because we’re going to
really hear Bill’s journey. And by way of
disclaimer, I wanted to add that we’ve done this
together before because Bill has been kind enough to
share his story to first year medical students for
several years now. And so when he tells his
story to the students, there are different
goals in mind, and perhaps he
might go into a lot of the pathophysiology which
may be less relevant today. So it’s possible that
I will cut him off. And we’ve been
together a long time and I think feel very
comfortable with each other. So I don’t think he’s
going to be offended. But he’ll tell us. And so he’s going to tell his
story along with some slides, and then we will pepper
that with some questions and add our views, and also
take a lot of questions from you today. So Bill, you want to start off? Sure. Welcome. So it’s hard to say where
your journey starts, but this is a picture. The baby is my father
and the man in the middle is my grandfather. This was 1932. So I’m thinking he was about
22, 23 years old at that point. My grandfather at
some point after this, within the next four years,
would develop type 1 diabetes. And I don’t know exactly what
happens because you get sort of history from family members. One story was he
wouldn’t take insulin. And insulin was
only relatively new. I think it was in the ’20s when
it first started being used, and you had a boil syringes
to keep everything sterile. It was probably a less
than pleasant experience. Not that it’s a much
more pleasant one now. Anyway, he died in 1936. So four years after
this picture was taken. Is it in my genes? My brother doesn’t have it. My sister doesn’t have it. None of my kids have
developed it at this point. But the one thing
we have in common is the fact that we
both developed it what I considered late. I was 25 when I became
a type 1 diabetic and he was in his early 20s. So there’s a picture of me. And the reason why I show this
picture is because this does have an impact on my
diabetic struggle. When I was little I was
born with club feet. And so in the color picture you
can see that I’m wearing casts, and in the picture
next to it you can see I’m wearing
shoes that look like they’re on the wrong feet. I wasn’t being a wise ass,
which kids that age tend to be. It’s just that’s what they did
for people that had club feet. It was something that
was always with me. It was sort of like everybody
was always talking about it, and it was just in
the back, don’t run. Don’t do this. And it just kind
of got inside me so that when my
journey continued and I became diabetic I never was
really outgoing about it. And I think that impacted
me taking care of myself. So I had a job interview. Fast forward to 1984, I had a
job interview in upstate New York at a company called
[INAUDIBLE] Critical Care, the world leader
in endotracheal tubes. And I got the job, and they
said all you need is a physical. Well, this was the time
where the first Harvard program for health
insurance had started. And I had that. Seeing a PCP for a physical
for a job or for anything would literally take
nine to 18 months. So I was driving home and
there was a health stop there. So I stopped at the
health stop and I went in. And this is also
two to three months before I was getting married. And I’m just sitting there. Nobody else was there. There was a doctor and
a nurse, and the doctor came out and said, we’d like
to put you in the hospital. And I’m just kind of like, what? And she said, well,
you’re diabetic. I said, what? And I said, you know what? I think this will let me get
an appointment with my PCP. So I’ll call them
in the morning. Honestly, they were good. They followed up with me. They made sure I did what
I was supposed to do, but I did avoid going
into the hospital. And I was doing OK. Being a scientist engineer
type person I said, OK, I’m an experiment. I’ll be an experiment. So at the time,
even doing finger sticks for blood
glucose checks, that was all kind of relatively new,
but I was willing to do it. And then I got a job
where I started to travel, and that did me in. Traveling and diabetes. Some people can do that. And they’re so disciplined. Those are the people
that you hate. They get up in the morning
no matter where they are and they say, oh, I ran
six miles this morning before I had coffee. I’m not that person. I was not a disciplined enough
person to be able to do that. So things kind of fell apart. So this is in the
early ’90s, I’m traveling all over
the world, and then in sometime around
1996 I had a physical and my doctor said,
oh, looks like you’re spilling a little bit
of protein in your urine. So I’m going to put you on
this drug called Avapro, and honestly that was it. 1996, put me on that
medicine, and there was really no further talk about it. I would get semi
regular physicals, but nothing new and exciting. Why don’t I interrupt
just there for one second. This is a class of medicines
that decreases pressure in the glomeruli, the
kidney filters, and so would decrease wear and
tear over time. And protein spilling is
one of the first signs of diabetic kidney disease. And so this is pretty standard. And the other things that
