April 8, 2025 • 35 mins
What if a casual Sunday scroll through Facebook could save a life? In this heartfelt episode of Donor Diaries, Rich and Cali share the extraordinary story of how a social media post led to a life-saving kidney transplant and an unexpected lifelong connection.
Rich, living with polycystic kidney disease, feared the wait for a deceased donor and the possibility of having to go on dialysis, and took a leap of faith by sharing his story online. Cali, grieving the loss of her brother to the same disease, stumbled upon Rich’s post and felt an unshakable pull to help. Neither could have predicted the twist of fate that would link them even closer—Rich had once been her brother’s boss.
Their journey is one of vulnerability, determination, and the incredible power of human connection. From meticulously tracking spreadsheets to navigating emotions and medical evaluations, both Rich and Cali approached the process with equal heart and grit. In the end, their story reminds us that sharing our struggles can spark unexpected miracles—and that even the smallest connections can change lives.
Rich and Cali represent a major milestone; they were the first successful kidney transplant to come out of the GiftWorks Program pilot. The GiftWorks Program is built on three core pillars that support both transplant recipients and those who step forward as living donors: Education, Support, and Advocacy.
To learn more about the GiftWorks program that helped make this match possible, visit yourgiftworks.com and check out our show notes.
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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 diaries.
(00:42):
I'm your host, l Lee, and I'malso the co-founder of the
GiftWorks program, which wasdeveloped with my partner, amber
Kahn.
Giftworks is more than just aprogram.
It's a movement designed toempower and support both
patients and their living donors.
Built on three pillarseducation, support and advocacy.
Our mission is really quitesimple advocacy our mission is
(01:06):
really quite simple to ensurethat kidney patients and their
donors feel equally informed,supported and part of an
extraordinary life-savingexchange.
We piloted this program at theUniversity of Utah, concluding
in 2023, and we're now workingto scale it to help even more
people navigate their transplantand donation journeys.
But today's episode goes beyondthe nuts and bolts of the
GiftWorks program.
We're sharing the beautifulstory of Rich and Callie, a
(01:30):
kidney recipient and kidneydonor, who successfully
navigated our program andutilized its tools with
excellence.
Whether you're a patientseeking a donor or a potential
donor exploring the donationprocess, their experience is an
inspiring example of what'spossible.
Exploring the donation process,their experience is an
inspiring example of what'spossible with the right support.
Let's dive in.
(01:50):
Welcome to Donor Diaries,callie and Rich.
Thanks so much for joining metoday.
Thank you for having me Rich.
let's start with your background.
Can you tell us a little bitabout why you needed a kidney
transplant?
Speaker 2 (02:04):
Yeah, I have a family history of polycystic kidney
disease.
It's multi-generational For me.
I've known that I had thisdisease, probably about 30 plus
years.
My mom had a transplant earlyin the history of transplants,
and so I've known for a longtime that the day was going to
come when my kidney functionwould cease.
For a long part of my life Iwas a workaholic.
(02:25):
I didn't do great with diet, Iwas overweight, and my efforts
to sort of get that in linedidn't really get serious until
I was close to retirement, andby that point the kidney
functions were on a ski slopeand it was the inevitability
that I wasn't going to outlive.
The decline of my kidneysbecame a real thing.
Speaker 1 (02:48):
And did you assume that you would pursue the wait
list and that you would get akidney through the wait list?
Speaker 2 (02:54):
That's right.
Yeah, I was hoping that thedrugs that I was taking would
slow the decline, at least sortof flatten that ski slope out,
until a deceased donor becameavailable.
Speaker 1 (03:07):
And what was your introduction to living donation?
Speaker 2 (03:09):
It was mentioned in passing honestly during the
indoctrination of into being onthe list, but it didn't really
feel like a reality to mebecause of my family history.
So when I thought of a livingdonor, all I was really thinking
about was my immediate family.
I wasn't even really thinkingfriends or people outside my
(03:34):
most immediate circle and I knewthat pretty much everyone in my
immediate circle wouldn'treally qualify.
I sort of battened down thehatches, tried to get in better
shape.
I lost weight and I was againtrying to flatten that ski slope
, thinking I needed to goanother three, four or five
years and hope that I was stillhealthy enough for a deceased
(03:56):
donor.
That was really, honestly.
For me that was really thebiggest challenge or the biggest
fear is that by the time adeceased donor became available
I wouldn't be healthy enough toremain on the list.
Something would have happenedthat would have disqualified me
from getting a transplant.
Speaker 1 (04:15):
That's a very legitimate fear, and did you
have to go on dialysis duringthat time?
Speaker 2 (04:20):
I'm probably one of the luckiest people alive in
that regard, in that I wasprobably maybe a year from
having to go on dialysis, so myintroduction to alternatives for
living donation came at anincredibly opportune time for me
.
But, honestly, gift works andDr Molnar that really was the
(04:43):
key to me, even consideringanything like that.
Dr Molnar reached out to me andasked me if I would be willing
to be a participant in the pilot, and you know it, honestly,
from my perspective, theredidn't seem to be at that point
any real downside to it.
I didn't know exactly what itentailed.
(05:03):
He didn't go into a lot ofdetail about it, and so I said
yes.
And then I heard from GiftWorksa few weeks later, and that's
when I got a more detaileddescription of what it would
entail, and it didn't seem likeit was a difficult or
overwhelming thing.
I just had to get over theissues of do I deserve it, which
(05:25):
was kind of an interestingthing to think through.
And then the other one was veryfew people outside my inner
circle really knew my situation,and so the conversation was go
on social media and tell theworld about it and be as
efficient and as effective aspossible to tell the world about
it.
So there was a moment ofhesitation about that, but it
(05:46):
didn't really seem like thatmuch of a negative, considering
what the positive outcome of itmight be To me.
After a moment's hesitation, itseemed like this is a no-brainer
, I have to do it.
You just have to take thatfirst step and say I can do this
.
It's not that hard.
I mean, how hard is posting onFacebook or even recording a
small video on Facebook or anykind of social media outlet?
(06:09):
It's not that hard.
Gifworks gave me the benefit ofsome serious expertise in the
area that I didn't have, butit's not something that the
average person, if they chooseto do it, can't do on their own.
Speaker 1 (06:22):
If it's not hard, why do you think people don't do it
?
Can't do on their own?
If it's not hard, why do youthink people don't do it?
Speaker 2 (06:25):
That's the big question and it's hard for me to
answer that, to get into otherpeople's brains that way.
But I think the biggest thingfor me was I didn't want to
delve too much into it because Ididn't want to end up sort of
overwhelmingly invested in itand not having a positive
(06:47):
outcome.
It's sort of the risk ofputting yourself out there and
being rejected and taking thatpersonally.
So that's definitely aconsideration.
I think once you're able to beaware that it exists and that
there is a possibility ofsuccess, I think more people
would try it if it was a bettereducational process through the
(07:07):
transplant community to say thisis a real alternative and there
are many ways that you can geta kidney.
But you have to try, it's notcoming to you, you have to go
get it.
And I just don't think a verybig percentage of the people on
the list are really aware ofthat possibility and that's
really a shame.
Speaker 1 (07:26):
It is.
What did it feel like to put itout there and how did people
respond when you did put it outthere?
Speaker 2 (07:33):
What's interesting is that you're right, I didn't.
I wasn't aggressive, I wasn'tcommunicating the situation
because I was used to notcommunicating it over all those
many years.
Once I got it out there, Ireally kicked myself for not
having done it sooner.
I mean, obviously, the timingworked out great for me.
Callie was Johnny on the spotwhen when I really needed it, so
(07:54):
it was great.
