June 3, 2025 • 30 mins
A spiritual calling, a kidney voucher, and two pastors reconnecting after decades apart—this is no ordinary transplant story.
When Jim Pearl was diagnosed with Fabry's disease in 2004, he had no idea his journey would lead him back to Jeff Barker, a seminary friend from the '90s. After five years on dialysis, Jim clung to his mantra: "In the waiting, God is working." Meanwhile, Jeff saw Jim's Facebook post and felt a spiritual nudge to step forward, despite knowing little about kidney donation.
Though not a direct match, Jeff became a voucher donor donating at NYU Langone. His kidney went to someone in the NKR system, and Jim received a kidney voucher due to Jeff’s donation. Just three months later, Jim received his transplant at University of Utah Health.
For both pastors, the experience was deeply spiritual. Jim named his kidney "Gigi" (God’s Gift). Jeff sees the donation as part of Christian incarnational theology—"We often think about giving money, but we can give our very selves."
GiftWorks supported them throughout the journey, helping Jim share his story widely and guiding Jeff through the donation process. Their experience shows how organ donation not only saves lives, but also renews connections, deepens faith, and transforms both donor and recipient.
Jim’s advice for recipients: "Share your story as broadly as possible. It only takes one set of eyes." Jeff encourages potential donors to remember: "Your first yes is not your final yes. Each step requires thought, and each decision matters."
Learn more at yourgiftworks.com and consider how making yourself available to others can be a part of something greater.
Links:
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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.
(00:24):
Hello and welcome to DonorDiaries, a podcast sharing the
inspiring stories of ordinarypeople making a difference
through living donation.
Hello and welcome to DonorDiaries, a podcast sharing the
inspiring stories of ordinarypeople making a difference
(00:45):
through living donation.
I'm your co-host, lori Lee, andtoday I'm thrilled to have my
dear friend and co-founder ofGiftWorks, amber Kahn, joining
me as a co-host, which is new toboth of us.
At GiftWorks, we partner withtransplant professionals to help
their patients find livingdonors, while ensuring the
donors have a safe, positive andwell-informed experience as
(01:10):
they explore living donation.
It's all about education,support and advocacy.
Today's episode is extraspecial because we're sharing
both sides of a story Jim Pearl,the recipient, and Jeff Barker,
his donor.
They're not only connectedthrough this life-changing gift
and gift works, but they're alsopastors and close friends with
(01:30):
a really beautiful story.
Let's dive in and hear theirincredible story about faith,
courage and the power of humanconnection.
Welcome everybody.
Speaker 2 (01:41):
Jim, can you tell us a little bit more about your
health journey and also how yougot to the point of needing a
kidney transplant?
Speaker 3 (01:47):
Thank you, amber.
I was diagnosed with Fabry'sdisease in 2004.
Like most people, I had no ideawhat it was, and so it started
a journey of discovering whatthat was, what that meant and
how my life would change becauseof it.
(02:08):
And one thing that Fab Reyesdisease does is it affects the
kidneys.
So over the course of the years, we slowly watched my kidney
function decline and decline,until it was December of 2019
(02:30):
that my doctor says I don'tthink we have any other choice
but to put you on dialysis.
And so I started dialysis inMay of 2020, right as COVID was
all ramping up and everything.
And so dealing with new dialysis, dealing with COVID and all the
(02:53):
implications of that, it led toa lot of drastic changes.
At that time, I went ondisability, so I was no longer
working.
After the first six months orso, I started to look for a
kidney donor, because that'swhat I was told to do by doctors
(03:14):
and that sort of stuff, and soI was on dialysis just three
months short of five years andgoing through that really five
times a week.
So but that's kind of how I gotto where I needed a kidney.
Speaker 1 (03:29):
And Jeff.
Were you aware that Jim was ondialysis from 2020 onward?
Speaker 4 (03:35):
I don't know exactly when I became aware of it.
I don't know what was posted onFacebook, right?
I can't remember.
Even I don't have a timeline inmind as to when I became aware
of that particular situation.
Speaker 1 (03:50):
Well, what made you step forward, jeff, to become a
donor, and what was it likeearly on in the process for you?
Speaker 4 (03:56):
A little over a year ago, jim posted something on
Facebook about needing a kidneytransplant and I saw it and this
is the way I describe it.
I mean, I can describe it noother way other than I felt what
I believed to be God's Spiritprompting me to make myself
(04:19):
available.
I'll be honest, I had, at thatpoint, no idea what the process
was, I had no idea what it wouldentail, but I just felt that I
should make myself availableOver the weeks from there, once
you register, you get contactedand all of these things then
begin to happen.
(04:40):
Questions begin to be answered.
I begin to learn new thingsabout all of that, and so,
really, if I ask what it waslike for me early in the process
, it was a journey of discoverybefore I even got to diagnostic
work and everything else thatwas going to happen after all of
that.
Speaker 1 (05:00):
And can you guys maybe tell us a little bit about
your relationship?
Because, jeff, if I remember,when you and I spoke for the
first time and I asked how youknew Jim, I think you said well,
we used to be close and nowwe're like the people who send
Christmas cards to each other.
Speaker 4 (05:17):
Is that what you?
said yes, that's exactly how Isaid it, laura, right, because
we were in seminary together,right, that's exactly how I said
it.
Right, because we were inseminary together, right.
So you know, when you gothrough a three or four year
academic formation program, yourlives deepen right In that
period of time and in that space.
And we were part of a groupthat met, I think Jim, we were
(05:37):
meeting every other week fornearly four years, right.
We had beyond us about fiveother couples beyond us husband,
spouses and whatnot, and justhad a means of accountability
and fellowship and we journeyedtogether through all of this and
then at graduation we all kindof went different directions
across the country.
Jim was back in, I think, inMichigan for a while, then Idaho
(06:01):
and other places, and I've beenout in the Northeast New York
City now, and so you know, justdistance breeds geographical
distance kind of breedsrelational distance, and so
that's, we're still connected,we still share those years
together and this is just ameans of reconnecting in that
way.
