Episode Transcript
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Speaker 1 (00:00):
Hi, I'm Sylvia Moss. This is Insight, a presentation of iHeartMedia,
where we really do care about our local communities and
all our listeners who live here. The topic we're going
to discuss today has recently become a very personal one
for me, and I hope you don't mind me sharing
it with you. A little over five years ago, my
brother Greg went into the hospital for a routine checkup
(00:21):
as he prepared to retire. Nothing unusual, just the kind
of visit you make when you're ready to start a
new chapter in your life. But instead of heading into retirement,
Greg's doctor told him he wasn't going anywhere because he
needed a kidney transplant. My family was shocked and certainly upset,
and Greg was always so healthy. We thought, as I
(00:42):
usually do when something serious happens to somebody I care about.
I started doing my research, and what I learned surprised me.
Kidneys Kidneys are the most frequently transplanted organs, and most
people who end up needing a kidney transplant don't get
there suddenly. It's almost always the result of years of
silent damage from long term health conditions. The two biggest
(01:02):
causes are diabetes and high blood pressure, and together they
account for most cases of kidney failure. Greg had both.
With nearly half of the US adults living with high
blood pressure. Do you hear what he said? Half of
US adults are living with high blood pressure and more
than forty million Americans living with diabetes. The long term
(01:24):
impact on kidney health is enormous. These conditions are so
widespread that they drive much of the need for kidney
transplants in this country. Right now, more than one hundred
thousand people in the United States are waiting for an
organ transplant. Every eight minutes, somebody knew is added to
that list, and each day thirteen people died just waiting
for the transplant that never comes. When Greg got his diagnosis,
(01:46):
those numbers suddenly felt painfully personal. They weren't just statistics anymore.
They were the odds stacked up against my brother. So
my mind was spinning with questions. With so many people waiting,
how in the world they're ever going to find a
healthy kidney for my brother Greg. When an organ becomes available,
what determines who moves to the front of the line,
And of course the obvious question, could my two other
(02:07):
siblings or I step in and give Greg one of
our kidneys. Well, neither of my siblings nor I were
a match for Greg, but after four months of waiting
and praying, Greg received the kidney of a young man
who had just passed away. The Gift of Life Donor
organ donor program is extremely personal for all of us.
It's all about all of our families, you, my listeners, me,
(02:29):
all of our futures, and the extraordinary generosity of those
wonderful organ donors. With all of this in mind, I
can guarantee that nobody knows more about organ donation and
second chances than my guests today. For her, it all
began when her dad needed a heart transplant. It was
an experience that shaped Wendy Johnson's life and her calling.
(02:50):
For more than twenty years, she's been serving as a
community relations supervisors for the Gift of Life Donor Program.
Every single day she leads the work of educating the public,
supporting donor families, and strengthen community partnerships to increase organ
donation awareness. And that's a major part of what I
would like to get to through to my listeners today,
how extremely important organ donation is. All that I need
(03:15):
to get down and take a rent. That was a
long intro and it's wonderful to see you. Ya was
telling her off of mine that I'd been thinking about
her for a long time, and maybe with Greg going
through what he did, it was a push to get
her in because I've always thought this was an extremely
important thing. As I mentioned, your perspective about organ donation
(03:35):
is different because of your dad getting a heart twenty
years ago. How did it really impact? It didn't make it.
You've experienced the emotional part because one of the things
you do is when somebody passes away, you talk to
the family about organ donation, right, absolutely tell us about that.
Speaker 2 (03:54):
So the experience that I had with my father, you know,
I'm the oldest of three, as am I of four,
and you're always the oldest of three, your daddy's little girl.
Speaker 1 (04:06):
Oh yeah, yeah.
Speaker 2 (04:07):
And so getting that call from my folks saying that
there was nothing more that they could do to help
save my father's life, it was devastating to me, knowing
that I don't know how long I would be without
if he would survive. I didn't know anything about transplants
at that time. It was in nineteen ninety two, so
(04:30):
transplants were pretty pretty new so and there wasn't really
much of a wait list. The national weight list I
think around that time was approximately thirty thousand people and
we're looking embarking of over one hundred thousand now, so,
you know, just and I knew at that time that
(04:50):
in order for him to survive, some would have to
lose their life.
Speaker 1 (04:55):
Yeah, that's it.
