January 7, 2025 • 29 mins
Join us as we sit down with Marilyn Day, a founding member of Transplant Village and a two-time kidney recipient who has dedicated over a decade to guiding others through the transplant journey.
In this episode, Marilyn shares how her personal story highlights the transformative power of sharing your journey to inspire action and find living donors within your social network. Discover how platforms like Facebook and Instagram have become invaluable tools for connecting patients with potential donors—reuniting people with long-lost connections, activating supportive family members who simply didn’t know, and even forging bonds with complete strangers.
Marilyn’s insights remind us that people can’t help if they don’t know how. She offers practical advice on building a supportive community and tapping into your network to create life-changing opportunities. Don’t miss this inspiring conversation about the power of hope, connection, and the courage to ask for help.
Links:
Donor Diaries Website
Donor Diaries on Facebook
Connect with Laurie Lee
Transplant Village
Northwestern Donor Champion Program
Living Kidney Donors Network
GiftWorks
Marilyn’s Faith Story
The Big Ask the Big Give (NKF)
Johns Hopkins Donor Champion Program
Organ Transplant Support
Tools for Patients at NKR Transplant Centers
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Welcome to Donor Diaries, a podcast that explores
how people are changing livesthrough the powerful act of
living donation.
Tune in to discover howkindness, love and simple acts
of giving are transforming livesevery day.
Welcome back to donor diariesand happy new year.
(00:36):
Let's hop into a time machineand head back to 2011, a year
that changed my life forever.
It it all started with a liver,my dad's liver to be exact.
That was the year he received alife-saving liver transplant
from a deceased donor.
I'm thrilled to share that.
He's thriving today.
In fact, this past Christmas Iwatched him, at the age of 74,
(01:00):
plotting his next businessventure involving bots and
cryptocurrency from his hot tub.
Apparently, retirement isn'tfor everyone and we're super
grateful that he's here, but onthe day of his transplant, I was
hit with a whirlwind ofemotions Gratitude for the
family who made the courageousdecision to donate their son's
(01:20):
organs, and sadness for theirunimaginable loss.
We know it was a young manwhose life was cut tragically
short, but we never learned muchmore than that about his donor.
Even so, their generosity lefta permanent imprint on my heart.
That experience ignitedsomething profound in me and my
family a deep desire to giveback.
(01:40):
We wanted to become part ofthis incredible system of paying
it forward, sharing life's mostprecious gifts our organs
Around.
This time we also foundedTransplant Village, a nonprofit
uniting Northwestern organrecipients, donors, caregivers
and their families.
Our mission is to support thefuture of organ transplantation
(02:01):
at Northwestern Medicine whilefostering connections within the
transplant community.
Today's guest is Marilyn Day, atwo-time kidney recipient and
one of the founding members ofTransplant Village.
Marilyn's unwavering dedicationhas been a cornerstone of our
organization's success andgrowth.
When she needed a second kidney, she had to put her own advice
(02:22):
into practice, sharing her storyfar and wide to find a living
donor, and that's not an easytask.
Sadly, many people shy awayfrom it, fearing rejection or
the vulnerability of asking forhelp.
In today's episode, we'll hearMarilyn's powerful story and
learn why sharing your journeyis so critically important.
She'll share her firsthandexperience of what can happen
(02:45):
when you find the courage tolean on your community and tell
your story.
If you or someone you love issearching for a living donor,
Marilyn's insights may be justthe inspiration you need.
Today.
I have my friend, Marilyn Day,here.
We're in a sacristy, which isunusual for us because typically
we meet at the bar and we getwings.
(03:05):
So thank you for inviting me toyour sacristy.
Speaker 2 (03:09):
I've been excited to do this and the sacristy is in a
retirement community where Ilive called the Clare, and it
was the quietest place I couldthink of to have a conversation
like this without the communityinterrupting us and saying hi.
Speaker 1 (03:26):
Absolutely.
It's quieter than our usualvenue.
Yes, it is, yes it is.
So some background on you,marilyn.
You and I have been working inthe organ donation and
transplant field for how manyyears together?
Now I think it's a dozen,twelve years.
So you're one of the very firstpeople I met in the transplant
(03:47):
world, probably so.
Speaker 2 (03:49):
Yeah, your dad introduced me through the
development person atNorthwestern and asked if I
would be interested in helpingwith transplant education and
support.
And I said sure, because atthat point I'd already had my
first kidney transplant.
(04:09):
That was in 1999.
And I had been on dialysis fora year and a half or so before
my husband, robert, and Ifigured out he could be a donor.
There was no particulareducation about organ
transplants back then they werenot all that old process
actually and once we figured outthat he could be a donor, then
(04:33):
it happened pretty quickly and Iwas so grateful that I wanted
to be part of something thatcould help everybody else who
was going through this, becauseI felt so much better.
Then, flash forward 13, 14 years.
Transplant Village had apresenter, john Friedewald, at
(04:58):
our meetings so that we could beeducated about the latest
research.
And this particular latestresearch was about John
Friedewald's research in helpingto identify reasons that
transplanted kidneys failed,typically after 13 years.
And I raised my hand and I said, well, it's just been 13 years
for my kidney.
What does that mean for me?
And he said, oh, no, you'll befine.
(05:21):
Well then, a year and a halflater, I had a doctor's
follow-up appointment and JohnFriedewald said you know you are
going to be looking at a newkidney in another year or so and
you have to find another livingdonor because you're too old to
be on the list to be effectivefor you.
At that point I was 69.
(05:42):
I felt like I was justmiddle-aged and not a senior
citizen, and you actedmiddle-aged and not like a
senior citizen too, so that'sfair.
Yep.
And then I thought where am Igoing to find another living
donor?
Robert already gave me his.