But you know, I probably spentsix months, maybe close to a
year, of not really getting allof the requirements done to get
myself on the transplant list.
I can't really tell you why,maybe just the fear of having to
face the inevitability of it.
You know, as long as I was onlyjust taking pills and I was
feeling okay and I was living anormal life, it didn't seem like
(08:17):
I really needed to hurry up anddo something.
It wasn't until the fear ofuh-oh, dialysis is a real thing.
It's around the corner and itscared the crap out of me that
it motivated me to do something.
I've told this to many people.
I was much more afraid ofdialysis than I was of the
transplant.
But dialysis is a at best ashort-term solution, I think,
(08:42):
and it changes your life sodramatically that for me the
transplant was sort of my onlydirection that I really wanted
to pursue.
The other part of your question,the reaction I got and how I
felt about putting myself outthere honestly it was amazing
the number of people that Iheard from the responses that I
got, the emails, the texts, theconversations that I had.
(09:03):
I was a pretty busy guy forprobably the first three or four
weeks after I first got sort ofthe launch of the campaign.
I was honestly overwhelmed.
I was really emotional abouthow many relationships I revived
, people I hadn't heard from ortalked to in a really long time.
Support.
It was rewarding and, honestly,I started thinking at one point
(09:26):
that, even if I don't find adonor, just having gotten the
word out there and reconnectingwith so many people was sort of
the reward of the effort.
There was still the pot of goldat the end of the rainbow, but
that was a pretty big win alongthe way as well.
Speaker 1 (09:43):
Hope and help shows up in very miraculous ways,
doesn't it?
Speaker 2 (09:47):
Yeah, it sure does.
Speaker 1 (09:48):
How did it feel to have not only a strategy but
tools laid out for you toleverage in your search for a
living donor?
Speaker 2 (09:56):
That was pretty amazing.
I mean, it really helped makeit easier for me in terms of
diving in.
I think one of the things Irealized right away was that
what I was being provided weretools.
It wasn't somebody doing it forme and I just had to stand back
and wait for the result tohappen.
I was being given the tools andthen I had to use the tools to
(10:16):
benefit myself in the situation,and if I didn't, I wasn't
likely going to have success.
It was definitely the conduitto help me make it happen and to
help me get a positive momentumand a positive attitude about
what I had to do.
So GIFworks provided me a very,very solid plan and then I just
(10:38):
had to execute the plan, getfeedback from you guys, as
you're doing this great You're.
You know we can do a little bitmore in this direction and and
that was a that was an amazing,amazing help.
Not only do you have to bepatient, you have to be sort of
patient and in the dark.
You know, with HIPAA rules, theway they are.
I couldn't know where whereCallie was in the process.
(11:00):
You know she had the abilityand and the right to change her
mind right up until the not eventhe 11th hour, the 12th hour,
and so it would be wrong for meto have too much information in
terms of where she was in theprocess and then sort of get a
high and a low of, oh she'salmost there, oh she changed her
(11:21):
mind, or she's almost there, orsomething happened from a
health perspective which I don'treally have any right to know.
So I understand why, but itdoesn't make it any easier.
Speaker 1 (11:33):
What advice would you give somebody who's considering
working with the GiftWorksprogram, Rich?
Speaker 2 (11:38):
Why are you hesitating?
I can't think of anybody goingthrough in their mind and coming
up with a strong enough reasonthat they can justify to not.
Do it sense to me that youwould allow yourself to go
through the struggle and thedifficulty and the sort of the
(12:02):
one-way street of dialysis orworse without at least giving
this a shot?
It's not a guaranteed success.
I know I was lucky.
It just doesn't make sense tome that somebody wouldn't be
willing to make a little bit ofeffort for such a huge reward.
Speaker 1 (12:19):
What advice do you have to give someone who just
feels frozen in creating anaction plan, whether it be
because they don't feel worthyor they're afraid?
Speaker 2 (12:30):
Because I had some of that initially as well, and I
think that I don't know how youovercome it.
I don't.
The brain is such a weird thingand it runs so much of our
lives, more than anyone isobviously willing to admit in
most cases.
But if for no other reason,help yourself so that then you
can turn around and help others.
(12:51):
If you don't help yourself,it's sad and it's almost
criminal.
I don't know how else to put it.
It took me a minute to getthere, but you just have to get
there and not look back.
But I think on two or threeoccasions both you and Amber
said you're worthy, you're worthit, and I think sometimes you
just need somebody outside ofyour own brain to tell you that
(13:13):
and then hopefully it permeatesand you hear it and I'll say it
for anybody listening to thepodcast you're worth it, go for
it.
Don't get in your own way.
You know everybody hasdifferent versions of kidney
disease.
But however you got there, itdoesn't mean that it's the end
or doesn't mean that you have toaccept a life on dialysis.
Get over yourself and go for it.
Speaker 1 (13:35):
And has it been worth it?
What's life like for youpost-transplant?
Speaker 2 (13:39):
You know it's been great in terms of.
I have other things to worryabout.
I'm an old guy, you know, andyou're on immunosuppressants and
you go through different stepsin terms of getting the meds
right and in terms of makingsure you don't have side effects
, and you know, and all thethings that, all the other
things that I had issues withbefore the transplant don't
miraculously go away.
(14:00):
But that was the huge blackcloud on my horizon and now I
have little clouds here andthere and they're not all.
They're not all huge blackclouds.
So life is still there.
The kidney's functioning great.
It started functioning withinlike two or three minutes after
they put it in, and which is anamazing thing to think about,
(14:22):
just in general of where wheresciences and technology is in
that case.
But all of the stuff that Ihave to deal with in terms of
post-transplant stuff to meseems so minor and so much of a
trade-off that I would take ahundred times out of a hundred
compared to today.
For sure I'd be on dialysis andmy life would suck, and my life
(14:47):
does not suck.
So there isn't any kind oflooking back with any kind of I
would do things differently inthat regard.
Speaker 1 (14:55):
The GiftWorks program works with all different types
of social media and, rich, yousaid my network is on LinkedIn
and you were really adamantabout that and we did have a
really strong response frompeople that you worked with in
the past that came forward viaLinkedIn.
But your donor actually sawyour post on Facebook.
But your donor actually sawyour post on Facebook.
(15:16):
So, switching gears over toCallie, callie, walk us through
how you became aware of Rich'sneed for a kidney.
Speaker 3 (15:29):
You know, it's kind of what everyone does on social
media.
You have some downtime or aminute and you're just kind of,
you know, scrolling through.
It was a weekend.
I have a friend that I used towork with.
I haven't spoken to her in 20years.
I've remained to look at onFacebook and she posted and I
was scrolling through and Iremember scrolling past it and
just something I don't know toldme go, click on it.
I went back, I clicked on itand I read his story and I just,
(15:54):
I don't know.
It was kind of a weird, crazymoment for me that I thought
that's a little strange, where Ijust thought I feel like I need
to help this guy, like I knowRich is.
You know was saying like howscary that can be to be
vulnerable, but to me that'swhat I was drawn to, like here's
this brave human that'sfighting for a chance to live
(16:14):
and telling their story andbeing really vulnerable, and I
was really drawn to that.
Speaker 1 (16:19):
So most people don't see a Facebook post about a
stranger, so this was a friendof a friend who needs a kidney
and take action to do somethingabout it.
What went through your head interms of saying, okay, I'm going
to explore this further.
Speaker 3 (16:34):
Well, I slept on it a few days and when I couldn't
shake the feeling that I atleast needed to reach out to
that number which happened to beyou and get some information, I
just was telling myself, likethere's, there's a reason, right
, there's a reason bigger thanme, bigger than there.
There's a reason.
I'm drawn to this, and part ofit was I lost my brother.
