November 1, 2024 • 31 mins
What would compel an American living in Germany to navigate a labyrinth of legal and cultural barriers to donate a kidney to a stranger? Join us as we uncover the incredible story of Will Johnson, whose altruistic journey sheds light on the stark contrasts between organ donation practices in the US and Germany. In this episode, recorded in a charming house near Munich, we reveal Germany's current regulations surrounding kidney exchange and the low rates of living donations that Will encountered in his quest to give the gift of life.
Embark on a transatlantic journey with us as we explore the emotional and logistical hurdles Will faced, from initial inspiration to the surprising medical discoveries along the way. Hear about the practical steps of coordinating evaluations across borders, and the varied reactions from peers and workplaces in Germany. Through Will's story, we gain a deeper understanding of the personal sacrifices and triumphs that come with kidney donation, highlighting the incredible impact of what happens when we choose to love a stranger.
Will shares: “I’ve been the recipient of much kindness and generosity throughout my life and have been blessed with good health. It felt like the right time to give back. When I learned about altruistic kidney donation, I knew without a doubt this was the perfect opportunity to do something meaningful.”
Living Kidney Donation in Germany
Global Observatory on Donation
From Germany to America: A Living Kidney Donor Story | National Kidney Foundation
Facts and myths about altruistic organ donation | Nephrology Dialysis Transplantation | Oxford Academic
Market Design Blog | Al Roth
Market Design Blog (second article) | Al Roth
Berlin Kidney Exchange Article
Living Organ Donation Donor Rate Statistics
Connect with Laurie Lee
GiftWorks
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):
Welcome to Donor Diaries, a podcast that explores
how people are changing livesthrough the powerful act of
living donation.
Tune in to discover howkindness, love and simple acts
of giving are transforming livesevery day.
Welcome back.
(00:26):
This is your host, lori Lee.
Today's episode features aninspiring story from Will
(00:48):
Johnson, an Americannon-directed kidney donor who's
a resident of Germany.
Will was faced with legalobstacles that initially
prevented him from donating akidney to a stranger.
His remarkable journey shedslight on the challenges and
triumphs of navigating the legallandscape of organ donation
abroad.
(01:08):
Will and I are actually inGermany right now, which, I'm
pretty sure, officially makesthis an international podcast.
We've been exploring Germany'sevolving kidney exchange system
via email over the past month,and it's actually proven to be a
really interesting time torecord this podcast, because the
landscape is changing soquickly and also because I don't
(01:28):
read German.
As you can imagine, in manyeconomically advanced and
progressive countries, organexchange practices are at the
forefront of medical innovations, but Germany isn't among these
countries.
Germans have so many morelimitations than Americans when
it comes to living donation.
This is due to concerns aboutpotential risks associated with
(01:51):
kidney exchange, fear of organtrafficking and fear of
psychological pressure on donors.
Fortunately, germany is on theverge of implementing a new
model designed to improve matchrates and reduce waiting times
through innovative mechanismsthat we in the US.
A new model designed to improvematch rates and reduce waiting
times through innovativemechanisms that we in the US are
totally accustomed to, likedomino chains.
They're also trying to loosensome strict rules they currently
(02:14):
have regarding paired exchange.
Join us as we delve into howthese advancements are set to
transform the kidney donationprocess in Germany and hear from
Will about his impactfulcross-border donation.
All right, we're recording,okay.
And we're going to hear soundsof Germany in the background,
because I already hear them.
Awesome, should we start withthis sound?
Speaker 2 (02:36):
Yes, my favorite sound in Germany Cheers Cheers.
You know what they say inGermany Prost, prost, cheers,
cheers, you know?
Speaker 1 (02:45):
what they say in Germany Prost Good stuff.
Yes, well, welcome to DonorDiaries.
Speaker 2 (02:49):
Thank you so excited to have you here.
Good to be here.
Speaker 1 (02:52):
So you want to tell them where we are right now.
Speaker 2 (02:54):
Yes, we're in a really charming house just
outside of Munich, a couplehours from where I live in
Stuttgart.
It's a beautiful, sunny day.
Speaker 1 (03:01):
Bavarian Alps, not too far from here, right, right,
do you want to share how youand I came to know each other,
to be having a beer together?
Okay.
Speaker 2 (03:10):
I'm not sure if it was around May, late April,
Anyway, I found out about apodcast that talked about organ
transplant and organ donation.
And it just happened to be yourpodcast and I listened to it a
few times and really liked itand it kind of resonated with me
.
Having donated myself, I wasinterested in what other people
experienced, but I didn't haveany way of talking to anybody
(03:33):
about it.
So I stumbled across yourpodcast, really liked it and
just thought you should knowthat people were enjoying it.
Speaker 1 (03:40):
And I don't have a lot of clicks in Germany, but I
do have some, so I'm guessingall of my listeners are here
with us right now in Germany.
Probably.
We all fit in this one room wedo, but to explain what you mean
when you say that you don'thave anyone here to talk about
your experience with livingdonation.
Speaker 2 (03:57):
First, of all.
Actually, I know one person whodonated a kidney to his cousin
many years ago, but I certainlydon't know anyone in Germany
who's done it.
It just doesn't seem like avery big thing in Germany living
donation.
If you bring up the subject ofdonating organs, people think
immediately of deceased donationand the way in the US you might
(04:20):
have on your driver's licensesomething saying that you're an
organ donor.
There's sort of a card likethat here.
So I think when you hear organdonation over here, that's kind
of what you think of.
Speaker 1 (04:31):
Tell us a little bit about deceased donation over
here.
Speaker 2 (04:34):
In Germany.
If you want to be an organdonor when you die, you have to
sign up for that.
You register somewhere, theysend you a card and you carry it
with you.
It says you're an organ donor.
You register somewhere, theysend you a card and you carry it
with you.
It says you're an organ donor.
If you don't want to, you don'thave to do anything.
But a lot of people they don'tthink this is the right approach
to take that a lot of peoplemight be interested, they might
(04:55):
be interested in donating, butthey just don't have the time.
They don't get around tofilling out a card or applying
for it.
So what you have is not thatmany, not a high percentage of
donors.
I think I read an articlesomewhere or listened to a
podcast here that said maybe 81%of the people here are
(05:15):
interested in donating afterdeath, but only 44% have
officially registered to do that.
So that's quite a discrepancy.
Speaker 1 (05:23):
yeah and um it's actually super similar in the us
our numbers are really similarto the number of people who say
yes, it's the right thing to do,versus the number of people who
actually sign their driver'slicense some people here who are
disappointed in that wouldrather see a higher rate.
Speaker 2 (05:39):
They point to spain.
In spain they have some opt-outsolution.
So basically, when you die theywill use your organs, unless
you explicitly say that youdon't want that.
And there's some Germans herewho think they should introduce
that system here and that theburden should be on you if you
don't want to donate to opt-out.
That's been put to vote a fewtimes but it's never gotten
(06:02):
through Officially.
You still have to opt in.
Speaker 1 (06:07):
So people who are getting kidneys here are getting
almost exclusively deceaseddonor kidneys right.
So your system relies ondeceased donors.
Speaker 2 (06:16):
Right, right, and you asked before about the
landscape here.
Living donation is possible,but it's pretty restricted
compared to the way it is in theUS and basically whoever you
donate to has to be a familymember.
They're willing to make anexception if you prove that you
have a strong personalrelationship with someone, but
(06:38):
for practical purposes it'spretty much limited to family
right now.
