Sue Rees returns to share the revolutionary donor protections offered by the Alliance for Paired Kidney Donation (APKD) that are making kidney donation more accessible and equitable for everyone. As Chief Operating Officer with over 25 years of transplant experience, Sue walks us through the comprehensive "Donor Protect" program designed to eliminate financial barriers while safeguarding donors' futures.
We explore how the Alliance reimburses lost wages (up to $10,000), covers travel expenses for both donors and their support persons, and even provides dependent and pet care assistance. Sue explains their innovative "Home Advantage" program, which allows donors to recover locally while their kidneys are shipped to recipients across the country. Most fascinating are the various pledge programs that protect donors and their loved ones: the Advanced Donation Pledge, the Family Pledge, the Friend Pledge, and the Kidney Promise.
The conversation takes a global turn as Sue reveals how APKD's international initiatives are creating life-saving matches across borders. "Our differences can save our lives," she explains, sharing the remarkable story of a Mexican poet with 94% antibodies who found her match in Wisconsin. This global kidney exchange program demonstrates how genetic diversity across populations can be the key to finding matches for highly sensitized patients.
Sue's personal journey into transplant care adds emotional depth to the discussion. After losing her father to glioblastoma, she was profoundly moved by his nurse's compassion: "I want to be that for somebody," she decided. Today, through her work with the Alliance, Sue helps give second chances to patients and families facing medical crises.
Whether you're considering donation or simply curious about advances in transplant care, this episode offers invaluable insights into the protections that make kidney donation safer and more accessible than ever before.
SHOW LINKS:
Alliance for Paired Kidney Donation
Donor Protect
Mexican Kidney Exchange Story
Donor Diaries Website
Donor Diaries on Facebook
GiftWorks Website
Connect with Laurie Lee
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
I don't think there's a lot of people out there that
can say I really have a hand ingiving somebody a second chance
at life.
Speaker 2 (00:17):
Hi and welcome back.
This is part two of our specialtwo-part series with the
(00:37):
Alliance for Paired KidneyDonation.
In part one, we talked with DrMichael Reese and Sue Reese
about the early days of kidneyexchange and the incredible
trust it took to build a systemthat's now saved thousands of
lives.
Today, I'm rejoined by myfriend, sue Reese, for an
important conversation aboutDonor Protect, a set of
(00:59):
resources designed to makeliving kidney donations safer,
more accessible and moreequitable.
If you're a current orpotential donor, these are
protections you'll want to knowabout.
As a donor myself who worksclosely with other potential
donors, I know how much thesesupports matter.
They can be the differencebetween a positive experience
(01:19):
and one that's unnecessarilydifficult.
Even if your transplant centerisn't partnered with the
Alliance, there's a really goodchance you still have access to
similar protections, so pleasedon't hesitate to ask your
coordinator or social workerabout these protections.
You can also reach out to medirectly, helping donors
navigate.
This is what I do A littleabout.
(01:42):
Today's guest, sue, has over 25years of experience in
transplant and is the chiefoperating officer at the
Alliance.
She also serves as chiefclinical officer at Health to
Hope.
She's a nurse, a publishedresearcher and someone who's
deeply committed to helpingpeople live longer, healthier
lives.
She's also a future livingkidney donor, so hopefully we
(02:07):
can follow up with her.
When that comes to fruition,let's jump in, all right.
So welcome back to DonorDiaries, sue, you're my only
guest that I've had on DonorDiaries in succession this close
together, so you're a VIP.
Speaker 1 (02:23):
Well, it's good to be back and it's great to see you
again, Lori.
Speaker 2 (02:26):
Good to see you too, and so, just in case somebody
didn't listen to the firstpodcast we had with you and Mike
about the Alliance, can yourefresh our memory on what the
Alliance Repaired KidneyDonation is?
Speaker 1 (02:37):
Yes, absolutely Happy to the Alliance.
Repaired Kidney Donation wasstarted back in 2006 as a
nonprofit and we remain anonprofit.
Back in the clinic days, when Iwould see patients in the
clinic Lori in 2001, it was soheartbreaking to see an
individual that was tethered todialysis.
(03:00):
They had a loved one that wasdesperate to give to them, but
there were no options.
And then, when we formulatedthe Alliance for Paired Kidney
Donation, it was brought tofruition because we wanted to
stop sending patients out of ourclinic and saying I'm sorry, we
can't help you.
And so our mission now is totry to provide a kidney for
(03:23):
everyone that needs one throughpaired donation.
We partner with transplantcenters across the United States
, and now we are partnering withtransplant centers outside of
the United States, such asDenmark, and through this
initiative, globally, we want tobring the world together
through paired donation becausewe are finding that our
(03:45):
differences actually can benefitanother one and save their life
.
Speaker 2 (03:51):
So that seems like it's one of your taglines, sue.
What do you mean when you saythat?
That our differences are whatcan save our lives?
Speaker 1 (03:58):
Well, laurie, if you think about it, you have
somebody from Scandinavia, andmost people from that area stay
in that area, and so they mayhave an immunological immunity
to somebody that's like them inthat area.
But if you think about theUnited States or Italy, we're
(04:21):
accustomed to certaingenerations around us, right?
So America is the melting pot,and we tend to be immune to
folks that are like us.
It could be our child, it couldbe our siblings, it could be
our parents, and so we'refinding culturally that one's
(04:44):
different genetic makeup from,say, denmark, could be the
benefit or the needle in thehaystack that helps somebody
that's highly sensitized in theUnited States.
And this actually came to beback in 2016, when we had a
lovely young lady in Mexico.
(05:05):
She is a poet and author, andher cousin was desperate to save
her life.
Her cousin was an O.
Marisol was also an O, but hercousin couldn't give to her,
despite being the universaldonor, and she had 94%
antibodies in her system becauseshe had a previous transplant.
(05:27):
And when she came into the APKDand our global initiative, I
thought, oh, there's no way weare going to be able to find her
a match.
She is 94% sensitized.
It's going to be the needle inthe haystack.
Well, my business partner fromPronell in Mexico City said just
try it.
Just put her HLA into yoursystem and see if it works.
(05:49):
So I said, okay, stick with me.
I got her HLA blood work.
I put her into the system and,lori, she matched up with
somebody in Wisconsin and so Isaid you know what, gabriel,
don't get too excited.
I need her blood and I'm goingto test it with this highly
sensitized man in Wisconsinwhose mother was desperate to
(06:14):
save her son's life.
So I did some footwork andwouldn't you know that the
Wisconsin mother was able togive to this highly sensitized
lady from Mexico in exchange forher cousin to give to the
mother's son, who was alsohighly sensitized.
(06:36):
And I thought to myself I'mlike this is interesting.
And I said I think we need tostart looking into this because
the odds are against them, notwith them.
So what is it about our geneticmakeup from around the world
that could actually benefit andsave somebody else's life?
So that's why we started doingthis global outreach with Global
(06:58):
Kidney Exchange.