And actually you, lori, said tome once I shared with the
(06:03):
transplant group that I wasgoing to need another kidney.
You said wouldn't it be cool ifI give you my kidney, because
you had been looking to donate akidney and didn't know what
that was going to look like yet.
And still I'm so touched thatyou did that.
But I said truly, lori, you cansave somebody's life in a week
(06:25):
and I don't need a kidney for ayear and a half.
And so you accelerated yourprocess and you did donate your
kidney and started a six-wayswap.
And then, a year and a halflater, I thought oh well, that's
nice.
I had somebody offer a kidneyand I turned it down.
And now what am I going to do?
But my niece wanted to be adonor.
(06:46):
She sat down at lunch with meand said I'd rather lose a
kidney than an Aunt Marilyn.
And then she couldn't be adonor for life reasons,
logistical reasons and such,where she was going to be moving
.
So you and my niece decided toput something out on Facebook,
which horrified me, because I amnot a social media person never
(07:08):
have been.
I think it's not been helpfulfor our country's culture,
essentially.
Speaker 1 (07:15):
It's good for finding kidneys.
Speaker 2 (07:16):
It's great for finding puppies and kidneys and
all kinds of things.
So you and my niece did aFacebook page.
You said said you don't evenhave to look at it, except we'll
tell you what's on it.
And it got gained some tractionwith some interest from people,
among whom was my nephew-in-law, my other niece's husband.
(07:38):
He texted me one day and all hesaid in the text was what's
your blood type?
And I texted back A and hetexted back I'm an A plus David
texted back in very few wordsI've got two, you need one, when
and where.
(07:58):
And I thought, oh my gosh, thisis incredible.
So I essentially got on thephone instead of texting and
said David, why don't you andCindy, my other niece, come to
dinner and we'll talk reallyabout what that means?
It's not like having a toothpulled, you know, we need to
take this seriously.
(08:19):
So he went home and told myniece for the first time that
he'd already offered his kidneyto me.
I'm not sure the timing wasgreat on that, but they did come
for dinner and we sat, the fourof us, and talked about it with
Robert.
And he said at dinner look atthis guy pointing to Robert.
(08:41):
He's getting older, he looksgreat.
He still drinks beer, he stillrides his bicycle.
He said, if this guy can do it,I can do it.
So he talked more about it withhis family, because they have
three adult children, and we putthe wheels in motion, and David
was indeed a very good match.
(09:01):
As it turns out, he's also aproject manager, so he decided
to use his project managementskills in communicating with the
rather long process of findingout the results to a myriad of
tests you have to have, and hewanted to move this as quickly
as he could, and so he was veryproactive in getting all of the
(09:24):
tests and then following up tomake sure that he was getting
results and could move theprocess forward, for which I
recommend everybody would dothat.
He felt like he had a littlebit more control and he wanted
to be sure we were getting thisdone as quickly as possible.
Speaker 1 (09:43):
So if they said we're going to call you with results
on Thursday and they didn't call, he called them and said you
said you were going to call.
What are my results?
Speaker 2 (09:51):
Yes, which I highly recommend, because the fact is
the staff is swamped with peopleto keep track of and you just
didn't want to leave it to youknow a chance that they wouldn't
get a call back as quickly aspossible.
So the bottom line was we chosea date of September 11th, which
we figured would be a greatdate to be in the hospital in
(10:14):
case there was somethinghappening around the world, but
we chose September 11th.
Speaker 1 (10:19):
I didn't know.
You chose that date.
We did, and I thought maybe youwere just bringing joy to a sad
date.
Well, we were.
Speaker 2 (10:26):
But I also thought what better place to be in a
hospital if there is a worldevent or something.
But it was a Monday and youknow why not do these things at
the beginning of the week andeverything went so well.
I just once again, once I hadmy kidney transplant.
I was then 70 and felt euphoric.
(10:51):
Frankly, you just feel so muchbetter once you have a new
kidney.
That's flushing the toxins outof your system.
So, and David did very well, hedid learn that he had to drink
as much as I needed to drink.
He did get dehydrated a bit andhad to come back for some
fluids, but he did very well andstarted tracking his fluids and
(11:14):
doing everything he needed todo move around, take walks and
what have you.
And we've just had this greatrelationship ever since.
He's such a wonderful guy he is.
Speaker 1 (11:27):
I would have taken great joy in being your donor.
I know, and sometimes I kind offeel like this is what I was
looking for in a donor recipientrelationship is somebody to do
advocacy work and somebody who Ilike enjoy having lunch with
and stuff.
But the only reason I can sayI'm glad I wasn't your donor is
(11:47):
because you have the best donorand I know, I know, what it
means to David to be your donorand how special that is to him.
He cries every time he tellsyour stories.
Speaker 2 (11:58):
Still so do I.
Yeah, it's.
It's been an amazing experience, and he now serves as a donor
buddy for other people who aregoing through the process, and
he loves to do that.
We have a whole cadre ofrecipients and donors and
(12:20):
caregivers available to talk topeople who wish to find out more
about the journey they're on,and that is very satisfying to
journey there on and that isvery satisfying to match people
up so that other people canlearn.
And the reason that I'm happythat you weren't able to be my
donor was that you helped sixtimes the number of people in
(12:42):
just one transplant than Daviddid, so you've spread the love
so far wide.
It's just the way the worldshould work.
Speaker 1 (12:51):
Well, thank God for David because he made it
possible for us to both saythose nice things.
Yeah, for sure.
When we talk to patients aboutsetting up a Facebook page and
doing a one-page flyer and allthese different techniques that
we know work, I think oftentimesthey feel like they're leaving
it up to chance and that we needa Facebook page because a
(13:14):
stranger in Iowa is going tostep forward and anonymously
donate their kidney.
What would you say to somebodywho's kind of thinking I don't
want to set up a Facebook page?