(16:56):
He was only 40.
He died from kidney disease butironically that he never even
wanted information on kidneytransplants.
He just accepted his fate andwanted to pass away.
And even when we brought it up,he said no, no, no.
So I had no knowledge on livingkidney donation.
I didn't really understand it.
Knowledge on living kidneydonation, I didn't really
(17:20):
understand it.
So I just that's.
When I decided on Sunday toreach out to the number, because
I thought let me just at leastget some facts right, I didn't
know anything.
Let me just at least get thefacts on.
Is this even something I couldlook into doing?
Speaker 1 (17:31):
So that's that's beautiful and it's also quite
sad that you have somebody inyour life that you loved, your
brother, who really took theopposite approach that Rich did.
Speaker 3 (17:41):
Yeah, he put his head in the sand.
It was his only response.
He called all of us siblingsand said he'd had kidney disease
for a little while, said hiskidney function was either
dialysis or transplant and hewas done.
He was done fighting and hesaid his last wishes was he
wanted to do a sibling trip.
(18:02):
So we all met up.
We went to Utah, yellowstone,and while we were on the trip I
brought it up once.
I said, paul, why won't youeven consider?
And he said no, it's my wishes,it's too hard and that kind of
was always in the back of myhead too hard, why is a kidney
donation on his part too hard?
And that really bothered me.
(18:23):
So I was really drawn to Rich'sstory that I'm like here's a
man who's not saying, okay, thismight be hard, there might be
obstacles, but so that was kindof my drive to get more
information, like what does thisentail?
So that was kind of my drive toget more information Like what
does this entail, what does thismean?
And honestly, I was very drawnto Rich.
There was something verygenuine about him.
(18:45):
I don't know, I could just feelit through the Facebook post.
There just was something abouthim that stood out to me.
Speaker 1 (18:53):
And I couldn't quite explain it.
I do remember when you reachedout because you didn't know Rich
, and it's very interesting.
You're both the type of peoplewho did not let the ball sit in
your court for more than 10seconds.
You both had such a strongsense of urgency.
Speaker 3 (19:08):
Once I got information from you and there
was something you said that Ihave used that just stuck with
me.
You made the analogy let's sayyou're walking by with two life
preservers and you see someonedrowning and you need one, but
do you say to that persondrowning, I'm going to save this
in case somebody I know or Ineed this other one.
And that just hit with me.
(19:30):
And that's when I started doingI'm very type A I just thought,
okay, I'm going to fill out theinformation to at least get the
ball rolling, because Iunderstood from you it was a
process and there were so manyunknowns that it wasn't really
you know, at that moment ofstarting to do it, it wasn't
something that I'm like oh yeah,this is going to happen.
It was more of let's figurethis out.
And I started researching.
(19:53):
You know I'm going to Purduefor my psychology degree, so I
have access to a wonderfullibrary and I started
researching medical journals andpeer reviewed things, you know,
not just stuff you can get onFacebook or Wikipedia.
So I was really trying tofigure out is this right for me?
What does this mean for me?
But I also drove the process of.
(20:13):
I did an Excel sheet of everysingle test.
As soon as I got the results, Ientered it gave my coordinator
24 hours If I didn't hear fromher.
I responded and said saw, thelevels are normal of this, this,
this, this, this, what's thenext step?
Like I just drove it because Ithought this is me, I'm only one
person, she's over many.
(20:33):
If I'm going to get the ballrolling, I'm going to stick out
so that she's just like pushingit forward.
Speaker 1 (20:39):
So Rich is smiling and laughing.
Why are you smiling andlaughing, Rich?
Speaker 2 (20:43):
Well, because I was doing the same thing, building
spreadsheets for how muchresponse each post was getting,
and I would look, you know,every day or every couple of
days, and I would put thenumbers and how the numbers were
changing from time to time andtrying to figure out is there
one post that's better thananother type of post?
(21:03):
So I was kind of doing the samething on my end.
So that was one of the smiles.
The other smile was thinking interms of I was thinking on my
side that it was taking foreverand you know, as we talked about
before, that I wasn't gettingthe results that I was kind of
hoping would come from this, andin the meantime she's pushing
(21:27):
like crazy to speed it up.
Parallel paths are prettyincredible.
Speaker 3 (21:32):
I remember saying numerous times there's someone
on the other end that is gettingsicker and possibly dying, like
can we get this or can we speedthis up?
And you know, looking back inperspective, I have a lot more
appreciation for why it'scomplicated, why and I respect
(21:54):
the process so much more on thisside because they are trying to
make sure I'm okay.
They're trying to make surethey are not going to take a
kidney from me.
That one isn't going to do wellin you or anyone, but also is
going to leave me in harm's way.
But in that moment I did feelthis sense of urgency of to know
that you didn't know.
(22:15):
That bothered me.
I understood why also, but frommy standpoint it's like just
give the guy some hope, just lethim know there's someone that's
so driven.
Speaker 2 (22:26):
I think, both from the recipient and the donor side
, there's a lot of confidencebuilding there, knowing all of
the steps that she had to gothrough and all of the
opportunities to opt out thatsomeone has along the way.
I mean it took months.
It's definitely not a decisionthat's made on the fly or, you
(22:47):
know, in the heat of a moment.
Speaker 3 (22:50):
I researched every result.
I got to see.
What does this mean, what doesthis level mean?
You know, I wanted to be in theknow, I didn't want to just
blindly be like.
Here's my kidney.
Speaker 1 (23:00):
Allie, what was the best part for you?
Having the opportunity topartner with GiftWorks through
your donation process.
Speaker 3 (23:08):
I think it was the GiftWorks team.
Just knowing I had advocates onmy side, knowing I had a team
outside of Indiana transplantthat was going to always look
out for me be.
Sometimes I had to vent and Ineeded to talk to people that
understood the journey, thathave been through it or, you
(23:30):
know, we're kind of related tosomeone that went through it.
It was just a different dynamicthan venting to family.
It was just nice to feel like Ihad a team that was on my side
and looking out for my bestinterest.
I didn't know anything until Italked to gift works.
I didn't know about donorshield, I didn't know about the
voucher program.
That's what I mean.
Without gift works I don'tthink I would have ever heard
(23:51):
Rich's story.
So I do.
I feel like it gave me somereally great resources moving
forward and then after thedonation, it has continued to
give me resources.
Like I know, I could call upgift works at any given time
with anything and they wouldhelp me.
Speaker 1 (24:08):
And what's the best part about being a kidney donor?
Kelly?
Speaker 3 (24:12):
I think for me, this overwhelming feeling that my
life isn't the only thing thatis important, right, it is a big
ripple effect that has happenedafter the kidney donation.
My act of donating kidney didsave Rich, but it's also rippled
(24:32):
out to many other peoplebecoming aware and stepping up
like family members.
My daughters, who are all inthe medical field, have become
very educated with it.
But I honestly think the bestthing about the whole kidney
donation is the way I view mybody.
Like I have this pride of whatmy body can do and I always ate
(24:55):
well and worked out, but it wasmore of I need to be this size
and this weight and it changedmy whole way of thinking of my
body's, this amazing thing thatgrew this kidney for another
human.
Like I need to feed it and takecare of it because I'm proud of
what my body could do, if thatmakes sense that's really
beautiful.
Speaker 2 (25:15):
Thanks for sharing that by the way, that's also
created a big sense of guiltevery time I eat something bad I
still ain't bad being, that'sjust I don't feel so guilty
about it.
Speaker 3 (25:27):
It's more like callie's pride is rich as shame
I still have a glass of wine,occasionally rich, you can have
that I got a young type A kidney.