Is it possible that somebodyfrom a different country could
be your needle in the haystackto save your life?
And so it's really interestingto think about this concept.
We can benefit each other'slives by saving each other.
Speaker 2 (07:16):
I love that, sue and I just I re-listened to our
first podcast this morning, justto kind of get back into the
topic, and it was really neat tore-listen to how you and Mike
were at the forefront.
You were pioneers in this.
You were the ones in the early2000s that were setting this up.
And now in this conversation,it blows my mind that we're
(07:38):
talking about actually seeking amatch in another country and
all of the logistics that mustcome along then with like, what
did you do with the Mexicanrecipient?
Did you bring them to theUnited States?
Did a donor have to go toMexico?
How is that paid for?
Like?
Maybe this should be our thirdpodcast.
I don't know, sue, but I meanit's incredible to think that
(08:01):
we're going outside borders tosolve the problem that we have
with finding matches, especiallyfor highly sensitized people.
Speaker 1 (08:10):
It was a logistical challenge, I will say so.
We went to TSA and we talkedwith TSA officials.
Can we take a kidney and shipit to Mexico?
Could we take a kidney fromMexico and ship it to Wisconsin?
Can we transport the kidneyswith a human taking it across
(08:31):
the lines?
We thought of everything and wehave very strict guidelines in
America and we should weshouldn't take any kidney that
is offered to us.
So we have regulations andpolicies that would prevent us
from taking a kidney from Mexicoand bringing it into the United
(08:51):
States.
And, like Marisol who neededthe kidney, she came to the
United States and actuallyreceived her kidney here.
Now, with Marisol, there was afoundation in Mexico that
actually paid for her travel andthe transplant expense, because
she didn't have Americaninsurance, nor did she have
(09:12):
access to Medicare or Medicaid.
Speaker 2 (09:15):
Wow.
So that's got to be differentwith every country.
Speaker 1 (09:18):
Every country yes.
Speaker 2 (09:20):
So, sue, one of the things I really want to focus on
in this podcast episode isdonor protections, and I think
like a good way to describe whata donor protection is is that
it's not easy to donate a kidneyright, like there's things that
are barriers to donation formany people, and so as a whole,
(09:41):
the transplant community is inagreement that we as a society
need to eliminate the barriers,but we also are saying we don't
want to incentivize peoplemeaning like to pay a donor for
their kidney right, but we atleast want to be able to make a
kidney donation cost neutral andremove barriers, and the
(10:02):
Alliance for Paired KidneyDonation has something called
Donor Protect.
Can we go through the differentaspects of Donor Protect one by
one, and have you tell us alittle bit about each?
Speaker 1 (10:15):
Yeah, absolutely For sure.
Donor Protect has evolved overthe years.
You know, when we first startedthinking about this and talking
to the donors, the biggestexpense was taking time off work
, like I can't be out of workfor two to four weeks and not
get a paycheck.
My employer's not going tocover this.
That's how it all came to be.
(10:36):
We wanted them to befinancially neutral.
They are saving somebody's life.
How can we not help supportthem financially?
And there was a lot of scuttleat first because is it coercion?
And I think the transplantcommunity and society got over
like no, that's not coercion,we're just making them
(10:56):
financially neutral so they canhelp save their loved one's life
or a stranger's life.
So we have a lost wagereimbursement that covers up to
$10,000 in wages, but say theywork in a factory and they do
heavy lifting, the surgeon maynot want them to go back to work
for six weeks, and so those aresituations that we also take
(11:18):
into consideration where wewould take on the extra two
weeks to six weeks for financialreimbursement.
We confirm with the employerthat this is what the donor
makes, and we obtain pay stubsor their tax return just to make
sure that we're making themwhole.
Speaker 2 (11:39):
Meaning, if somebody's making $300 a week,
you're not going to reimbursethem for $900 a week.
Exactly, yep, we need to makethem whole.
Speaker 1 (11:46):
Going to reimburse them for $900 a week Exactly Yep
.
We need to make them whole,because if we give them 900 and
they're only making 300, thatcould look like coercion.
So we need to make sure that weare straight up and that we are
protecting the patients so theyare financially neutral.
Speaker 2 (12:00):
And I didn't realize that you were looking at it on a
case-by-case basis.
So somebody like me who has adesk job you know I can go back
versus if I was a constructionworker, you might make me hold
differently because you know Ican't go back after three weeks.
Speaker 1 (12:16):
We have a designated donor protect coordinator that
works one-on-one with each donor.
That helps guide them throughthis process of filing and
paperwork that's needed.
But at the end of the day, Lori, I wouldn't claim that you're
ready to go back to work.
It would be your doctor whowould say you know, I think she
needs an extra week off becauseshe does X, Y and Z at work, you
(12:39):
know.
So we really work hand in handin a partnership with our
transplant centers.
If, then, we are going to dothe right thing for that
patient's safety and well-being.
Speaker 2 (12:49):
That's so important that you're advocating for
donors in this way.
Absolutely, it was kind of mysoapbox, like I.
Just I feel like this is soimportant to make it as easy as
possible for a donor, and thisis amazing, sue, thank you.
We have a rule in my family noemailing 48 hours until after
(13:10):
anesthesia is out of your body.
Speaker 1 (13:13):
That's probably a smart rule Most should follow.
Speaker 2 (13:17):
My dad and I have both put out emails like right
after surgery and then regrettedit later.
So, yeah, we have rules aboutthat.
See, if I wasn't worrying aboutreplying to emails, maybe I
wouldn't be emailing, right,exactly.
Speaker 1 (13:32):
That's so funny, because a month back I had a
colonoscopy and I thought I wasall great, like I'm going to go
home and I'm going to work on myemails, and I did, and then I
woke up from my nap a couplehours later I'm like oh, I
better go back and see what Iwrote.
Speaker 2 (13:48):
Did you send anything bad?
Speaker 1 (13:50):
Nothing bad.
Speaker 2 (13:53):
Well, you should follow our lead here, sue, and
join my dad and I in notemailing after a procedure.
I think I'm going to followyour advice, so tell us a little
bit about travel expenses.
Why would a donor incur travelexpenses and how can you help
with travel expenses?
Speaker 1 (14:10):
Yeah, for sure.
So this isn't only for thedonor, but it's also for their
support person, because we wantto make sure that their support
person is financially neutralthere too, because going through
a kidney donation and you canspeak from this it can be
emotionally taxing, and so wewant to make sure that their
(14:31):
loved one, their support person,is there with them every step
of the way for psychological andphysical support.
And that means when they go tothe evaluation process and
orientation process andorientation.
We want the patients to gothere, be properly educated on
what to expect when donating, aswell as their support person.
(14:52):
So we cover travel expensesfrom the time of orientation and
evaluation up until the time oftheir first post-op appointment
.
So it's a case by case basis.
Speaker 2 (15:05):
But again, you're looking at this person as an
individual and looking at theirindividual situation and making
decisions Exactly.