Speaker 2 (04:56):
And so a lot of praying and just supporting him,
and you know, I look back and think this had
to be his purpose because afterwards, after he received his transplant,
we did a lot of things together and that I
(05:17):
would never ever forget him sharing his transplant journey and
me being able to share what I do with gift
of life. We never met his donor family, he wrote
every year I wrote, and never not a response.
Speaker 1 (05:36):
What did you find anything out about the donor at all?
That you knew?
Speaker 2 (05:39):
Like all that? Yeah, all that we knew was that
he was ten years younger than my father and at
that time he was forty nine years old.
Speaker 1 (05:47):
Well Greg, I think Greg Sterner was eighteen. And he
also he felt after the transplant there were emotionally it
bothered him that it was a young kid. I know
that never met the kid but then.
Speaker 2 (06:01):
I look at it as this is something that a
person passes away, they the hospitals do everything possible to
save them that life, and when that's not possible, this
is something of a legacy that can be given. And
so I'm grateful every day that that family and other
(06:23):
families that today have that during their difficult time of
losing a loved one, that they're able to step away
and say yes, share my share my loved one with
someone else and being able to leave that legacy.
Speaker 1 (06:41):
What reasons are you dealing with these families? What reasons
would they say?
Speaker 2 (06:44):
No? Most times it's just communication and knowing what each
one's decision was.
Speaker 1 (06:52):
So you should let your family know. That's real important
before because who knows. We never know when we're going
to pass away. You should let them know. If something
happens to me, I want to donate my kid or
any of my organs exactly.
Speaker 2 (07:06):
Yeah, And you know it's very common for us when
we go get our driver's license, that question is asked.
You know, it's perfect time to go home and say,
look at my license.
Speaker 1 (07:18):
Yep.
Speaker 2 (07:19):
And it's a very easy conversation then, because nowadays we
can have we have the symbol, the heart symbol on
our license. So just saying show me your heart, you know,
and begin that conversation. But yeah, it's a legacy that
someone can give something that doesn't cost a dime.
Speaker 1 (07:39):
Yeah, that's the thing that's yea. And what does how
many people do? Like, if somebody is decides that they
want to be an organ doner, how many organs can
they donate?
Speaker 2 (07:49):
Well, depending on their circumstances of death, they could be
have an illness or maybe an injury that to the
organs that they may not be able to But if
they could give everything, they couldn't help save the lives
of eight people through organs.
Speaker 1 (08:02):
Wow? Yeah, eight people, My god, that's incredible. Tell me
your organization is the largest organ procurement organization in the
whole country. You serve how many like almost twelve million people?
Speaker 2 (08:16):
Yeah, just about eleven parts million?
Speaker 1 (08:18):
What area do you particularly what what are you responsible for? Yeah?
Speaker 2 (08:22):
So or our region consists of anywhere east of state
College of Pennsylvania, southern New Jersey, in the state of
Delaware is our region.
Speaker 1 (08:33):
I want to talk a little bit about. Okay, the
person's waiting you some of your family is what you're
told but can't save the heart, can't save the kidney,
can't save the liver, whatever is we're going to be.
A person's going to be put on a waiting list. Okay,
so how does that work?
Speaker 2 (08:49):
Is that?
Speaker 1 (08:49):
Do you ask the family verst Is there anyone here
that wants to see if they're a match first or
how does it work?
Speaker 2 (08:56):
Yeah, So, someone that is in need of a life
saving organ transplant, usually there are they're working with a
transplant center in their area. You know, for some organs,
we can donate. Why we're living kidneys, because we have two.
You can survive with one kidney, so you can donate
your kidney when you pass away. And you can also
be a living donor over the age of eighteen. You know,
(09:18):
the bottom blobe of our lung can be donated, and
then a portion of our liver can also be donated
while we're living. But all of that in mind, keeping
in mind that that person has to match different blood
type is one, they have to be a blood type match.
Someone that is placed on the transplant list, those one
hundred thousand people, you know they're on there by the
(09:40):
sickness and how long that they have waited and so
all of those come into play when when someone has
passed away or someone that's donating, so understanding that you
know a heart could probably go to someone if it's
an adult heart, you wouldn't want to donate that to
our child because it would be too big. So all
(10:00):
of those things that factor in. For someone to receive
a transplant, that must be different. It's a very small window.