Speaker 1 (06:20):
So was that like the 90s that you guys were in?
Yeah, be careful.
Speaker 4 (06:23):
So was that like the 90s that you guys were in?
Speaker 3 (06:25):
Yeah be careful Way back in the 90s.
Speaker 4 (06:28):
Yeah, the mid-90s, mid to late 90s.
Speaker 2 (06:31):
We know you're both pastors and I find it
interesting.
Sometimes Lori and I will touchbase at some point in the
journey.
I'm working with the recipient.
In this case, it was Jim.
She was working with Jeff asthe donor and she told me at one
point he's the pastor, thefront runner is a pastor, and I
let her know.
Well, jim is too.
Isn't this interesting?
(06:52):
And now, learning that you hadspent time in the seminary
together, I would just like toask both of you did your faith
shape your perspective on givingor receiving this gift?
Speaker 3 (07:03):
I think my faith has shaped this whole process.
I pastored for eight years.
20 years ago, some thingshappened at the same time.
We found out about Fabraise andAngie and I moved back to Idaho
at that time and pastoringwasn't in the cards at that time
(07:25):
.
If you will, we focused a lotin those days of figuring out
what was going on, what weneeded to do to treat this.
The further along in thisprocess I got, and as I got to
dialysis, I knew that a kidneywould come.
Didn't know how, didn't knowwhen, but I knew that a kidney
(07:46):
would come.
Didn't know how, didn't knowwhen, but I knew that a kidney
would come.
And God said this is my gift toyou.
I just knew, whatever time Ihad left after transplant, that
I needed to go back and plant,that I needed to go back and
(08:11):
pastor again and help whoever Ican help with the journey that
I've been on in the hospital.
Angie said other people nametheir kidneys.
What are you going to nameyours?
And without much hesitation Isaid Gigi.
She said Gigi, what's that?
And I said, well, it's God'sgift.
And so we had referred to thenew kidney as Gigi throughout
(08:32):
the process, just knowing thathe provided in his timing and in
his will.
So that's kind of how my faithled me through this process
getting to here.
Speaker 2 (08:50):
So I remember right before well, maybe it wasn't
right before, but you were goingto receive the news of the
living donation and you hadgiven a sermon at your church.
And then one thing you keptposting over and over again and
their sermon was based on thisand excuse me if I say this
wrong in the waiting, god isworking.
(09:10):
And that just seemed to be thetheme.
Can?
Speaker 3 (09:14):
you tell me what that means to you I preached on the
whole four chapters of habakkukbecause the is a lot of
territory hell.
Yeah, I kind of narrowed it downa little bit as I went, but and
it's a story of the children ofIsrael were taken into a
captivity once again and theykept crying out we don't see you
(09:38):
, god, we don't see you.
And yet it was throughout thecourse.
What do you do when you'rewaiting on God?
And God always has a plan.
We just don't necessarily seeit sometimes.
Even if we are waiting, we canstill actively participate in
(09:59):
God's plan.
God does so much stuff that wedon't know about to bring His
plan together, and so I guessI've likened it to the iceberg,
where you see a little bit onthe top, but underneath God is
doing so much more than we caneven see.
(10:20):
It was through that wholeprocess that I kind of adopted
the motto that in the waitingGod is working.
Waiting doesn't necessarilyhave to be passive.
Speaker 4 (10:33):
You know, as I stepped into this process and it
took me a while to kind offrame what was occurring for me,
right, and I think the way thatI refer to it now is, this
journey has been a lesson onavailability that as we make
ourselves available, there'smore going on than what we may
imagine it to be.
The initial yes for me was torespond to what I felt was a
(10:57):
prompting of God's Spirit to saymake yourself available.
So that was kind of the firstyes.
Right, and what I reallyappreciated about the process is
it moved me into subsequentrequired yeses.
It wasn't just yes and I'm donenow.
Right, it's well, then it's thenext level Are you willing to
move to the next step?
And then each of those required, a subsequent yes.
(11:19):
And I tell the story this waythat even on the day of the
operation, right the day I'mscheduled to make my donation,
I'm at the hospital and thereare still a series of yeses I
have to say that day, right Upuntil I'm standing at the door
to enter the operating room.
And it's one more final yes.
But I believe that God is atwork and God is inviting me to
(11:42):
make myself available.
Right, and as I made myselfavailable then I was
participating in the good thatGod was doing in the world and,
in this particular case, in myfriendship, as I say yes to
embracing the good in the world,that God is using that good for
greater good beyond all of that, greater good beyond all of
(12:05):
that.
So that's kind of one of the Ithink, the lessons for me in all
of this is now this, a lessonon availability, but just the
ongoing need for me each day toparticipate in the good that is
right in front of me.
That that's what the invitationis, as I think about my faith
and what I think about in termsof reflecting what I believe to
be God's desire for all ofcreation.
Speaker 1 (12:25):
I like that, the visual of having the ability to
say yes every day.
Speaker 4 (12:34):
Yeah, I think what I appreciated about all of this
process is that I was alwaystold there was the opportunity
to back away if I didn't feel.
But my faith, I think, justkept moving me to a deeper and
deeper and a deeper.
Yes to this process.
Speaker 1 (12:46):
So, Jeff, you and I have spoken a little bit offline
about Christianity and livingdonation.
Do you have any comments aboutthe Christian view of organ
donation, living organ donation.
Speaker 4 (12:58):
Really in the Christian faith we take
seriously what we call theincarnation of God in Jesus, as
I've really begun to take thatseriously.
There's the enfleshment, theembodiment that our bodies here
matter, that life here matters,but it has to do with helping
those who are in need, helpingthose who don't have resources
right.
There's this way of living andbeing in the world If bodies
(13:20):
matter, and the discovery, Ithink, going back to a prior
question, what did I learn?