That's amazing.
Yep, not one size fits all.
It's never one size fits all andthere are just life events that
take place that you know againthat we need to be there to help
these donors that are sodesperate to save their loved
(15:26):
one, and I imagine you guys aredoing more remote donations now,
which probably alleviates thetravel expense in a lot of cases
if the donor can stay at atransplant center near home and
just have their kidneys shippedright.
Speaker 1 (15:42):
Yeah, and that's a great segue into our Home
Advantage program.
You know we need to make itcomfortable for the donors, so
can we work with anothertransplant center outside of the
recipient's home-basedtransplant center and ship the
kidneys, and so that is our HomeAdvantage program, where the
donors can stay local, recoverlocal and the recipients can do
(16:05):
the same local, recover localand the recipients can do the
same, and that's a programthat's getting bigger with more
transplant centers that you workwith?
I imagine it is.
It is, and most transplantcenters want to work well
together.
You know they want to do what'sright for the patients and for
the donors.
It's right for them to be homeand recover in their own
surroundings.
Speaker 2 (16:24):
Yeah, to have your own dogs in your bed with you,
exactly yes, and that's a goodsegue into pet care.
So I have a one of my closefriends recently donated and she
worked with Krista at theAlliance and it was funny when I
did a podcast interview withher it felt like the Alliance
was paying her because she justkept incorporating you back into
(16:47):
her story, because you reallymade a difference in her
donation, and she said the onlything they didn't cover was pet
care.
And then, like a month later, Iwas on your website and I saw
that you started offering petcare, which is a real expense,
because that's a real thing Ifyou're going to be staying in a
hotel for a few nights or in thetransplant center and you need
(17:08):
dog walkers and stuff.
Speaker 1 (17:09):
Yep for sure, and it was probably that scenario that
led us to I'm sure it was thatsaid, hey, we need to offer pet
care Because you know, lori, I'ma dog lover and I can't imagine
leaving McGee, and it wouldjust alleviate some of my
concerns that you know he doeshave somebody here to be cared
(17:29):
for and we should reimbursethose donors for that.
That's an expense, just likehaving child care or elderly
care is an expense.
So can we help alleviate thisburden for all donors?
Burden for all donors?
So that's why we've added thepet care.
Speaker 2 (17:46):
We have dependent care, whether that's your child
or elder parent somebody thatyou help take care of day in and
day out, and McGee wouldprobably actually need a nurse
to come in, because doesn'tMcGee get injections?
Speaker 1 (18:00):
He does as of November.
The poor guy is 12 and a halfyears old.
He's a November.
The poor guy is.
He's twelve and a half yearsold.
He's one hundred and ten pounds.
Oh, in November he wasdiagnosed with diabetes.
I think, laurie, you know howmuch McGee is like my sidekick.
He goes to work with me, he'llgo to the gym with me.
I just couldn't imagine nothaving somebody there to care
(18:24):
for him.
So this will help alleviatesomebody else's McGee.
Speaker 2 (18:29):
Well, thank you, McGee, for getting pet care
added to donor protect.
Speaker 1 (18:35):
Yes.
Speaker 2 (18:35):
So yeah, you've got pet care, dependent care, so
that's children or elder care,yes.
And then I'd really love to askabout the different pledges you
have, and I think thatsometimes donors hear the word
voucher.
They have a general concept ofwhat a voucher is.
For somebody who's familiarwith a voucher, you do offer
(18:57):
something similar.
Speaker 1 (18:59):
Absolutely, and we have three different kinds.
So we have the advanceddonation pledge, so this allows
the donor to donate in advanceof their loved one receiving a
kidney.
The benefit of this is that youcan start to recover before
your loved one gets a kidney andthen you can be there for them
(19:21):
when they receive their kidney,and so it just allows
flexibility for their lifestyle.
Maybe it's their work schedule,maybe it's a family commitment.
The advanced donation pledge isa benefit for you and it would
be your designated individual,so it cannot be transferred to
another individual and, lori, itwould expire on your death or
(19:43):
the death of the individualnamed, whatever comes last.
Speaker 2 (19:47):
And how is that different from the family and
friend pledge that you have?
Speaker 1 (19:52):
So the family pledge protects you should a member of
your immediate family need akidney.
In the future Meaning, wedefine eligibility for a family
member as a spouse, child,parent, grandchild or a sibling
that doesn't have kidney diseaseprior to your donation.
So you donate your kidney andthis would entitle your
(20:16):
immediate family to to be apriority in the APKD system
should they develop kidneyfailure.
Speaker 2 (20:24):
Well, what if I have like 50 people in my family?
Speaker 1 (20:28):
For this one.
It can't be transferred beyondyour immediate family members,
so it depends how many immediatefamily members you have.
You can only use it for oneperson.
Speaker 2 (20:39):
So what about, like for a young donor who isn't
married, doesn't have kids, butthey plan to do that in the
future?
How can this benefit them?
Speaker 1 (20:50):
They don't have to name an individual.
You can name your child infuture needs.
Speaker 2 (20:56):
So I can name.
I could have 10 children in thefuture.
Speaker 1 (21:00):
But you can only.
You'd only have one kidneycoming back to you, Okay.
Speaker 2 (21:04):
But it doesn't matter that those children aren't born
.
I really appreciate that aboutthis pledge, because it's
different than saying I'm namingthese five people as my voucher
holders because the five peopleI would have named when I was
22 are different than the fivepeople I would name right now,
and so it kind of allows yourfamily to change and grow.
Speaker 1 (21:27):
Right exactly?
Speaker 2 (21:29):
Is it the family pledge and friend pledge two
separate things or is it familyand friends?
Speaker 1 (21:34):
Friends is you know they're not a DNA match, right?
They're not in your immediatefamily, but it allows a donor to
say, hey, they're not in yourimmediate family, but it allows
a donor to say, hey, you know, Iwant to give my kidney and my
friend has kidney disease intheir family.
I'd like a pledge go to them ifthey come up in the future of
needing a kidney.
(21:55):
So this would allow a donor toname up to five individuals who
do not have kidney disease priorto donation, but this would
protect them should one of thosefive named friends or loved
ones need a kidney in the future.
Speaker 2 (22:10):
Sue, do you have somebody who talks donors
through this so that they fullyunderstand how it works, what it
means and who could potentiallybenefit from this in the future
?
Speaker 1 (22:22):
Absolutely so.
Elizabeth Sherrill is ourdesignated donor protect
coordinator and she is alwayshappy to sit down and talk with
a donor if they have questionslike what is my eligibility?
What if you know what's thebest pledge for me to have and
how would you advise me?
(22:43):
I mean, and she would adviseyou not only on the kidney
pledges but also, like the homeadvantage, pet care, any
questions that you may have.
She reaches out to thetransplant center that that
donor's at and she will workwith the social worker or the
transplant coordinator just tomake sure that all I's are
dotted and T's are crossed.