There aren't a whole lot ofdonations, a lot of living
donations happening here.
Speaker 1 (06:48):
So if you need a kidney, you have to not just
find somebody who's willing andable to donate, you have to find
somebody who is a match to you.
Yeah, and the chance of that islow.
Speaker 2 (07:01):
Yeah, yes, yes, so that's quite different here and
it just so happens there's awoman here who's sort of tried
to introduce that concept hereand, as I told you before the
requirement the German lawrequires that if you're not
family, you have to have a closerelationship with someone.
So this woman her name isSusanna Reitmeyer.
(07:23):
She's very interested in thisbecause her daughter needed the
kidney transplant and she gother first one from her father
and then, about 20 years later,when she was in her early 30s,
it failed and she needed asecond one and her family didn't
know anyone here who coulddonate.
Actually, they had an aunt whowas willing to donate, but it
just wasn't a match.
So they ended up going to Spainto do this and they were part
(07:45):
of a six person kidney chainthere.
Anyway, susanna was quitefrustrated with the state of
affairs in Germany, so shedecided to lobby for better
rules in that regard, and so sheworks together with a woman
who's a mathematician and theytry to match donors with
recipients over here.
(08:06):
But even if they find a match,it's not enough because they
still have to meet thiscriterion of being having a
close personal relationship.
So she finds pairs who arewilling to donate and sort of
introduces them and they sort oftake it from there and do
things together, have someactivities together, and the
(08:27):
idea is that at some point theycan satisfy this requirement of
being having a close personalrelationship so she's kind of
got like a dating service forpeople who need kidneys right
and how has that worked out forher?
Speaker 1 (08:40):
I, is she successful in finding?
Helping people make a pairedexchange.
Speaker 2 (08:46):
Yes, she has been.
I mean, I think she's beendoing this for years, or got the
ball rolling seven or eightyears ago, but since 2020, she's
helped facilitate foursuccessful paired exchanges and
there are three other pairsright now who are in the
evaluation stage.
So, I mean, these are peoplewhose lives were transformed by
(09:07):
her efforts and that's a goodthing.
But she's a great advocate andI talked to her recently and
she's very hopeful that the lawin Germany will change so that
this will no longer be necessarythis sort of matchmaking role
that she has.
Speaker 1 (09:23):
I mean, why doesn't somebody just make an app for
that?
I mean, a dating app isrelatively simple.
It's been done before.
It's a business model thatworks to bring people together
based on certain attributes.
Why don't you think Germany hasa dating app for this yet?
Speaker 2 (09:36):
That's a good question you should make one.
Yeah Well, if I knew what I wasdoing with computers I would.
But they seem to take quite acautious approach and I think
once this type of donation isallowed and the rules are
loosened a bit, I think you'llsee more creativity in that way.
But for now it's very, verymuch by the book and I think
(10:00):
Susanna was quite frustratedwith the slow progress.
So hopefully that's somethingthat will change.
Speaker 1 (10:06):
Wow.
What questions does thetransplant center ask to people
who want to do a paired exchangeto determine one way or another
if they know each other wellenough?
Speaker 2 (10:17):
Yeah, that's a good question.
I think the main thing is justthey want to know if they've
been hanging out and if they'vebeen doing stuff together.
But still, I know they can sayno, they can say we're not
convinced that you know eachother well enough, but it just,
yeah, it seems kind of silly atthe end of the day.
Speaker 1 (10:34):
I think there's actually advantages to not
knowing who your recipient is.
There's less baggage.
There's less potential forconflict.
Speaker 2 (10:43):
Yes, absolutely Absolutely.
That's a good point.
When I spoke with Susanna aboutthis, she said that if you can
be matched to someone who'sreally appropriate, often that
kidney will work better for youthan it would if you got it from
a family member.
You can cast a net that's wideenough.
You can find someone whosekidney matches even better than
maybe your own mother or yourbrother or your cousin.
(11:05):
That's something that was newto me.
That's a very good point totake into consideration.
Speaker 1 (11:12):
So when we think about countries who are doing
well with transplant, they'reoften developed countries with
money right, and so I waswondering where Germany would
fall on that, and I wassurprised to learn that Turkey,
saudi Arabia, israel and theNetherlands are all doing living
organ donation at a higher ratethan the United States.
(11:34):
The United States is fifth inthe world.
This list goes all the waythrough, like more than a dozen
countries, and Germany's nothere.
Like Germany doesn't make thelist anywhere.
So how long have you lived here, will?
Speaker 2 (11:50):
About 28 years Okay.
Speaker 1 (11:52):
So you're essentially German, and they lost out on
your kidney.
Speaker 2 (11:56):
They sure did.
Speaker 1 (11:58):
So tell us a little bit about how kidney donation
came onto your radar and what'shappened to your story.
Speaker 2 (12:05):
A few years ago I started to get interested in
ways to help people, maybealtruistically often it's
donations and things like thatand somehow I stumbled across
this in an article or a podcast,that you could literally give a
kidney to a stranger.
And I did a double take when Iheard that, and the more I
(12:27):
looked into it, the more itappealed to me and I knew we had
two kidneys, but I didn't knowwe only need one generally, and
so that was kind of interestingto know.
Hey, you can donate a kidneyand still live a normal life.
But pretty quickly I found out,you know, like I wouldn't be
able to do it in Germany.
I found out that it had to be arelative or someone very close
to me.
I didn't know anyone.
Speaker 1 (12:48):
Where'd you get that info?
Was it like on a transplantwebsite?
Speaker 2 (12:51):
It's actually on it's in the law.
So I looked up the law.
The reference was made to thisprovision and it's in the law.
So I looked up the law, thereference was made to this
provision and it's pretty clearthere.
So then I kind of thought, youknow, maybe I can do this in the
US Germany I have six weeks ayear vacation here.
Maybe somehow I can I could,you know, work it out and do it.
So I contacted the NationalKendi Foundation in the US and
(13:12):
found out that there was atransplant center pretty close
to where my parents live, justoutside of Portland, oregon, and
there was a transplant centerin Portland.
So I sort of thought like, hey,wouldn't that be neat if I
could do this and do this athome and have my parents kind of
take care of me and help nurseme back to health.
So yeah, that's how it kind ofthat's my my plan got started.
Speaker 1 (13:37):
So were you like mom and dad, I'm coming for a month.
Yeah, you're going to have tofeed me in bed, yeah pretty much
they were excited.
Speaker 2 (13:46):
I mean, it was still, it still seemed kind of like a
dream to me and I just I didn'twant to get too excited.
I just thought like, ah, maybethis won't really happen.
This would be too good to betrue.
But anyway, it was something Istarted to focus on.
Speaker 1 (14:00):
Just for context.
How did you end up in Germanyin the first place?
What are you?
50-ish, yes, so you've beenhere since you were almost 30
years.
Speaker 2 (14:09):
Yeah, so back in 1990 , 91, my parents, we hosted a
German exchange student.
Speaker 1 (14:17):
He was a great young man.
Speaker 2 (14:18):
A couple of years later I visited him.
He lived in Hamburg and Ireally liked it over here and so
that was kind of in my mind andI studied philosophy in college
, which I really liked, but it'snot always the easiest thing to
study if you want to get a job.
Speaker 1 (14:33):
I have a wildlife biology degree.
I don't know what you'retalking about Okay, good.
Speaker 2 (14:37):
So anyhow, when I was finished with my studies I
wasn't quite sure what I wantedto do and my brother told me
that I could actually teachEnglish over here without being
able to speak German.