Speaker 2 (13:24):
Well, I didn't want to set up a Facebook page.
I can really speak to that.
Facebook is huge in thisprocess, as is Instagram,
frankly, or TikTok or whateveris the method of communication
among people these days, becauseit does reach a wide audience,
among whom are personalrelatives and friends and
(13:47):
committee members that you're on, or sorority sisters or
fraternity brothers.
It reaches into so many partsof your life that people can
respond once they hear aboutyour need.
They can look at that and itmeans something to them because
you mean something to them insome aspect of their lives, and
(14:08):
they can think, oh my gosh, Ican help this person perhaps,
and I didn't even know it.
That's what David thought whenhe saw this on Facebook.
He saw Facebook and he tohimself he said, oh my gosh, I
didn't know.
Aunt Marilyn needed anotherkidney.
It's not something we talkedabout necessarily, and that's
(14:30):
the dynamic that people canconnect with you in ways you had
just not anticipated at allClose friends, colleagues as
well as strangers.
It's such an amazing tool.
I'm really glad I didn't haveto do it personally, but I'm
really really glad for friendslike you and my niece who helped
(14:53):
me through that process withFacebook.
Speaker 1 (14:55):
Yeah, and you know what, marilyn?
I think it works better whenthe patient isn't doing their
own Facebook page and in yourcase you don't have a Facebook
account, so we could have putwhatever we want and you
wouldn't have known technically.
But you know, you entrusted usto do it but you weren't looking
at it, you weren't asking us toupdate it, and I think it works
better when the advocates dothe Facebook page and the
(15:17):
posting versus the personlooking for a kidney.
It's, it's a lot.
It's a lot of pressure to needa kidney and it takes a lot of
pressure off to not be the onethat's in charge of finding a
kidney.
Speaker 2 (15:28):
And if it's an advocate that otherwise would
have wanted to be the donor butcouldn't, that's even better,
because those advocates tend tobe more motivated, because they
wish they could have donesomething, and now this is
something they can still do foryou and take the pressure off of
you, as you said.
Yeah, so important to haveadvocates in so many ways.
(15:51):
Advocates, there can be so manyadvocates in your circle for
different reasons.
There can be advocates that goto your doctor appointments with
you.
There are advocates that cantake you to the doctor.
There are advocates that tellyour story.
There are advocates who findopportunities that you don't
even see, because they have youin the back of their mind and
(16:13):
make the connect the dots andmake the connections.
Yeah, exactly yeah.
Speaker 1 (16:17):
Like if you've got somebody in their twenties,
perhaps you don't want them atyour doctor appointment with you
, but you do want them creatingyour Facebook page Absolutely.
Or they probably don't doFacebook, they're probably
Instagram.
No, they're not, or theyprobably don't do Facebook?
Speaker 2 (16:30):
They're probably Instagram.
No, they're not.
But there are so many kinds ofadvocates to have and everybody
has a role and everybody wantsto help.
They want to be part of yourteam, as does Transplant Village
, frankly.
So consider Transplant Villageas part of your team of
advocates and we just wisheverybody a wonderful experience
(16:55):
using the resources we have toshare with them.
I would say that people wouldbe very surprised who came
forward to inquire if not.
Proceed with the wholeevaluation.
Proceed with the wholeevaluation.
(17:17):
I don't know statistics, but mygut tells me that most of the
time it's people they know or afriend of a friend or somebody
they've met.
But there is that great chancethat there are people who just
want to do a good thing in theirlives and this is a way they
can help.
I happen to be on chemo now andone of my chemo nurses asked me
(17:37):
if I worked at Northwestern,because I have a Northwestern
jacket and there are indicatorsin my file that would make
people think that I work therefrom volunteering.
Speaker 1 (17:48):
Says VIP on your file ?
I don't know.
I hope so.
They always have to.
It's better than complainer.
Well, that's true.
Speaker 2 (17:57):
That's true.
And I said no, I don't workthere.
But Robert quickly said but youvolunteer there.
And she said what do you do?
And so I did my usualtransplant village explanation
of the work that we do withpeople who need organ
transplants and she said I thinkI would like to find out about
that.
In her case she has alreadydonated her blood for bone
(18:23):
marrow transplants, but it hadbeen a couple of years and she
hadn't gotten any calls andshe's not satisfied that she's
done enough.
And that's an instance of arelative stranger in my life who
heard about it and wanted to dosomething.
And there are so many instanceslike that where people just
(18:45):
didn't realize they could behelpful in that way.
And in this world that's sodivided in so many ways, it's so
wonderful to know that thereare people that really want to
do good in the world and save alife.
So that's I'm so grateful forso much that I have, in part
because of the work we can dowith Transplant Village and help
(19:07):
people get new kidneys andlivers in their lives.
It's just a part of my lifethat I love.
Even though I have healthissues now, this is one of the
best things that I do every day.
Speaker 1 (19:21):
It's one of the best things I get to do every day too
, exactly, and it's prettyamazing when you get to do it
with people that you care about.
Yeah, it's wonderful.
So how did you feel when youknew you had to find a second
kidney donor?
What was that like?
Speaker 2 (19:36):
Fear.
Initially I hadn't thoughtthrough the process of how I was
going to manage that, forheaven's sakes.
You know I empathize withpeople who keep this news to
themselves initially becausethey don't necessarily want to
burden other people with theirsad news.
(19:58):
And, being rather much of anintrovert myself, I know what
it's like to sort of come outwith news like that and share
that very private news withother people.
But it didn't take long,because of the support I got
from you and Transplant Village,to understand that that's just
(20:22):
part of the process that you andit's so effective and helpful
to be able to have thoseconversations because people
really do want to help.
And the initial fear and well,besides the fact that I was
offended, that somebody thoughtI was old, besides that fact, I
(20:45):
got over the fear pretty quickly, like maybe three days or
something.