(23:03):
She probably knows before I dothat that donor has donated
because she's on it and she hassuch a special relationship with
these donors that I've actuallyseen Elizabeth create
friendships with these donorsthat have stayed in touch with
her.
Speaker 2 (23:21):
That's incredible.
And then you have one lastthing which I just think is
hugely important, and it'scalled the kidney promise.
Before I ask you to explainwhat it is, I feel like kidney
pledges, vouchers, kidneypromises.
I'm guessing, and I'd love foryou to tell me if I'm wrong, but
(23:42):
I'm guessing that these aren'tthings that people actually end
up using.
However, I mean, I'm sure theadvanced donation pledge people
use that right, but the kidneypledge for friends and family
and the kidney promise, theyfeel like a benefit that I would
get as a donor that make mefeel safe.
(24:03):
But I'm probably never going touse them, but it still feels
really good to have them offeredto me.
Is that true?
Speaker 1 (24:10):
Yes, and it's like an insurance policy.
You know the chances are thatthey probably will never use
them, but they feel like cause.
You hear time and time again Iwould donate my kidney to
somebody, but I don't know if mychild will need one in the
future or if my parent will needone or my friend, and so we
want to alleviate that concernfor them.
(24:31):
And the APKD will stand by ourword that if you donate, we're
going to do everything in ourpower to protect your loved one.
And through that we have threedifferent pledges that you can
choose from, whatever one thatfits your needs.
And how can we do that?
And we also like the kidneypromise.
(24:52):
We want to protect that donor,god forbid and we only take the
best of the best to be a kidneydonor.
I mean there is quite a bit ofmedical workup that goes into
seeing if you're a suitablecandidate to donate.
Right, we don't want to takerisks on you psychologically,
physically.
So we do thorough workups tomake sure that you're in prime
(25:16):
condition and we are youradvocate.
We are not the recipient'sadvocate at that point.
Transplant centers they want toprotect the donors and they
should protect the donors.
And so the kidney promise is,lori, if you would ever.
You know you donated a kidneyand I think society should pay
(25:38):
you back.
God forbid that you ever havekidney disease and have to go on
dialysis.
You should have a priority togetting a kidney, and so that's
part of our mission is toprotect donors and recipients,
to make sure that everybodyreceives the greatest advantage
for their good.
Speaker 2 (25:56):
And I know that, no matter where you donate, if you
ever need a kidney yourself,that you're promised to be
prioritized and you essentiallygo to the top of the list.
But that's for a deceased donorkidney, yep, and you and I know
that a living donor kidney isbetter.
So because they last typicallytwice as long.
So what I like about this is isthat you know you're talking
(26:19):
about putting into society orgiving to society.
If you're giving society aCorvette and then one day you
need a car, it would be nice toget a Corvette back versus a
Corolla, exactly.
A Corolla is great, right.
So these donor kidneys, they'regreat, but this really offers
(26:40):
the donor kind of the same thingthat they not kind of.
It provides the donor to getback what they put in in the
rare, rare, rare case scenariothat that's needed one day.
Speaker 1 (26:53):
Yeah, exactly, and they should be protected.
Speaker 2 (26:56):
Well, thank you for protecting donors.
You guys do an amazing job.
Speaker 1 (27:00):
Oh well, it is truly a blessing it is.
It's really God's gift to me.
I never thought I would be intransplant.
You know, as a nurse I thoughtI'd be in pediatrics and NICU
and that's where I started outand by the grace of God, I fell
into transplant and I've neverlooked back because, you know, I
(27:24):
don't think there's a lot ofpeople out there that can say I
really have a hand in givingsomebody a second chance at life
.
And and for me, you know I thinkyou know this story, lori that
my dad had a glioblastoma when Iwas in my young twenties and I
set out to be a social worker,and at that point I was.
(27:47):
But then when my father fell ill, when his oncology doctor came
in and said, jerry, I'm sorry,there's just nothing else that
we can do, and I think youshould go home and spend as much
time with your family as youpossibly can, and it was just
(28:09):
devastating news to hear, but Icry every time I'm saying this.
His nurse walked in shortlyafter the oncologist left and my
goodness, I'll never forget theway she held his hand, the way
she looked at him and the way helooked back at her and I
(28:33):
thought I want to be that forsomebody.
And although my dad received adaughter's love and comfort, it
was the nurse's love and hopethat she gave him that.
I said I'm going to be that forsomebody.
And so, as I sit here and crythinking about it, I get to be
(28:55):
that you do.
I get to help give secondchances.
So, yes, so sorry for the tearsI get all ch get up every time.
Speaker 2 (29:04):
Well, and your story?
I've heard the story from youbefore, sue, and it always makes
me teary too, and cause I thinkabout you know my dad's story,
and my dad got a second chance,yeah, and I'm so sorry that your
dad didn't.
But you've created a life wherewhere you're giving everybody
(29:25):
that you work with around you adifferent outcome than the one
you got.
And if that's not makinglemonade out of lemons, I don't,
I don't know what is.
I mean, that's gotta be, it'sgotta be healing for you to be
able to do that.
Speaker 1 (29:43):
Absolutely, and you in my young 20s, and no matter
where anybody is spiritually, Ithink there are little winks
that we get and either we canchange the path we're on or go
straight forward.
And I'm so grateful that Ilistened to and saw that wink,
because I changed my path andlook where I'm at.
I'm friends.
Grateful that I listened to andsaw that wink because I changed
(30:03):
my path.
And look where I'm at.
I'm friends with Lori Lee, Imean.
I'm friends with Lori Lee andI'm friends with.
Lori.
Speaker 2 (30:12):
Well, thank you for sharing that, and thank you so
much for sharing with ouraudience more about the Alliance
for Paired Kidney Donation.
I am so glad that we took thetime to redo this, because it
felt so good to dive into eachone of these and give them the
attention that they deserve,because you're doing so much for
donors and in doing that fordonors, you're doing so much for
(30:34):
the patients.
So thank you from the bottom ofmy heart for all you do.
Speaker 1 (30:39):
Oh, and thank you, lori.
I mean you are just I can't sayenough good about you and you
know your mission in life tohelp others.
You know to donate to receivethis podcast or reach people
that don't have enough supportor education to know enough
about it.
You're helping lead theindustry and I really admire you
(31:00):
.
Speaker 2 (31:00):
Well, I admire you too, and thank you for being a
part of what I'm trying to dohere.
You've been a lot of fun towork with Sue.
Speaker 1 (31:07):
Well, I'm your biggest fan.
Well, rob's your biggest fan,and then probably your parents,
but I'm close up there.
I will tell you.
All right, my friend, you havea lovely day.
Speaker 2 (31:17):
You too.
Take care, sue.
Thank you, bye-bye, bye, sue.
Thank you, bye Bye.
If you'd like to learn moreabout donor protector, the
Alliance for paired kidneydonation, check out the show
notes for links and resources.