So that kind of appealed to me.
I thought, hey, that'd be fun.
I could maybe learn German thenjust sort of broaden my
horizons.
So I decided to do that and Iended up getting a job as an
(15:00):
English teacher at a languageschool in early 1996 and really
thought I would just stay acouple of years and then go back
home.
And two years turned into fiveyears and that turned into 10
years and at some point Istarted working as a translator.
Speaker 1 (15:15):
So going back.
So you figured out quickly thatit was illegal for you to
donate your kidney.
Speaker 2 (15:20):
Right.
Speaker 1 (15:21):
So your next step was figure out if you could do it
in the US.
You contacted the NationalKidney Foundation and you told
me you went through a goodeducation program.
Speaker 2 (15:30):
Right, they had some videos that I watched and it
kind of informed me a little bitabout the process and what
they're looking for and how itworks.
That was good.
And then when I was done withthat, someone emailed me out of
the blue, sort of like my mentor.
She donated herself andencouraged me to ask questions,
just kind of asked me aboutmyself and what my motivation
(15:51):
was, which was nice, becausethen I had someone who had kind
of been through it and who so Icould ask questions and she had
told me that she donated akidney to her cousin and it was
about it was about 10 years agoand she was doing great and her
cousin was doing great and thatjust that encouraged me and it
just sort of reinforced my ideathat I wanted to do this.
(16:14):
And it was good to hear fromsomeone who had had such a
positive experience.
Speaker 1 (16:18):
That's amazing.
And then what did yourevaluation look like?
I mean, is that something youcould do remotely and get your
you know medical tests faxedover there, or something?
Speaker 2 (16:29):
Okay.
So at some point they weregoing to need to see me like in
the U?
S.
But the preliminary stuff, theysaid it'd be okay, this
transplant center I kind ofworked with in Portland.
Speaker 1 (16:39):
They said look if you can get some tests done at your
local.
Speaker 2 (16:42):
You know your primary care physician and we'll see
some stuff and we can work withthat.
I said so that that was finewith me, and I was a little bit
apprehensive about telling my mydoctor here because I didn't
know how she would react,because it's actually illegal.
You know what I wanted to dodonate, you know, a kidney
anonymously, non-directed well,illegal here, right right, not
(17:05):
in the.
US.
But I was sort of afraid.
You know people here, they'revery cautious and some friends
said well, maybe if you, if youdo that in the US and you have
issues, they won't treat youhere because you were doing
something you shouldn't havedone and maybe you should keep
it a secret.
But I just I didn't want to dothat.
I wanted my doctor here to know.
But fortunately she was reallysupportive and said hey, that's
(17:28):
a great thing, and in Germany weneed to get with the time.
So I appreciated that.
Speaker 1 (17:33):
But anyway, I had some blood tests done here.
Speaker 2 (17:35):
So I appreciated that .
But anyway, I had some bloodtests done here and my living
donor coordinator in the USasked me if I could just mail
that, email that to them.
And I did and he said theywould look at it.
You know, with the donor teamand I was a little bit surprised
.
Speaker 1 (17:53):
See, we're really in Germany, yeah, I know it's okay,
other people are around here.
Speaker 2 (17:56):
So anyway, I was a little surprised when I heard
back from them and mycoordinator said your EGFR is a
little lower than what we'd liketo have and so we don't think
it would be safe for you todonate.
And so that was sort of that.
I was surprised to hear that Ithought of myself as being
pretty healthy.
Are you a runner?
(18:17):
I am, and fairly lean.
And so yeah, I was just kind ofthought I was in good shape so I
just was sort of surprised.
But then I did a littleresearch and started looking
into this EGFR and that it'srelated to your creatinine and
you want your EGFR to be highand your creatinine to be low,
(18:37):
and so I looked into someinformation about maybe what
could have been that cause, whatcould have caused my creatinine
to be a little bit higher andresulted in my EGFR being low.
And so some of the things theysaid is you know you shouldn't
eat too much protein and morefruits and vegetables and
certain things.
So anyway, I just thought, well, let me see if I can, I can
(19:00):
improve this.
I'm going to eat and drink veryclean and I'm not going to.
Another thing was like if you doexercise before you get this
tested, it can cause yourcreatinine level to go up.
So I definitely.
I think I went for a run rightbefore I did my previous test,
so I decided I wasn't going to.
I was going to take it reallyeasy the night before the
(19:21):
morning up.
Speaker 1 (19:22):
You weren't going to go for a run, eat a steak and
then go.
Speaker 2 (19:27):
Exactly.
So yeah, I executed my plan.
I went there and in a few daysI got the results back and I saw
that my EGFR was now highenough and it was really
exciting to hear that.
And so then I touched base, Ishared the good news with the
team in the US and my livingdonor coordinator there passed
(19:47):
on the information and I wassort of back in the running.
And then the next step was toschedule the more vigorous,
thorough testing which you haveto do before you officially
become a donor.
And in my case I knew that if Idonated, if I was approved, I
wanted to do that aroundChristmas time, just because
that would be easiest for myvacation.
So the testing would besometime in October, and Living
(20:10):
Donor Coordinator David was ableto schedule some testing in
mid-October, basically withinone week.
So that was the next steptaking a trip to the US so I
could go through this rigoroustesting.
Speaker 1 (20:21):
Interesting, so you went in October for testing.
When did you end up donatingRight?
So I did that in.
Speaker 2 (20:27):
October.
They informed me in earlyNovember that everything was
okay and that they would acceptmy offer, and they scheduled my
donation date for December 19th,which was perfect, basically
right before Christmas, whichwas what I had hoped for all
along, because my idea was thatthen I could use vacation from
this year and next year.
I was told that I would need tobe there for almost a month or
(20:50):
so.
They would want to check on meand make sure I was doing okay
before I went back to work orwent back, came back to Germany.
Speaker 1 (20:55):
So you get six weeks off working here, and then you
were kind of coordinating ofI'll put two weeks on 2023, two
weeks on 2024.
Speaker 2 (21:04):
Right, right, that was my plan.
Speaker 1 (21:06):
And then what actually ended up happening in
terms of taking time off to dothis?
Well, what?
Speaker 2 (21:11):
actually happened was really good.
Someone at my work who was sortof responsible for filing my
vacation.
I was just going to kind of eatthose days, those two weeks, so
that I would still have somevacation left over.
But this woman her name isSonia she contacted me.
She said look, maybe you cantry to call the health insurance
(21:33):
fund here and just see.
Maybe they will just considerthis to be sick days.
You know, that's how it is forGermans who donate they don't
have to take it from theirvacation.
But because I wasn't donatingto a family member, I was
donating to a stranger andthat's not covered in their law.
Speaker 1 (21:47):
I thought yeah, illegally.
Speaker 2 (21:48):
I thought I was kind of afraid that wouldn't happen,
but I said OK.
I'll try, it won't hurt.
They looked up some informationand basically they said look,
we think this is covered.
So if you can just give us asick note from your doctor, from
your surgeon, saying you knowwhy you can't work, you know
what happened to you, you gave adonation and how long you need
off, we'll cover it.
(22:08):
And sure enough, that's whathappens.
I didn't have to take vacationfrom the time that I actually
donated until I went back towork over here.
They didn't count against myvacation.
So that was great.
Speaker 1 (22:20):
Wow.
Well, that's somethingGermany's doing better than the
United States, for sure.
Speaker 2 (22:24):
I can imagine.