Speaker 2 (25:39):
You did Callie and I have spoken and you know, I
think one of her questions alongthe way has always been have I
changed because of her you know,the strength and power of her
kidney, representing who she is?
Has it changed me?
And actually I think there'sthere's times where I sort of
(26:00):
feel like it does or has Um andand when I think about it always
kind of brings a smile to myface and it's it's.
It's awesome hearing her sideof the story and you know we've
had conversations and so it'snot the sort of the first time
that I've heard it, but eachtime sort of another nuance
comes in and another emotionkind of sweeps through me about
(26:22):
it.
So it's really cool to be ableto do something like this and to
be able to have thisconversation and kind of renew
the relationship and renew therespect for what she's done.
Speaker 1 (26:34):
Did you just learn something new on our interview
today?
Not really.
Did you just learn somethingnew on our interview?
Speaker 2 (26:37):
today Not really.
I think I knew sort of the inquotations who she was.
You know the type of personthat she is.
It's just kind of refreshing itand hearing it again is always
a very cool thing.
Speaker 1 (26:51):
Callie.
Well, rich was a stranger toyou.
He was a friend of a friend.
You did have kind of an unusualreference that you found out
about to be able to find out alittle bit more about who Rich
was.
Do you want to tell us aboutthat?
Speaker 3 (27:05):
Yeah.
So I started the process inJanuary.
I waited a little while to tellmy siblings just because with
the loss of my brother I knew itwould kind of be an emotional
thing and I wanted to make sureit's further along in.
So in March I did a zoom callwith my siblings, told them they
were so supportive, hung up thephone and two minutes later my
(27:25):
brother Ryan calls me and sayswait, who did you say?
And I said his name's RichCharka.
And he said Kelly.
That was my old boss at marketstar, like.
So he worked with rich andvouched for him and said he was
a great guy and he just couldn'tbelieve what a small world it
really is that here this is theman I'm giving my kidney to.
That Ryan knew him.
Speaker 1 (27:45):
How does that make you feel Rich?
Speaker 2 (27:46):
I didn't work with Ryan that long and he did a good
job for us.
He was a good employee, but itwasn't somebody that was
particularly close to.
He worked at the company forquite a while but in in terms of
our direct uh connection, itwasn't that strong, and so I was
(28:06):
really overwhelmed, you know,in terms of all all of the
response that I'd gotten fromfrom previous coworkers was
great, and so to see anotherstrong connection was really
cool.
Honestly, it's just anotherlittle bit of evidence of how
incredibly fortunate I've beenthrough this whole process that
something like that happened,and I think the strongest part
of that honestly was I think ithelped Callie to validate that
(28:31):
she was doing it for somebodythat hopefully she felt was
worthy of it, and so Iappreciate that aspect of it a
lot.
Speaker 1 (28:40):
I will say at that point I know Callie was going to
do it, no matter what.
Speaker 3 (28:43):
I was going to do it, rich, even if he said I was a
jerk, I would have been likewell, get my kidney Ryan, it was
happening.
Speaker 2 (28:51):
I'm grateful for that .
Speaker 3 (28:52):
I will say, like all these little things along the
way, look at all the signs, lookat everything that has led into
this.
It made it so much easier to goand go through and donate.
It just eased my mind knowingall those little tiny
connections that happened alongthe way.
Speaker 1 (29:12):
So it did help.
That's the best part about whatI get to do is all the
miraculous little things thathappen like that, and it's rare
that I see two people cometogether where I don't see all
those those little tiny thingsthat add up into a miracle, and
it's what life's about.
Speaker 3 (29:26):
That's why I say I think this whole thing is bigger
than me.
It's bigger than rich.
Not everyone's going to donatea kidney, right, but everyone
can do a little something, justlike you can share your KitKat,
you can talk about it, you canspread information.
I mean, you can do littlethings.
Not everyone has to be a donor,but you can talk about it and
you can educate each other aboutit.
Speaker 2 (29:48):
Through my whole outreach process, going back to
thinking about whether you'reworthy or not, or you know the
difficulty of asking someone todonate I made it a point through
everything that I did not toever ask anyone to donate a
kidney.
I didn't feel comfortablereaching out to someone and say,
would you consider donatingyour kidney to me?
But I felt very comfortableasking someone to help me spread
(30:13):
the word about my situation.
And maybe, Lori, that's part ofthe answer to the question you
asked about someone being frozenand not being able to move
forward is don't think aboutasking people to donate their
kidney.
Ask about helping spread theword of your situation.
That's an easy ask.
Helping spread the word is assimple as a click on a computer.
(30:36):
That's something that anyonecould do.
Speaker 1 (30:50):
Helping spread the word is as simple as a click on
a computer.
That's something that anyonecould do.
Just tell people to tell yourstory, that people hear it and
it slides through their brainand goes straight to their heart
, and I think that that'sexactly what Callie described.
Yeah, it was.
Speaker 2 (31:07):
Good thing I didn't ask for her heart.
Speaker 3 (31:11):
Rich.
I need that.
Speaker 1 (31:15):
Is there anything else you guys want to say to
each other or to our audiencetoday?
Speaker 3 (31:20):
No, just that.
I'm going to get a shirt thatsays what'd you say?
Johnny on the spot.
I've not that, just aged you, Ihave not heard.
I'm going to get a shirt thatsays Callie, AKA Johnny on the
spot.
Speaker 2 (31:34):
Here's your.
Speaker 1 (31:35):
Christmas present.
Rich, there you go.
Speaker 2 (31:37):
Yeah, I don't know where these sayings come from or
where I pull that out of, butit's such a great match and we
have such a good relationship.
Post this how do we copy andpaste?
Speaker 3 (31:48):
Right.
Speaker 2 (31:49):
And I think that's what gift works is doing is sort
of you know, I'm glad we weresort of the pilot and hopefully
they can copy and pastethousands of times what what
we've been able to accomplishtogether and uh, and, and that
would be just a phenomenaloutcome from being part of the
pilot.
Speaker 3 (32:08):
I think from a donor standpoint.
In my opinion, my reason fordoing it was something deep
within me I don't have anyexpectations Was something deep
within me.
I don't have any expectations,I don't know.
I feel like when you givesomething away, like a kidney,
you're not giving it with theexpectation that I get to now
(32:29):
know what's happening with thatkidney every step of the way.
It's yours, it's no longer mine.
I don't have any pull on thatanymore whatsoever.
So you don't owe me anything,rich.
Speaker 2 (32:38):
I have to do right by it.
I've received this tremendousgift and it would be
irresponsible of me to not lookat it that way and not treat it
that way.
Speaker 3 (32:49):
I mean, my, my goal is yeah, hopefully you'll live a
very, very long beautiful life,but I also don't want that to
be a long beautiful life whereyou're not living and enjoying
life Like that's supposed towant that to be a long beautiful
life where you're not livingand enjoying life Like that's
supposed to be the whole pointright.
Speaker 1 (33:01):
Well, for me it's been incredible to see you both
do just that, not just live yourlives fully, but to watch both
of you then immediately jumpinto advocacy work in the
transplant space.
You guys are just truly aninspiration and you illustrate
how you make the magic happen indonors and recipients coming
together.
Thanks for piloting with us.
Speaker 2 (33:22):
It's been awesome.
Thank you so much.
Speaker 1 (33:24):
Thanks, bye you guys.
Bye guys To our listeners.
Thank you so much for tuninginto Donor Diaries.
If you've enjoyed this episode,if you enjoy this podcast,
please be sure to follow thepodcast wherever you're
listening.
It's free and you'llautomatically get new episodes
as soon as they're released.
And if you haven't already,leaving a quick rating and
(33:46):
review helps more peoplediscover these important stories
.