I learned we only need onekidney to function right.
It's one of these things that Iprobably learned, that in fifth
grade or sixth grade, but Idon't remember those kinds of
details and then I began toreally think about, well, if
this is a way that someoneelse's body can matter really,
(13:44):
the opportunity for me topotentially participate in
extending life and Jim's abilityto serve and love as an
extension of all of this reallyinformed the way that I think
about all of this and so I thinkfor me helping us as a people
(14:04):
understand that really what wehave is to be shared with others
.
We often think about money or wethink about other kinds of
things, but we can share ourvery selves with others and I
think that's for me, theconnection with the life and
teachings of Jesus is that heshared his very life with us,
and that kind of moves me inthis direction.
(14:25):
But for me it is an embodiedfaith and if we're able to do
that and share that with others,then I think we're reflecting
ever more closely the life andteachings of Jesus and what he
was about in this world.
Speaker 1 (14:38):
And I like what you said about.
By donating, you're extendingJim's ability to spread that
same type of love and giving.
That's a nice way to look at it.
Speaker 2 (14:45):
same type of love and giving that's a nice way to
look at it, jim, you had theopportunity to participate in
the GiftWorks program as arecipient.
Speaker 3 (15:00):
Can you speak more to the type of support and also
resources that you received as aparticipant in our program.
Yes, I had tried on my own.
Once a year, on the anniversaryof when I started dialysis, I
would put something myselfonline just to say, hey, I'm
still looking, and that sort ofstuff.
But it was Amber and her teamwho gave me the resources and,
(15:24):
quite frankly, the confidencethat it was okay to share your
story more often, and so in thebeginning, we would get a script
that we were able to change andpost it online to whatever
social media platforms we used.
(15:45):
I did one week and then Angiedid the alternate week posting
those things, and throughout thesix months of the program, it
was amazing how much contact Ihad from somebody on the team
giving have you tried this orhave you done this or have you
(16:07):
looked here in order to get mymessage out, my story out to as
many people as I could.
Six months put us.
At the end of september Ihonestly became fearful because
I knew it was a six-monthprogram and yet, even after that
(16:27):
months, we're not going toleave you out there.
We're still going to help youin different ways.
I think it was November at somepoint that I found out that
somebody had accepted to be adonor.
So through that process, anyquestions I had were answered
(16:49):
immediately.
Any questions I had wereanswered immediately, and even I
mean Angie herself.
I mean she's like, well, whatabout this, what about this?
And so we would text or emailtogether and so you helped not
only myself but Angie, toalleviate a lot of those
questions that we were havingthrough this process, lot of
(17:12):
those questions that we werehaving through this process In
the summer.
There were a couple times that Igot discouraged and thinking,
oh, this isn't going to work,this isn't going to work.
And Amber was always there tosay just keep working the
program, something will happen.
The support was just amazing onwalking us through the process,
the journey, journeyingtogether through that whole
(17:34):
process.
Every once in a while I'd findout that, okay, there's another
person who's reached out forinformation, kind of like from
before.
I was waiting this whole timebut a whole lot was happening
more than I knew.
Whole lot was happening morethan I knew, and so I just had
(17:56):
to trust the process and trustthat things were happening that
I couldn't know at that timebecause of confidentiality and
all that I couldn't be told, andso I just had to trust that.
Okay, there are thingshappening, it's okay, it's all
in God's hands.
Speaker 2 (18:10):
It's definitely a collaborative journey.
Speaker 3 (18:12):
Very much.
Speaker 2 (18:19):
And I would just like to say I think that a lot of
recipients go through theprogram and they always hit a
point where they have a choicebecause maybe they're not
getting the results they wantimmediately and, like you said,
there's so much happening behindthe scenes that Lori and I
can't disclose, but there'salways this point.
I think that recipients reachwhere they have a choice.
They can give up or they canhave faith and keep going and
pushing through and trusting theprogram and working together
(18:42):
with us, and you did that and Ithink that's remarkable.
Thank you.
Speaker 1 (18:50):
That's remarkable, Thank you.
I remember seeing a few of yourFacebook posts, Jim, where you
were frustrated because youdidn't know who your donor was
and you had gratitude that youhad a deep desire to give to
somebody but you didn't know whoto give it to and Jeff, in the
meantime, had chosen to stayquiet about what he was doing
and to see the journey throughkind of independently of
(19:12):
communication with you and yourwife.
Do you want to talk a little bitabout that and your decision to
do this independently and makeyourself known at a later date.
Speaker 4 (19:24):
I mean because there were so many variables involved
in all of this right.
There was one side, and I knowgeography has kind of created
distance between us in a all ofthis right.
There was one side, and I knowgeography has kind of created
distance between us in a lot ofways.
But then I didn't want tocreate an awkwardness in our
ongoing relationship if I got toa point where I wasn't able to
or I chose not to or whatever.
(19:45):
And then the feeling of lettingsomeone you care deeply about
down right.
And then the feeling of lettingsomeone you care deeply about
down right.
In this process the only personthat really knew was my wife, in
terms of my own socialenvironment and friends and
family and all of that.
So in that way, I guess, lori,our conversations, you were kind
of guiding me through this, youwere the one that was helping
(20:06):
me walk through all of thisBecause, again, there was so
much that was unknown to me Ididn't want to let anybody down
and so that was, I think, partof my framework in thinking
about it's going to get throughall of the diagnostic testing,
make sure that I'm eligible inthese kinds of ways.
And then there was certainlythe point at which then we
(20:27):
weren't compatible in the waysthat they wanted us to be
compatible, and then I was.
I will say I was disappointed.
At that time I'm like, oh, andthat's, I think, within the
conversation about paireddonation comes into play in
learning how valuable that canbe and it opened up some new
horizons for me to think about,even in that kind of way.
Speaker 1 (20:49):
I'm glad you brought that up.
So you were not a match to Jimand you ultimately ended up
being a voucher donor throughthe National Kidney Registry.