I'd like to give a huge thankyou to my editor, rob Lee, for
sticking with this podcastthrough three full seasons.
I really couldn't do it withouthim.
I'll be back this fall withmore incredible stories, so
(31:40):
don't forget to subscribe to getnotified when season four drops
.
You can also join theconversation on Facebook by
searching Donor Diaries Podcast.
This season of Donor Diaries wasproudly sponsored by GiftWorks,
an organization dedicated toempowering organ recipients and
living donors through education,advocacy and support.
(32:00):
By helping patients share theirjourney and connect with donors
, gift works is transforminglives, one transplant at a time.
Learn more at yourgiftworkscom.
Thanks so much for listeningand remember every act of
kindness creates ripples.
Keep spreading those positivevibes and we'll see you in the
fall.
This is Lori Lee signing off.
(32:21):
I just want to feel thesunshine.
I share this life with you.
I share this life with you.
(32:51):
I share this life with you, you.
I don't think there's a lot of people out there that
can say I really have a hand ingiving somebody a second chance
at life.
Speaker 2 (00:17):
Hi and welcome back.
This is part two of our specialtwo-part series with the
(00:37):
Alliance for Paired KidneyDonation.
In part one, we talked with DrMichael Reese and Sue Reese
about the early days of kidneyexchange and the incredible
trust it took to build a systemthat's now saved thousands of
lives.
Today, I'm rejoined by myfriend, sue Reese, for an
important conversation aboutDonor Protect, a set of
(00:59):
resources designed to makeliving kidney donations safer,
more accessible and moreequitable.
If you're a current orpotential donor, these are
protections you'll want to knowabout.
As a donor myself who worksclosely with other potential
donors, I know how much thesesupports matter.
They can be the differencebetween a positive experience
(01:19):
and one that's unnecessarilydifficult.
Even if your transplant centerisn't partnered with the
Alliance, there's a really goodchance you still have access to
similar protections, so pleasedon't hesitate to ask your
coordinator or social workerabout these protections.
You can also reach out to medirectly, helping donors
navigate.
This is what I do A littleabout.
(01:42):
Today's guest, sue, has over 25years of experience in
transplant and is the chiefoperating officer at the
Alliance.
She also serves as chiefclinical officer at Health to
Hope.
She's a nurse, a publishedresearcher and someone who's
deeply committed to helpingpeople live longer, healthier
lives.
She's also a future livingkidney donor, so hopefully we
(02:07):
can follow up with her.
When that comes to fruition,let's jump in, all right.
So welcome back to DonorDiaries, sue, you're my only
guest that I've had on DonorDiaries in succession this close
together, so you're a VIP.
Speaker 1 (02:23):
Well, it's good to be back and it's great to see you
again, Lori.
Speaker 2 (02:26):
Good to see you too, and so, just in case somebody
didn't listen to the firstpodcast we had with you and Mike
about the Alliance, can yourefresh our memory on what the
Alliance Repaired KidneyDonation is?
Speaker 1 (02:37):
Yes, absolutely Happy to the Alliance.
Repaired Kidney Donation wasstarted back in 2006 as a
nonprofit and we remain anonprofit.
Back in the clinic days, when Iwould see patients in the
clinic Lori in 2001, it was soheartbreaking to see an
individual that was tethered todialysis.
(03:00):
They had a loved one that wasdesperate to give to them, but
there were no options.
And then, when we formulatedthe Alliance for Paired Kidney
Donation, it was brought tofruition because we wanted to
stop sending patients out of ourclinic and saying I'm sorry, we
can't help you.
And so our mission now is totry to provide a kidney for
(03:23):
everyone that needs one throughpaired donation.
We partner with transplantcenters across the United States
, and now we are partnering withtransplant centers outside of
the United States, such asDenmark, and through this
initiative, globally, we want tobring the world together
through paired donation becausewe are finding that our
(03:45):
differences actually can benefitanother one and save their life
.
Speaker 2 (03:51):
So that seems like it's one of your taglines, sue.
What do you mean when you saythat?
That our differences are whatcan save our lives?
Speaker 1 (03:58):
Well, laurie, if you think about it, you have
somebody from Scandinavia, andmost people from that area stay
in that area, and so they mayhave an immunological immunity
to somebody that's like them inthat area.
But if you think about theUnited States or Italy, we're
(04:21):
accustomed to certaingenerations around us, right?
So America is the melting pot,and we tend to be immune to
folks that are like us.
It could be our child, it couldbe our siblings, it could be
our parents, and so we'refinding culturally that one's
(04:44):
different genetic makeup from,say, denmark, could be the
benefit or the needle in thehaystack that helps somebody
that's highly sensitized in theUnited States.
And this actually came to beback in 2016, when we had a
lovely young lady in Mexico.
(05:05):
She is a poet and author, andher cousin was desperate to save
her life.
Her cousin was an O.
Marisol was also an O, but hercousin couldn't give to her,
despite being the universaldonor, and she had 94%
antibodies in her system becauseshe had a previous transplant.
(05:27):
And when she came into the APKDand our global initiative, I
thought, oh, there's no way weare going to be able to find her
a match.
She is 94% sensitized.
It's going to be the needle inthe haystack.
Well, my business partner fromPronell in Mexico City said just
try it.
Just put her HLA into yoursystem and see if it works.
(05:49):
So I said, okay, stick with me.
I got her HLA blood work.
I put her into the system and,lori, she matched up with
somebody in Wisconsin and so Isaid you know what, gabriel,
don't get too excited.
I need her blood and I'm goingto test it with this highly
sensitized man in Wisconsinwhose mother was desperate to
(06:14):
save her son's life.
So I did some footwork andwouldn't you know that the
Wisconsin mother was able togive to this highly sensitized
lady from Mexico in exchange forher cousin to give to the
mother's son, who was alsohighly sensitized.
(06:36):
And I thought to myself I'mlike this is interesting.
And I said I think we need tostart looking into this because
the odds are against them, notwith them.
So what is it about our geneticmakeup from around the world
that could actually benefit andsave somebody else's life?
So that's why we started doingthis global outreach with Global
(06:58):
Kidney Exchange.
Is it possible that somebodyfrom a different country could
be your needle in the haystackto save your life?
And so it's really interestingto think about this concept.
We can benefit each other'slives by saving each other.
Speaker 2 (07:16):
I love that, sue and I just I re-listened to our
first podcast this morning, justto kind of get back into the
topic, and it was really neat tore-listen to how you and Mike
were at the forefront.
You were pioneers in this.
You were the ones in the early2000s that were setting this up.
And now in this conversation,it blows my mind that we're
(07:38):
talking about actually seeking amatch in another country and
all of the logistics that mustcome along then with like, what
did you do with the Mexicanrecipient?
Did you bring them to theUnited States?
Did a donor have to go toMexico?
How is that paid for?
Like?
Maybe this should be our thirdpodcast.
I don't know, sue, but I meanit's incredible to think that
(08:01):
we're going outside borders tosolve the problem that we have
with finding matches, especiallyfor highly sensitized people.