So if you are a regularlistener and haven't done that
yet, we'd be so grateful if youtook a moment to do it.
It really makes a difference.
Want to keep the conversationgoing?
Find the Donor Diaries podcaston Facebook and drop us a
comment.
We'd love to hear from you Tolearn more about GiftWorks, the
sponsor of season three of DonorDiaries.
(34:08):
Visit yourgiftworkscom andcheck out our show notes for
more information.
Here's to putting more goodinto the world.
One story, one act of kindness,one life at a time, until next
(34:42):
time.
This is Lori Lee signing off.
I just want to feel thesunshine.
I share this life with you.
I share this life with you.
Bye.
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 diaries.
(00:42):
I'm your host, l Lee, and I'malso the co-founder of the
GiftWorks program, which wasdeveloped with my partner, amber
Kahn.
Giftworks is more than just aprogram.
It's a movement designed toempower and support both
patients and their living donors.
Built on three pillarseducation, support and advocacy.
Our mission is really quitesimple advocacy our mission is
(01:06):
really quite simple to ensurethat kidney patients and their
donors feel equally informed,supported and part of an
extraordinary life-savingexchange.
We piloted this program at theUniversity of Utah, concluding
in 2023, and we're now workingto scale it to help even more
people navigate their transplantand donation journeys.
But today's episode goes beyondthe nuts and bolts of the
GiftWorks program.
We're sharing the beautifulstory of Rich and Callie, a
(01:30):
kidney recipient and kidneydonor, who successfully
navigated our program andutilized its tools with
excellence.
Whether you're a patientseeking a donor or a potential
donor exploring the donationprocess, their experience is an
inspiring example of what'spossible.
Exploring the donation process,their experience is an
inspiring example of what'spossible with the right support.
Let's dive in.
(01:50):
Welcome to Donor Diaries,callie and Rich.
Thanks so much for joining metoday.
Thank you for having me Rich.
let's start with your background.
Can you tell us a little bitabout why you needed a kidney
transplant?
Speaker 2 (02:04):
Yeah, I have a family history of polycystic kidney
disease.
It's multi-generational For me.
I've known that I had thisdisease, probably about 30 plus
years.
My mom had a transplant earlyin the history of transplants,
and so I've known for a longtime that the day was going to
come when my kidney functionwould cease.
For a long part of my life Iwas a workaholic.
(02:25):
I didn't do great with diet, Iwas overweight, and my efforts
to sort of get that in linedidn't really get serious until
I was close to retirement, andby that point the kidney
functions were on a ski slopeand it was the inevitability
that I wasn't going to outlive.
The decline of my kidneysbecame a real thing.
Speaker 1 (02:48):
And did you assume that you would pursue the wait
list and that you would get akidney through the wait list?
Speaker 2 (02:54):
That's right.
Yeah, I was hoping that thedrugs that I was taking would
slow the decline, at least sortof flatten that ski slope out,
until a deceased donor becameavailable.
Speaker 1 (03:07):
And what was your introduction to living donation?
Speaker 2 (03:09):
It was mentioned in passing honestly during the
indoctrination of into being onthe list, but it didn't really
feel like a reality to mebecause of my family history.
So when I thought of a livingdonor, all I was really thinking
about was my immediate family.
I wasn't even really thinkingfriends or people outside my
(03:34):
most immediate circle and I knewthat pretty much everyone in my
immediate circle wouldn'treally qualify.
I sort of battened down thehatches, tried to get in better
shape.
I lost weight and I was againtrying to flatten that ski slope
, thinking I needed to goanother three, four or five
years and hope that I was stillhealthy enough for a deceased
(03:56):
donor.
That was really, honestly.
For me that was really thebiggest challenge or the biggest
fear is that by the time adeceased donor became available
I wouldn't be healthy enough toremain on the list.
Something would have happenedthat would have disqualified me
from getting a transplant.
Speaker 1 (04:15):
That's a very legitimate fear, and did you
have to go on dialysis duringthat time?
Speaker 2 (04:20):
I'm probably one of the luckiest people alive in
that regard, in that I wasprobably maybe a year from
having to go on dialysis, so myintroduction to alternatives for
living donation came at anincredibly opportune time for me
.
But, honestly, gift works andDr Molnar that really was the
(04:43):
key to me, even consideringanything like that.
Dr Molnar reached out to me andasked me if I would be willing
to be a participant in the pilot, and you know it, honestly,
from my perspective, theredidn't seem to be at that point
any real downside to it.
I didn't know exactly what itentailed.
(05:03):
He didn't go into a lot ofdetail about it, and so I said
yes.
And then I heard from GiftWorksa few weeks later, and that's
when I got a more detaileddescription of what it would
entail, and it didn't seem likeit was a difficult or
overwhelming thing.
I just had to get over theissues of do I deserve it, which
(05:25):
was kind of an interestingthing to think through.
And then the other one was veryfew people outside my inner
circle really knew my situation,and so the conversation was go
on social media and tell theworld about it and be as
efficient and as effective aspossible to tell the world about
it.
So there was a moment ofhesitation about that, but it
(05:46):
didn't really seem like thatmuch of a negative, considering
what the positive outcome of itmight be To me.
After a moment's hesitation, itseemed like this is a no-brainer
, I have to do it.
You just have to take thatfirst step and say I can do this
.
It's not that hard.
I mean, how hard is posting onFacebook or even recording a
small video on Facebook or anykind of social media outlet?
(06:09):
It's not that hard.
Gifworks gave me the benefit ofsome serious expertise in the
area that I didn't have, butit's not something that the
average person, if they chooseto do it, can't do on their own.
Speaker 1 (06:22):
If it's not hard, why do you think people don't do it
?
Can't do on their own?
If it's not hard, why do youthink people don't do it?
Speaker 2 (06:25):
That's the big question and it's hard for me to
answer that, to get into otherpeople's brains that way.
But I think the biggest thingfor me was I didn't want to
delve too much into it because Ididn't want to end up sort of
overwhelmingly invested in itand not having a positive
(06:47):
outcome.
It's sort of the risk ofputting yourself out there and
being rejected and taking thatpersonally.
So that's definitely aconsideration.
I think once you're able to beaware that it exists and that
there is a possibility ofsuccess, I think more people
would try it if it was a bettereducational process through the
(07:07):
transplant community to say thisis a real alternative and there
are many ways that you can geta kidney.
But you have to try, it's notcoming to you, you have to go
get it.
And I just don't think a verybig percentage of the people on
the list are really aware ofthat possibility and that's
really a shame.
Speaker 1 (07:26):
It is.
What did it feel like to put itout there and how did people
respond when you did put it outthere?
Speaker 2 (07:33):
What's interesting is that you're right, I didn't.
I wasn't aggressive, I wasn'tcommunicating the situation
because I was used to notcommunicating it over all those
many years.
Once I got it out there, Ireally kicked myself for not
having done it sooner.
I mean, obviously, the timingworked out great for me.
Callie was Johnny on the spotwhen when I really needed it, so
(07:54):
it was great.
But you know, I probably spentsix months, maybe close to a
year, of not really getting allof the requirements done to get
myself on the transplant list.
I can't really tell you why,maybe just the fear of having to
face the inevitability of it.
You know, as long as I was onlyjust taking pills and I was
feeling okay and I was living anormal life, it didn't seem like
(08:17):
I really needed to hurry up anddo something.
It wasn't until the fear ofuh-oh, dialysis is a real thing.
It's around the corner and itscared the crap out of me that
it motivated me to do something.
I've told this to many people.
I was much more afraid ofdialysis than I was of the
transplant.
But dialysis is a at best ashort-term solution, I think,
(08:42):
and it changes your life sodramatically that for me the
transplant was sort of my onlydirection that I really wanted
to pursue.