The fear pretty quickly, likemaybe three days or something.
But the initial reaction wasscared and fearful of how I
would handle this.
Speaker 1 (20:56):
Do you have any advice for people who are
fearful and just having a hardtime taking that first step of
telling their story?
Speaker 2 (21:03):
Absolutely.
If we can get the word out thatwe are a resource for anybody
with any questions like that, Ithink we can help mitigate that
fear.
What advice?
Speaker 1 (21:14):
do you have for seniors seeking a kidney?
Speaker 2 (21:17):
Well, my advice to seniors would be to try to get
over the fact that there'sageism out there in our culture,
in our culture, and to becognizant of the fact of.
As a senior, you need to keepyourself up and try to be as
healthful as you can, but if youare a healthy senior, then make
(21:42):
a statement and just decide youdeserve it and you're going to
work for it and earn it.
And you're going to work for itand earn it.
And you know, show any doubtersthat you can go through this,
because it is a wonderfulexperience.
I did not recover as quickly asI remember recovering.
Speaker 1 (22:05):
Can we pause there for a second?
Because you donated on the 11thand I visited you on the 12th
in the hospital.
Yes, and you were fully dressed, you had makeup on, yeah, your
hair was done and you were offpainkillers.
So tell me again about whathappened afterwards, because I
remember something verydifferent.
Speaker 2 (22:23):
I presented myself well in the hospital and I felt
great in the hospital and I feltgreat.
But then there's a whole truthabout anesthesia and seniors
that it's to the effect that youdon't necessarily bounce back
(22:43):
from the anesthesia as quickly.
I'll tell you a quick story.
I went to our little mediacabinet to put in some CDs to
play and I looked at the mediacabinet and I thought I wonder
how I turn this thing on.
It seemed very foreign to me.
Which button do I push and whatdo they mean?
And I thought, oh, I think I'mstill not back yet from my
(23:06):
anesthesia.
So it was those cognitive thingsthat I felt like I was moving a
little bit more slowly and notdriving heavy machinery
Absolutely not driving at all.
But my advice for seniors isjust to know that it's a
different time now to be asenior than it was two
(23:29):
generations ago.
Seniors in general are moreactive and healthy and able to
do.
I mean, I have a neighbor whowas 80 years old and he ran the
marathon.
So seniors, it's not aparticular stigma anymore, like
it probably has been in the past.
(23:50):
So just get over that.
People think you're a seniorand live a very active life.
Speaker 1 (23:56):
And you just spoke to somebody today who was in their
70s and donated a kidney.
I mean, people are donating intheir 70s and I think some
someone in their 80s did, andthey're receiving kidneys in
their 70s and their 80s.
Absolutely it happensAbsolutely.
Speaker 2 (24:11):
You just got to want it Thanks to our great folks,
the doctors and their analysisof how healthy we are.
Otherwise, you have to be ahealthy senior.
Frankly, you have to be ahealthy anybody to donate an
organ, but specifically as asenior, you need to have pretty
good numbers in all of yourblood workups and physical
(24:35):
workups and things.
But it happens and it's so funto hear about and meet these
people who really do that.
It's just so inspiring and shehopes this.
Who you're talking about is awoman who is 70 and just last
week donated a kidney to afriend and she truly hopes to
(24:57):
spread the word back in Seattlewhere she can make an impact and
educate people that otherpeople like her can save lives.
It's just a wonderful, wonderfuldynamic right now to be able to
do that as a senior.
It is yeah.
Speaker 1 (25:13):
What's been the highlight of trans working with
transplant village for you,Marilyn Meeting all of these
fabulous people, the recipientsand the donors, caregivers, for
sure.
Speaker 2 (25:24):
It's just keeps me humble and hopeful for the world
, because there are so manypeople doing good.
Yeah, yeah.
Speaker 1 (25:32):
Well, thank you for all you do.
We wouldn't exist withoutpeople like you contributing
their heart and their soul, likeyou do.
Speaker 2 (25:41):
Happy to be here and want to do it for a long time.
Thanks for the opportunity forthis.
Thank you, Marilyn.
Speaker 1 (25:59):
If you or someone you love is searching for a living
donor, there are tons ofresources.
Thanks for the opportunity forthis.
Thank you, marilyn, forleveraging your network to find
a living donor.
For more information, visit theresource section of our website
at transplantvillageorg andcheck out my show notes to learn
more about other resources tohelp you find a living donor.
This episode is lovinglydedicated to the memory and
(26:22):
legacy of my dear friend,marilyn Day.
Marilyn's impact on thetransplant community was nothing
short of extraordinary.
As an advocate, educator andfriend, she guided countless
individuals through the oftenoverwhelming transplant
experience.
Her greatest gift was herability to inspire hope.
With a warm and calmingpresence, marilyn met people
(26:45):
where they were especiallyseniors, who often felt
uncertain about pursuingtransplant.
Where they were especiallyseniors who often felt uncertain
about pursuing transplant, shehad an incredible way of helping
them see their value, remindingthem that everybody deserves a
second chance.
What I admire most aboutMarilyn was her profound
gratitude.
Even in the face of challenges,she focused on the good.
(27:05):
I remember when she shared hercancer diagnosis with me, she
said how lucky am I to have acancer I can live with for years
with the right treatment.
That unwavering positivity washer hallmark and her legacy is
one of hope, resilience andconnection.
Marilyn's life was a powerfulreminder to find the silver
linings.
Cherish our loved ones and liveeach day with intention.
(27:29):
Cherish our loved ones and liveeach day with intention.
In her memory, let's carry herspirit forward, embracing
gratitude, spreading hope andinspiring others, just as
Marilyn did.
Thank you, marilyn.