Speaker 1 (10:07):
Oh wow. Will you guys work with twelve big hospitals
in the area and locally, I think, what is it Geisinger,
Penn State UPMC, and what goes on between me a
Pen State? Well, what goes on between the family and
the hospitals? How is that coordinator? Or do they call
you and say, hey, we have a kidney for your uncle.
(10:29):
How does that work?
Speaker 2 (10:30):
Oh? No, So when someone has passed away in a hospital,
the hospitals are required to call an organ procurement agency,
which is Gift of Life in this region. And then
what we do is we go in and we sit
down with a family and talk with them about their
opportunity for donation.
Speaker 1 (10:46):
Okay, that sounds great. One of the major things that
you do is you're supporting a family. As I said,
when somebody when somebody's passing passed away, and I kind
of how difficult that must be, especially if there's a
young kid.
Speaker 2 (11:04):
It's a lot of training that we do our staff.
We have a very robust staff that gets trained to
sit down and talk with those families at that time.
We also have a department, family Support department that helps
support those families. They're gone through grief, just like anyone
else that's lost a loved one, So we provide free counseling.
(11:25):
We have counselors on staff that can provide counseling anytime
throughout the donation process and beyond. You know, someone may
not you know, need counseling right away, but maybe afterwards
a few years or whatever, you know, they may need counseling,
So we help with that as well. I'm sorry, go ahead,
but our Family Support department also we host a really
(11:49):
nice ceremony every year in memory of our donor families
and so just telling them that their loved one is
not forgotten. You know, they're living on in others and
it's just a very nice way to say, you know, thanks,
thank you, and knowing that their legacy is living on.
Speaker 1 (12:04):
Are you surprised, I mean, you have people who get organs.
People that are donating have just donated from their family
member or whomever was passed on, and then you have
the person who's actually getting the kidney. That's not a
lot of emotion. You guys must have a lot of training,
because I'd be balling all the time, you know, talking
(12:25):
like that, I would imagine it's hardest. Well, I can't
judge that. I was going to say. I mentioned it's
hardest when someone loses a child to donate their organs.
What's been your experience because the child, in most cases
haven't had a chance to experience life.
Speaker 2 (12:42):
Right right, It is difficult. I see that. But what's
really amazing is seeing those those little ones that are
waiting too for a transplant, yeah, and knowing that they're
now back playing football or basketball or I know, doing
those things. And if it wasn't for that that don't
family to say yes, you know, they wouldn't be here.
(13:03):
So it's kind of like a bittersweet. Yeah, you know,
the stories are amazing.
Speaker 1 (13:08):
Please can you share any of the stories with it?
Speaker 2 (13:11):
I really can't. But just the fact that you know
they're out there and the different things that they have
experienced just knowing that their loved one is has saved
a life. So, you know, hearing that, knowing about someone
on the other side receiving that gift of life an
(13:34):
amazing journey that now they can go on and live
their life and have children and have a family and
all of these things that you know, our recipients never
forget that where their gift has come from, and they
came from a donor family saying yes.
Speaker 1 (13:50):
Well, how often do they meet?
Speaker 2 (13:53):
The meeting doesn't happen too often. I can only recall
just being with gift of life, you know, twenty plus years.
I've only really heard of twice in my time that
they've met, but we hope that they would, you know,
after the transplant, you know, we always encourage the recipients
to you know, write a letter thank you to their
(14:15):
donor family of course, and then the donor families will
want to share what they're loved one was to the recipients,
so they'll write letters about their recipient, and that writing
back and forth sometimes occurs, you know, maybe a year
or so, and then that letter may come saying I
want to meet you, and so through our family support services,
(14:38):
they set up some meeting location and they're able to meet.
And it doesn't happen very often, but when it does,
it's really special.
Speaker 1 (14:47):
Well you know you of course, I know they find
out when someone needs to transport, they find out if
it's something. I mean, they're not going to ask you
for your heart, you know what I mean? Family members.
As I said, I have a I'm the oldest of
four kids. I'm the oldest. Then there was my brother Greg,
and my brother Kim, and my sister Margaret. So we
were all jump at the chance to help us try
(15:10):
to help save Greg, but none of us were match.