Do you want to talk a littlebit about that and what that
meant in terms of your donationand Jim receiving a kidney?
Speaker 4 (21:06):
Once the discovery was made that I wasn't going to
be a direct match to Jim, thevoucher program through the
kidney registry, which opened upa new series of questions.
I'm like, okay, so that wasjust a whole new learning curve,
my kidney.
(21:26):
But it then provided theopportunity for Jim to be
prioritized in particular waysand receive a match for him.
That was indirectly connectedto me, as I made my donation to
facilitate all of that.
Speaker 1 (21:40):
And Jim, how long after Jeff donated did you
ultimately end up getting?
Speaker 3 (21:44):
your match.
It took a week to a week and ahalf, after Jeff donated, for
them to activate it, almostthree months to the day between
the time it became active andthe time I got my kidney Really
quick.
Speaker 1 (22:04):
So kind of just to recap how that voucher works.
Jeff wanted to donate a kidneyto his friend Jim, but they
weren't a match.
So instead Jeff chose to donatethrough the National Kidney
Registry, the NKR, as a voucherdonor, and that means Jeff's
kidney went to a patient in theNKR system who was a good match.
In an exchange, jeff named upto five people, one of them who
(22:28):
could ultimately redeem thevoucher for a future kidney
transplant, and everyoneinvolved understood that Jim
would be the one to redeem it.
They they allow you to namefive people, though, because,
you know, god forbid Jim getshit by a bus.
Jeff still has those other fourvouchers and his kidney
donation wasn't in vain.
(22:48):
So Jeff donated at NYU Langoneand once the surgery was
complete Jim's voucher wasactivated, and at that point the
NKR began searching for aliving donor who was a good
match for Jim.
Jim, a patient at University ofUtah Health, received his
transplant just a few monthslater.
So there is a wait time betweenthe voucher donor surgery and
(23:10):
the recipient's transplant, butthe process is closely
coordinated, so it's not left upto chance, and most voucher
recipients follow a similar pathto Jim and Jeff's story, and
that's thanks to NKR's largepool of donors.
Outcomes are strong and waittimes are usually pretty
comparable to this, which isgreat for the patient and the
(23:31):
donor.
Now we'd love to turn the micover to both of you guys.
So, jeff, what's one questionyou've always wanted to ask Jim
regarding this experience?
Speaker 4 (23:45):
How did you remain hopeful in the midst of all of
the uncertainty?
And you know, relying on somany other things to happen to
make this available to you.
How did you remain hopeful?
Speaker 3 (23:58):
I had a very great support system and in those
times that I did get frustratedthat they were there and they
told me to keep going, keepworking, something will happen
and, ultimately, trusting inGod's will, knowing as much as I
(24:21):
could that God's not done withme.
There's still more to be done.
There's still more to be done,and whether that's with a new
kidney or without a new kidney,that there's still things I need
(24:44):
to be doing moving into thefuture.
And so I was excited when thekidney actually came along
because, like, okay, now we cando things a little less
encumbered than before.
But I just always had thatfaith that God was going to work
it out.
I didn't know how, like yousaid, lots of stuff going on
that I don't know about, butit's going to work out and
(25:06):
that's what I just kept tellingmyself and relying on.
Speaker 2 (25:10):
So, Tim, what's something you've always wanted
to ask, jeff?
Speaker 3 (25:15):
As I went through this, a lot of people would
mention that they filled out apaperwork or something, and a
lot of times it was, but myspouse really didn't want me to
do it, and so I'm just curioushow Stacyacey reacted to all of
(25:40):
this and your kids.
Were they all supportive, orwere they?
I can't imagine there not beinghesitance on their behalf.
Speaker 4 (25:51):
Jim, that's a great question.
I'll answer it this way.
Her initial response was thatseems like something you would
do.
I mean, over the course of ourI mean I've done a lot of
different marathons, triathlons,Ironman.
All of this and it was therunning joke was always just
(26:12):
keep the life insurance up todate, Just keep the life
insurance current right.
So Stacey was supportive,helpful, and then certainly our
daughters.
I wasn't involving them until Iwas doing the voucher form
Because I need some informationfrom them on the voucher form
and they're like Dad, why areyou asking me.
(26:33):
Overall they were, they weresupportive.
I mean, there was the day ofthe surgery, all of the
hesitations that go with all ofthat, that I think were were
normal and whatnot.
But yeah, that was kind of how,how we navigated that space
yeah nice, those were goodquestions really good questions.
Speaker 2 (26:52):
So, jim, now that you are officially post-transplant
and in recovery, looking back,what advice would you want to
give to other kidney recipientswho are waiting for their
transplant?
Speaker 3 (27:05):
Through GiftWorks and everything.
There's a whole lot ofresources available to make you
successful.
But I think one thing that youcan never forget is that you are
your own best advocate.
But don't be afraid to shareyour story, Wherever it's, at
whatever venue, whatever socialmedia, whatever.
(27:28):
Share your story as broadly aspossible, Because it only takes
that one set of eyes to see itand that person say I need to
check that out.
And for me, I was lucky that itwas a friend from a long time
ago.
But there were people that Ididn't even know that had
(27:54):
emailed back and said Isubmitted the information and
this was somebody who shared mypost, who somebody else shared
their post, who somebody elseshared their post, and somebody,
not even in my realm ofinfluence or knowledge, stepped
forward and said I want to checkinto this.
(28:14):
So as much as you can tell yourstory, all the better, and if
you can get other people to tellyour story in a different
perspective, all the better.
Speaker 1 (28:25):
And, jeff, what would you say to someone thinking
about becoming a donor?
Speaker 4 (28:29):
I would say your initial yes is not your final
yes and that there's just aseries of yeses that you have to
keep going through that I thinkmoving forward or to exit as
necessary in that kind of way,the experience was personally
transformative.
(28:49):
I think I am a different personhaving gone through this
process.