would be important in addition to medicines like this
would be controlling the sugar and sort of everything
you’re supposed to do anyway. So as we move forward,
I use this slide mainly because if you look at diabetes
being the center leaf that’s on that web, diabetes has
so many different diseases that spring from it. So I had started kidney disease
and then in the mid 2000s, around 2004-2005, I
was working and all of a sudden a little droplet of
blood inside my eye appeared. You could just watch it go down. It was like a shadow box image. Which I probably would have
ignored, except what happened is it dispersed, and
then it just spread and it clouded my vision. So I went to see
my ophthalmologist and he told me
what was going on. And I had been treated for
a retinopathy with laser treatment where they actually
go in and just kind of shoot with a laser the capillaries
that form because of diabetes. But this was the next phase
where it was starting to leak. So of the diabetic
complications, I’ve had retinopathy and I
still get followed for that. I mean it doesn’t go away
because I’ve been transplanted. I have a little bit
of arteriosclerosis. I’ve had high blood pressure. Because it affected
my kidneys, my kidneys decided, well, we’re going to
give you high blood pressure too. So I’ve had a lot
of little diseases. I will say I’m very
lucky in some respects because I had a small
incident in the hospital a couple of years
ago, and the gentleman I was sharing a room
with was diabetic. He actually had lost a limb,
but it wasn’t due to diabetes. But he basically had neuropathy. I mean it was something
where I couldn’t even– I knew of neuropathy
as something as like tingling in your fingers
that could be quite painful and in your feet and stuff. His body was neuropathy. And all but for
the grace of God– There’s just so
many complications. And some people have more. Some people have less. Mine definitely
related to the fact that I wasn’t taking as good
care of myself as I should. Some people take wonderful
care of themselves and still have complications. It’s just one of those diseases. So at one point, I went
to see my doctor, my PCP, and my creatinine had gone
up to 1.7, which is high. It’s high normal, but high. And he said, I think
it’s time for you to see maybe a nephrologist. So at that point, I
decided I would go back– a long time ago I
had gone to Joselyn. I went back to Joselyn,
saw an endocrinologist, he looked at my
labs and he says, I want you to see
a nephrologist. And that’s how I met Dr. Hoenig. And so that journey began
sometime around in 2009. It’s been about 12 years
or something like that. Anyway, my kidneys were
starting to slow descend, and there wasn’t
like a pill that they could give me that would make it
go away or anything like that. And she was quite frank. She sat me down and
just said to me, you’re either going
to need a transplant or you’re going to need to
go on dialysis, or both. And at the time I was in
my late 40s, early 50s. She said, well, basically you’re
relatively young and that’s– if I was like 85 it would
be a whole different story, but I wasn’t 85. And I began seeing her on
a much more regular basis, just following the progress and
she would adjust my medications to try and keep me balanced. I had to adjust myself
and try and take much more better care of
myself, which I eventually started to do. Probably never got perfect,
but I got my A1C down into the 8 range. They like it under seven. But there was a point
where I think it was well over 12, maybe even hit 14. So as I’m progressing
down, it’s not something that
happens overnight. You just keep sliding down. And one of the weird
things about kidney disease in a chronic situation is you
just don’t all of a sudden feel like crap. It’s over time, and as your
body changes, you adjust to it. So I never really felt like I
was getting sicker or anything like that. I was, but I just felt
like, oh, my body’s adjusted to this new way of
being either tired or whatever. And at one point,
Dr. Hoenig said, it’s time that you talk
to the transplant team. So we set up an appointment. My first call was with
the transplant nurse, who my daughter works with now. And we did a long call. She said these are the
things you have to get done. You have to get all sorts of
testing, stress testing, blood work, blood typing, a
whole bunch of things. Why don’t I interrupt
you again for a moment? First, I just wanted to
explain the hemoglobin A1C. So you mentioned A1C. So red blood cells
live in your body for a fixed amount of time, and
during the course of the time that they’re in your body,
if the sugars are high, then think about then being
sort of decorated by sugar. And we can assess what– several months. So we use that as
a sort of marker. And you talked about a
few different numbers. And so ideally, depending
on age and other factors, we might want someone’s
hemoglobin A1C to be under 7 or a little lower to
be close to normal. And you mentioned
higher numbers. What I’d like to do
is just interrupt you for another second and ask Dr.