So you do have a program that I recently found
out about that I think is really really awesome where
you can commit to donating an organ Will you explain
what I'm talking about? And then somebody you know, don't
know how does that work? Do you want to refer
to what's it call?
Speaker 2 (15:30):
Yeah, it's a pair of kinney exchange, that's it.
Speaker 1 (15:32):
That's it. Yeah.
Speaker 2 (15:33):
So what happens is if like a husband and wife,
the wife's going to donate to her husband, but they
don't match, they actually find maybe another pair that don't match,
but they may pat they may match each other's right,
So you know, so the husband, you know, would receive
from maybe the other the wife from another group or whatever.
(15:56):
So it's a paired kidney exchange. Does that happen often
living donation? Yeah, it does. And then you know, there
may be someone that comes forward and just says, I
want to donate my organ so they may start that chain,
you know, anonymous donation of a kidney, that may start
that chain to get that match going. So it does happen.
(16:19):
It happens is just as much as what deceased donation
does per year. And that's the way that we're going
to have to, you know, get those numbers down and
keep those people off the absolutely with both deceased and
living donation.
Speaker 1 (16:33):
Yeah, I'm so glad that's somebody like you this spreading
the word about this. You mentioned being able to register.
It's as you said, it's so easy when you when
you register your courage or your driver's license. I got
it online. That takes a short period of time. You
can stop down at the at pen dot and do
(16:54):
it there too, or do it online too well, catch
it in a couple of different ways.
Speaker 2 (16:58):
Yeah, when we get our driver's license renewed every four years,
you're asked that question before you get your picture taken,
and so you can register that way. You can go
online and register through the DMV too. The other way too.
Now most most people have iPhones and they have a
health app on their iPhone, and so that's our national registry.
(17:19):
So you're able to put your your register that way
as well. It's and then you can go to our
website too and sign up.
Speaker 1 (17:27):
And well, no matter which way you do, it goes
to the National registry.
Speaker 2 (17:32):
Right, they're two separate. The National Registry is national, okay,
and then in your state you have this state registered
just the driver's license.
Speaker 1 (17:40):
So if someone needs an organ I guess it's somebody
at the hospital reaches out to both of these and
see what's available.
Speaker 2 (17:50):
Know what happens is at the time of the patient's
death and we get called to come in and sit
down with the family and talk with them about organ donation,
we will call the Department of Transportation and obtain that information.
And then we also are able to call the National Registry.
Now I'm able to get that information about that person
if they're registered organ donor.
Speaker 1 (18:11):
Okay, I understand. So then as far as getting the
actual organ itself, who's responsible for that? Like who? Okay,
Like my brother went and he needed a kidney, how
do they find out, like after they checked us as
family members out, what is the step? Do they call
somebody at the national organization?
Speaker 2 (18:30):
How does that work? The United Network for organ Sharing
actually houses the list of everyone that's waiting for our
life savings.
Speaker 1 (18:37):
Okay, and then that this is so based on those
those prerequisites right now.
Speaker 2 (18:42):
The medical condition of our donor, and then that will
be sent to the registry and then they bring up
the patients that are closest to the match on the list.
Speaker 1 (18:53):
And then they call the hospital and say, hey, wa
this is available for you.
Speaker 2 (18:56):
And then what happens is then we coordinate with the
transplant hospital and the patients.
Speaker 1 (19:02):
That theyre closest to the match. Okay, Wow, that's amazing,
I guess there. From what I understand, especially with kidneys,
people are on dialysis for years waiting for kidneys, and
like I tried to stress in the middle of the
of the problem I was talking about is it's when
you have kidney issues, if it's something like they should
don't know it until later in life. And the way
(19:24):
number one, we're stressed, so half the country most is
on blood pressure pills. Diabetes is epidemic proportion. So those
are the two major things that are going to destroy
your kidneys. And there are probably a lot of people
in older life that's when kidney's I would imagine, are
needed the most after all those years of abuse.
Speaker 2 (19:45):
Yeah, that's a shame and it really doesn't you know,
depending on the circumstances of their deaths and who's the
answers to the match would get you know, those organs.
Speaker 1 (19:55):
Wow, it's amazing. I love to talk about you and
what you do. I love the fact I like you
hear stories about like yours with your dad and this
has been your life's mission to get the word out.