This season of Donor Diaries isproudly sponsored by GiftWorks,
an organization dedicated toempowering organ recipients and
living donors through education,advocacy and support.
(27:50):
By helping patients share theirjourneys and connect with
donors, giftworks ensureseveryone feels supported
throughout the transplantprocess.
We're honored to partner with ateam that's transforming lives,
one transplant at a time.
To learn more, visityourgiftworkscom.
Remember every act of kindnesscreates ripples.
(28:10):
Thanks for listening and keepspreading those positive vibes.
This is Lori Lee signing off.
Welcome to Donor Diaries, a podcast that explores
how people are changing livesthrough the powerful act of
living donation.
Tune in to discover howkindness, love and simple acts
of giving are transforming livesevery day.
Welcome back to donor diariesand happy new year.
(00:36):
Let's hop into a time machineand head back to 2011, a year
that changed my life forever.
It it all started with a liver,my dad's liver to be exact.
That was the year he received alife-saving liver transplant
from a deceased donor.
I'm thrilled to share that.
He's thriving today.
In fact, this past Christmas Iwatched him, at the age of 74,
(01:00):
plotting his next businessventure involving bots and
cryptocurrency from his hot tub.
Apparently, retirement isn'tfor everyone and we're super
grateful that he's here, but onthe day of his transplant, I was
hit with a whirlwind ofemotions Gratitude for the
family who made the courageousdecision to donate their son's
(01:20):
organs, and sadness for theirunimaginable loss.
We know it was a young manwhose life was cut tragically
short, but we never learned muchmore than that about his donor.
Even so, their generosity lefta permanent imprint on my heart.
That experience ignitedsomething profound in me and my
family a deep desire to giveback.
(01:40):
We wanted to become part ofthis incredible system of paying
it forward, sharing life's mostprecious gifts our organs
Around.
This time we also foundedTransplant Village, a nonprofit
uniting Northwestern organrecipients, donors, caregivers
and their families.
Our mission is to support thefuture of organ transplantation
(02:01):
at Northwestern Medicine whilefostering connections within the
transplant community.
Today's guest is Marilyn Day, atwo-time kidney recipient and
one of the founding members ofTransplant Village.
Marilyn's unwavering dedicationhas been a cornerstone of our
organization's success andgrowth.
When she needed a second kidney, she had to put her own advice
(02:22):
into practice, sharing her storyfar and wide to find a living
donor, and that's not an easytask.
Sadly, many people shy awayfrom it, fearing rejection or
the vulnerability of asking forhelp.
In today's episode, we'll hearMarilyn's powerful story and
learn why sharing your journeyis so critically important.
She'll share her firsthandexperience of what can happen
(02:45):
when you find the courage tolean on your community and tell
your story.
If you or someone you love issearching for a living donor,
Marilyn's insights may be justthe inspiration you need.
Today.
I have my friend, Marilyn Day,here.
We're in a sacristy, which isunusual for us because typically
we meet at the bar and we getwings.
(03:05):
So thank you for inviting me toyour sacristy.
Speaker 2 (03:09):
I've been excited to do this and the sacristy is in a
retirement community where Ilive called the Clare, and it
was the quietest place I couldthink of to have a conversation
like this without the communityinterrupting us and saying hi.
Speaker 1 (03:26):
Absolutely.
It's quieter than our usualvenue.
Yes, it is, yes it is.
So some background on you,marilyn.
You and I have been working inthe organ donation and
transplant field for how manyyears together?
Now I think it's a dozen,twelve years.
So you're one of the very firstpeople I met in the transplant
(03:47):
world, probably so.
Speaker 2 (03:49):
Yeah, your dad introduced me through the
development person atNorthwestern and asked if I
would be interested in helpingwith transplant education and
support.
And I said sure, because atthat point I'd already had my
first kidney transplant.
(04:09):
That was in 1999.
And I had been on dialysis fora year and a half or so before
my husband, robert, and Ifigured out he could be a donor.
There was no particulareducation about organ
transplants back then they werenot all that old process
actually and once we figured outthat he could be a donor, then
(04:33):
it happened pretty quickly and Iwas so grateful that I wanted
to be part of something thatcould help everybody else who
was going through this, becauseI felt so much better.
Then, flash forward 13, 14 years.
Transplant Village had apresenter, john Friedewald, at
(04:58):
our meetings so that we could beeducated about the latest
research.
And this particular latestresearch was about John
Friedewald's research in helpingto identify reasons that
transplanted kidneys failed,typically after 13 years.
And I raised my hand and I said, well, it's just been 13 years
for my kidney.
What does that mean for me?
And he said, oh, no, you'll befine.
(05:21):
Well then, a year and a halflater, I had a doctor's
follow-up appointment and JohnFriedewald said you know you are
going to be looking at a newkidney in another year or so and
you have to find another livingdonor because you're too old to
be on the list to be effectivefor you.
At that point I was 69.
(05:42):
I felt like I was justmiddle-aged and not a senior
citizen, and you actedmiddle-aged and not like a
senior citizen too, so that'sfair.
Yep.
And then I thought where am Igoing to find another living
donor?
Robert already gave me his.
And actually you, lori, said tome once I shared with the
(06:03):
transplant group that I wasgoing to need another kidney.
You said wouldn't it be cool ifI give you my kidney, because
you had been looking to donate akidney and didn't know what
that was going to look like yet.
And still I'm so touched thatyou did that.
But I said truly, lori, you cansave somebody's life in a week
(06:25):
and I don't need a kidney for ayear and a half.
And so you accelerated yourprocess and you did donate your
kidney and started a six-wayswap.
And then, a year and a halflater, I thought oh well, that's
nice.
I had somebody offer a kidneyand I turned it down.
And now what am I going to do?
But my niece wanted to be adonor.
