September 9, 2024 • 14 mins
Polycystic Kidney Disease is a genetic condition you may not have heard of, but it affects over 600,000 people in the U.S. and is one of the leading causes of kidney failure. Our guest is Richard Kellner, who founded The PKD Outreach Foundation, after his wife passed away, and who has been working with over 100 families across the country and currently has 10 families who have had or are expecting PKD-free babies. For more, visit pkdo.org.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:02):
Welcome to Get Connected with Nina del Rio, a weekly
conversation about fitness, health and happenings in our community on
one oh six point seven Light FM.
Speaker 2 (00:13):
Welcome and thanks for listening to Get connected earlier. This
week marked Polycystic Kidney Disease Awareness Day, otherwise known as PKD.
Polycystic kidney disease is a genetic condition you may not
have heard of, but it affects over six hundred thousand
people in the country and is one of the leading
causes of kidney failure. Our guest is Richard Kellner, founder
(00:35):
of the PKD Outreach Foundation. Richard Kellner, thank you for
being on the show.
Speaker 3 (00:40):
Great, Thank you very much for having me. Really appreciate it.
Speaker 2 (00:43):
You can find out more at PKDO dot org. Let's
start with the base six, Richard, what is PKD so.
Speaker 3 (00:51):
PKD is a dominant gene genetic condition that causes cysts
on your kidneys to be there at birth microscopically, but
with time the cysts grow and crowd out healthy kidney
function and you know, ultimately in many cases cause kidney failure.
(01:11):
Often by the time somebody is fifty.
Speaker 2 (01:16):
So how many people does it impact and how does
it impact their lives.
Speaker 3 (01:20):
So you know, from up until your forties, it's just
just there, a bit of a time bomb tick ticking away,
but doesn't impact your day to day, doesn't impact your health.
But again, in most cases, by the time you're forty,
you start seeing a gradual, a gradual then rapid decline
(01:41):
in kidney function. And you know, the worst thing about
the disease is because it's a dominant gene, it passes
down to fifty percent you know, statistically fifty percent of
your children. So families with PKD it's generation after generation
(02:02):
after generation of kidney failure, dialysis and transplants.
Speaker 2 (02:07):
So I would assume if it's a fifty percent chance,
you're passing it on to your child or grandchild and
it doesn't really impact your life, perhaps until you're in
your forties. You may not know until you have it,
until you have some serious symptoms.
Speaker 3 (02:21):
That's that's correct. You know, if it's in your family,
you pretty much know that your your risk. But a
lot of times and even the medical community tells you, ah,
you know, don't, don't, don't get tested until much later
in life. That was probably good advice. Forty years ago,
(02:44):
and part of what we're here doing is educating people
that there's a reason to know because there are things
that you can do.
Speaker 1 (02:51):
Well.
Speaker 2 (02:51):
You began this advocacy work because of your wife, Joanne.
I wonder could we just start, Could you talk about
her and what was she like?
Speaker 3 (02:59):
Yeah, so you know, first of all, what I met
jo Anne when I was when I when I was
when I was twenty years old and we're dating for
a few weeks. She brought me home to meet her
parents and her her mother was on home dialysis, you know,
in between kidney transplants, and that was that was the
first time, at twenty years old that I learned about
(03:22):
about p k D engage at Mary at twenty one,
married at twenty three, knowing knowing that Joanne had the disease,
and and one day that that her kidneys would fail,
and you know that I would donate a kidney, and
with the belief that once I donated the kidney, oh,
Pkd's behind you. You know, the reality turned out to
(03:45):
be a little bit different.
Speaker 2 (03:47):
And ultimately you yeah, as you just said, you did
donate a kidney to her, which is a huge thing.
Can you talk a little bit sort of about even
what your doctors told you at the time and just
the you know how that went for everybody.
Speaker 3 (04:01):
You know, So the kidney donation, you're born with a
spare right, you do not need both both of both
of your kidneys. So the kidney donation itself, they do
it Labrick scopically. I was back in the gym two
weeks after I donated the kidney, and you know, Joanne's
(04:22):
health remarkedly improved. You know, but kidney transplants are not
a perfect solution or or or an end because again,
those transplanting kidneys, a they don't last forever. You know,
typically if you're lucky, you get fifteen to twenty years
(04:43):
and then they're they're just also adverse side effects and
comorbidities associated with the with the anti rejection medical medication.
And you know, unfortunately that that'll you know, combined to
my my loos and Joe I'm way too.
Speaker 2 (04:58):
Young with Richard Kellner, founder of the PKD Outreach Foundation.