Speaker 1 (08:10):
It was a logistical challenge, I will say so.
We went to TSA and we talkedwith TSA officials.
Can we take a kidney and shipit to Mexico?
Could we take a kidney fromMexico and ship it to Wisconsin?
Can we transport the kidneyswith a human taking it across
(08:31):
the lines?
We thought of everything and wehave very strict guidelines in
America and we should weshouldn't take any kidney that
is offered to us.
So we have regulations andpolicies that would prevent us
from taking a kidney from Mexicoand bringing it into the United
(08:51):
States.
And, like Marisol who neededthe kidney, she came to the
United States and actuallyreceived her kidney here.
Now, with Marisol, there was afoundation in Mexico that
actually paid for her travel andthe transplant expense, because
she didn't have Americaninsurance, nor did she have
(09:12):
access to Medicare or Medicaid.
Speaker 2 (09:15):
Wow.
So that's got to be differentwith every country.
Speaker 1 (09:18):
Every country yes.
Speaker 2 (09:20):
So, sue, one of the things I really want to focus on
in this podcast episode isdonor protections, and I think
like a good way to describe whata donor protection is is that
it's not easy to donate a kidneyright, like there's things that
are barriers to donation formany people, and so as a whole,
(09:41):
the transplant community is inagreement that we as a society
need to eliminate the barriers,but we also are saying we don't
want to incentivize peoplemeaning like to pay a donor for
their kidney right, but we atleast want to be able to make a
kidney donation cost neutral andremove barriers, and the
(10:02):
Alliance for Paired KidneyDonation has something called
Donor Protect.
Can we go through the differentaspects of Donor Protect one by
one, and have you tell us alittle bit about each?
Speaker 1 (10:15):
Yeah, absolutely For sure.
Donor Protect has evolved overthe years.
You know, when we first startedthinking about this and talking
to the donors, the biggestexpense was taking time off work
, like I can't be out of workfor two to four weeks and not
get a paycheck.
My employer's not going tocover this.
That's how it all came to be.
(10:36):
We wanted them to befinancially neutral.
They are saving somebody's life.
How can we not help supportthem financially?
And there was a lot of scuttleat first because is it coercion?
And I think the transplantcommunity and society got over
like no, that's not coercion,we're just making them
(10:56):
financially neutral so they canhelp save their loved one's life
or a stranger's life.
So we have a lost wagereimbursement that covers up to
$10,000 in wages, but say theywork in a factory and they do
heavy lifting, the surgeon maynot want them to go back to work
for six weeks, and so those aresituations that we also take
(11:18):
into consideration where wewould take on the extra two
weeks to six weeks for financialreimbursement.
We confirm with the employerthat this is what the donor
makes, and we obtain pay stubsor their tax return just to make
sure that we're making themwhole.
Speaker 2 (11:39):
Meaning, if somebody's making $300 a week,
you're not going to reimbursethem for $900 a week.
Exactly, yep, we need to makethem whole.
Speaker 1 (11:46):
Going to reimburse them for $900 a week Exactly Yep
.
We need to make them whole,because if we give them 900 and
they're only making 300, thatcould look like coercion.
So we need to make sure that weare straight up and that we are
protecting the patients so theyare financially neutral.
Speaker 2 (12:00):
And I didn't realize that you were looking at it on a
case-by-case basis.
So somebody like me who has adesk job you know I can go back
versus if I was a constructionworker, you might make me hold
differently because you know Ican't go back after three weeks.
Speaker 1 (12:16):
We have a designated donor protect coordinator that
works one-on-one with each donor.
That helps guide them throughthis process of filing and
paperwork that's needed.
But at the end of the day, Lori, I wouldn't claim that you're
ready to go back to work.
It would be your doctor whowould say you know, I think she
needs an extra week off becauseshe does X, Y and Z at work, you
(12:39):
know.
So we really work hand in handin a partnership with our
transplant centers.
If, then, we are going to dothe right thing for that
patient's safety and well-being.
Speaker 2 (12:49):
That's so important that you're advocating for
donors in this way.
Absolutely, it was kind of mysoapbox, like I.
Just I feel like this is soimportant to make it as easy as
possible for a donor, and thisis amazing, sue, thank you.
We have a rule in my family noemailing 48 hours until after
(13:10):
anesthesia is out of your body.
Speaker 1 (13:13):
That's probably a smart rule Most should follow.
Speaker 2 (13:17):
My dad and I have both put out emails like right
after surgery and then regrettedit later.
So, yeah, we have rules aboutthat.
See, if I wasn't worrying aboutreplying to emails, maybe I
wouldn't be emailing, right,exactly.
Speaker 1 (13:32):
That's so funny, because a month back I had a
colonoscopy and I thought I wasall great, like I'm going to go
home and I'm going to work on myemails, and I did, and then I
woke up from my nap a couplehours later I'm like oh, I
better go back and see what Iwrote.
Speaker 2 (13:48):
Did you send anything bad?
Speaker 1 (13:50):
Nothing bad.
Speaker 2 (13:53):
Well, you should follow our lead here, sue, and
join my dad and I in notemailing after a procedure.
I think I'm going to followyour advice, so tell us a little
bit about travel expenses.
Why would a donor incur travelexpenses and how can you help
with travel expenses?
Speaker 1 (14:10):
Yeah, for sure.
So this isn't only for thedonor, but it's also for their
support person, because we wantto make sure that their support
person is financially neutralthere too, because going through
a kidney donation and you canspeak from this it can be
emotionally taxing, and so wewant to make sure that their
(14:31):
loved one, their support person,is there with them every step
of the way for psychological andphysical support.
And that means when they go tothe evaluation process and
orientation process andorientation.
We want the patients to gothere, be properly educated on
what to expect when donating, aswell as their support person.
(14:52):
So we cover travel expensesfrom the time of orientation and
evaluation up until the time oftheir first post-op appointment
.
So it's a case by case basis.
Speaker 2 (15:05):
But again, you're looking at this person as an
individual and looking at theirindividual situation and making
decisions Exactly.
That's amazing.
Yep, not one size fits all.
It's never one size fits all andthere are just life events that
take place that you know againthat we need to be there to help
these donors that are sodesperate to save their loved
(15:26):
one, and I imagine you guys aredoing more remote donations now,
which probably alleviates thetravel expense in a lot of cases
if the donor can stay at atransplant center near home and
just have their kidneys shippedright.
Speaker 1 (15:42):
Yeah, and that's a great segue into our Home
Advantage program.
You know we need to make itcomfortable for the donors, so
can we work with anothertransplant center outside of the
recipient's home-basedtransplant center and ship the
kidneys, and so that is our HomeAdvantage program, where the
donors can stay local, recoverlocal and the recipients can do
(16:05):
the same local, recover localand the recipients can do the
same, and that's a programthat's getting bigger with more
transplant centers that you workwith?
I imagine it is.