Speaker 1 (28:55):
Well, jeff and Jim, thank you both so much for
sharing your hearts and yourstory.
You've given us something allto think about and, I think,
something to be hopeful for.
So thanks for being on DonorDiaries today.
Speaker 3 (29:07):
Wonderful.
Thank you so much.
Speaker 2 (29:09):
If you're listening and inspired to learn more about
living donation or want tosupport stories like this, visit
yourgiftworkscom for moreinformation.
Speaker 1 (29:17):
And remember every act of kindness creates ripples.
Thanks for listening and keepspreading those positive vibes.
I just want to feel thesunshine.
Speaker 3 (29:38):
I just want to feel the sunshine.
I share this life with you.
I share this life with you.
I share this life with you,thank you.
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.
(00:24):
Hello and welcome to DonorDiaries, a podcast sharing the
inspiring stories of ordinarypeople making a difference
through living donation.
Hello and welcome to DonorDiaries, a podcast sharing the
inspiring stories of ordinarypeople making a difference
(00:45):
through living donation.
I'm your co-host, lori Lee, andtoday I'm thrilled to have my
dear friend and co-founder ofGiftWorks, amber Kahn, joining
me as a co-host, which is new toboth of us.
At GiftWorks, we partner withtransplant professionals to help
their patients find livingdonors, while ensuring the
donors have a safe, positive andwell-informed experience as
(01:10):
they explore living donation.
It's all about education,support and advocacy.
Today's episode is extraspecial because we're sharing
both sides of a story Jim Pearl,the recipient, and Jeff Barker,
his donor.
They're not only connectedthrough this life-changing gift
and gift works, but they're alsopastors and close friends with
(01:30):
a really beautiful story.
Let's dive in and hear theirincredible story about faith,
courage and the power of humanconnection.
Welcome everybody.
Speaker 2 (01:41):
Jim, can you tell us a little bit more about your
health journey and also how yougot to the point of needing a
kidney transplant?
Speaker 3 (01:47):
Thank you, amber.
I was diagnosed with Fabry'sdisease in 2004.
Like most people, I had no ideawhat it was, and so it started
a journey of discovering whatthat was, what that meant and
how my life would change becauseof it.
(02:08):
And one thing that Fab Reyesdisease does is it affects the
kidneys.
So over the course of the years, we slowly watched my kidney
function decline and decline,until it was December of 2019
(02:30):
that my doctor says I don'tthink we have any other choice
but to put you on dialysis.
And so I started dialysis inMay of 2020, right as COVID was
all ramping up and everything.
And so dealing with new dialysis, dealing with COVID and all the
(02:53):
implications of that, it led toa lot of drastic changes.
At that time, I went ondisability, so I was no longer
working.
After the first six months orso, I started to look for a
kidney donor, because that'swhat I was told to do by doctors
(03:14):
and that sort of stuff, and soI was on dialysis just three
months short of five years andgoing through that really five
times a week.
So but that's kind of how I gotto where I needed a kidney.
Speaker 1 (03:29):
And Jeff.
Were you aware that Jim was ondialysis from 2020 onward?
Speaker 4 (03:35):
I don't know exactly when I became aware of it.
I don't know what was posted onFacebook, right?
I can't remember.
Even I don't have a timeline inmind as to when I became aware
of that particular situation.
Speaker 1 (03:50):
Well, what made you step forward, jeff, to become a
donor, and what was it likeearly on in the process for you?
Speaker 4 (03:56):
A little over a year ago, jim posted something on
Facebook about needing a kidneytransplant and I saw it and this
is the way I describe it.
I mean, I can describe it noother way other than I felt what
I believed to be God's Spiritprompting me to make myself
(04:19):
available.
I'll be honest, I had, at thatpoint, no idea what the process
was, I had no idea what it wouldentail, but I just felt that I
should make myself availableOver the weeks from there, once
you register, you get contactedand all of these things then
begin to happen.
(04:40):
Questions begin to be answered.
I begin to learn new thingsabout all of that, and so,
really, if I ask what it waslike for me early in the process
, it was a journey of discoverybefore I even got to diagnostic
work and everything else thatwas going to happen after all of
that.
Speaker 1 (05:00):
And can you guys maybe tell us a little bit about
your relationship?
Because, jeff, if I remember,when you and I spoke for the
first time and I asked how youknew Jim, I think you said well,
we used to be close and nowwe're like the people who send
Christmas cards to each other.
Speaker 4 (05:17):
Is that what you?
said yes, that's exactly how Isaid it, laura, right, because
we were in seminary together,right, that's exactly how I said
it.
Right, because we were inseminary together, right.
So you know, when you gothrough a three or four year
academic formation program, yourlives deepen right In that
period of time and in that space.
And we were part of a groupthat met, I think Jim, we were
(05:37):
meeting every other week fornearly four years, right.
We had beyond us about fiveother couples beyond us husband,
spouses and whatnot, and justhad a means of accountability
and fellowship and we journeyedtogether through all of this and
then at graduation we all kindof went different directions
across the country.
Jim was back in, I think, inMichigan for a while, then Idaho
(06:01):
and other places, and I've beenout in the Northeast New York
City now, and so you know, justdistance breeds geographical
distance kind of breedsrelational distance, and so
that's, we're still connected,we still share those years
together and this is just ameans of reconnecting in that
way.
Speaker 1 (06:20):
So was that like the 90s that you guys were in?
Yeah, be careful.
Speaker 4 (06:23):
So was that like the 90s that you guys were in?
Speaker 3 (06:25):
Yeah be careful Way back in the 90s.
Speaker 4 (06:28):
Yeah, the mid-90s, mid to late 90s.
Speaker 2 (06:31):
We know you're both pastors and I find it
interesting.
Sometimes Lori and I will touchbase at some point in the
journey.
I'm working with the recipient.
In this case, it was Jim.
She was working with Jeff asthe donor and she told me at one
point he's the pastor, thefront runner is a pastor, and I
let her know.