The other part of your question,the reaction I got and how I
felt about putting myself outthere honestly it was amazing
the number of people that Iheard from the responses that I
got, the emails, the texts, theconversations that I had.
(09:03):
I was a pretty busy guy forprobably the first three or four
weeks after I first got sort ofthe launch of the campaign.
I was honestly overwhelmed.
I was really emotional abouthow many relationships I revived
, people I hadn't heard from ortalked to in a really long time.
Support.
It was rewarding and, honestly,I started thinking at one point
(09:26):
that, even if I don't find adonor, just having gotten the
word out there and reconnectingwith so many people was sort of
the reward of the effort.
There was still the pot of goldat the end of the rainbow, but
that was a pretty big win alongthe way as well.
Speaker 1 (09:43):
Hope and help shows up in very miraculous ways,
doesn't it?
Speaker 2 (09:47):
Yeah, it sure does.
Speaker 1 (09:48):
How did it feel to have not only a strategy but
tools laid out for you toleverage in your search for a
living donor?
Speaker 2 (09:56):
That was pretty amazing.
I mean, it really helped makeit easier for me in terms of
diving in.
I think one of the things Irealized right away was that
what I was being provided weretools.
It wasn't somebody doing it forme and I just had to stand back
and wait for the result tohappen.
I was being given the tools andthen I had to use the tools to
(10:16):
benefit myself in the situation,and if I didn't, I wasn't
likely going to have success.
It was definitely the conduitto help me make it happen and to
help me get a positive momentumand a positive attitude about
what I had to do.
So GIFworks provided me a very,very solid plan and then I just
(10:38):
had to execute the plan, getfeedback from you guys, as
you're doing this great You're.
You know we can do a little bitmore in this direction and and
that was a that was an amazing,amazing help.
Not only do you have to bepatient, you have to be sort of
patient and in the dark.
You know, with HIPAA rules, theway they are.
I couldn't know where whereCallie was in the process.
(11:00):
You know she had the abilityand and the right to change her
mind right up until the not eventhe 11th hour, the 12th hour,
and so it would be wrong for meto have too much information in
terms of where she was in theprocess and then sort of get a
high and a low of, oh she'salmost there, oh she changed her
(11:21):
mind, or she's almost there, orsomething happened from a
health perspective which I don'treally have any right to know.
So I understand why, but itdoesn't make it any easier.
Speaker 1 (11:33):
What advice would you give somebody who's considering
working with the GiftWorksprogram, Rich?
Speaker 2 (11:38):
Why are you hesitating?
I can't think of anybody goingthrough in their mind and coming
up with a strong enough reasonthat they can justify to not.
Do it sense to me that youwould allow yourself to go
through the struggle and thedifficulty and the sort of the
(12:02):
one-way street of dialysis orworse without at least giving
this a shot?
It's not a guaranteed success.
I know I was lucky.
It just doesn't make sense tome that somebody wouldn't be
willing to make a little bit ofeffort for such a huge reward.
Speaker 1 (12:19):
What advice do you have to give someone who just
feels frozen in creating anaction plan, whether it be
because they don't feel worthyor they're afraid?
Speaker 2 (12:30):
Because I had some of that initially as well, and I
think that I don't know how youovercome it.
I don't.
The brain is such a weird thingand it runs so much of our
lives, more than anyone isobviously willing to admit in
most cases.
But if for no other reason,help yourself so that then you
can turn around and help others.
(12:51):
If you don't help yourself,it's sad and it's almost
criminal.
I don't know how else to put it.
It took me a minute to getthere, but you just have to get
there and not look back.
But I think on two or threeoccasions both you and Amber
said you're worthy, you're worthit, and I think sometimes you
just need somebody outside ofyour own brain to tell you that
(13:13):
and then hopefully it permeatesand you hear it and I'll say it
for anybody listening to thepodcast you're worth it, go for
it.
Don't get in your own way.
You know everybody hasdifferent versions of kidney
disease.
But however you got there, itdoesn't mean that it's the end
or doesn't mean that you have toaccept a life on dialysis.
Get over yourself and go for it.
Speaker 1 (13:35):
And has it been worth it?
What's life like for youpost-transplant?
Speaker 2 (13:39):
You know it's been great in terms of.
I have other things to worryabout.
I'm an old guy, you know, andyou're on immunosuppressants and
you go through different stepsin terms of getting the meds
right and in terms of makingsure you don't have side effects
, and you know, and all thethings that, all the other
things that I had issues withbefore the transplant don't
miraculously go away.
(14:00):
But that was the huge blackcloud on my horizon and now I
have little clouds here andthere and they're not all.
They're not all huge blackclouds.
So life is still there.
The kidney's functioning great.
It started functioning withinlike two or three minutes after
they put it in, and which is anamazing thing to think about,
(14:22):
just in general of where wheresciences and technology is in
that case.
But all of the stuff that Ihave to deal with in terms of
post-transplant stuff to meseems so minor and so much of a
trade-off that I would take ahundred times out of a hundred
compared to today.
For sure I'd be on dialysis andmy life would suck, and my life
(14:47):
does not suck.
So there isn't any kind oflooking back with any kind of I
would do things differently inthat regard.
Speaker 1 (14:55):
The GiftWorks program works with all different types
of social media and, rich, yousaid my network is on LinkedIn
and you were really adamantabout that and we did have a
really strong response frompeople that you worked with in
the past that came forward viaLinkedIn.
But your donor actually sawyour post on Facebook.
But your donor actually sawyour post on Facebook.
(15:16):
So, switching gears over toCallie, callie, walk us through
how you became aware of Rich'sneed for a kidney.
Speaker 3 (15:29):
You know, it's kind of what everyone does on social
media.
You have some downtime or aminute and you're just kind of,
you know, scrolling through.
It was a weekend.
I have a friend that I used towork with.
I haven't spoken to her in 20years.
I've remained to look at onFacebook and she posted and I
was scrolling through and Iremember scrolling past it and
just something I don't know toldme go, click on it.
I went back, I clicked on itand I read his story and I just,
(15:54):
I don't know.
It was kind of a weird, crazymoment for me that I thought
that's a little strange, where Ijust thought I feel like I need
to help this guy, like I knowRich is.
You know was saying like howscary that can be to be
vulnerable, but to me that'swhat I was drawn to, like here's
this brave human that'sfighting for a chance to live
(16:14):
and telling their story andbeing really vulnerable, and I
was really drawn to that.
Speaker 1 (16:19):
So most people don't see a Facebook post about a
stranger, so this was a friendof a friend who needs a kidney
and take action to do somethingabout it.
What went through your head interms of saying, okay, I'm going
to explore this further.
Speaker 3 (16:34):
Well, I slept on it a few days and when I couldn't
shake the feeling that I atleast needed to reach out to
that number which happened to beyou and get some information, I
just was telling myself, likethere's, there's a reason, right
, there's a reason bigger thanme, bigger than there.
There's a reason.
I'm drawn to this, and part ofit was I lost my brother.
(16:56):
He was only 40.
He died from kidney disease butironically that he never even
wanted information on kidneytransplants.
He just accepted his fate andwanted to pass away.
And even when we brought it up,he said no, no, no.
So I had no knowledge on livingkidney donation.
I didn't really understand it.
Knowledge on living kidneydonation, I didn't really
(17:20):
understand it.
So I just that's.
When I decided on Sunday toreach out to the number, because
I thought let me just at leastget some facts right, I didn't
know anything.
Let me just at least get thefacts on.
Is this even something I couldlook into doing?