It is, and most transplantcenters want to work well
together.
You know they want to do what'sright for the patients and for
the donors.
It's right for them to be homeand recover in their own
surroundings.
Speaker 2 (16:24):
Yeah, to have your own dogs in your bed with you,
exactly yes, and that's a goodsegue into pet care.
So I have a one of my closefriends recently donated and she
worked with Krista at theAlliance and it was funny when I
did a podcast interview withher it felt like the Alliance
was paying her because she justkept incorporating you back into
(16:47):
her story, because you reallymade a difference in her
donation, and she said the onlything they didn't cover was pet
care.
And then, like a month later, Iwas on your website and I saw
that you started offering petcare, which is a real expense,
because that's a real thing Ifyou're going to be staying in a
hotel for a few nights or in thetransplant center and you need
(17:08):
dog walkers and stuff.
Speaker 1 (17:09):
Yep for sure, and it was probably that scenario that
led us to I'm sure it was thatsaid, hey, we need to offer pet
care Because you know, lori, I'ma dog lover and I can't imagine
leaving McGee, and it wouldjust alleviate some of my
concerns that you know he doeshave somebody here to be cared
(17:29):
for and we should reimbursethose donors for that.
That's an expense, just likehaving child care or elderly
care is an expense.
So can we help alleviate thisburden for all donors?
Burden for all donors?
So that's why we've added thepet care.
Speaker 2 (17:46):
We have dependent care, whether that's your child
or elder parent somebody thatyou help take care of day in and
day out, and McGee wouldprobably actually need a nurse
to come in, because doesn'tMcGee get injections?
Speaker 1 (18:00):
He does as of November.
The poor guy is 12 and a halfyears old.
He's a November.
The poor guy is.
He's twelve and a half yearsold.
He's one hundred and ten pounds.
Oh, in November he wasdiagnosed with diabetes.
I think, laurie, you know howmuch McGee is like my sidekick.
He goes to work with me, he'llgo to the gym with me.
I just couldn't imagine nothaving somebody there to care
(18:24):
for him.
So this will help alleviatesomebody else's McGee.
Speaker 2 (18:29):
Well, thank you, McGee, for getting pet care
added to donor protect.
Speaker 1 (18:35):
Yes.
Speaker 2 (18:35):
So yeah, you've got pet care, dependent care, so
that's children or elder care,yes.
And then I'd really love to askabout the different pledges you
have, and I think thatsometimes donors hear the word
voucher.
They have a general concept ofwhat a voucher is.
For somebody who's familiarwith a voucher, you do offer
(18:57):
something similar.
Speaker 1 (18:59):
Absolutely, and we have three different kinds.
So we have the advanceddonation pledge, so this allows
the donor to donate in advanceof their loved one receiving a
kidney.
The benefit of this is that youcan start to recover before
your loved one gets a kidney andthen you can be there for them
(19:21):
when they receive their kidney,and so it just allows
flexibility for their lifestyle.
Maybe it's their work schedule,maybe it's a family commitment.
The advanced donation pledge isa benefit for you and it would
be your designated individual,so it cannot be transferred to
another individual and, lori, itwould expire on your death or
(19:43):
the death of the individualnamed, whatever comes last.
Speaker 2 (19:47):
And how is that different from the family and
friend pledge that you have?
Speaker 1 (19:52):
So the family pledge protects you should a member of
your immediate family need akidney.
In the future Meaning, wedefine eligibility for a family
member as a spouse, child,parent, grandchild or a sibling
that doesn't have kidney diseaseprior to your donation.
So you donate your kidney andthis would entitle your
(20:16):
immediate family to to be apriority in the APKD system
should they develop kidneyfailure.
Speaker 2 (20:24):
Well, what if I have like 50 people in my family?
Speaker 1 (20:28):
For this one.
It can't be transferred beyondyour immediate family members,
so it depends how many immediatefamily members you have.
You can only use it for oneperson.
Speaker 2 (20:39):
So what about, like for a young donor who isn't
married, doesn't have kids, butthey plan to do that in the
future?
How can this benefit them?
Speaker 1 (20:50):
They don't have to name an individual.
You can name your child infuture needs.
Speaker 2 (20:56):
So I can name.
I could have 10 children in thefuture.
Speaker 1 (21:00):
But you can only.
You'd only have one kidneycoming back to you, Okay.
Speaker 2 (21:04):
But it doesn't matter that those children aren't born
.
I really appreciate that aboutthis pledge, because it's
different than saying I'm namingthese five people as my voucher
holders because the five peopleI would have named when I was
22 are different than the fivepeople I would name right now,
and so it kind of allows yourfamily to change and grow.
Speaker 1 (21:27):
Right exactly?
Speaker 2 (21:29):
Is it the family pledge and friend pledge two
separate things or is it familyand friends?
Speaker 1 (21:34):
Friends is you know they're not a DNA match, right?
They're not in your immediatefamily, but it allows a donor to
say, hey, they're not in yourimmediate family, but it allows
a donor to say, hey, you know, Iwant to give my kidney and my
friend has kidney disease intheir family.
I'd like a pledge go to them ifthey come up in the future of
needing a kidney.
(21:55):
So this would allow a donor toname up to five individuals who
do not have kidney disease priorto donation, but this would
protect them should one of thosefive named friends or loved
ones need a kidney in the future.
Speaker 2 (22:10):
Sue, do you have somebody who talks donors
through this so that they fullyunderstand how it works, what it
means and who could potentiallybenefit from this in the future
?
Speaker 1 (22:22):
Absolutely so.
Elizabeth Sherrill is ourdesignated donor protect
coordinator and she is alwayshappy to sit down and talk with
a donor if they have questionslike what is my eligibility?
What if you know what's thebest pledge for me to have and
how would you advise me?
(22:43):
I mean, and she would adviseyou not only on the kidney
pledges but also, like the homeadvantage, pet care, any
questions that you may have.
She reaches out to thetransplant center that that
donor's at and she will workwith the social worker or the
transplant coordinator just tomake sure that all I's are
dotted and T's are crossed.
(23:03):
She probably knows before I dothat that donor has donated
because she's on it and she hassuch a special relationship with
these donors that I've actuallyseen Elizabeth create
friendships with these donorsthat have stayed in touch with
her.
Speaker 2 (23:21):
That's incredible.
And then you have one lastthing which I just think is
hugely important, and it'scalled the kidney promise.
Before I ask you to explainwhat it is, I feel like kidney
pledges, vouchers, kidneypromises.
I'm guessing, and I'd love foryou to tell me if I'm wrong, but
(23:42):
I'm guessing that these aren'tthings that people actually end
up using.
However, I mean, I'm sure theadvanced donation pledge people
use that right, but the kidneypledge for friends and family
and the kidney promise, theyfeel like a benefit that I would
get as a donor that make mefeel safe.
(24:03):
But I'm probably never going touse them, but it still feels
really good to have them offeredto me.
Is that true?