Pavlakis to talk for a moment about seeing patients in
clinic for kidney-pancreas. And also, one of the
things that I have always loved about how you approach a
patient who is being considered for pancreas is that you do
not judge them for the journey that they have taken, because
having diabetes and caring for it’s very hard. That’s exactly right. Yes. Thank you. It’s very interesting to
hear your story, Bill. I know pieces of it, but it’s
nice to hear it going back to your grandfather. Thank you for sharing that. So at this point
in this process, Bill mentioned that
his doctor, Dr. Hoenig, had said it’s time to start
looking into transplant. And the way that happens,
people sort of have a sense of what
being on the list means, being on the
transplant list. That I think is sort of familiar
generally to the public. But the way one gets on the list
is through a transplant center. So Bill mentioned
that he called and had a conversation with the
transplant coordinator. A transplant
coordinator is generally an RN who specializes
in transplantation. And you mentioned that
she said, OK, you’re going to have to get
a lot of testing done. So taking a step back, you might
wonder, why doesn’t Dr. Hoenig get to put him on the
list, or why doesn’t he just get to get on the list? What is the testing about? And if we think about the
transplant procedure itself, it actually like any operation
has a risk of bad outcomes. Death, injury from the
transplant, surgery itself. And then at the
time of transplant we give you a lot of
immune suppressants, a class of medications that
prevent your own immune system from battling infections and
cancers and organ transplants. So we use it to help your
body accept the transplant, but then unfortunately
you’re at higher risk of infections and cancers. So one of the most important
things about the screening to put somebody on the
list is to make sure that they don’t have
infections or cancers that would make the transplant
procedure even more risky. There will always be some risk
associated with any operation. But in order to
get on the list we have to make sure that there’s a
good chance that the transplant will help you and not harm you. So that’s what the
testing is about. And the process for
getting on the list involves not only a conversation
with the coordinator, but actually coming into
the transplant center. It is a federally
mandated process whereby you have to meet with a
transplant medical specialist. For kidneys it
would be like myself a transplant nephrologist,
a transplant surgeon, a transplant social worker,
a transplant nutritionist, and the transplant
nurse coordinator. You also have to get
some basic testing to make sure that
you’re healthy enough to undergo the transplant. And some of that testing
again is federally mandated. It’s not up to each
transplant center to sort of invent the
process for themselves. And then once somebody
is deemed healthy enough to qualify to get listed, then
you get on the transplant list. And as Dr. Hoenig
mentioned, each patient comes to transplant
having walked down their own individual journey. And we are in some
sense standing in judgment of patients
because we’re judging. If you have an active cancer,
if you’re battling a malignancy, a transplant will harm you. It’s not the right choice. If you are somebody
who absolutely can’t take their
medications properly, then the transplant will
fail because the body will recognize the transplant
as a foreign invader and attack it. So we do somewhat
stand in judgment, but the judgment is always
grounded in the value that we want to make sure
the transplant’s going to help you and not hurt you,
as much as we possibly can. What we try not to do is
judge how somebody got there. So there’s no sense of,
this kidney disease, you couldn’t help
because you inherited it. This other kidney
disease is your own fault because you use drugs or
you didn’t manage your A1C properly. There’s none of that. We basically look at
people as they come to us and try to determine
if transplant is going to help them or not. And that is very important. Sometimes people come to the
transplant process with a sense that they have to deserve
to get on the list, and that means
being a good person. Well, we want somebody
we can work with. But you could be an ex convict,
you could not be an ex convict. We don’t judge patients. I’ve also heard
people say, well, this is a good candidate
for transplant. She’s got two kids at home. You know what? Parents are no better or
worse candidates than people who have not had children. We go by very objective
medical criteria, which is to say again whether or not
the transplant will help you, or are you at risk for the
transplant actually harming you? And then that’s
somebody we would not want to put on the list. So we do try to approach the
list as objective and data driven away as possible. So I went through
a bunch of testing and when I first met
my surgeon Dr. Khawaja, I had told him I had
had a gallbladder attack 10 years ago. Never had it removed
or anything like that. He said let’s get
an image of that. I had that removed. He removed the gallbladder. And that’s when I
actually started to feel sick because
all the medicines that I was taking
to try and slow progress and stuff
like that didn’t like the fact that all of a
sudden I went through surgery. And it wasn’t
heavy duty surgery. Well, all surgeries sort of
are, but I was in and out of the hospital in a day. But the thing is is that it just
kind of changed my chemistry so to speak. And I just couldn’t move. I literally could not walk. I was just down. So talked a lot to Dr. Hoenig. And at one point I had my
blood pressure checked, and I had been riding a little
bit more on the higher side and all of a sudden I’m like
92 over 40 or something. It was very low, and
for me it was very low. And at that point,
she said, well, Avapro, which I have
been taking since 1996, why don’t we get rid of that
just to see what happens? And I stopped taking that
and all of a sudden things kind of turned around for me. So Dr. Hoenig kind of
mentioned a little bit this thing called GFR, which
is sort of the filtration rate your kidneys have. And they look at that. So the filtration
rate should be high and your creatinine
should be low. So what was happening to me is
my creatinine was going high and my filtration
rate was going low, and it dropped a lot right
after the gallbladder surgery. And honestly, miraculously,