(06:46):
She sat down at lunch with meand said I'd rather lose a
kidney than an Aunt Marilyn.
And then she couldn't be adonor for life reasons,
logistical reasons and such,where she was going to be moving
.
So you and my niece decided toput something out on Facebook,
which horrified me, because I amnot a social media person never
(07:08):
have been.
I think it's not been helpfulfor our country's culture,
essentially.
Speaker 1 (07:15):
It's good for finding kidneys.
Speaker 2 (07:16):
It's great for finding puppies and kidneys and
all kinds of things.
So you and my niece did aFacebook page.
You said said you don't evenhave to look at it, except we'll
tell you what's on it.
And it got gained some tractionwith some interest from people,
among whom was my nephew-in-law, my other niece's husband.
(07:38):
He texted me one day and all hesaid in the text was what's
your blood type?
And I texted back A and hetexted back I'm an A plus David
texted back in very few wordsI've got two, you need one, when
and where.
(07:58):
And I thought, oh my gosh, thisis incredible.
So I essentially got on thephone instead of texting and
said David, why don't you andCindy, my other niece, come to
dinner and we'll talk reallyabout what that means?
It's not like having a toothpulled, you know, we need to
take this seriously.
(08:19):
So he went home and told myniece for the first time that
he'd already offered his kidneyto me.
I'm not sure the timing wasgreat on that, but they did come
for dinner and we sat, the fourof us, and talked about it with
Robert.
And he said at dinner look atthis guy pointing to Robert.
(08:41):
He's getting older, he looksgreat.
He still drinks beer, he stillrides his bicycle.
He said, if this guy can do it,I can do it.
So he talked more about it withhis family, because they have
three adult children, and we putthe wheels in motion, and David
was indeed a very good match.
(09:01):
As it turns out, he's also aproject manager, so he decided
to use his project managementskills in communicating with the
rather long process of findingout the results to a myriad of
tests you have to have, and hewanted to move this as quickly
as he could, and so he was veryproactive in getting all of the
(09:24):
tests and then following up tomake sure that he was getting
results and could move theprocess forward, for which I
recommend everybody would dothat.
He felt like he had a littlebit more control and he wanted
to be sure we were getting thisdone as quickly as possible.
Speaker 1 (09:43):
So if they said we're going to call you with results
on Thursday and they didn't call, he called them and said you
said you were going to call.
What are my results?
Speaker 2 (09:51):
Yes, which I highly recommend, because the fact is
the staff is swamped with peopleto keep track of and you just
didn't want to leave it to youknow a chance that they wouldn't
get a call back as quickly aspossible.
So the bottom line was we chosea date of September 11th, which
we figured would be a greatdate to be in the hospital in
(10:14):
case there was somethinghappening around the world, but
we chose September 11th.
Speaker 1 (10:19):
I didn't know.
You chose that date.
We did, and I thought maybe youwere just bringing joy to a sad
date.
Well, we were.
Speaker 2 (10:26):
But I also thought what better place to be in a
hospital if there is a worldevent or something.
But it was a Monday and youknow why not do these things at
the beginning of the week andeverything went so well.
I just once again, once I hadmy kidney transplant.
I was then 70 and felt euphoric.
(10:51):
Frankly, you just feel so muchbetter once you have a new
kidney.
That's flushing the toxins outof your system.
So, and David did very well, hedid learn that he had to drink
as much as I needed to drink.
He did get dehydrated a bit andhad to come back for some
fluids, but he did very well andstarted tracking his fluids and
(11:14):
doing everything he needed todo move around, take walks and
what have you.
And we've just had this greatrelationship ever since.
He's such a wonderful guy he is.
Speaker 1 (11:27):
I would have taken great joy in being your donor.
I know, and sometimes I kind offeel like this is what I was
looking for in a donor recipientrelationship is somebody to do
advocacy work and somebody who Ilike enjoy having lunch with
and stuff.
But the only reason I can sayI'm glad I wasn't your donor is
(11:47):
because you have the best donorand I know, I know, what it
means to David to be your donorand how special that is to him.
He cries every time he tellsyour stories.
Speaker 2 (11:58):
Still so do I.
Yeah, it's.
It's been an amazing experience, and he now serves as a donor
buddy for other people who aregoing through the process, and
he loves to do that.
We have a whole cadre ofrecipients and donors and
(12:20):
caregivers available to talk topeople who wish to find out more
about the journey they're on,and that is very satisfying to
journey there on and that isvery satisfying to match people
up so that other people canlearn.
And the reason that I'm happythat you weren't able to be my
donor was that you helped sixtimes the number of people in
(12:42):
just one transplant than Daviddid, so you've spread the love
so far wide.
It's just the way the worldshould work.
Speaker 1 (12:51):
Well, thank God for David because he made it
possible for us to both saythose nice things.
Yeah, for sure.
When we talk to patients aboutsetting up a Facebook page and
doing a one-page flyer and allthese different techniques that
we know work, I think oftentimesthey feel like they're leaving
it up to chance and that we needa Facebook page because a
(13:14):
stranger in Iowa is going tostep forward and anonymously
donate their kidney.
What would you say to somebodywho's kind of thinking I don't
want to set up a Facebook page?
Speaker 2 (13:24):
Well, I didn't want to set up a Facebook page.
I can really speak to that.
Facebook is huge in thisprocess, as is Instagram,
frankly, or TikTok or whateveris the method of communication
among people these days, becauseit does reach a wide audience,
among whom are personalrelatives and friends and
(13:47):
committee members that you're on, or sorority sisters or
fraternity brothers.
It reaches into so many partsof your life that people can
respond once they hear aboutyour need.
They can look at that and itmeans something to them because
you mean something to them insome aspect of their lives, and
(14:08):
they can think, oh my gosh, Ican help this person perhaps,
and I didn't even know it.