Speaker 1 (22:25):
Yeah, I mean, it seems to be a major deterrent to
people who need to take timeoff work and can't, or it's a
hardship for them to do it, and,yes, there's different programs
to help get that reimbursed.
This makes it feel like how itshould feel.
Speaker 2 (22:39):
Yes, yeah, so no, I have.
I'm very grateful for that andhappy that they accepted that
and for them that was a goodreason to be written off six.
So, yeah, very, very happyabout that.
Speaker 1 (22:52):
What did your German peers think about what you were
doing?
That's a great question.
Speaker 2 (22:57):
I kind of got the whole range.
I mean, no one just came outand said you're crazy, but they
were very kind of reserved intheir responses.
They said wow, that's something, but they were kind of reserved
, as I said, about it.
Like some of them, I think, areskeptical a little bit, simply
(23:18):
because it's not allowed inGermany.
So they think, well, there mustbe a good reason for that In
Germany.
They don't.
You know, they're worried aboutcorruption and that connection.
And then some people they saidthey could imagine it or they
can understand if it was afamily member or someone.
I think it was hard for them tounderstand why I would want to
donate to a stranger, um, but Ithink for the most part it was.
(23:42):
It was positively received andpeople were complimentary and
they said, hey, that's that'simpressive that you want to have
something done to your body andit's not going to benefit you
physically.
Speaker 1 (23:53):
Do you feel like you were supported by your community
here?
Speaker 2 (23:57):
Yes, but I really I kept it.
The circle of people who knewabout it was pretty small, but
no one tried to talk me out ofit and so that was nice.
But it would have beeninteresting, you know, if I had
done this in the States, becausethere's so much more in place
already in the States and itwould be kind of interesting to
know.
I mean, as I mentioned before,I had this mentor, but that was
(24:22):
at a distance.
I have been able to, earlier inthe process, be in
communication with people orhave a connection to the
hospital and more people aroundme who knew about this.
Speaker 1 (24:37):
Do you know who received your kidney?
Speaker 2 (24:40):
No, and I was told as a non-directed donor that I
probably wouldn't know.
But if the person I did saythat it was okay if they wanted
to contact me for some reason.
So I was kind of hoping maybethat they would contact me and
then I would find out.
Oh, you know I'm doing well, soI don't know.
I just know that early in themorning the day after my surgery
(25:02):
it was flown transplanted intosomeone in Minnesota.
So that's kind of exciting andinitially I was really hoping to
hear who it was and how theywere doing, but the more time
that has elapsed since then, I'mkind of okay with not knowing.
I just I'm positive by natureand I just imagine that whoever
got it is really doing well andand feels like they have a new
(25:23):
lease on life.
So just thinking about that isis enough for me and I can
imagine I don't know what theperson is going through or their
family, and the most importantthing is that they're doing okay
and they're healthy and that'sfine.
Speaker 1 (25:37):
Yeah, I can relate to that for sure.
And did you know you can writethe recipient.
Speaker 2 (25:44):
I didn't know.
Speaker 1 (25:46):
Yeah, so you can and you give it to your.
David, that's your coordinator,right, right.
And David gives it to thetransplant coordinator of your
recipient.
Ah, okay.
And then that then he or shewill have the option to write
you back.
Okay, okay, that's interesting.
Well, I'll have to think aboutthat, and they may or may not do
that, right, yeah, no, that'sinteresting.
Speaker 2 (26:06):
I'll have to think about that.
Yeah, I have to think aboutthat, yeah, okay, my donation
was selfish because I wanted todo something good for someone
and having someone receive mykidney was a way for me to make
my dream come true.
So, yeah, I'll definitelycommunicate them and say, look,
it was an honor and it makes mefeel like I did something
worthwhile.
Yeah.
Speaker 1 (26:28):
Yeah, that's cool.
Speaker 2 (26:29):
Thanks for telling me that, even if they don't't
write back the point is to putthis person's mind at ease like
don't worry about anything yeah,I happily did this and that you
don't need to thank you.
Speaker 1 (26:37):
Yeah, you know and or you seem like you don't need a
yeah, no, no, no, yeah just justjust thank you for letting you
know me do something.
Speaker 2 (26:45):
Just, there are people out there who've been
dealt bad cards and they deservesome benefits and I've got,
I've had people giving me stuffmy whole life and you know I
haven't necessarily earned itand so, yeah, it's just a
privilege, you know, been ableto.
You know, not many people atthe end of the day have donated
kidneys, so it's kind of cool.
Speaker 1 (27:07):
It is, and I know that you think that you're
normal, but I do think it'sexceptional to leave your
country to do something likethis.
Because, that's, you know, Idon't know.
Speaker 2 (27:18):
That's a step up, yeah Of what, but it's kind of
fun that way.
Speaker 1 (27:23):
Yeah, it's an adventure, so for some of us,
this would be like a funadventure.
Once I saw this within my grasp, I'm going to be.
Speaker 2 (27:28):
I'm going to do this.
And it wasn't even just that,it was like the all the
correspondence and the logisticsand working all that, but it
but in some, in some ways I'mglad it happened like that, you
know.
Speaker 1 (27:39):
And you're equipped to do that because you're doing
that anyway in your whole life,yeah, yeah.
So, uh, I think that could behard for some people.
Speaker 2 (27:46):
Yeah for sure.
People yeah for sure For sure.
Definitely, I feel like apretty ordinary guy at the end
of the day, and a lot of peoplecould do this if they wanted to.
It's not, it's not.
It's not a big deal and there'snot a lot of pain and suffering
involved or time, even and andand you feel great after it.
You know, I feel it makes mefeel good to think about the
(28:08):
fact that I helped someone andum, you know, and I hope that
encourages people not just todonate but, I don't know, just
to do something kind for otherpeople who are less fortunate.
Speaker 1 (28:18):
Yeah, it doesn't need to be donating a kidney.
Speaker 2 (28:20):
Right.
Speaker 1 (28:21):
Just something.
Speaker 2 (28:23):
Yes, yeah, I kind of feel like if I had the most
boring life ever.
Hey, I donated a kidney tosomeone.
Speaker 1 (28:29):
That's pretty cool and he sat with this cool girl
in Germany and did a podcastwith her.
Speaker 2 (28:34):
I mean, it's only going to be downhill from here,
laurie.
Speaker 1 (28:39):
Well, I remember this as my first episode taking
Donor Diaries International, soI thank you for that opportunity
.
Speaker 2 (28:46):
Yeah, my pleasure, it's so awesome.
You know I've really enjoyedyour podcast, so it's it's like
a dream to be a part of it andtalk to you in person.
Speaker 1 (28:55):
Well, I feel the same .
It's gonna be a good night.
Speaker 2 (28:58):
Yeah, looking forward to it.
Speaker 1 (28:59):
Well, thanks for being my guest.
Speaker 2 (29:00):
Well, thanks for having me.
Speaker 1 (29:01):
Thanks for having me.
Speaker 2 (29:03):
You're welcome Come back soon.
Speaker 1 (29:05):
All right, we will do .
Will and I checked what thecurrent laws were since we
recorded this episode and wefound that the proposed changes
in the current system are robustand will likely go into effect
within the next year, led by aregulated national program to
facilitate paired exchanges.
There's a lot of updates to thecurrent system, including
(29:26):
enhanced donor protections, withmandatory psychological
counseling and independentevaluations by qualified mental
health professionals forprospective donors.
Germans will be able toparticipate in paired exchanges
without having to know the otherpair.