After his wife passed away from the disease, he began
this group, which has been working with over one hundred
families across the country and currently has ten families who
have had or are expecting babies living free from polycystic
kidney disease. You can find out more at PKDO dot org.
(05:21):
You're listening to get connected on one oh six point
seven Light FM. I'm Nina del Rio and to follow
up on what you were just saying, Richard, one of
the ways you are fighting PKD is through living kidney donation.
Speaker 3 (05:33):
That's correct. We've we've got a small pilot program at
the University of Utah Medical Center working to help families
that have not been able to find a live kidney
donor in their immediate kind of network, to help them
find live live donors with with outreach and helping them
tell their stories on on social media. And one of
(05:55):
the things that we have that we have found is
that there's actually a lot more kindness in the world
than you would believe, and with a lot of people.
If you know, not for everyone, but you know you
present them the opportunity to save a life, you know,
to somebody that even they have the slightest connection with.
There are more people that will come forward than you
(06:18):
would believe. Our last pilot in twenty twenty three had
eight participants and we had over one hundred and sixty
people stepped forward as potential donors. Over sixty percent of
them had never heard the name of their potential recipient before.
Speaker 2 (06:35):
That's pretty remarkable, It's sort of It also makes me
want to ask you, you know, as someone who actually
donated a kidney, health effects to you afterwards.
Speaker 3 (06:45):
So I donated my kidney ten years ago and I
you know, you don't know you're missing it. And for
that matter, I was fifty pounds overweight when I first
got tested as a donor, and you know, they basically
they told me, you know, look, the good news is
you're a match. The bad news is, you know, we'll
(07:06):
never take your kidney. You're too you're you're not in
adequate physical shape yourself. I lost fifty pounds in ninety days,
got myself fit. They took my kidney, and you know,
and it changed my life for the better, both that
sense of knowing and giving and really getting the appreciation forgiving.
But even my own health had had improved. I was
(07:28):
on a bad track, and you know, it got me
healthy and I've stayed healthy.
Speaker 2 (07:35):
There are other ways to slow the progression of disease,
to delay or avoid kidney failure. Can you talk about those.
Speaker 3 (07:42):
Yeah, So the typical nephrologist, well that that's not educated
in PKD is basically just going to tell you, you know,
just watch your blood pressure and keep your sodium low.
But there has been increasing science around therapeutics, medications that
(08:03):
you could take to slow the progression of the disease,
dietary changes. There are certain things in certain healthy foods
that actually speed the progression of PKD that are not
common knowledge amongst most doctors. So the one thing that
we've been advocating is the PKD Foundation has set up
(08:26):
PKD Centers of Excellence where they have nephrologists and dietitians
with real expertise in PKD. And if you're somebody in
your twenties and thirties with a family history of PKD,
your doctors may be telling you don't think about it,
(08:46):
don't worry about it. I'm going to encourage you to
find one of those PKD Centers of Excellence nearest. You
speak to them, and they're going to have ideas for
you in terms of therapeutics, lifestyle, diet that could potentially
help you get an extra ten to fifteen years life
out of your native kidneys, and if you need any
(09:09):
help finding one of them again, contact us at PKDO
dot org and we can help point you in the
right direction.
Speaker 2 (09:16):
There is no cure for PKD, but there is yet
another way to end the disease by preventing it from
being passed down to the next generation. And I wonder
if you could also talk about your work with doctors
and researchers and genetic testing.
Speaker 3 (09:29):
Yeah, this is this is the one that we are
most passionate about and the one that gets most of
our energy and and and our and our funding. But
the gene for p k D in ninety five percent
plus of cases is very easy to identify with with
modern genetic testing. And once they've identified that gene in
(09:55):
the parent, if the couple is willing to go through IVF,
once they harvest the embryos or the eggs, fertilize the eggs,
they have the embryos, they could test the embryo to
determine which one of those embryos are PKD free. No
modification of the embryos. It is just a oh, we've
(10:18):
got twelve embryos, We're only going to implant one at
a time. Why don't we get smart about which one
of those twelve we're going to select. So with this
genetic testing, they could determine, hey, the which half of
these embryos do not have PKD and those would typically
be the first ones that you would implant to have
(10:41):
a healthy pregnancy.
Speaker 2 (10:43):
How receptive have families been to this, especially people who
may not have been considering IVF. You're working with doctors
who are kind of helping patients along the way.