it turned around. So it went from about
8 back up to 14. I mean it was a temporary thing. It wasn’t like I
was cured, but I was able to remove that
medicine and I had energy again. And this is stupid, but in my
head I wanted to keep working. So I literally kept working up
until the day I had my surgery. I don’t think I even
really called in sick. And that’s just my own
problems with my head thinking I have to
work all the time. So after that period
I was at a stage where Dr. Khawaja and
Dr. Hoenig thought it might be time to put
in an access [INAUDIBLE] for dialysis. I was put on the list for
I guess a perfect kidney, but I had to lose weight
before I could get a pancreas. And I wasn’t on dialysis, so
I wasn’t gaining any time. The one thing in my favor
is that my blood type was AB positive. So I’m kind of the
universal recipient, which is much different. So my initial visit with
the transplant team, one of the residents
said to me, well, it’s going to be eight to
10 years in the Boston area to get a kidney if you
can’t find your own donor. And then once he read
a little bit further he saw I was AB positive. He said, oh, it’ll
only be three years. But it makes a
difference, and it also makes a difference
where you are. That’s why he qualified it
by geographical location. Hold on. Let’s take a little
break because I want to unpack some of those things. So Bill, you mentioned that
you were feeling very poorly after the gallbladder surgery
and your blood pressure turned out to be low. You had lost some weight and
did not need as much medication. And when we took back
some of that medication, you got a little bit more
kidney function, just enough so that you didn’t
need dialysis at that time. And that gave us
the luxury of sort of finishing up your work up and
getting you ready for the last. So Martha, can you talk
a little bit maybe then about waiting time
on the list, regions, whatever else you think
is relevant from that? So some of what you
said has since changed. So the allocation system
is actually a federally run contract called the Organ
Procurement and Transplant Network, OPTN, and that contract
is held and always has been held since its inception by a
nonprofit company called UNOS, U-N-O-S, United Network
for Organ Sharing. And UNOS basically
is the body by which policies and algorithms
for organ allocation gets administered. And some of what you
said is so interesting because in December
2014 the rules changed. So when you said you
were on the list, but only for a
perfect match kidney and you couldn’t gain time
until you started dialysis, that all went away. So currently– and this
is just for a kidney now. –once the GFR that
they were mentioning, which normally
should be 80 to 120, once it gets down to 20 or less,
which is close to stage five or near end stage
kidney failure, that is bad enough for us as
long as you qualify to be able to put you on the list. And once we put you
on the list, now you gain time towards a transplant. Doesn’t matter if you’re
on dialysis or not. And that was a new allocation
rule from December 2014 when the allocation changed. And then as you
progress further, some people can get a transplant
before starting dialysis, but most can’t. I was really interested when
you said a resident told you eight to 10 years. It’s never been eight to
10 years in this region. So that’s actually was
inaccurate information. And I’m not surprised
of everything you said. That’s the first time
my ears perked up and I thought, oh,
that’s not right. He was told inaccurate
information, because it’s very difficult
to get accurate information on waiting times. The way you calculate
an average waiting time is you take a group of
people put on the transplant list and the median waiting
time is when 50% of them have reached a transplant. But some of those
people get transplants in ways that are a little
expedited, a little fast. Like Bill mentioned, he’s
the universal recipient. So when you’re looking
at median waiting times, you want to count in people who
can get an organ from anyone. Do you want to count in
people whose loved one donates an organ so that a recipient
of a live donor kidney? So it’s just very hard. There are some
regions in the country where the wait time for a
kidney is around 10 years. There’s other regions
of the country where the wait time for a kidney
is between one to two years. And this is a
geographic disparity, which you can read
about in the newspaper. It’s actually dominated
the news in terms of UNOS. Policies. I’m the vice chair of the
UNOS Kidney Committee, and we’re in the process of
putting forward I can tell you a very controversial
policy change to try to eliminate some of
those geographic disparities. But all organs are
allocated currently on the basis of regions. So region one is Massachusetts,
Maine, New Hampshire, not Vermont, oddly, Rhode
Island, a little piece of Vermont, and Connecticut. And that is region one,
and within region one there’s two donor service areas,
and neither regions nor DSAs were designed to facilitate
equitable organ allocation, their administrative regions. So we’re proposing
a radical change now for organ allocation. But dating back to
when Bill was waiting, it is true that you couldn’t
gain wait time on the list until you were
actually on dialysis. And that’s a rule
that was changed. I got lost in allocation. Was that enough, or is there
another thing I should address? There’ll probably
be more, because I know I’ve got something in my
head that’ll probably spark you up a little bit. So anyway, I needed
to lose weight though to get bad pancreas,
two things– and I– Can you explain who is
eligible for a pancreas and why would Bill
need to lose weight? So first off, just quite
simply in terms of weight, a kidney alone
transplant is an incision made in the lower
quadrant of the abdomen, usually the right
lower quadrant. What the surgeons do
is make an incision, they take the entire peritoneal
sac and push it aside. So they don’t go
through the abdomen. It’s down in the
quadrant there, and they attach the kidney to the
major blood vessel supplying the leg and the ureter, draining
the urine from the kidney is attached right
to your own bladder. A pancreas transplant involves
a connection of the new pancreas to your intestines. So the incision for
a pancreas transplant goes from right
under the breastbone all the way down to the
top of the pubic bone. And that is a bigger and harder