However, there are stillrequirements that would restrict
someone for becoming anon-directed donor, as you will
(29:48):
still be required to know yourintended recipient.
For more information, check outmy show notes.
This season of Donor Diaries isproudly sponsored by GiftWorks,
an organization dedicated toempowering organ recipients and
living donors through education,advocacy and support.
By helping patients share theirjourneys and connect with
(30:08):
donors, GiftWorks ensureseveryone feels supported
throughout the transplantprocess.
We're honored to partner with ateam that's transforming lives,
one transplant at a time.
To learn more, visityourgiftworkscom.
Remember every act of kindnesscreates ripples.
Thanks for listening and keepspreading those positive vibes.
(30:28):
This is Lori Lee signing offthe sunshine.
I just want to feel thesunshine.
I share this life with you.
I share this life with you.
Bye.
Welcome to Donor Diaries, a podcast that explores
how people are changing livesthrough the powerful act of
living donation.
Tune in to discover howkindness, love and simple acts
of giving are transforming livesevery day.
Welcome back.
(00:26):
This is your host, lori Lee.
Today's episode features aninspiring story from Will
(00:48):
Johnson, an Americannon-directed kidney donor who's
a resident of Germany.
Will was faced with legalobstacles that initially
prevented him from donating akidney to a stranger.
His remarkable journey shedslight on the challenges and
triumphs of navigating the legallandscape of organ donation
abroad.
(01:08):
Will and I are actually inGermany right now, which, I'm
pretty sure, officially makesthis an international podcast.
We've been exploring Germany'sevolving kidney exchange system
via email over the past month,and it's actually proven to be a
really interesting time torecord this podcast, because the
landscape is changing soquickly and also because I don't
(01:28):
read German.
As you can imagine, in manyeconomically advanced and
progressive countries, organexchange practices are at the
forefront of medical innovations, but Germany isn't among these
countries.
Germans have so many morelimitations than Americans when
it comes to living donation.
This is due to concerns aboutpotential risks associated with
(01:51):
kidney exchange, fear of organtrafficking and fear of
psychological pressure on donors.
Fortunately, germany is on theverge of implementing a new
model designed to improve matchrates and reduce waiting times
through innovative mechanismsthat we in the US.
A new model designed to improvematch rates and reduce waiting
times through innovativemechanisms that we in the US are
totally accustomed to, likedomino chains.
They're also trying to loosensome strict rules they currently
(02:14):
have regarding paired exchange.
Join us as we delve into howthese advancements are set to
transform the kidney donationprocess in Germany and hear from
Will about his impactfulcross-border donation.
All right, we're recording,okay.
And we're going to hear soundsof Germany in the background,
because I already hear them.
Awesome, should we start withthis sound?
Speaker 2 (02:36):
Yes, my favorite sound in Germany Cheers Cheers.
You know what they say inGermany Prost, prost, cheers,
cheers, you know?
Speaker 1 (02:45):
what they say in Germany Prost Good stuff.
Yes, well, welcome to DonorDiaries.
Speaker 2 (02:49):
Thank you so excited to have you here.
Good to be here.
Speaker 1 (02:52):
So you want to tell them where we are right now.
Speaker 2 (02:54):
Yes, we're in a really charming house just
outside of Munich, a couplehours from where I live in
Stuttgart.
It's a beautiful, sunny day.
Speaker 1 (03:01):
Bavarian Alps, not too far from here, right, right,
do you want to share how youand I came to know each other,
to be having a beer together?
Okay.
Speaker 2 (03:10):
I'm not sure if it was around May, late April,
Anyway, I found out about apodcast that talked about organ
transplant and organ donation.
And it just happened to be yourpodcast and I listened to it a
few times and really liked itand it kind of resonated with me
.
Having donated myself, I wasinterested in what other people
experienced, but I didn't haveany way of talking to anybody
(03:33):
about it.
So I stumbled across yourpodcast, really liked it and
just thought you should knowthat people were enjoying it.
Speaker 1 (03:40):
And I don't have a lot of clicks in Germany, but I
do have some, so I'm guessingall of my listeners are here
with us right now in Germany.
Probably.
We all fit in this one room wedo, but to explain what you mean
when you say that you don'thave anyone here to talk about
your experience with livingdonation.
Speaker 2 (03:57):
First, of all.
Actually, I know one person whodonated a kidney to his cousin
many years ago, but I certainlydon't know anyone in Germany
who's done it.
It just doesn't seem like avery big thing in Germany living
donation.
If you bring up the subject ofdonating organs, people think
immediately of deceased donationand the way in the US you might
(04:20):
have on your driver's licensesomething saying that you're an
organ donor.
There's sort of a card likethat here.
So I think when you hear organdonation over here, that's kind
of what you think of.
Speaker 1 (04:31):
Tell us a little bit about deceased donation over
here.
Speaker 2 (04:34):
In Germany.
If you want to be an organdonor when you die, you have to
sign up for that.
You register somewhere, theysend you a card and you carry it
with you.
It says you're an organ donor.
You register somewhere, theysend you a card and you carry it
with you.
It says you're an organ donor.
If you don't want to, you don'thave to do anything.
But a lot of people they don'tthink this is the right approach
to take that a lot of peoplemight be interested, they might
(04:55):
be interested in donating, butthey just don't have the time.
They don't get around tofilling out a card or applying
for it.
So what you have is not thatmany, not a high percentage of
donors.
I think I read an articlesomewhere or listened to a
podcast here that said maybe 81%of the people here are
(05:15):
interested in donating afterdeath, but only 44% have
officially registered to do that.
So that's quite a discrepancy.
Speaker 1 (05:23):
yeah and um it's actually super similar in the us
our numbers are really similarto the number of people who say
yes, it's the right thing to do,versus the number of people who
actually sign their driver'slicense some people here who are
disappointed in that wouldrather see a higher rate.
Speaker 2 (05:39):
They point to spain.
In spain they have some opt-outsolution.
So basically, when you die theywill use your organs, unless
you explicitly say that youdon't want that.
And there's some Germans herewho think they should introduce
that system here and that theburden should be on you if you
don't want to donate to opt-out.
That's been put to vote a fewtimes but it's never gotten
(06:02):
through Officially.
You still have to opt in.
Speaker 1 (06:07):
So people who are getting kidneys here are getting
almost exclusively deceaseddonor kidneys right.
So your system relies ondeceased donors.
Speaker 2 (06:16):
Right, right, and you asked before about the
landscape here.
Living donation is possible,but it's pretty restricted
compared to the way it is in theUS and basically whoever you
donate to has to be a familymember.
They're willing to make anexception if you prove that you
have a strong personalrelationship with someone, but
(06:38):
for practical purposes it'spretty much limited to family
right now.
There aren't a whole lot ofdonations, a lot of living
donations happening here.
Speaker 1 (06:48):
So if you need a kidney, you have to not just
find somebody who's willing andable to donate, you have to find
somebody who is a match to you.
Yeah, and the chance of that islow.
Speaker 2 (07:01):
Yeah, yes, yes, so that's quite different here and
it just so happens there's awoman here who's sort of tried
to introduce that concept hereand, as I told you before the
requirement the German lawrequires that if you're not
family, you have to have a closerelationship with someone.
So this woman her name isSusanna Reitmeyer.
(07:23):
She's very interested in thisbecause her daughter needed the
kidney transplant and she gother first one from her father
and then, about 20 years later,when she was in her early 30s,
it failed and she needed asecond one and her family didn't
know anyone here who coulddonate.