Speaker 3 (10:53):
Yeah, we have gotten you know, as we've gotten the
word out, you know, family have been extremely receptive to
wanting to learn more. You know. The biggest concern has
been overfunding. Right, health insurance in many states doesn't cover IVF,
and it's expensive, you know, quite frankly, you know, it's
(11:18):
if you don't have insurance for it, it becomes financially
out of reach for a lot of families. So we
just recently launched an expanding grant program in partnership with
US Fertility, which is a nationwide fertility chain where they're
offering discounts and we're offering grants that will bring the
(11:38):
average cost of one round of of of IVF and
implantation from thirty thousand to fifteenth thousand, you know, roughly
thirty thousand to fifteen thousand, which is putting this solution
in reach, not necessarily of everyone, but of a lot
more families.
Speaker 2 (11:57):
For people who want to have families and they're not
sure of their family history. Perhaps is the test standard
for PKD should they ask for it? Who should ask
for it?
Speaker 3 (12:06):
If PKD is in your family, especially an aggressive form
that's likely to cause kidney failure, you're going to know
about it right there. There's been somebody in your family
that that that's had kidney failure, been on dialysis, needed
a transplant. And again, if that was apparent, you're going
(12:26):
to know you're fifty percent at risk and you should
certainly look at it. If there isn't a family history
of it, this is not something you need to go
looking for or we're certainly not advocating that, but again,
when there's a known family history, given that fifty percent risk,
we think at a minimum people should just get educated
(12:49):
and be aware of what their options are.
Speaker 2 (12:51):
Yours is the only organization working to end PKD in
our last minute or so, where do you see the
foundation in the next ten years? What do you hope
to see as far as successes and reach ten years from.
Speaker 3 (13:04):
Now, we want we would like to know that every
family with PKD is aware that this is an option
and that if they're interested in the solution, that that
funding is available to put it within their with within
the within their reach. So it's it's it's it's a
lofty goal, but it is definitely achievable.
Speaker 2 (13:26):
It's amazing work you're doing on behalf of these families
and in memory of your wife. Our guest is Richard Kalner,
founder of the PKD Outreach Foundation. You can find out
more at PKDO dot org. Thank you for joining me
on get Connected great.
Speaker 3 (13:42):
Thank you very much.
Speaker 1 (13:44):
This has been Get Connected with Nina del Rio on
one oh six point seven light Fm. The views and
opinions of our guests do not necessarily reflect the views
of the station. If you missed any part of our
show or want to share it, visit our website. We're
downloads and podcasts at one oh six to seven lit
fm dot com. Thanks for listening.
Speaker 3 (14:11):
H
Welcome to Get Connected with Nina del Rio, a weekly
conversation about fitness, health and happenings in our community on
one oh six point seven Light FM.
Speaker 2 (00:13):
Welcome and thanks for listening to Get connected earlier. This
week marked Polycystic Kidney Disease Awareness Day, otherwise known as PKD.
Polycystic kidney disease is a genetic condition you may not
have heard of, but it affects over six hundred thousand
people in the country and is one of the leading
causes of kidney failure. Our guest is Richard Kellner, founder
(00:35):
of the PKD Outreach Foundation. Richard Kellner, thank you for
being on the show.
Speaker 3 (00:40):
Great, Thank you very much for having me. Really appreciate it.
Speaker 2 (00:43):
You can find out more at PKDO dot org. Let's
start with the base six, Richard, what is PKD so.
Speaker 3 (00:51):
PKD is a dominant gene genetic condition that causes cysts
on your kidneys to be there at birth microscopically, but
with time the cysts grow and crowd out healthy kidney
function and you know, ultimately in many cases cause kidney failure.
(01:11):
Often by the time somebody is fifty.
Speaker 2 (01:16):
So how many people does it impact and how does
it impact their lives.
Speaker 3 (01:20):
So you know, from up until your forties, it's just
just there, a bit of a time bomb tick ticking away,
but doesn't impact your day to day, doesn't impact your health.
But again, in most cases, by the time you're forty,
you start seeing a gradual, a gradual then rapid decline
(01:41):
in kidney function. And you know, the worst thing about
the disease is because it's a dominant gene, it passes
down to fifty percent you know, statistically fifty percent of
your children. So families with PKD it's generation after generation
(02:02):
after generation of kidney failure, dialysis and transplants.
Speaker 2 (02:07):
So I would assume if it's a fifty percent chance,
you're passing it on to your child or grandchild and
it doesn't really impact your life, perhaps until you're in
your forties. You may not know until you have it,
until you have some serious symptoms.