That's what David thought whenhe saw this on Facebook.
He saw Facebook and he tohimself he said, oh my gosh, I
didn't know.
Aunt Marilyn needed anotherkidney.
It's not something we talkedabout necessarily, and that's
(14:30):
the dynamic that people canconnect with you in ways you had
just not anticipated at allClose friends, colleagues as
well as strangers.
It's such an amazing tool.
I'm really glad I didn't haveto do it personally, but I'm
really really glad for friendslike you and my niece who helped
(14:53):
me through that process withFacebook.
Speaker 1 (14:55):
Yeah, and you know what, marilyn?
I think it works better whenthe patient isn't doing their
own Facebook page and in yourcase you don't have a Facebook
account, so we could have putwhatever we want and you
wouldn't have known technically.
But you know, you entrusted usto do it but you weren't looking
at it, you weren't asking us toupdate it, and I think it works
better when the advocates dothe Facebook page and the
(15:17):
posting versus the personlooking for a kidney.
It's, it's a lot.
It's a lot of pressure to needa kidney and it takes a lot of
pressure off to not be the onethat's in charge of finding a
kidney.
Speaker 2 (15:28):
And if it's an advocate that otherwise would
have wanted to be the donor butcouldn't, that's even better,
because those advocates tend tobe more motivated, because they
wish they could have donesomething, and now this is
something they can still do foryou and take the pressure off of
you, as you said.
Yeah, so important to haveadvocates in so many ways.
(15:51):
Advocates, there can be so manyadvocates in your circle for
different reasons.
There can be advocates that goto your doctor appointments with
you.
There are advocates that cantake you to the doctor.
There are advocates that tellyour story.
There are advocates who findopportunities that you don't
even see, because they have youin the back of their mind and
(16:13):
make the connect the dots andmake the connections.
Yeah, exactly yeah.
Speaker 1 (16:17):
Like if you've got somebody in their twenties,
perhaps you don't want them atyour doctor appointment with you
, but you do want them creatingyour Facebook page Absolutely.
Or they probably don't doFacebook, they're probably
Instagram.
No, they're not, or theyprobably don't do Facebook?
Speaker 2 (16:30):
They're probably Instagram.
No, they're not.
But there are so many kinds ofadvocates to have and everybody
has a role and everybody wantsto help.
They want to be part of yourteam, as does Transplant Village
, frankly.
So consider Transplant Villageas part of your team of
advocates and we just wisheverybody a wonderful experience
(16:55):
using the resources we have toshare with them.
I would say that people wouldbe very surprised who came
forward to inquire if not.
Proceed with the wholeevaluation.
Proceed with the wholeevaluation.
(17:17):
I don't know statistics, but mygut tells me that most of the
time it's people they know or afriend of a friend or somebody
they've met.
But there is that great chancethat there are people who just
want to do a good thing in theirlives and this is a way they
can help.
I happen to be on chemo now andone of my chemo nurses asked me
(17:37):
if I worked at Northwestern,because I have a Northwestern
jacket and there are indicatorsin my file that would make
people think that I work therefrom volunteering.
Speaker 1 (17:48):
Says VIP on your file ?
I don't know.
I hope so.
They always have to.
It's better than complainer.
Well, that's true.
Speaker 2 (17:57):
That's true.
And I said no, I don't workthere.
But Robert quickly said but youvolunteer there.
And she said what do you do?
And so I did my usualtransplant village explanation
of the work that we do withpeople who need organ
transplants and she said I thinkI would like to find out about
that.
In her case she has alreadydonated her blood for bone
(18:23):
marrow transplants, but it hadbeen a couple of years and she
hadn't gotten any calls andshe's not satisfied that she's
done enough.
And that's an instance of arelative stranger in my life who
heard about it and wanted to dosomething.
And there are so many instanceslike that where people just
(18:45):
didn't realize they could behelpful in that way.
And in this world that's sodivided in so many ways, it's so
wonderful to know that thereare people that really want to
do good in the world and save alife.
So that's I'm so grateful forso much that I have, in part
because of the work we can dowith Transplant Village and help
(19:07):
people get new kidneys andlivers in their lives.
It's just a part of my lifethat I love.
Even though I have healthissues now, this is one of the
best things that I do every day.
Speaker 1 (19:21):
It's one of the best things I get to do every day too
, exactly, and it's prettyamazing when you get to do it
with people that you care about.
Yeah, it's wonderful.
So how did you feel when youknew you had to find a second
kidney donor?
What was that like?
Speaker 2 (19:36):
Fear.
Initially I hadn't thoughtthrough the process of how I was
going to manage that, forheaven's sakes.
You know I empathize withpeople who keep this news to
themselves initially becausethey don't necessarily want to
burden other people with theirsad news.
(19:58):
And, being rather much of anintrovert myself, I know what
it's like to sort of come outwith news like that and share
that very private news withother people.
But it didn't take long,because of the support I got
from you and Transplant Village,to understand that that's just
(20:22):
part of the process that you andit's so effective and helpful
to be able to have thoseconversations because people
really do want to help.
And the initial fear and well,besides the fact that I was
offended, that somebody thoughtI was old, besides that fact, I
(20:45):
got over the fear pretty quickly, like maybe three days or
something.
The fear pretty quickly, likemaybe three days or something.
But the initial reaction wasscared and fearful of how I
would handle this.
Speaker 1 (20:56):
Do you have any advice for people who are
fearful and just having a hardtime taking that first step of
telling their story?
Speaker 2 (21:03):
Absolutely.
If we can get the word out thatwe are a resource for anybody
with any questions like that, Ithink we can help mitigate that
fear.
What advice?
Speaker 1 (21:14):
do you have for seniors seeking a kidney?