Speaker 1 (17:31):
So that's that's beautiful and it's also quite
sad that you have somebody inyour life that you loved, your
brother, who really took theopposite approach that Rich did.
Speaker 3 (17:41):
Yeah, he put his head in the sand.
It was his only response.
He called all of us siblingsand said he'd had kidney disease
for a little while, said hiskidney function was either
dialysis or transplant and hewas done.
He was done fighting and hesaid his last wishes was he
wanted to do a sibling trip.
(18:02):
So we all met up.
We went to Utah, yellowstone,and while we were on the trip I
brought it up once.
I said, paul, why won't youeven consider?
And he said no, it's my wishes,it's too hard and that kind of
was always in the back of myhead too hard, why is a kidney
donation on his part too hard?
And that really bothered me.
(18:23):
So I was really drawn to Rich'sstory that I'm like here's a
man who's not saying, okay, thismight be hard, there might be
obstacles, but so that was kindof my drive to get more
information, like what does thisentail?
So that was kind of my drive toget more information Like what
does this entail, what does thismean?
And honestly, I was very drawnto Rich.
There was something verygenuine about him.
(18:45):
I don't know, I could just feelit through the Facebook post.
There just was something abouthim that stood out to me.
Speaker 1 (18:53):
And I couldn't quite explain it.
I do remember when you reachedout because you didn't know Rich
, and it's very interesting.
You're both the type of peoplewho did not let the ball sit in
your court for more than 10seconds.
You both had such a strongsense of urgency.
Speaker 3 (19:08):
Once I got information from you and there
was something you said that Ihave used that just stuck with
me.
You made the analogy let's sayyou're walking by with two life
preservers and you see someonedrowning and you need one, but
do you say to that persondrowning, I'm going to save this
in case somebody I know or Ineed this other one.
And that just hit with me.
(19:30):
And that's when I started doingI'm very type A I just thought,
okay, I'm going to fill out theinformation to at least get the
ball rolling, because Iunderstood from you it was a
process and there were so manyunknowns that it wasn't really
you know, at that moment ofstarting to do it, it wasn't
something that I'm like oh yeah,this is going to happen.
It was more of let's figurethis out.
And I started researching.
(19:53):
You know I'm going to Purduefor my psychology degree, so I
have access to a wonderfullibrary and I started
researching medical journals andpeer reviewed things, you know,
not just stuff you can get onFacebook or Wikipedia.
So I was really trying tofigure out is this right for me?
What does this mean for me?
But I also drove the process of.
(20:13):
I did an Excel sheet of everysingle test.
As soon as I got the results, Ientered it gave my coordinator
24 hours If I didn't hear fromher.
I responded and said saw, thelevels are normal of this, this,
this, this, this, what's thenext step?
Like I just drove it because Ithought this is me, I'm only one
person, she's over many.
(20:33):
If I'm going to get the ballrolling, I'm going to stick out
so that she's just like pushingit forward.
Speaker 1 (20:39):
So Rich is smiling and laughing.
Why are you smiling andlaughing, Rich?
Speaker 2 (20:43):
Well, because I was doing the same thing, building
spreadsheets for how muchresponse each post was getting,
and I would look, you know,every day or every couple of
days, and I would put thenumbers and how the numbers were
changing from time to time andtrying to figure out is there
one post that's better thananother type of post?
(21:03):
So I was kind of doing the samething on my end.
So that was one of the smiles.
The other smile was thinking interms of I was thinking on my
side that it was taking foreverand you know, as we talked about
before, that I wasn't gettingthe results that I was kind of
hoping would come from this, andin the meantime she's pushing
(21:27):
like crazy to speed it up.
Parallel paths are prettyincredible.
Speaker 3 (21:32):
I remember saying numerous times there's someone
on the other end that is gettingsicker and possibly dying, like
can we get this or can we speedthis up?
And you know, looking back inperspective, I have a lot more
appreciation for why it'scomplicated, why and I respect
(21:54):
the process so much more on thisside because they are trying to
make sure I'm okay.
They're trying to make surethey are not going to take a
kidney from me.
That one isn't going to do wellin you or anyone, but also is
going to leave me in harm's way.
But in that moment I did feelthis sense of urgency of to know
that you didn't know.
(22:15):
That bothered me.
I understood why also, but frommy standpoint it's like just
give the guy some hope, just lethim know there's someone that's
so driven.
Speaker 2 (22:26):
I think, both from the recipient and the donor side
, there's a lot of confidencebuilding there, knowing all of
the steps that she had to gothrough and all of the
opportunities to opt out thatsomeone has along the way.
I mean it took months.
It's definitely not a decisionthat's made on the fly or, you
(22:47):
know, in the heat of a moment.
Speaker 3 (22:50):
I researched every result.
I got to see.
What does this mean, what doesthis level mean?
You know, I wanted to be in theknow, I didn't want to just
blindly be like.
Here's my kidney.
Speaker 1 (23:00):
Allie, what was the best part for you?
Having the opportunity topartner with GiftWorks through
your donation process.
Speaker 3 (23:08):
I think it was the GiftWorks team.
Just knowing I had advocates onmy side, knowing I had a team
outside of Indiana transplantthat was going to always look
out for me be.
Sometimes I had to vent and Ineeded to talk to people that
understood the journey, thathave been through it or, you
(23:30):
know, we're kind of related tosomeone that went through it.
It was just a different dynamicthan venting to family.
It was just nice to feel like Ihad a team that was on my side
and looking out for my bestinterest.
I didn't know anything until Italked to gift works.
I didn't know about donorshield, I didn't know about the
voucher program.
That's what I mean.
Without gift works I don'tthink I would have ever heard
(23:51):
Rich's story.
So I do.
I feel like it gave me somereally great resources moving
forward and then after thedonation, it has continued to
give me resources.
Like I know, I could call upgift works at any given time
with anything and they wouldhelp me.
Speaker 1 (24:08):
And what's the best part about being a kidney donor?
Kelly?
Speaker 3 (24:12):
I think for me, this overwhelming feeling that my
life isn't the only thing thatis important, right, it is a big
ripple effect that has happenedafter the kidney donation.
My act of donating kidney didsave Rich, but it's also rippled
(24:32):
out to many other peoplebecoming aware and stepping up
like family members.
My daughters, who are all inthe medical field, have become
very educated with it.
But I honestly think the bestthing about the whole kidney
donation is the way I view mybody.
Like I have this pride of whatmy body can do and I always ate
(24:55):
well and worked out, but it wasmore of I need to be this size
and this weight and it changedmy whole way of thinking of my
body's, this amazing thing thatgrew this kidney for another
human.
Like I need to feed it and takecare of it because I'm proud of
what my body could do, if thatmakes sense that's really
beautiful.
Speaker 2 (25:15):
Thanks for sharing that by the way, that's also
created a big sense of guiltevery time I eat something bad I
still ain't bad being, that'sjust I don't feel so guilty
about it.
Speaker 3 (25:27):
It's more like callie's pride is rich as shame
I still have a glass of wine,occasionally rich, you can have
that I got a young type A kidney.
Speaker 2 (25:39):
You did Callie and I have spoken and you know, I
think one of her questions alongthe way has always been have I
changed because of her you know,the strength and power of her
kidney, representing who she is?
Has it changed me?
And actually I think there'sthere's times where I sort of
(26:00):
feel like it does or has Um andand when I think about it always
kind of brings a smile to myface and it's it's.
It's awesome hearing her sideof the story and you know we've
had conversations and so it'snot the sort of the first time
that I've heard it, but eachtime sort of another nuance
comes in and another emotionkind of sweeps through me about
(26:22):
it.
So it's really cool to be ableto do something like this and to
be able to have thisconversation and kind of renew
the relationship and renew therespect for what she's done.