to recover from operation. If you will quickly. There you go. There’s the pancreas transplant. So you can see in yellow
is the organ, the pancreas, and the brown little
area attached to it is part of the gut of the donor. And the execrable
secretions, the juices that help you in digestion
have to go somewhere. So the surgeons keep that
portion of the donor duodenum, and you can see they’ve
attached it side to side to recipient intestine. And again, because it’s such
a bigger midline incision and because we’re
giving somebody a lot of immunosuppression,
when somebody has abdominal weight that
makes that incision much more likely to break down,
have wound infections. And there’s other
reasons as well, but that’s one of
the biggest reasons that we require people to be
of a certain body mass index, or lower, but not too low
before we can approve them for transplant. Whereas a kidney
transplant, we’re a little bit less strict
about weight limitations. And lastly, who is eligible– Who is eligible? –for a pancreas? So the most common way
a pancreas is allocated is, like Bill got, in
combination with a kidney, both organs from a
deceased donor that go into a type 1 diabetic,
somebody who’s completely without insulin, completely
dependent on their pump or injections for insulin. So type 1 diabetic can get both. You can also get a
pancreas transplant alone, either after a
kidney transplant, or without transplantation
in your history ever. But that’s much less common. So let’s just talk about the
simultaneous pancreas-kidney. Each center is
allowed to set what their rules are for a
simultaneous pancreas kidney. Because the outcomes get
worse after the age of 55, we limit it to 55 years
or less, body mass index 30 or less
for type 1 diabetic. It also has been shown
that some type 2 diabetics can benefit from a
kidney-pancreas transplant, and that type 2 diabetes is
a situation where there’s not only insufficient insulin,
but there’s also resistance to insulin often in the setting
of having extra body weight. So that the type 2
diabetic that we approve can’t be in the
category of obese. So we do see very
few type 2 diabetics. Mostly it’s a patient with type
1 diabetes, kidney failure, and then they could be eligible
for both within age and body mass index limitations. So one of the things I had to
do when I was first being tested is obviously I was
taking insulin, so they couldn’t
test me for insulin to prove that I was type
1 because I was going to be positive for insulin. So there’s another enzyme that’s
produced at the same time when you have a normal functioning
pancreas called C peptide. So that was tested. And in my case, or
in any type 1s case, it was essentially zero. You would have a different
level as a regular functioning person. So because I developed
it late, and they just wanted to make sure that I
was indeed a type 1 diabetic. So Bill, now you’re on the list. This is a letter saying
that you’re on the list. And we’re hoping that you
will get a kidney and pancreas before we need to
start dialysis. But I’m nervous because we
don’t have that much time. Just that low blood
pressure a few months before made you feel poorly. And then what happened? So I got my body mass index
in line in December of 2013. So this is the letter
saying that I’m on the list to both a
kidney and a pancreas. Now, what might have changed,
but was different back then at least, could be the same as
that, it’s a different list. So that three years or whatever
I was originally told kind of went away, and Dr. Mandelbrot
who was my doctor at the time said two to three months. I mean he was actually
that casual about it. And I remember
talking Dr. Hoenig and she said he’s
back a little bit. Maybe about a year. So I think on the
28th of December it was all really official. And so let’s go back. So anyway, January went
by, February went by. Towards the end of
February, my wife and I had planned to go see Paul Simon
and staying at the TD Garden. And every time we
plan something, like we get tickets for
each other for Christmas, something always happens. It’s usually something stupid. This wasn’t stupid. So I had taken off March 3, and
I was just going about my day. I got to see my parents. I had dropped my
daughter off at yoga, picked up my daughter who
was going to start– oh. By the way, I worked
at BI at the time. So I kind of knew a lot of the
inner workings of BI, which is where I had my
transplant, and my daughter was actually going to start
as a nurse the next day at BI. So she went to yoga. I picked her up from yoga. I came home. It was cold. I had throw my coat down and
my phone started to ring, and there was a message. I could hear the message beep. I couldn’t get to it
in time, and it was BI, and I’m thinking, OK, well, for
my job I had to wear a pager. If there was something
wrong at the lab, they would’ve paged me. So I look at the number, and
I’m waiting for the message, and then I get the message. And it’s from my transplant
nurse, and she said– and this is where it
gets a little weird. I mean this is great for me,
but it gets a little weird because when you think
about getting donor organs, there is somebody else involved. Not a family. And I get a phone call saying– I listen to the message. –Bill, we have 20-year-old
set of organs for you, which sounds great. It’s like, oh, I
found a brand new car. It only has 10,000 miles on it. I can get you a good deal on it. So I called back, and for me
it was all relative euphoria. So I’m trying to gesture to
my daughter what’s going on. We call my wife. The nurse Linda said,
OK, I don’t want you to go into the emergency room. I’ll call you as
you’re coming in. We’ll just put you
right in your room. So we come flying into Boston. My daughter came with us,
and we go up to the room, and there I am all ready to go. I had met with the surgeon. So the original surgeon that
I had met with, Dr. Khawaja, wasn’t on call. So like having a baby,
you don’t necessarily get the obstetrician. And I had Dr. Raven. She came in and she told
me what was going on. So my organs were being
donated in Pennsylvania. They wouldn’t be donated until
sometime around midnight. So the surgery wouldn’t
be until morning. So we’re just kind
of sitting there, and now I start
thinking all of a sudden I’m like dressed like this,
I could have one more meal, and what are we going
to do with the tickets? So I called my boss,
see if she wanted them. I called Dr. Hoenig,
see if she wanted them. My admitting nurse, Chris