Speaker 3 (02:21):
That's that's correct. You know, if it's in your family,
you pretty much know that your your risk. But a
lot of times and even the medical community tells you, ah,
you know, don't, don't, don't get tested until much later
in life. That was probably good advice. Forty years ago,
(02:44):
and part of what we're here doing is educating people
that there's a reason to know because there are things
that you can do.
Speaker 1 (02:51):
Well.
Speaker 2 (02:51):
You began this advocacy work because of your wife, Joanne.
I wonder could we just start, Could you talk about
her and what was she like?
Speaker 3 (02:59):
Yeah, so you know, first of all, what I met
jo Anne when I was when I when I was
when I was twenty years old and we're dating for
a few weeks. She brought me home to meet her
parents and her her mother was on home dialysis, you know,
in between kidney transplants, and that was that was the
first time, at twenty years old that I learned about
(03:22):
about p k D engage at Mary at twenty one,
married at twenty three, knowing knowing that Joanne had the disease,
and and one day that that her kidneys would fail,
and you know that I would donate a kidney, and
with the belief that once I donated the kidney, oh,
Pkd's behind you. You know, the reality turned out to
(03:45):
be a little bit different.
Speaker 2 (03:47):
And ultimately you yeah, as you just said, you did
donate a kidney to her, which is a huge thing.
Can you talk a little bit sort of about even
what your doctors told you at the time and just
the you know how that went for everybody.
Speaker 3 (04:01):
You know, So the kidney donation, you're born with a
spare right, you do not need both both of both
of your kidneys. So the kidney donation itself, they do
it Labrick scopically. I was back in the gym two
weeks after I donated the kidney, and you know, Joanne's
(04:22):
health remarkedly improved. You know, but kidney transplants are not
a perfect solution or or or an end because again,
those transplanting kidneys, a they don't last forever. You know,
typically if you're lucky, you get fifteen to twenty years
(04:43):
and then they're they're just also adverse side effects and
comorbidities associated with the with the anti rejection medical medication.
And you know, unfortunately that that'll you know, combined to
my my loos and Joe I'm way too.
Speaker 2 (04:58):
Young with Richard Kellner, founder of the PKD Outreach Foundation.
After his wife passed away from the disease, he began
this group, which has been working with over one hundred
families across the country and currently has ten families who
have had or are expecting babies living free from polycystic
kidney disease. You can find out more at PKDO dot org.
(05:21):
You're listening to get connected on one oh six point
seven Light FM. I'm Nina del Rio and to follow
up on what you were just saying, Richard, one of
the ways you are fighting PKD is through living kidney donation.
Speaker 3 (05:33):
That's correct. We've we've got a small pilot program at
the University of Utah Medical Center working to help families
that have not been able to find a live kidney
donor in their immediate kind of network, to help them
find live live donors with with outreach and helping them
tell their stories on on social media. And one of
(05:55):
the things that we have that we have found is
that there's actually a lot more kindness in the world
than you would believe, and with a lot of people.
If you know, not for everyone, but you know you
present them the opportunity to save a life, you know,
to somebody that even they have the slightest connection with.
There are more people that will come forward than you
(06:18):
would believe. Our last pilot in twenty twenty three had
eight participants and we had over one hundred and sixty
people stepped forward as potential donors. Over sixty percent of
them had never heard the name of their potential recipient before.
Speaker 2 (06:35):
That's pretty remarkable, It's sort of It also makes me
want to ask you, you know, as someone who actually
donated a kidney, health effects to you afterwards.
Speaker 3 (06:45):
So I donated my kidney ten years ago and I
you know, you don't know you're missing it. And for
that matter, I was fifty pounds overweight when I first
got tested as a donor, and you know, they basically
they told me, you know, look, the good news is
you're a match. The bad news is, you know, we'll
(07:06):
never take your kidney. You're too you're you're not in
adequate physical shape yourself. I lost fifty pounds in ninety days,
got myself fit. They took my kidney, and you know,
and it changed my life for the better, both that
sense of knowing and giving and really getting the appreciation forgiving.
But even my own health had had improved. I was
(07:28):
on a bad track, and you know, it got me
healthy and I've stayed healthy.
Speaker 2 (07:35):
There are other ways to slow the progression of disease,
to delay or avoid kidney failure. Can you talk about those.
Speaker 3 (07:42):
Yeah, So the typical nephrologist, well that that's not educated
in PKD is basically just going to tell you, you know,
just watch your blood pressure and keep your sodium low.