Well, jim is too.
Isn't this interesting?
(06:52):
And now, learning that you hadspent time in the seminary
together, I would just like toask both of you did your faith
shape your perspective on givingor receiving this gift?
Speaker 3 (07:03):
I think my faith has shaped this whole process.
I pastored for eight years.
20 years ago, some thingshappened at the same time.
We found out about Fabraise andAngie and I moved back to Idaho
at that time and pastoringwasn't in the cards at that time
(07:25):
.
If you will, we focused a lotin those days of figuring out
what was going on, what weneeded to do to treat this.
The further along in thisprocess I got, and as I got to
dialysis, I knew that a kidneywould come.
Didn't know how, didn't knowwhen, but I knew that a kidney
(07:46):
would come.
Didn't know how, didn't knowwhen, but I knew that a kidney
would come.
And God said this is my gift toyou.
I just knew, whatever time Ihad left after transplant, that
I needed to go back and plant,that I needed to go back and
(08:11):
pastor again and help whoever Ican help with the journey that
I've been on in the hospital.
Angie said other people nametheir kidneys.
What are you going to nameyours?
And without much hesitation Isaid Gigi.
She said Gigi, what's that?
And I said, well, it's God'sgift.
And so we had referred to thenew kidney as Gigi throughout
(08:32):
the process, just knowing thathe provided in his timing and in
his will.
So that's kind of how my faithled me through this process
getting to here.
Speaker 2 (08:50):
So I remember right before well, maybe it wasn't
right before, but you were goingto receive the news of the
living donation and you hadgiven a sermon at your church.
And then one thing you keptposting over and over again and
their sermon was based on thisand excuse me if I say this
wrong in the waiting, god isworking.
(09:10):
And that just seemed to be thetheme.
Can?
Speaker 3 (09:14):
you tell me what that means to you I preached on the
whole four chapters of habakkukbecause the is a lot of
territory hell.
Yeah, I kind of narrowed it downa little bit as I went, but and
it's a story of the children ofIsrael were taken into a
captivity once again and theykept crying out we don't see you
(09:38):
, god, we don't see you.
And yet it was throughout thecourse.
What do you do when you'rewaiting on God?
And God always has a plan.
We just don't necessarily seeit sometimes.
Even if we are waiting, we canstill actively participate in
(09:59):
God's plan.
God does so much stuff that wedon't know about to bring His
plan together, and so I guessI've likened it to the iceberg,
where you see a little bit onthe top, but underneath God is
doing so much more than we caneven see.
(10:20):
It was through that wholeprocess that I kind of adopted
the motto that in the waitingGod is working.
Waiting doesn't necessarilyhave to be passive.
Speaker 4 (10:33):
You know, as I stepped into this process and it
took me a while to kind offrame what was occurring for me,
right, and I think the way thatI refer to it now is, this
journey has been a lesson onavailability that as we make
ourselves available, there'smore going on than what we may
imagine it to be.
The initial yes for me was torespond to what I felt was a
(10:57):
prompting of God's Spirit to saymake yourself available.
So that was kind of the firstyes.
Right, and what I reallyappreciated about the process is
it moved me into subsequentrequired yeses.
It wasn't just yes and I'm donenow.
Right, it's well, then it's thenext level Are you willing to
move to the next step?
And then each of those required, a subsequent yes.
(11:19):
And I tell the story this waythat even on the day of the
operation, right the day I'mscheduled to make my donation,
I'm at the hospital and thereare still a series of yeses I
have to say that day, right Upuntil I'm standing at the door
to enter the operating room.
And it's one more final yes.
But I believe that God is atwork and God is inviting me to
(11:42):
make myself available.
Right, and as I made myselfavailable then I was
participating in the good thatGod was doing in the world and,
in this particular case, in myfriendship, as I say yes to
embracing the good in the world,that God is using that good for
greater good beyond all of that, greater good beyond all of
(12:05):
that.
So that's kind of one of the Ithink, the lessons for me in all
of this is now this, a lessonon availability, but just the
ongoing need for me each day toparticipate in the good that is
right in front of me.
That that's what the invitationis, as I think about my faith
and what I think about in termsof reflecting what I believe to
be God's desire for all ofcreation.
Speaker 1 (12:25):
I like that, the visual of having the ability to
say yes every day.
Speaker 4 (12:34):
Yeah, I think what I appreciated about all of this
process is that I was alwaystold there was the opportunity
to back away if I didn't feel.
But my faith, I think, justkept moving me to a deeper and
deeper and a deeper.
Yes to this process.
Speaker 1 (12:46):
So, Jeff, you and I have spoken a little bit offline
about Christianity and livingdonation.
Do you have any comments aboutthe Christian view of organ
donation, living organ donation.
Speaker 4 (12:58):
Really in the Christian faith we take
seriously what we call theincarnation of God in Jesus, as
I've really begun to take thatseriously.
There's the enfleshment, theembodiment that our bodies here
matter, that life here matters,but it has to do with helping
those who are in need, helpingthose who don't have resources
right.
There's this way of living andbeing in the world If bodies
(13:20):
matter, and the discovery, Ithink, going back to a prior
question, what did I learn?
I learned we only need onekidney to function right.
It's one of these things that Iprobably learned, that in fifth
grade or sixth grade, but Idon't remember those kinds of
details and then I began toreally think about, well, if
this is a way that someoneelse's body can matter really,
(13:44):
the opportunity for me topotentially participate in
extending life and Jim's abilityto serve and love as an
extension of all of this reallyinformed the way that I think
about all of this and so I thinkfor me helping us as a people
(14:04):
understand that really what wehave is to be shared with others
.
We often think about money or wethink about other kinds of
things, but we can share ourvery selves with others and I
think that's for me, theconnection with the life and
teachings of Jesus is that heshared his very life with us,
and that kind of moves me inthis direction.