But you, like me, are all about partnerships. So you're
willing to go to businesses, to go to churches, to
(20:15):
go to nonprofits, community groups and talk to people about
the gift of life. And also if they want to
send up our start a registration drive to get people,
you'll do that. All you have to do is get
a hold of you right.
Speaker 2 (20:28):
Yeah, April is a good time. April is our Donate
Life month's time and so we bring awareness that whole
month about organ in tissue donation. And then in the
fall we have we also have the National Donor Sabbath,
so we partner with houses of worship and talk about
that opportunity as well. But there's different times throughout the
(20:49):
year that will bring awareness to the community. In August
August first, every year, August first being the eighth months
and being the number one one eight lives can be
saved by one person. That's Pennsylvania Donor Day. So we
encourage all businesses and people Pennsylvanians to look at educate
(21:11):
themselves about organ and tissue donation and registering themselves as
an organ donor that day. So that's Pennsylvania Donor Day.
So we really encourage everyone to take a step.
Speaker 1 (21:21):
I think it's great. It's great you were mentioned about
the different organizone tissue. When you're talking about tissue, like
you hear a lot about bone marrow transplants. Is that
what you're referring to or what?
Speaker 2 (21:33):
No, I'm referring to cornias of your eyes, skin for
burn victims, saftness, veins for bypass surgeries, heart valves for babies. Yeah,
can be used.
Speaker 1 (21:50):
And see that's the thing we keep on saying. It's
almost every week. I'm always saying people don't understand the
impact of what you're doing or how it's going to
impact their lives. People think like they live on sound
bites like when you hear organ donation, you think heart, heart,
heart heart, And yes, absolutely positivity is heart. But what
(22:14):
the Gift of Life donor program does when they educate you,
it's let you know it's a whole lot more than that.
A lot more people can be saved. People don't eat.
A lot of people don't even know that. I found
out and I'm known this is no big deal to you,
but somebody needs a liver. You can take a piece
of a liver that's healthy. And I think if more
(22:34):
people knew, And I encourage you out there to get
Wendy in to talk to whoever whatever organization or business
you're with, because we never know. You never know when
you're gonna need an organ and you know what, whether
you're alive, like I said, brothers can give the brothers
(22:56):
if they match well. When people pass away and they
donate their organs, my god, what excuse me, but what
a freaking legacy? How about it?
Speaker 2 (23:04):
Yeah, we used to have a bumper sticker out there
and some people occasionally I see it on their car
that says, don't take your organs to heaven. Heaven knows
we need them here.
Speaker 1 (23:12):
That's a good one. That is a good one. Wow.
Speaker 2 (23:15):
And we just encourage people to think about their own
health and making sure that they stay healthy, take care
of themselves.
Speaker 1 (23:22):
Well, I understand you're really into educating high schools and colleges.
Tell me why. I know.
Speaker 2 (23:31):
I think, well, high schools we like because they're getting
their permits and the last question that's asked of them
when they're gone through getting their license and their picture
taken is do you want to have the organ designation
on your license? So that's a prime time for us
to educate about organ donation. I want them to be
educated before they get to that chaos and then they
(23:53):
look back at their parent or their guardian and say
what do I do? And that's perfect time to talk
too before getting in there. But you know, just making
sure that they understand. I want people to be educated
about it. It's just it's there's a lot more than
just that check off at.
Speaker 1 (24:10):
The DMC exactly. That's the whole point and the life.
Speaker 2 (24:13):
That we leave and the legacies that we leave are
truly amazing. And you don't even know you're you're walking
in the community and you may not walk by someone
that has had a corneal transplant or you know, an
organ transit. You don't know who they are.
Speaker 1 (24:28):
To me, people have said, oh, well, yeah, I had this,
I had that. Oh my gosh, isn't that wonderful?
Speaker 2 (24:34):
It is?
Speaker 1 (24:35):
Wow?
Speaker 2 (24:36):
And the many many years my father survived twenty years
with his heart transplant. Yeah, nowadays I've been here in
thirty plus, is that right? So it truly is amazing.
And every day the medical field is always you know,
all the.
Speaker 1 (24:50):
Things that starts to yeah, yes, I just heard something
the other day about an artificial kidney. I thought, oh
my god, Oh my god, I can't believe it. Well,
what's been the responsible these young people college and high
school kids are they? I'm guess they're into it, aren't they?