But there has been increasing science around therapeutics, medications that
(08:03):
you could take to slow the progression of the disease,
dietary changes. There are certain things in certain healthy foods
that actually speed the progression of PKD that are not
common knowledge amongst most doctors. So the one thing that
we've been advocating is the PKD Foundation has set up
(08:26):
PKD Centers of Excellence where they have nephrologists and dietitians
with real expertise in PKD. And if you're somebody in
your twenties and thirties with a family history of PKD,
your doctors may be telling you don't think about it,
(08:46):
don't worry about it. I'm going to encourage you to
find one of those PKD Centers of Excellence nearest. You
speak to them, and they're going to have ideas for
you in terms of therapeutics, lifestyle, diet that could potentially
help you get an extra ten to fifteen years life
out of your native kidneys, and if you need any
(09:09):
help finding one of them again, contact us at PKDO
dot org and we can help point you in the
right direction.
Speaker 2 (09:16):
There is no cure for PKD, but there is yet
another way to end the disease by preventing it from
being passed down to the next generation. And I wonder
if you could also talk about your work with doctors
and researchers and genetic testing.
Speaker 3 (09:29):
Yeah, this is this is the one that we are
most passionate about and the one that gets most of
our energy and and and our and our funding. But
the gene for p k D in ninety five percent
plus of cases is very easy to identify with with
modern genetic testing. And once they've identified that gene in
(09:55):
the parent, if the couple is willing to go through IVF,
once they harvest the embryos or the eggs, fertilize the eggs,
they have the embryos, they could test the embryo to
determine which one of those embryos are PKD free. No
modification of the embryos. It is just a oh, we've
(10:18):
got twelve embryos, We're only going to implant one at
a time. Why don't we get smart about which one
of those twelve we're going to select. So with this
genetic testing, they could determine, hey, the which half of
these embryos do not have PKD and those would typically
be the first ones that you would implant to have
(10:41):
a healthy pregnancy.
Speaker 2 (10:43):
How receptive have families been to this, especially people who
may not have been considering IVF. You're working with doctors
who are kind of helping patients along the way.
Speaker 3 (10:53):
Yeah, we have gotten you know, as we've gotten the
word out, you know, family have been extremely receptive to
wanting to learn more. You know. The biggest concern has
been overfunding. Right, health insurance in many states doesn't cover IVF,
and it's expensive, you know, quite frankly, you know, it's
(11:18):
if you don't have insurance for it, it becomes financially
out of reach for a lot of families. So we
just recently launched an expanding grant program in partnership with
US Fertility, which is a nationwide fertility chain where they're
offering discounts and we're offering grants that will bring the
(11:38):
average cost of one round of of of IVF and
implantation from thirty thousand to fifteenth thousand, you know, roughly
thirty thousand to fifteen thousand, which is putting this solution
in reach, not necessarily of everyone, but of a lot
more families.
Speaker 2 (11:57):
For people who want to have families and they're not
sure of their family history. Perhaps is the test standard
for PKD should they ask for it? Who should ask
for it?
Speaker 3 (12:06):
If PKD is in your family, especially an aggressive form
that's likely to cause kidney failure, you're going to know
about it right there. There's been somebody in your family
that that that's had kidney failure, been on dialysis, needed
a transplant. And again, if that was apparent, you're going
(12:26):
to know you're fifty percent at risk and you should
certainly look at it. If there isn't a family history
of it, this is not something you need to go
looking for or we're certainly not advocating that, but again,
when there's a known family history, given that fifty percent risk,
we think at a minimum people should just get educated
(12:49):
and be aware of what their options are.
Speaker 2 (12:51):
Yours is the only organization working to end PKD in
our last minute or so, where do you see the
foundation in the next ten years? What do you hope
to see as far as successes and reach ten years from.
Speaker 3 (13:04):
Now, we want we would like to know that every
family with PKD is aware that this is an option
and that if they're interested in the solution, that that
funding is available to put it within their with within
the within their reach. So it's it's it's it's a
lofty goal, but it is definitely achievable.
Speaker 2 (13:26):
It's amazing work you're doing on behalf of these families
and in memory of your wife. Our guest is Richard Kalner,
founder of the PKD Outreach Foundation. You can find out
more at PKDO dot org. Thank you for joining me
on get Connected great.
Speaker 3 (13:42):
Thank you very much.
Speaker 1 (13:44):
This has been Get Connected with Nina del Rio on
one oh six point seven light Fm. The views and
opinions of our guests do not necessarily reflect the views
of the station. If you missed any part of our
show or want to share it, visit our website. We're
downloads and podcasts at one oh six to seven lit
fm dot com. Thanks for listening.
Speaker 3 (14:11):
H
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