(14:25):
But for me it is an embodiedfaith and if we're able to do
that and share that with others,then I think we're reflecting
ever more closely the life andteachings of Jesus and what he
was about in this world.
Speaker 1 (14:38):
And I like what you said about.
By donating, you're extendingJim's ability to spread that
same type of love and giving.
That's a nice way to look at it.
Speaker 2 (14:45):
same type of love and giving that's a nice way to
look at it, jim, you had theopportunity to participate in
the GiftWorks program as arecipient.
Speaker 3 (15:00):
Can you speak more to the type of support and also
resources that you received as aparticipant in our program.
Yes, I had tried on my own.
Once a year, on the anniversaryof when I started dialysis, I
would put something myselfonline just to say, hey, I'm
still looking, and that sort ofstuff.
But it was Amber and her teamwho gave me the resources and,
(15:24):
quite frankly, the confidencethat it was okay to share your
story more often, and so in thebeginning, we would get a script
that we were able to change andpost it online to whatever
social media platforms we used.
(15:45):
I did one week and then Angiedid the alternate week posting
those things, and throughout thesix months of the program, it
was amazing how much contact Ihad from somebody on the team
giving have you tried this orhave you done this or have you
(16:07):
looked here in order to get mymessage out, my story out to as
many people as I could.
Six months put us.
At the end of september Ihonestly became fearful because
I knew it was a six-monthprogram and yet, even after that
(16:27):
months, we're not going toleave you out there.
We're still going to help youin different ways.
I think it was November at somepoint that I found out that
somebody had accepted to be adonor.
So through that process, anyquestions I had were answered
(16:49):
immediately.
Any questions I had wereanswered immediately, and even I
mean Angie herself.
I mean she's like, well, whatabout this, what about this?
And so we would text or emailtogether and so you helped not
only myself but Angie, toalleviate a lot of those
questions that we were havingthrough this process, lot of
(17:12):
those questions that we werehaving through this process In
the summer.
There were a couple times that Igot discouraged and thinking,
oh, this isn't going to work,this isn't going to work.
And Amber was always there tosay just keep working the
program, something will happen.
The support was just amazing onwalking us through the process,
the journey, journeyingtogether through that whole
(17:34):
process.
Every once in a while I'd findout that, okay, there's another
person who's reached out forinformation, kind of like from
before.
I was waiting this whole timebut a whole lot was happening
more than I knew.
Whole lot was happening morethan I knew, and so I just had
(17:56):
to trust the process and trustthat things were happening that
I couldn't know at that timebecause of confidentiality and
all that I couldn't be told, andso I just had to trust that.
Okay, there are thingshappening, it's okay, it's all
in God's hands.
Speaker 2 (18:10):
It's definitely a collaborative journey.
Speaker 3 (18:12):
Very much.
Speaker 2 (18:19):
And I would just like to say I think that a lot of
recipients go through theprogram and they always hit a
point where they have a choicebecause maybe they're not
getting the results they wantimmediately and, like you said,
there's so much happening behindthe scenes that Lori and I
can't disclose, but there'salways this point.
I think that recipients reachwhere they have a choice.
They can give up or they canhave faith and keep going and
pushing through and trusting theprogram and working together
(18:42):
with us, and you did that and Ithink that's remarkable.
Thank you.
Speaker 1 (18:50):
That's remarkable, Thank you.
I remember seeing a few of yourFacebook posts, Jim, where you
were frustrated because youdidn't know who your donor was
and you had gratitude that youhad a deep desire to give to
somebody but you didn't know whoto give it to and Jeff, in the
meantime, had chosen to stayquiet about what he was doing
and to see the journey throughkind of independently of
(19:12):
communication with you and yourwife.
Do you want to talk a little bitabout that and your decision to
do this independently and makeyourself known at a later date.
Speaker 4 (19:24):
I mean because there were so many variables involved
in all of this right.
There was one side, and I knowgeography has kind of created
distance between us in a all ofthis right.
There was one side, and I knowgeography has kind of created
distance between us in a lot ofways.
But then I didn't want tocreate an awkwardness in our
ongoing relationship if I got toa point where I wasn't able to
or I chose not to or whatever.
(19:45):
And then the feeling of lettingsomeone you care deeply about
down right.
And then the feeling of lettingsomeone you care deeply about
down right.
In this process the only personthat really knew was my wife, in
terms of my own socialenvironment and friends and
family and all of that.
So in that way, I guess, lori,our conversations, you were kind
of guiding me through this, youwere the one that was helping
(20:06):
me walk through all of thisBecause, again, there was so
much that was unknown to me Ididn't want to let anybody down
and so that was, I think, partof my framework in thinking
about it's going to get throughall of the diagnostic testing,
make sure that I'm eligible inthese kinds of ways.
And then there was certainlythe point at which then we
(20:27):
weren't compatible in the waysthat they wanted us to be
compatible, and then I was.
I will say I was disappointed.
At that time I'm like, oh, andthat's, I think, within the
conversation about paireddonation comes into play in
learning how valuable that canbe and it opened up some new
horizons for me to think about,even in that kind of way.
Speaker 1 (20:49):
I'm glad you brought that up.
So you were not a match to Jimand you ultimately ended up
being a voucher donor throughthe National Kidney Registry.
Do you want to talk a littlebit about that and what that
meant in terms of your donationand Jim receiving a kidney?
Speaker 4 (21:06):
Once the discovery was made that I wasn't going to
be a direct match to Jim, thevoucher program through the
kidney registry, which opened upa new series of questions.
I'm like, okay, so that wasjust a whole new learning curve,
my kidney.
(21:26):
But it then provided theopportunity for Jim to be
prioritized in particular waysand receive a match for him.
That was indirectly connectedto me, as I made my donation to
facilitate all of that.
Speaker 1 (21:40):
And Jim, how long after Jeff donated did you
ultimately end up getting?
Speaker 3 (21:44):
your match.