Actually, they had an aunt whowas willing to donate, but it
just wasn't a match.
So they ended up going to Spainto do this and they were part
(07:45):
of a six person kidney chainthere.
Anyway, susanna was quitefrustrated with the state of
affairs in Germany, so shedecided to lobby for better
rules in that regard, and so sheworks together with a woman
who's a mathematician and theytry to match donors with
recipients over here.
(08:06):
But even if they find a match,it's not enough because they
still have to meet thiscriterion of being having a
close personal relationship.
So she finds pairs who arewilling to donate and sort of
introduces them and they sort oftake it from there and do
things together, have someactivities together, and the
(08:27):
idea is that at some point theycan satisfy this requirement of
being having a close personalrelationship so she's kind of
got like a dating service forpeople who need kidneys right
and how has that worked out forher?
Speaker 1 (08:40):
I, is she successful in finding?
Helping people make a pairedexchange.
Speaker 2 (08:46):
Yes, she has been.
I mean, I think she's beendoing this for years, or got the
ball rolling seven or eightyears ago, but since 2020, she's
helped facilitate foursuccessful paired exchanges and
there are three other pairsright now who are in the
evaluation stage.
So, I mean, these are peoplewhose lives were transformed by
(09:07):
her efforts and that's a goodthing.
But she's a great advocate andI talked to her recently and
she's very hopeful that the lawin Germany will change so that
this will no longer be necessarythis sort of matchmaking role
that she has.
Speaker 1 (09:23):
I mean, why doesn't somebody just make an app for
that?
I mean, a dating app isrelatively simple.
It's been done before.
It's a business model thatworks to bring people together
based on certain attributes.
Why don't you think Germany hasa dating app for this yet?
Speaker 2 (09:36):
That's a good question you should make one.
Yeah Well, if I knew what I wasdoing with computers I would.
But they seem to take quite acautious approach and I think
once this type of donation isallowed and the rules are
loosened a bit, I think you'llsee more creativity in that way.
But for now it's very, verymuch by the book and I think
(10:00):
Susanna was quite frustratedwith the slow progress.
So hopefully that's somethingthat will change.
Speaker 1 (10:06):
Wow.
What questions does thetransplant center ask to people
who want to do a paired exchangeto determine one way or another
if they know each other wellenough?
Speaker 2 (10:17):
Yeah, that's a good question.
I think the main thing is justthey want to know if they've
been hanging out and if they'vebeen doing stuff together.
But still, I know they can sayno, they can say we're not
convinced that you know eachother well enough, but it just,
yeah, it seems kind of silly atthe end of the day.
Speaker 1 (10:34):
I think there's actually advantages to not
knowing who your recipient is.
There's less baggage.
There's less potential forconflict.
Speaker 2 (10:43):
Yes, absolutely Absolutely.
That's a good point.
When I spoke with Susanna aboutthis, she said that if you can
be matched to someone who'sreally appropriate, often that
kidney will work better for youthan it would if you got it from
a family member.
You can cast a net that's wideenough.
You can find someone whosekidney matches even better than
maybe your own mother or yourbrother or your cousin.
(11:05):
That's something that was newto me.
That's a very good point totake into consideration.
Speaker 1 (11:12):
So when we think about countries who are doing
well with transplant, they'reoften developed countries with
money right, and so I waswondering where Germany would
fall on that, and I wassurprised to learn that Turkey,
saudi Arabia, israel and theNetherlands are all doing living
organ donation at a higher ratethan the United States.
(11:34):
The United States is fifth inthe world.
This list goes all the waythrough, like more than a dozen
countries, and Germany's nothere.
Like Germany doesn't make thelist anywhere.
So how long have you lived here, will?
Speaker 2 (11:50):
About 28 years Okay.
Speaker 1 (11:52):
So you're essentially German, and they lost out on
your kidney.
Speaker 2 (11:56):
They sure did.
Speaker 1 (11:58):
So tell us a little bit about how kidney donation
came onto your radar and what'shappened to your story.
Speaker 2 (12:05):
A few years ago I started to get interested in
ways to help people, maybealtruistically often it's
donations and things like thatand somehow I stumbled across
this in an article or a podcast,that you could literally give a
kidney to a stranger.
And I did a double take when Iheard that, and the more I
(12:27):
looked into it, the more itappealed to me and I knew we had
two kidneys, but I didn't knowwe only need one generally, and
so that was kind of interestingto know.
Hey, you can donate a kidneyand still live a normal life.
But pretty quickly I found out,you know, like I wouldn't be
able to do it in Germany.
I found out that it had to be arelative or someone very close
to me.
I didn't know anyone.
Speaker 1 (12:48):
Where'd you get that info?
Was it like on a transplantwebsite?
Speaker 2 (12:51):
It's actually on it's in the law.
So I looked up the law.
The reference was made to thisprovision and it's in the law.
So I looked up the law, thereference was made to this
provision and it's pretty clearthere.
So then I kind of thought, youknow, maybe I can do this in the
US Germany I have six weeks ayear vacation here.
Maybe somehow I can I could,you know, work it out and do it.
So I contacted the NationalKendi Foundation in the US and
(13:12):
found out that there was atransplant center pretty close
to where my parents live, justoutside of Portland, oregon, and
there was a transplant centerin Portland.
So I sort of thought like, hey,wouldn't that be neat if I
could do this and do this athome and have my parents kind of
take care of me and help nurseme back to health.
So yeah, that's how it kind ofthat's my my plan got started.
Speaker 1 (13:37):
So were you like mom and dad, I'm coming for a month.
Yeah, you're going to have tofeed me in bed, yeah pretty much
they were excited.
Speaker 2 (13:46):
I mean, it was still, it still seemed kind of like a
dream to me and I just I didn'twant to get too excited.
I just thought like, ah, maybethis won't really happen.
This would be too good to betrue.
But anyway, it was something Istarted to focus on.
Speaker 1 (14:00):
Just for context.
How did you end up in Germanyin the first place?
What are you?
50-ish, yes, so you've beenhere since you were almost 30
years.
Speaker 2 (14:09):
Yeah, so back in 1990 , 91, my parents, we hosted a
German exchange student.
Speaker 1 (14:17):
He was a great young man.
Speaker 2 (14:18):
A couple of years later I visited him.
He lived in Hamburg and Ireally liked it over here and so
that was kind of in my mind andI studied philosophy in college
, which I really liked, but it'snot always the easiest thing to
study if you want to get a job.
Speaker 1 (14:33):
I have a wildlife biology degree.
I don't know what you'retalking about Okay, good.
Speaker 2 (14:37):
So anyhow, when I was finished with my studies I
wasn't quite sure what I wantedto do and my brother told me
that I could actually teachEnglish over here without being
able to speak German.
So that kind of appealed to me.
I thought, hey, that'd be fun.
I could maybe learn German thenjust sort of broaden my
horizons.
So I decided to do that and Iended up getting a job as an
(15:00):
English teacher at a languageschool in early 1996 and really
thought I would just stay acouple of years and then go back
home.
And two years turned into fiveyears and that turned into 10
years and at some point Istarted working as a translator.
Speaker 1 (15:15):
So going back.
So you figured out quickly thatit was illegal for you to
donate your kidney.
Speaker 2 (15:20):
Right.
Speaker 1 (15:21):
So your next step was figure out if you could do it
in the US.
You contacted the NationalKidney Foundation and you told
me you went through a goodeducation program.