Speaker 2 (25:04):
Yeah, leaving that legacy helping someone else, the kindness of
someone else. With our colleges, really, we actually do a
college challenge where we encourage groups on campuses to learn
more about organ donation and then they register people and
it's kind of like a little competition between the colleges
to see, Oh, that's great awareness. So you know, we're
(25:27):
supporting that way as well. So in high school they
have to have anyone under the age of eighteen must
have a parent's permission reguardian to be registered as an
organ donor. And so in college they're over the age
of eighteen. So that's another way that we can continue
educating them. The next step.
Speaker 1 (25:49):
These different organizations groups that you demographic groups, who seems
to support organ donation the most. We think I was
thinking maybe older people because they need kidneys a whole lot,
or I don't know.
Speaker 2 (26:02):
It varies between our communities. Ah, I know, we may
have a very high community that has young people that
are very supportive, and then we have big cities that
you know, they may not have to get a driver's
license right away, so they may not know too much
about organ and tissue donation if they're going through getting
their IDs those type of things. But we do know
(26:25):
too that you know, we need to be educated about it.
Speaker 1 (26:28):
That's it. There's a lot you don't know, folks, and
it's not gonna hurt. You don't have to pay to
donate or to be a recipient of the organ that's
all covered I mean, how can anybody not do it?
If you're dead, You're dead, you know. It's just like
my mom used to say to me. We were talking
about her passing away, and she said, Sylvia, that's that's
(26:48):
a shell, that's not anymore. Why should you not give
your organs? I can't imagine why. Now some religions might
aunt that's up to them. What with so many people
out there? Must you get checked out before? Like, well,
I guess not. You don't have to make sure you're
healthy before you register to be an organ donor. They
will know that.
Speaker 2 (27:09):
Yeah, check, They'll review your medical records and those type
of things.
Speaker 1 (27:14):
Any honest to God, you do such an amazing work.
Let us know. You can find out a whole lot
of stuff. Stuff we talked about today, some wonderful stories.
Information you need to educate yourself about organ donation. Where
is your website.
Speaker 2 (27:29):
It's donorswe dot org.
Speaker 1 (27:31):
And how does one get in touch with you about
anything we talked about today? If they want to find
out more, if they want you to come out and
talk to their organization, if they want to have a
registration event. There's a lot of stuff.
Speaker 2 (27:43):
Yeah, how just go to our website? And you can
see on how to volunteer more information. There's a great
way that you can just put in the application.
Speaker 1 (27:54):
Here's you need to do what you're for.
Speaker 2 (27:57):
Education, maybe some tabling events. So if we're in the
community and we may do some tabling events to raise awareness.
You know, maybe at a health fare they want to
come out and you know, share their story or help us.
We host a walk every year and maybe come out
and support us with the walk every year.
Speaker 1 (28:16):
I think that's wonderful. Oh, I mean you might be
a phone call from some laby. I know, sweetie, thanks
so much. I think this is wonderful. We need to
do more. We need to get the word. I'll tell
you I will be doing this and letting people know.
But I'll tell you what. For more than twenty years,
as the Community Relations Supervisors for the Gift of Life
Donor Program, Wendy Johnson's brought comfort to grieving families, hope
(28:39):
to those waiting for transplants, and understanding community communities across
our region, always with the message that one organ donor
can save up to eight lives, and each of us
has the power to give someone a second chance. Thank you, Jarres,
Thank you so much. And by the way, because of
the generosity of the young man that we will never know,
My brother Greg did get at kenney that saved him,
(29:02):
and he gave our family five more years of life,
five more years of wonderful memories, conversations, holidays and moments
we would have never had with Greg. This past January,
just days before his birthday, my brother Greg passed away
from complication. But it's transplanted kinney. Guess what, that kenney
was still healthy. That was the gift that never stopped giving.
(29:23):
My brother Greg was an extraordinary person. Honest to God.
We're going to miss him, and I do miss him
every single day, but we'll always be grateful for his
life and for the young man whose gift made it
more possible. Please register as an organ donor, and remember
you can catch Inside every weekend or one of our
iHeart stations, or anytime in your favorite podcast app. I'm
Sylvia Moss. This has been insight. Thank you so much
(29:44):
for listening. See you next week.
Speaker 2 (29:46):
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