It took a week to a week and ahalf, after Jeff donated, for
them to activate it, almostthree months to the day between
the time it became active andthe time I got my kidney Really
quick.
Speaker 1 (22:04):
So kind of just to recap how that voucher works.
Jeff wanted to donate a kidneyto his friend Jim, but they
weren't a match.
So instead Jeff chose to donatethrough the National Kidney
Registry, the NKR, as a voucherdonor, and that means Jeff's
kidney went to a patient in theNKR system who was a good match.
In an exchange, jeff named upto five people, one of them who
(22:28):
could ultimately redeem thevoucher for a future kidney
transplant, and everyoneinvolved understood that Jim
would be the one to redeem it.
They they allow you to namefive people, though, because,
you know, god forbid Jim getshit by a bus.
Jeff still has those other fourvouchers and his kidney
donation wasn't in vain.
(22:48):
So Jeff donated at NYU Langoneand once the surgery was
complete Jim's voucher wasactivated, and at that point the
NKR began searching for aliving donor who was a good
match for Jim.
Jim, a patient at University ofUtah Health, received his
transplant just a few monthslater.
So there is a wait time betweenthe voucher donor surgery and
(23:10):
the recipient's transplant, butthe process is closely
coordinated, so it's not left upto chance, and most voucher
recipients follow a similar pathto Jim and Jeff's story, and
that's thanks to NKR's largepool of donors.
Outcomes are strong and waittimes are usually pretty
comparable to this, which isgreat for the patient and the
(23:31):
donor.
Now we'd love to turn the micover to both of you guys.
So, jeff, what's one questionyou've always wanted to ask Jim
regarding this experience?
Speaker 4 (23:45):
How did you remain hopeful in the midst of all of
the uncertainty?
And you know, relying on somany other things to happen to
make this available to you.
How did you remain hopeful?
Speaker 3 (23:58):
I had a very great support system and in those
times that I did get frustratedthat they were there and they
told me to keep going, keepworking, something will happen
and, ultimately, trusting inGod's will, knowing as much as I
(24:21):
could that God's not done withme.
There's still more to be done.
There's still more to be done,and whether that's with a new
kidney or without a new kidney,that there's still things I need
(24:44):
to be doing moving into thefuture.
And so I was excited when thekidney actually came along
because, like, okay, now we cando things a little less
encumbered than before.
But I just always had thatfaith that God was going to work
it out.
I didn't know how, like yousaid, lots of stuff going on
that I don't know about, butit's going to work out and
(25:06):
that's what I just kept tellingmyself and relying on.
Speaker 2 (25:10):
So, Tim, what's something you've always wanted
to ask, jeff?
Speaker 3 (25:15):
As I went through this, a lot of people would
mention that they filled out apaperwork or something, and a
lot of times it was, but myspouse really didn't want me to
do it, and so I'm just curioushow Stacyacey reacted to all of
(25:40):
this and your kids.
Were they all supportive, orwere they?
I can't imagine there not beinghesitance on their behalf.
Speaker 4 (25:51):
Jim, that's a great question.
I'll answer it this way.
Her initial response was thatseems like something you would
do.
I mean, over the course of ourI mean I've done a lot of
different marathons, triathlons,Ironman.
All of this and it was therunning joke was always just
(26:12):
keep the life insurance up todate, Just keep the life
insurance current right.
So Stacey was supportive,helpful, and then certainly our
daughters.
I wasn't involving them until Iwas doing the voucher form
Because I need some informationfrom them on the voucher form
and they're like Dad, why areyou asking me.
(26:33):
Overall they were, they weresupportive.
I mean, there was the day ofthe surgery, all of the
hesitations that go with all ofthat, that I think were were
normal and whatnot.
But yeah, that was kind of how,how we navigated that space
yeah nice, those were goodquestions really good questions.
Speaker 2 (26:52):
So, jim, now that you are officially post-transplant
and in recovery, looking back,what advice would you want to
give to other kidney recipientswho are waiting for their
transplant?
Speaker 3 (27:05):
Through GiftWorks and everything.
There's a whole lot ofresources available to make you
successful.
But I think one thing that youcan never forget is that you are
your own best advocate.
But don't be afraid to shareyour story, Wherever it's, at
whatever venue, whatever socialmedia, whatever.
(27:28):
Share your story as broadly aspossible, Because it only takes
that one set of eyes to see itand that person say I need to
check that out.
And for me, I was lucky that itwas a friend from a long time
ago.
But there were people that Ididn't even know that had
(27:54):
emailed back and said Isubmitted the information and
this was somebody who shared mypost, who somebody else shared
their post, who somebody elseshared their post, and somebody,
not even in my realm ofinfluence or knowledge, stepped
forward and said I want to checkinto this.
(28:14):
So as much as you can tell yourstory, all the better, and if
you can get other people to tellyour story in a different
perspective, all the better.
Speaker 1 (28:25):
And, jeff, what would you say to someone thinking
about becoming a donor?
Speaker 4 (28:29):
I would say your initial yes is not your final
yes and that there's just aseries of yeses that you have to
keep going through that I thinkmoving forward or to exit as
necessary in that kind of way,the experience was personally
transformative.
(28:49):
I think I am a different personhaving gone through this
process.
Speaker 1 (28:55):
Well, jeff and Jim, thank you both so much for
sharing your hearts and yourstory.
You've given us something allto think about and, I think,
something to be hopeful for.
So thanks for being on DonorDiaries today.
Speaker 3 (29:07):
Wonderful.
Thank you so much.
Speaker 2 (29:09):
If you're listening and inspired to learn more about
living donation or want tosupport stories like this, visit
yourgiftworkscom for moreinformation.
Speaker 1 (29:17):
And remember every act of kindness creates ripples.
Thanks for listening and keepspreading those positive vibes.
I just want to feel thesunshine.
Speaker 3 (29:38):
I just want to feel the sunshine.
I share this life with you.
I share this life with you.
I share this life with you,thank you.
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