Speaker 1 (26:34):
Did you just learn something new on our interview
today?
Not really.
Did you just learn somethingnew on our interview?
Speaker 2 (26:37):
today Not really.
I think I knew sort of the inquotations who she was.
You know the type of personthat she is.
It's just kind of refreshing itand hearing it again is always
a very cool thing.
Speaker 1 (26:51):
Callie.
Well, rich was a stranger toyou.
He was a friend of a friend.
You did have kind of an unusualreference that you found out
about to be able to find out alittle bit more about who Rich
was.
Do you want to tell us aboutthat?
Speaker 3 (27:05):
Yeah.
So I started the process inJanuary.
I waited a little while to tellmy siblings just because with
the loss of my brother I knew itwould kind of be an emotional
thing and I wanted to make sureit's further along in.
So in March I did a zoom callwith my siblings, told them they
were so supportive, hung up thephone and two minutes later my
(27:25):
brother Ryan calls me and sayswait, who did you say?
And I said his name's RichCharka.
And he said Kelly.
That was my old boss at marketstar, like.
So he worked with rich andvouched for him and said he was
a great guy and he just couldn'tbelieve what a small world it
really is that here this is theman I'm giving my kidney to.
That Ryan knew him.
Speaker 1 (27:45):
How does that make you feel Rich?
Speaker 2 (27:46):
I didn't work with Ryan that long and he did a good
job for us.
He was a good employee, but itwasn't somebody that was
particularly close to.
He worked at the company forquite a while but in in terms of
our direct uh connection, itwasn't that strong, and so I was
(28:06):
really overwhelmed, you know,in terms of all all of the
response that I'd gotten fromfrom previous coworkers was
great, and so to see anotherstrong connection was really
cool.
Honestly, it's just anotherlittle bit of evidence of how
incredibly fortunate I've beenthrough this whole process that
something like that happened,and I think the strongest part
of that honestly was I think ithelped Callie to validate that
(28:31):
she was doing it for somebodythat hopefully she felt was
worthy of it, and so Iappreciate that aspect of it a
lot.
Speaker 1 (28:40):
I will say at that point I know Callie was going to
do it, no matter what.
Speaker 3 (28:43):
I was going to do it, rich, even if he said I was a
jerk, I would have been likewell, get my kidney Ryan, it was
happening.
Speaker 2 (28:51):
I'm grateful for that .
Speaker 3 (28:52):
I will say, like all these little things along the
way, look at all the signs, lookat everything that has led into
this.
It made it so much easier to goand go through and donate.
It just eased my mind knowingall those little tiny
connections that happened alongthe way.
Speaker 1 (29:12):
So it did help.
That's the best part about whatI get to do is all the
miraculous little things thathappen like that, and it's rare
that I see two people cometogether where I don't see all
those those little tiny thingsthat add up into a miracle, and
it's what life's about.
Speaker 3 (29:26):
That's why I say I think this whole thing is bigger
than me.
It's bigger than rich.
Not everyone's going to donatea kidney, right, but everyone
can do a little something, justlike you can share your KitKat,
you can talk about it, you canspread information.
I mean, you can do littlethings.
Not everyone has to be a donor,but you can talk about it and
you can educate each other aboutit.
Speaker 2 (29:48):
Through my whole outreach process, going back to
thinking about whether you'reworthy or not, or you know the
difficulty of asking someone todonate I made it a point through
everything that I did not toever ask anyone to donate a
kidney.
I didn't feel comfortablereaching out to someone and say,
would you consider donatingyour kidney to me?
But I felt very comfortableasking someone to help me spread
(30:13):
the word about my situation.
And maybe, Lori, that's part ofthe answer to the question you
asked about someone being frozenand not being able to move
forward is don't think aboutasking people to donate their
kidney.
Ask about helping spread theword of your situation.
That's an easy ask.
Helping spread the word is assimple as a click on a computer.
(30:36):
That's something that anyonecould do.
Speaker 1 (30:50):
Helping spread the word is as simple as a click on
a computer.
That's something that anyonecould do.
Just tell people to tell yourstory, that people hear it and
it slides through their brainand goes straight to their heart
, and I think that that'sexactly what Callie described.
Yeah, it was.
Speaker 2 (31:07):
Good thing I didn't ask for her heart.
Speaker 3 (31:11):
Rich.
I need that.
Speaker 1 (31:15):
Is there anything else you guys want to say to
each other or to our audiencetoday?
Speaker 3 (31:20):
No, just that.
I'm going to get a shirt thatsays what'd you say?
Johnny on the spot.
I've not that, just aged you, Ihave not heard.
I'm going to get a shirt thatsays Callie, AKA Johnny on the
spot.
Speaker 2 (31:34):
Here's your.
Speaker 1 (31:35):
Christmas present.
Rich, there you go.
Speaker 2 (31:37):
Yeah, I don't know where these sayings come from or
where I pull that out of, butit's such a great match and we
have such a good relationship.
Post this how do we copy andpaste?
Speaker 3 (31:48):
Right.
Speaker 2 (31:49):
And I think that's what gift works is doing is sort
of you know, I'm glad we weresort of the pilot and hopefully
they can copy and pastethousands of times what what
we've been able to accomplishtogether and uh, and, and that
would be just a phenomenaloutcome from being part of the
pilot.
Speaker 3 (32:08):
I think from a donor standpoint.
In my opinion, my reason fordoing it was something deep
within me I don't have anyexpectations Was something deep
within me.
I don't have any expectations,I don't know.
I feel like when you givesomething away, like a kidney,
you're not giving it with theexpectation that I get to now
(32:29):
know what's happening with thatkidney every step of the way.
It's yours, it's no longer mine.
I don't have any pull on thatanymore whatsoever.
So you don't owe me anything,rich.
Speaker 2 (32:38):
I have to do right by it.
I've received this tremendousgift and it would be
irresponsible of me to not lookat it that way and not treat it
that way.
Speaker 3 (32:49):
I mean, my, my goal is yeah, hopefully you'll live a
very, very long beautiful life,but I also don't want that to
be a long beautiful life whereyou're not living and enjoying
life Like that's supposed towant that to be a long beautiful
life where you're not livingand enjoying life Like that's
supposed to be the whole pointright.
Speaker 1 (33:01):
Well, for me it's been incredible to see you both
do just that, not just live yourlives fully, but to watch both
of you then immediately jumpinto advocacy work in the
transplant space.
You guys are just truly aninspiration and you illustrate
how you make the magic happen indonors and recipients coming
together.
Thanks for piloting with us.
Speaker 2 (33:22):
It's been awesome.
Thank you so much.
Speaker 1 (33:24):
Thanks, bye you guys.
Bye guys To our listeners.
Thank you so much for tuninginto Donor Diaries.
If you've enjoyed this episode,if you enjoy this podcast,
please be sure to follow thepodcast wherever you're
listening.
It's free and you'llautomatically get new episodes
as soon as they're released.
And if you haven't already,leaving a quick rating and
(33:46):
review helps more peoplediscover these important stories
.
So if you are a regularlistener and haven't done that
yet, we'd be so grateful if youtook a moment to do it.
It really makes a difference.
Want to keep the conversationgoing?
Find the Donor Diaries podcaston Facebook and drop us a
comment.
We'd love to hear from you Tolearn more about GiftWorks, the
sponsor of season three of DonorDiaries.
(34:08):
Visit yourgiftworkscom andcheck out our show notes for
more information.
Here's to putting more goodinto the world.
One story, one act of kindness,one life at a time, until next
(34:42):
time.
This is Lori Lee signing off.
I just want to feel thesunshine.
I share this life with you.
I share this life with you.
Bye.
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