went up to her and said, would you like the tickets? And see, the problem
is the tickets were worth more than $50. I couldn’t give them away. Not to medical
personnel, because I might get special privileges. So I’m kind of stuck with the
tickets there for a while, but the admitting nurse,
Tracy, said, why don’t you go? I said, well, look at me. I have an IV in my arm
and stuff like that, and she said, hold on a second. So she went, she
called Dr. Raven. Dr. Raven said be
back by midnight. You can go. So we went to the concert. I don’t know why
it’s jumping around. Anyway, there we
are at the concert, and I just remember– so one
of the side effects of kidney disease is your red blood cells
kind of drop a little bit, and I just shivered
all the time. So it was a great concert, but
I was freezing the entire time. I just shivered and
shivered and shivered. I was supposed to
be back by midnight. I got back at five of midnight. It’s kind of a Cinderella story. I get back at five of
midnight and realize that the building that my room
is in, that’s all locked up. I can’t get in that
way, and fortunately I was happy at that
point I did work there because I knew I could
get in another building and walk across. So I was able to get
back into my room. I may have missed the midnight
thing by a little bit. Did you turn into a pumpkin? No, I didn’t turn
into a pumpkin. So my wife and daughter. I forget where my daughter
had been for the concert. Everybody seemed to be there. Oh, my daughter was at home. My wife was there,
but my wife was going to drive my daughter
to work the next morning. But she was thinking, well,
I’ll stay in the hospital because they’re going to bring
me down to the OR at 4:30. Anyway, they didn’t
bring me down at 4:30. Chris was able to go
home and come back because while you
watch this stuff on TV they’re always flying
organs all over the place. My organs came up in a
car from Pennsylvania. And when I was in another
PACU and I was in pre-op, my surgeon is walking up and
down the hallway swearing. I had been given a happy
drug when they put in the IV, so I didn’t care. But she was a little bit
upset because they don’t just come and throw you into the OR. They have to check the organs. She didn’t do the
surgery to remove them. So was there enough
to work with, and was it fatty or
anything like that? So I didn’t get moved
downstairs to pre-op until 7:30. I wasn’t operated on
until 9:30 because they were stuck in traffic. So you may have been
driving right by them. So anyway, I had the surgery. And that was the
outcome of the surgery, and there I am in
the PACU afterwards. And then a year
and a half later, a mentor, a friend
of mine from college, he had had kidney cancer
and he had been on the list a long time, on and off the list
because they had to make sure he was cancer free. And the first time
we had reconnected a few years earlier, he
had just had his access put in for hemodialysis. He ended up getting
his kidney transplant. And this is the story of how
things are shifted around. He’s a little bit
older than me, he got an older
kidney, which he was more than happy to deal with. He’s doing great now. Oddly enough though, the
reason why this picture is of any interest at all is
that he’s in the same spot I was in when I had my surgery. So I can’t say it’s the same
bed, but it was the same spot. So Bill, I want to wrap up so
we have time for questions. Can you just say one
thing about what it’s like to no longer need insulin? And then you had
gotten sidetracked, but I know you wanted
to say something special about the organs that
you received, and that gift. Well first of all, my
last shot of insulin was as they were wheeling me
down to the operating room. You can never say
never to anything, but hopefully that was
my last shot of insulin. At first, like I
said, Linda told me it was 20-year-old organs. At one point Dr.
Mandelbrot had left. I had moved over to working
with Dr. Pavlakis, who I think I met the day after my surgery. And you can find out age,
sex, and cause of death? Cause of death. Cause of death. I was not ready for a lot of it. I know it’s not
much information. I wasn’t ready for a
lot of information. But it was a male. I asked a year later. He was 20 years old. I haven’t asked
the cause of death. I don’t know that I ever
will ask the cause of death because he’s 20 years old. He was in the prime of his life. It could have been a
lot of different things. And if you ever go to
YouTube and you look up– there’s a story about a
donor named Connor Eckhart I think his name is. He went to a party when he
was like 19, 20 years old, and he smoked some
artificial grass. It’s like potpourri. Anyway, it killed him. And the whole video
on YouTube shows his organs being
dispersed, and his family. And it wasn’t him. This was in California. But it was just a real person. And in Connor’s situation,
it was just one mistake. That was it. He had a severe reaction to
it, and fortunately he helped, I don’t know, maybe
up to eight people by donating kidneys,
lungs, hearts. The end of the video
is really tough to watch because the
helicopters taking off taking his heart to
a different hospital. I thought that would
be a good spot to end, and maybe we could take some
questions directed at any of us from the audience. I have a question that
already came in from YouTube. Do you think that there
will be a day when we can create artificial kidneys? Yes. I would say yes
because if you think about the exponential pace
of technological innovation, I can’t see it not happening. We actually do have
artificial kidneys. It’s called dialysis. It’s outside the
body and it’s what’s keeping hundreds of
thousands of people alive. The challenge is getting
the artificial kidney that we have to be able to
be implantable and permanent. And that we haven’t
gotten to yet. So we do have
artificial kidneys. They are not implantable yet. My dream is either
that or somebody like Bill in renal failure
comes to the transplant clinic, a technician does a scraping
of the inside of their cheek, we say come back in six weeks,
we’ll grow your kidney for you, and again a surgical
technician sews it in and we don’t need the
immunosuppressants. I mean there’s all
sorts of dreams I have, and what I tell
patients is I am really hoping that at some point
these things will happen. And wherever I am, I want
someone to come shake me awake from my nap in the nursing
home and tell me about it. It’s not right