Speaker 1 (24:10):
Yes, and it's like an insurance policy.
You know the chances are thatthey probably will never use
them, but they feel like cause.
You hear time and time again Iwould donate my kidney to
somebody, but I don't know if mychild will need one in the
future or if my parent will needone or my friend, and so we
want to alleviate that concernfor them.
(24:31):
And the APKD will stand by ourword that if you donate, we're
going to do everything in ourpower to protect your loved one.
And through that we have threedifferent pledges that you can
choose from, whatever one thatfits your needs.
And how can we do that?
And we also like the kidneypromise.
(24:52):
We want to protect that donor,god forbid and we only take the
best of the best to be a kidneydonor.
I mean there is quite a bit ofmedical workup that goes into
seeing if you're a suitablecandidate to donate.
Right, we don't want to takerisks on you psychologically,
physically.
So we do thorough workups tomake sure that you're in prime
(25:16):
condition and we are youradvocate.
We are not the recipient'sadvocate at that point.
Transplant centers they want toprotect the donors and they
should protect the donors.
And so the kidney promise is,lori, if you would ever.
You know you donated a kidneyand I think society should pay
(25:38):
you back.
God forbid that you ever havekidney disease and have to go on
dialysis.
You should have a priority togetting a kidney, and so that's
part of our mission is toprotect donors and recipients,
to make sure that everybodyreceives the greatest advantage
for their good.
Speaker 2 (25:56):
And I know that, no matter where you donate, if you
ever need a kidney yourself,that you're promised to be
prioritized and you essentiallygo to the top of the list.
But that's for a deceased donorkidney, yep, and you and I know
that a living donor kidney isbetter.
So because they last typicallytwice as long.
So what I like about this is isthat you know you're talking
(26:19):
about putting into society orgiving to society.
If you're giving society aCorvette and then one day you
need a car, it would be nice toget a Corvette back versus a
Corolla, exactly.
A Corolla is great, right.
So these donor kidneys, they'regreat, but this really offers
(26:40):
the donor kind of the same thingthat they not kind of.
It provides the donor to getback what they put in in the
rare, rare, rare case scenariothat that's needed one day.
Speaker 1 (26:53):
Yeah, exactly, and they should be protected.
Speaker 2 (26:56):
Well, thank you for protecting donors.
You guys do an amazing job.
Speaker 1 (27:00):
Oh well, it is truly a blessing it is.
It's really God's gift to me.
I never thought I would be intransplant.
You know, as a nurse I thoughtI'd be in pediatrics and NICU
and that's where I started outand by the grace of God, I fell
into transplant and I've neverlooked back because, you know, I
(27:24):
don't think there's a lot ofpeople out there that can say I
really have a hand in givingsomebody a second chance at life
.
And and for me, you know I thinkyou know this story, lori that
my dad had a glioblastoma when Iwas in my young twenties and I
set out to be a social worker,and at that point I was.
(27:47):
But then when my father fell ill, when his oncology doctor came
in and said, jerry, I'm sorry,there's just nothing else that
we can do, and I think youshould go home and spend as much
time with your family as youpossibly can, and it was just
(28:09):
devastating news to hear, but Icry every time I'm saying this.
His nurse walked in shortlyafter the oncologist left and my
goodness, I'll never forget theway she held his hand, the way
she looked at him and the way helooked back at her and I
(28:33):
thought I want to be that forsomebody.
And although my dad received adaughter's love and comfort, it
was the nurse's love and hopethat she gave him that.
I said I'm going to be that forsomebody.
And so, as I sit here and crythinking about it, I get to be
(28:55):
that you do.
I get to help give secondchances.
So, yes, so sorry for the tearsI get all ch get up every time.
Speaker 2 (29:04):
Well, and your story?
I've heard the story from youbefore, sue, and it always makes
me teary too, and cause I thinkabout you know my dad's story,
and my dad got a second chance,yeah, and I'm so sorry that your
dad didn't.
But you've created a life wherewhere you're giving everybody
(29:25):
that you work with around you adifferent outcome than the one
you got.
And if that's not makinglemonade out of lemons, I don't,
I don't know what is.
I mean, that's gotta be, it'sgotta be healing for you to be
able to do that.
Speaker 1 (29:43):
Absolutely, and you in my young 20s, and no matter
where anybody is spiritually, Ithink there are little winks
that we get and either we canchange the path we're on or go
straight forward.
And I'm so grateful that Ilistened to and saw that wink,
because I changed my path andlook where I'm at.
I'm friends.
Grateful that I listened to andsaw that wink because I changed
(30:03):
my path.
And look where I'm at.
I'm friends with Lori Lee, Imean.
I'm friends with Lori Lee andI'm friends with.
Lori.
Speaker 2 (30:12):
Well, thank you for sharing that, and thank you so
much for sharing with ouraudience more about the Alliance
for Paired Kidney Donation.
I am so glad that we took thetime to redo this, because it
felt so good to dive into eachone of these and give them the
attention that they deserve,because you're doing so much for
donors and in doing that fordonors, you're doing so much for
(30:34):
the patients.
So thank you from the bottom ofmy heart for all you do.
Speaker 1 (30:39):
Oh, and thank you, lori.
I mean you are just I can't sayenough good about you and you
know your mission in life tohelp others.
You know to donate to receivethis podcast or reach people
that don't have enough supportor education to know enough
about it.
You're helping lead theindustry and I really admire you
(31:00):
.
Speaker 2 (31:00):
Well, I admire you too, and thank you for being a
part of what I'm trying to dohere.
You've been a lot of fun towork with Sue.
Speaker 1 (31:07):
Well, I'm your biggest fan.
Well, rob's your biggest fan,and then probably your parents,
but I'm close up there.
I will tell you.
All right, my friend, you havea lovely day.
Speaker 2 (31:17):
You too.
Take care, sue.
Thank you, bye-bye, bye, sue.
Thank you, bye Bye.
If you'd like to learn moreabout donor protector, the
Alliance for paired kidneydonation, check out the show
notes for links and resources.
I'd like to give a huge thankyou to my editor, rob Lee, for
sticking with this podcastthrough three full seasons.
I really couldn't do it withouthim.
I'll be back this fall withmore incredible stories, so
(31:40):
don't forget to subscribe to getnotified when season four drops
.
You can also join theconversation on Facebook by
searching Donor Diaries Podcast.
This season of Donor Diaries wasproudly sponsored by GiftWorks,
an organization dedicated toempowering organ recipients and
living donors through education,advocacy and support.
(32:00):
By helping patients share theirjourney and connect with donors
, gift works is transforminglives, one transplant at a time.
Learn more at yourgiftworkscom.
Thanks so much for listeningand remember every act of
kindness creates ripples.
Keep spreading those positivevibes and we'll see you in the
fall.
This is Lori Lee signing off.
(32:21):
I just want to feel thesunshine.
I share this life with you.
I share this life with you.
(32:51):
I share this life with you, you.
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