Speaker 2 (15:30):
Right, they had some videos that I watched and it
kind of informed me a little bitabout the process and what
they're looking for and how itworks.
That was good.
And then when I was done withthat, someone emailed me out of
the blue, sort of like my mentor.
She donated herself andencouraged me to ask questions,
just kind of asked me aboutmyself and what my motivation
(15:51):
was, which was nice, becausethen I had someone who had kind
of been through it and who so Icould ask questions and she had
told me that she donated akidney to her cousin and it was
about it was about 10 years agoand she was doing great and her
cousin was doing great and thatjust that encouraged me and it
just sort of reinforced my ideathat I wanted to do this.
(16:14):
And it was good to hear fromsomeone who had had such a
positive experience.
Speaker 1 (16:18):
That's amazing.
And then what did yourevaluation look like?
I mean, is that something youcould do remotely and get your
you know medical tests faxedover there, or something?
Speaker 2 (16:29):
Okay.
So at some point they weregoing to need to see me like in
the U?
S.
But the preliminary stuff, theysaid it'd be okay, this
transplant center I kind ofworked with in Portland.
Speaker 1 (16:39):
They said look if you can get some tests done at your
local.
Speaker 2 (16:42):
You know your primary care physician and we'll see
some stuff and we can work withthat.
I said so that that was finewith me, and I was a little bit
apprehensive about telling my mydoctor here because I didn't
know how she would react,because it's actually illegal.
You know what I wanted to dodonate, you know, a kidney
anonymously, non-directed well,illegal here, right right, not
(17:05):
in the.
US.
But I was sort of afraid.
You know people here, they'revery cautious and some friends
said well, maybe if you, if youdo that in the US and you have
issues, they won't treat youhere because you were doing
something you shouldn't havedone and maybe you should keep
it a secret.
But I just I didn't want to dothat.
I wanted my doctor here to know.
But fortunately she was reallysupportive and said hey, that's
(17:28):
a great thing, and in Germany weneed to get with the time.
So I appreciated that.
Speaker 1 (17:33):
But anyway, I had some blood tests done here.
Speaker 2 (17:35):
So I appreciated that .
But anyway, I had some bloodtests done here and my living
donor coordinator in the USasked me if I could just mail
that, email that to them.
And I did and he said theywould look at it.
You know, with the donor teamand I was a little bit surprised
.
Speaker 1 (17:53):
See, we're really in Germany, yeah, I know it's okay,
other people are around here.
Speaker 2 (17:56):
So anyway, I was a little surprised when I heard
back from them and mycoordinator said your EGFR is a
little lower than what we'd liketo have and so we don't think
it would be safe for you todonate.
And so that was sort of that.
I was surprised to hear that Ithought of myself as being
pretty healthy.
Are you a runner?
(18:17):
I am, and fairly lean.
And so yeah, I was just kind ofthought I was in good shape so I
just was sort of surprised.
But then I did a littleresearch and started looking
into this EGFR and that it'srelated to your creatinine and
you want your EGFR to be highand your creatinine to be low,
(18:37):
and so I looked into someinformation about maybe what
could have been that cause, whatcould have caused my creatinine
to be a little bit higher andresulted in my EGFR being low.
And so some of the things theysaid is you know you shouldn't
eat too much protein and morefruits and vegetables and
certain things.
So anyway, I just thought, well, let me see if I can, I can
(19:00):
improve this.
I'm going to eat and drink veryclean and I'm not going to.
Another thing was like if you doexercise before you get this
tested, it can cause yourcreatinine level to go up.
So I definitely.
I think I went for a run rightbefore I did my previous test,
so I decided I wasn't going to.
I was going to take it reallyeasy the night before the
(19:21):
morning up.
Speaker 1 (19:22):
You weren't going to go for a run, eat a steak and
then go.
Speaker 2 (19:27):
Exactly.
So yeah, I executed my plan.
I went there and in a few daysI got the results back and I saw
that my EGFR was now highenough and it was really
exciting to hear that.
And so then I touched base, Ishared the good news with the
team in the US and my livingdonor coordinator there passed
(19:47):
on the information and I wassort of back in the running.
And then the next step was toschedule the more vigorous,
thorough testing which you haveto do before you officially
become a donor.
And in my case I knew that if Idonated, if I was approved, I
wanted to do that aroundChristmas time, just because
that would be easiest for myvacation.
So the testing would besometime in October, and Living
(20:10):
Donor Coordinator David was ableto schedule some testing in
mid-October, basically withinone week.
So that was the next steptaking a trip to the US so I
could go through this rigoroustesting.
Speaker 1 (20:21):
Interesting, so you went in October for testing.
When did you end up donatingRight?
So I did that in.
Speaker 2 (20:27):
October.
They informed me in earlyNovember that everything was
okay and that they would acceptmy offer, and they scheduled my
donation date for December 19th,which was perfect, basically
right before Christmas, whichwas what I had hoped for all
along, because my idea was thatthen I could use vacation from
this year and next year.
I was told that I would need tobe there for almost a month or
(20:50):
so.
They would want to check on meand make sure I was doing okay
before I went back to work orwent back, came back to Germany.
Speaker 1 (20:55):
So you get six weeks off working here, and then you
were kind of coordinating ofI'll put two weeks on 2023, two
weeks on 2024.
Speaker 2 (21:04):
Right, right, that was my plan.
Speaker 1 (21:06):
And then what actually ended up happening in
terms of taking time off to dothis?
Well, what?
Speaker 2 (21:11):
actually happened was really good.
Someone at my work who was sortof responsible for filing my
vacation.
I was just going to kind of eatthose days, those two weeks, so
that I would still have somevacation left over.
But this woman her name isSonia she contacted me.
She said look, maybe you cantry to call the health insurance
(21:33):
fund here and just see.
Maybe they will just considerthis to be sick days.
You know, that's how it is forGermans who donate they don't
have to take it from theirvacation.
But because I wasn't donatingto a family member, I was
donating to a stranger andthat's not covered in their law.
Speaker 1 (21:47):
I thought yeah, illegally.
Speaker 2 (21:48):
I thought I was kind of afraid that wouldn't happen,
but I said OK.
I'll try, it won't hurt.
They looked up some informationand basically they said look,
we think this is covered.
So if you can just give us asick note from your doctor, from
your surgeon, saying you knowwhy you can't work, you know
what happened to you, you gave adonation and how long you need
off, we'll cover it.
(22:08):
And sure enough, that's whathappens.
I didn't have to take vacationfrom the time that I actually
donated until I went back towork over here.
They didn't count against myvacation.
So that was great.
Speaker 1 (22:20):
Wow.
Well, that's somethingGermany's doing better than the
United States, for sure.
Speaker 2 (22:24):
I can imagine.
Speaker 1 (22:25):
Yeah, I mean, it seems to be a major deterrent to
people who need to take timeoff work and can't, or it's a
hardship for them to do it, and,yes, there's different programs
to help get that reimbursed.
This makes it feel like how itshould feel.
Speaker 2 (22:39):
Yes, yeah, so no, I have.
I'm very grateful for that andhappy that they accepted that
and for them that was a goodreason to be written off six.
So, yeah, very, very happyabout that.
Speaker 1 (22:52):
What did your German peers think about what you were
doing?
That's a great question.
Speaker 2 (22:57):
I kind of got the whole range.
I mean, no one just came outand said you're crazy, but they
were very kind of reserved intheir responses.
They said wow, that's something, but they were kind of reserved
, as I said, about it.
Like some of them, I think, areskeptical a little bit, simply
(23:18):
because it's not allowed inGermany.