around the corner, but hopefully it’s
not too far off. Thank you Hi, Bill. Hi. Thank you for
sharing your story. That was really touching
and also really informative. So you mentioned that your
organs came from Pennsylvania, but I don’t think
they are in the region that you mentioned earlier. So can you just talk
a little bit more about how, not getting
too much into the details, like how the organs
actually move around the different regions? Absolutely. So what we currently have is
organs are allocated locally, then regionally,
then nationally. And it’s an algorithm basically. So when you are put on the
list, all of your information and some of your important
biologic characteristics are put into the algorithm. And then when somebody becomes
a donor, they are also evaluated and their important biological
information is put in, and then a match run is created. A match run is basically
a list, generated, saying the top person on the
list is patient x at hospital x, and that person’s transplant
team is called and offered the organs. Now, if that patient actually
just had a heart attack or they can’t find that
person that evening, they quickly say no and
it goes to number two on the list, number
three on the list. Kidney-pancreas offers are
a little bit harder to place because there’s fewer people
with type 1 diabetes waiting for those organs. Pennsylvania is
in another region, and what must have happened
is that nobody in the region qualified for those organs. And so they immediately–
because they want to place the
organs quickly. –went just outside the
region and Bill’s name must have come up. So some organs are
placed nationally ahead of everyone else in the region. For instance, one of your
biological characteristics might be that you as the
candidate waiting for an organ that you have a lot of
proteins in your blood that would fight other
people’s transplanted organs. And if you have a lot of
these that develop either through pregnancy, transfusion,
or prior transplant, it might be very hard
to transplant you. So we prioritize those
people nationally. So an organ becomes available
in Arizona and the algorithm first looks to see if there’s
anybody in the country that is, what we call 100%
sensitized or loaded with these antibodies,
that make them very hard to transplant
who could get that organ and accept it. And if they do, it
goes there first. And so there’s a very
complex algorithm and I’m guessing that nobody in
the Pennsylvania regional list could or did accept
these organs. Since, as you say, they were
from a 20-year-old donor, I’m guessing that there was
nobody with that blood type that was ready for
transplantation. So they came outside
the region to Bill. We have a question from Egypt. Can you clarify the impact
of a cancer diagnosis on organ transplantation? Does any history of cancer
exclude an individual from inclusion on
the transplant list, or is it possible
to receive a donor organ if the cancer is in
remission and tests are normal? Very simple answer. Depends on the cancer. But yes, it’s
absolutely possible to get organ transplantation
if your cancer is not only in remission, but
many of these cancers have a very low
chance of coming back and your testing is normal. There’s usually a wait time. So even if you’ve had
a wonderful response to your cancer therapy and
everybody is very encouraged, often there’s either two or four
or even a five year wait time before we deem it
safe to proceed with organ transplantation. And it really varies
from cancer to cancer, but many patients with
a history of cancer do qualify for and end
up getting transplants. Yeah. I have a question here. So thank you for
sharing these knowledge, and I’m currently working
on transplantation research. So I’m pretty interested
in like the immune response after transplantation because
I think you guys just mentioned about immunosuppression
drugs, which could be used after transplantation. Because my research is like
a lot of academia things, so I’m pretty interesting what
is like the clinical stage about immunosuppression drugs? Like how effective they are. Are they only two T cells,
or both T cells and B cells can be controlled? So I can touch on the
mechanistic side and, Bill, you can touch on what it’s like
to live on immunosuppression. So as you know the
immune system is designed to protect us
from foreign invaders, internal tumors. And it is brilliant. The adaptive immune
system really has multiple different avenues. So even if one of the
arms of your immune system is dysfunctional, there’s other
ones that can protect you. Very important to the
survival of any species. So the current immune
suppression that we use is multi-faceted so that we’re
targeting different limbs of the immune system. So there’s three main drugs
that people tend to be on. One is a calcineurin inhibitor. And this is basically
any lymphocytes that get activated
by interacting with the antigen they’re
programmed to respond to. That message has to get
to the cell’s nucleus in order to turn on
gene transcription and make an immune response. And the calcineurin
inhibitors prevent the message from the cell surface from
getting to the nucleus. And that’s in lymphocytes
B and T, predominantly T. Another class of
drugs we use are called the antiproliferatives. So anytime you have
an immune response, cell recognizes an invading
protein, the very next important step is
that you have to have a lot of cell reproduction
to create an army to fight that invader. If just one little cell
was running around trying to fight it, it can’t do it. So the cell
reproduction involves a lot of DNA replication. So the antiproliferatives, like
Mycophenolate and azathiprine, block cell replication. So even though the
cell mate, the antigen may trigger an
immune response, it doesn’t turn into an army
to fight the invader, in this case the transplant. And then there’s
good old prednisone, which has a lot of effects. There’s glucocorticoid
response elements on DNA promoter regions
that prednisone inhibits. It decreases inflammation. It comes down arms of
the innate immune system. And so those are generally
three types of agents. So we try to block the immune
system in different ways to both keep the person
from rejecting their organs, but also keep them healthy. If we use too much
immunosuppressant, the person is more likely to
die from infections and cancers. As far as being on
immunosuppressants, fortunately– and Dr.