Speaker 2 (21:17):
Well, my advice to seniors would be to try to get
over the fact that there'sageism out there in our culture,
in our culture, and to becognizant of the fact of.
As a senior, you need to keepyourself up and try to be as
healthful as you can, but if youare a healthy senior, then make
(21:42):
a statement and just decide youdeserve it and you're going to
work for it and earn it.
And you're going to work for itand earn it.
And you know, show any doubtersthat you can go through this,
because it is a wonderfulexperience.
I did not recover as quickly asI remember recovering.
Speaker 1 (22:05):
Can we pause there for a second?
Because you donated on the 11thand I visited you on the 12th
in the hospital.
Yes, and you were fully dressed, you had makeup on, yeah, your
hair was done and you were offpainkillers.
So tell me again about whathappened afterwards, because I
remember something verydifferent.
Speaker 2 (22:23):
I presented myself well in the hospital and I felt
great in the hospital and I feltgreat.
But then there's a whole truthabout anesthesia and seniors
that it's to the effect that youdon't necessarily bounce back
(22:43):
from the anesthesia as quickly.
I'll tell you a quick story.
I went to our little mediacabinet to put in some CDs to
play and I looked at the mediacabinet and I thought I wonder
how I turn this thing on.
It seemed very foreign to me.
Which button do I push and whatdo they mean?
And I thought, oh, I think I'mstill not back yet from my
(23:06):
anesthesia.
So it was those cognitive thingsthat I felt like I was moving a
little bit more slowly and notdriving heavy machinery
Absolutely not driving at all.
But my advice for seniors isjust to know that it's a
different time now to be asenior than it was two
(23:29):
generations ago.
Seniors in general are moreactive and healthy and able to
do.
I mean, I have a neighbor whowas 80 years old and he ran the
marathon.
So seniors, it's not aparticular stigma anymore, like
it probably has been in the past.
(23:50):
So just get over that.
People think you're a seniorand live a very active life.
Speaker 1 (23:56):
And you just spoke to somebody today who was in their
70s and donated a kidney.
I mean, people are donating intheir 70s and I think some
someone in their 80s did, andthey're receiving kidneys in
their 70s and their 80s.
Absolutely it happensAbsolutely.
Speaker 2 (24:11):
You just got to want it Thanks to our great folks,
the doctors and their analysisof how healthy we are.
Otherwise, you have to be ahealthy senior.
Frankly, you have to be ahealthy anybody to donate an
organ, but specifically as asenior, you need to have pretty
good numbers in all of yourblood workups and physical
(24:35):
workups and things.
But it happens and it's so funto hear about and meet these
people who really do that.
It's just so inspiring and shehopes this.
Who you're talking about is awoman who is 70 and just last
week donated a kidney to afriend and she truly hopes to
(24:57):
spread the word back in Seattlewhere she can make an impact and
educate people that otherpeople like her can save lives.
It's just a wonderful, wonderfuldynamic right now to be able to
do that as a senior.
It is yeah.
Speaker 1 (25:13):
What's been the highlight of trans working with
transplant village for you,Marilyn Meeting all of these
fabulous people, the recipientsand the donors, caregivers, for
sure.
Speaker 2 (25:24):
It's just keeps me humble and hopeful for the world
, because there are so manypeople doing good.
Yeah, yeah.
Speaker 1 (25:32):
Well, thank you for all you do.
We wouldn't exist withoutpeople like you contributing
their heart and their soul, likeyou do.
Speaker 2 (25:41):
Happy to be here and want to do it for a long time.
Thanks for the opportunity forthis.
Thank you, Marilyn.
Speaker 1 (25:59):
If you or someone you love is searching for a living
donor, there are tons ofresources.
Thanks for the opportunity forthis.
Thank you, marilyn, forleveraging your network to find
a living donor.
For more information, visit theresource section of our website
at transplantvillageorg andcheck out my show notes to learn
more about other resources tohelp you find a living donor.
This episode is lovinglydedicated to the memory and
(26:22):
legacy of my dear friend,marilyn Day.
Marilyn's impact on thetransplant community was nothing
short of extraordinary.
As an advocate, educator andfriend, she guided countless
individuals through the oftenoverwhelming transplant
experience.
Her greatest gift was herability to inspire hope.
With a warm and calmingpresence, marilyn met people
(26:45):
where they were especiallyseniors, who often felt
uncertain about pursuingtransplant.
Where they were especiallyseniors who often felt uncertain
about pursuing transplant, shehad an incredible way of helping
them see their value, remindingthem that everybody deserves a
second chance.
What I admire most aboutMarilyn was her profound
gratitude.
Even in the face of challenges,she focused on the good.
(27:05):
I remember when she shared hercancer diagnosis with me, she
said how lucky am I to have acancer I can live with for years
with the right treatment.
That unwavering positivity washer hallmark and her legacy is
one of hope, resilience andconnection.
Marilyn's life was a powerfulreminder to find the silver
linings.
Cherish our loved ones and liveeach day with intention.
(27:29):
Cherish our loved ones and liveeach day with intention.
In her memory, let's carry herspirit forward, embracing
gratitude, spreading hope andinspiring others, just as
Marilyn did.
Thank you, marilyn.
This season of Donor Diaries isproudly sponsored by GiftWorks,
an organization dedicated toempowering organ recipients and
living donors through education,advocacy and support.
(27:50):
By helping patients share theirjourneys and connect with
donors, giftworks ensureseveryone feels supported
throughout the transplantprocess.
We're honored to partner with ateam that's transforming lives,
one transplant at a time.
To learn more, visityourgiftworkscom.
Remember every act of kindnesscreates ripples.
(28:10):
Thanks for listening and keepspreading those positive vibes.
This is Lori Lee signing off.
Popular Podcasts
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
On Purpose with Jay Shetty
I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!