So they think, well, there mustbe a good reason for that In
Germany.
They don't.
You know, they're worried aboutcorruption and that connection.
And then some people they saidthey could imagine it or they
can understand if it was afamily member or someone.
I think it was hard for them tounderstand why I would want to
donate to a stranger, um, but Ithink for the most part it was.
(23:42):
It was positively received andpeople were complimentary and
they said, hey, that's that'simpressive that you want to have
something done to your body andit's not going to benefit you
physically.
Speaker 1 (23:53):
Do you feel like you were supported by your community
here?
Speaker 2 (23:57):
Yes, but I really I kept it.
The circle of people who knewabout it was pretty small, but
no one tried to talk me out ofit and so that was nice.
But it would have beeninteresting, you know, if I had
done this in the States, becausethere's so much more in place
already in the States and itwould be kind of interesting to
know.
I mean, as I mentioned before,I had this mentor, but that was
(24:22):
at a distance.
I have been able to, earlier inthe process, be in
communication with people orhave a connection to the
hospital and more people aroundme who knew about this.
Speaker 1 (24:37):
Do you know who received your kidney?
Speaker 2 (24:40):
No, and I was told as a non-directed donor that I
probably wouldn't know.
But if the person I did saythat it was okay if they wanted
to contact me for some reason.
So I was kind of hoping maybethat they would contact me and
then I would find out.
Oh, you know I'm doing well, soI don't know.
I just know that early in themorning the day after my surgery
(25:02):
it was flown transplanted intosomeone in Minnesota.
So that's kind of exciting andinitially I was really hoping to
hear who it was and how theywere doing, but the more time
that has elapsed since then, I'mkind of okay with not knowing.
I just I'm positive by natureand I just imagine that whoever
got it is really doing well andand feels like they have a new
(25:23):
lease on life.
So just thinking about that isis enough for me and I can
imagine I don't know what theperson is going through or their
family, and the most importantthing is that they're doing okay
and they're healthy and that'sfine.
Speaker 1 (25:37):
Yeah, I can relate to that for sure.
And did you know you can writethe recipient.
Speaker 2 (25:44):
I didn't know.
Speaker 1 (25:46):
Yeah, so you can and you give it to your.
David, that's your coordinator,right, right.
And David gives it to thetransplant coordinator of your
recipient.
Ah, okay.
And then that then he or shewill have the option to write
you back.
Okay, okay, that's interesting.
Well, I'll have to think aboutthat, and they may or may not do
that, right, yeah, no, that'sinteresting.
Speaker 2 (26:06):
I'll have to think about that.
Yeah, I have to think aboutthat, yeah, okay, my donation
was selfish because I wanted todo something good for someone
and having someone receive mykidney was a way for me to make
my dream come true.
So, yeah, I'll definitelycommunicate them and say, look,
it was an honor and it makes mefeel like I did something
worthwhile.
Yeah.
Speaker 1 (26:28):
Yeah, that's cool.
Speaker 2 (26:29):
Thanks for telling me that, even if they don't't
write back the point is to putthis person's mind at ease like
don't worry about anything yeah,I happily did this and that you
don't need to thank you.
Speaker 1 (26:37):
Yeah, you know and or you seem like you don't need a
yeah, no, no, no, yeah just justjust thank you for letting you
know me do something.
Speaker 2 (26:45):
Just, there are people out there who've been
dealt bad cards and they deservesome benefits and I've got,
I've had people giving me stuffmy whole life and you know I
haven't necessarily earned itand so, yeah, it's just a
privilege, you know, been ableto.
You know, not many people atthe end of the day have donated
kidneys, so it's kind of cool.
Speaker 1 (27:07):
It is, and I know that you think that you're
normal, but I do think it'sexceptional to leave your
country to do something likethis.
Because, that's, you know, Idon't know.
Speaker 2 (27:18):
That's a step up, yeah Of what, but it's kind of
fun that way.
Speaker 1 (27:23):
Yeah, it's an adventure, so for some of us,
this would be like a funadventure.
Once I saw this within my grasp, I'm going to be.
Speaker 2 (27:28):
I'm going to do this.
And it wasn't even just that,it was like the all the
correspondence and the logisticsand working all that, but it
but in some, in some ways I'mglad it happened like that, you
know.
Speaker 1 (27:39):
And you're equipped to do that because you're doing
that anyway in your whole life,yeah, yeah.
So, uh, I think that could behard for some people.
Speaker 2 (27:46):
Yeah for sure.
People yeah for sure For sure.
Definitely, I feel like apretty ordinary guy at the end
of the day, and a lot of peoplecould do this if they wanted to.
It's not, it's not.
It's not a big deal and there'snot a lot of pain and suffering
involved or time, even and andand you feel great after it.
You know, I feel it makes mefeel good to think about the
(28:08):
fact that I helped someone andum, you know, and I hope that
encourages people not just todonate but, I don't know, just
to do something kind for otherpeople who are less fortunate.
Speaker 1 (28:18):
Yeah, it doesn't need to be donating a kidney.
Speaker 2 (28:20):
Right.
Speaker 1 (28:21):
Just something.
Speaker 2 (28:23):
Yes, yeah, I kind of feel like if I had the most
boring life ever.
Hey, I donated a kidney tosomeone.
Speaker 1 (28:29):
That's pretty cool and he sat with this cool girl
in Germany and did a podcastwith her.
Speaker 2 (28:34):
I mean, it's only going to be downhill from here,
laurie.
Speaker 1 (28:39):
Well, I remember this as my first episode taking
Donor Diaries International, soI thank you for that opportunity
.
Speaker 2 (28:46):
Yeah, my pleasure, it's so awesome.
You know I've really enjoyedyour podcast, so it's it's like
a dream to be a part of it andtalk to you in person.
Speaker 1 (28:55):
Well, I feel the same .
It's gonna be a good night.
Speaker 2 (28:58):
Yeah, looking forward to it.
Speaker 1 (28:59):
Well, thanks for being my guest.
Speaker 2 (29:00):
Well, thanks for having me.
Speaker 1 (29:01):
Thanks for having me.
Speaker 2 (29:03):
You're welcome Come back soon.
Speaker 1 (29:05):
All right, we will do .
Will and I checked what thecurrent laws were since we
recorded this episode and wefound that the proposed changes
in the current system are robustand will likely go into effect
within the next year, led by aregulated national program to
facilitate paired exchanges.
There's a lot of updates to thecurrent system, including
(29:26):
enhanced donor protections, withmandatory psychological
counseling and independentevaluations by qualified mental
health professionals forprospective donors.
Germans will be able toparticipate in paired exchanges
without having to know the otherpair.
However, there are stillrequirements that would restrict
someone for becoming anon-directed donor, as you will
(29:48):
still be required to know yourintended recipient.
For more information, check outmy show notes.
This season of Donor Diaries isproudly sponsored by GiftWorks,
an organization dedicated toempowering organ recipients and
living donors through education,advocacy and support.
By helping patients share theirjourneys and connect with
(30:08):
donors, GiftWorks ensureseveryone feels supported
throughout the transplantprocess.
We're honored to partner with ateam that's transforming lives,
one transplant at a time.
To learn more, visityourgiftworkscom.
Remember every act of kindnesscreates ripples.
Thanks for listening and keepspreading those positive vibes.
(30:28):
This is Lori Lee signing offthe sunshine.
I just want to feel thesunshine.
I share this life with you.
I share this life with you.
Bye.
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