Pavlakis would probably have to explain it, but
I’m not on prednisone. Many people,
particularly kidney only, also is somewhat I
think dependent on where you had your transplant. But I’m on two drugs,
tacrolimus and Mycophenolate. And you start at a
relatively high dose. And I actually talked to a
colleague that has recently become a pharmacist and
he said that at least with like tacrolimus,
it takes a while for it to kind of build
up in your system. And then as it’s
built up– and I may be wrong about
how it has done that, but my dosage has come down. I’m on a very low
dose of tacrolimus and I’m on half the dose I was
originally of Mycophenolate. Initially, for me, and
I still do a little bit, my hands shake. I have like this pseudo
Parkinson’s type thing. So if I’m handing somebody a
piece of paper, it’ll shake, or if I say, look at
my picture of my dogs, it’ll look like my dogs are
wagging because my hand will be shaking. But it’s not all the time. I work in a lab. I can pipette without
any difficulty, but it’s just
something that I have. I think both drugs can kind
of cause sleeplessness. I’ve heard that
Mycophenolate may be the bigger contributor to that. I’ve had some trouble sleeping,
but it’s gotten better and I guess my body’s adjusted. A lot of people complain
about losing hair. My dad was bald. My brother’s bald. I don’t think I’ve really
lost much more hair. Honestly I read about it
a lot on transplant sites on Facebook. I understand for women
it’s a lot different. If I had to, I’d
just shave my head. I don’t really see that
as a big hindrance. I’ve never had some
of the complications that you read of on the bottles. Gastrointestinal problems
or anything like that. So with insulin, you
have to understand, even if you have a
pump, some insulins have to be refrigerated. I mean obviously
the ones in the pump isn’t refrigerated, but
have to be insulated. Traveling with
needles and traveling with caps and different things
like that is really a pain. It’s so easy for me to collect
my pills and just take off. When I was diabetic, I went
to a conference in Dusseldorf, went to take my
short acting insulin and realized that it
was still in Danvers. So I had to go to a
chemist in Dusseldorf and try to figure out
with him what I could do. And he was able to give
me some inserts that were pretty much the
same, because I was there for two weeks. And insulin is just a very
difficult thing sort of to travel with. I will say I was lucky. I never had a card that
said I’m a diabetic. When I went through the TSA,
I just took my insulin out. They never questioned me
or anything like that. So life on
immunosuppressants for me and whatever is with my body
chemistry, compared to insulin it’s a cakewalk. But it hasn’t been bad. We have one final
question from YouTube. Could you speak a little
bit about the organ donation process? Specifically, what
rules are in place to ensure that individuals
that have chosen to donate their
organs upon death will have their wishes honored? So there’s two ways to
have your organs donated. One is, there’s living donation. And obviously it’s only
organs that you have two of and you can spare
one, or like the liver where they can take part. So there’s liver and
living donor kidney. The question sounds
like it’s specifically about deceased donors. So when somebody has
died, is brain dead, or is about to
suffer cardiac death and the organ bank
is called in, they have a protocol to
do a number of tests to ensure that the organs would
not carry disease, infections, or cancers predominantly, but
any disease to the recipients. What was the second
half of the question? What rules are in place to
ensure that your wishes are being respected? Oh. That people’s wishes
are respected. So in America when
you die, your body actually becomes property
of your next of kin. So there are rules that
sort of dictate that. Now, you can sign your organ
donor card on your license. But I don’t know if you remember
the public health push recently that was tell your
family, because it’s very upsetting to
a family who’s just gotten this awful news that
their loved one has died, to then also hear about their
wishes for organ donation at the same time. Sometimes it’s confusing. But what teams from the
organ bank have found is that it’s very
important to separate out the team that is caring for
the person who then dies, and the team that is
going to ask for agreement for organ procurement. Now, if family
members are basically standing outside
the room saying, we don’t believe our loved one
is actually dead and get away, you’re not actually
going to take any organs. The organ bank does not
have hospital security come and remove the
family physically because we’re going to abide
by the person’s wishes. What they don’t do
is go to the family and say we’re looking for
your consent for donation because the person who’s died
has already granted consent through the organ donor card. But they inform
them of their wishes and explain to them how
the process will go. I’m not from the organ bank. And so I hope I’m representing
what they do adequately. Probably somebody in the
process could explain it better, but I know that they work a lot
on the sensitive but effective methods of having the
person’s wishes honored. Thank you to our speakers. Thanks for coming. See you again on October 28. [APPLAUSE]


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