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August 25, 2023 16 mins
The Walk for PKD is the largest fundraising event for polycystic kidney disease (PKD), raising over $35 million since the year 2000. At the event, the PKD Foundation brings together patients, physicians, and researchers to strengthen the community for all impacted by PKD. When you ask your friends and family to support you and the Walk for PKD, 100% of each donation will fund life-saving research. https://walkforpkd.org/
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(00:02):
And welcome in. This is apublic affairs program that shares the light on
the interest, issues and concerns ofthe greater Pittsburgh area. I'm your host,
Johnny Hartwell. Today's topic is polycystickidney disease or p k D.
It's an inherited disorder in which clustersof cysts develop primarily within the kidneys,
causing your kidneys to enlarge and losefunction over time. And the Pittsburgh Walk

(00:24):
for PKD is coming up on Saturday, September twenty three at the Waterfront.
If you'd like to donate or ifyou'd like to sign up, go to
Walk for PKD dot org. Nowwe have a number of people on the
zoom line, but we're going tostart with Christy Rosen. Good morning,
Christy. How are you? Oh? Great? Thanks? All right?
So what is your connection with pk D and what is your connection with

(00:46):
the walk? Connection with PKD isI am a PKAD patient. I am
fifteen years transplanted. I've been involvedwith the Pittsburgh chapter for fifteen twenty years
now, and this is my firstyear with my involvement with the walk as
the actual walk coordinator. Okay,so you've got your work cut out for

(01:07):
you. Again, it's coming upon the twenty third, But since you're
the first person on the zoom line, I am going to ask you a
few questions about p k D.It's an inherited disease, but you kind
of have a different story. Thereis a small population of people that it
is a mutation. Sixteen percent ofthe population PKAD patients are mutations and not

(01:30):
an inherited And what's your story?How when did when were you diagnosed with
PKD. I was in my forties, I had uncontrolled hypertension and I was
healthy otherwise, so my primary carephysician sent me in for a ultrasound and
found that my kidneys were both filledwith cysts. From then on, it

(01:53):
was just watch and wait till yourkidneys fail. At a certain point,
you're getting to the point where youneed to either go on dialysis or be
transplanted. I was very lucky tohave a sister in law that was willing
to be a live donor and Ireceived her kidney. And what triggers PKD.
What is the rhyme or reason?Well, no, my rhyme or

(02:14):
reason actually, but there is thatthere is an ARPKAD which is discovered in
infancy that can be actually discovered invitro no. But the the adpk D
which I have, it can bediagnosed. My son was seventeen when he
was diagnosed, so it was itis infancy adolescence, and then I was
an adult, so it can beat any point, So tell me about

(02:36):
your son's story. He took himto a regular pediatrician's visit, elevated blood
pressure, which tends to be oneof the one of the first signs,
one of the earliest signs, andthey were going to take him to a
cardiologist, you know, refer himto a cardiologist, and I explained my
diagnosis and how it's related to kidneySo we went right to a nephrologist and

(02:59):
he was diagnosed with an ultrasund aswell. He is twenty eight years old
with great kidney function, so heis just doing the waiting game. Now.
Is our cure for PKD. There'snot. There's currently if you get
to the point where your kidneys orin your in renal failure, it is
as I've said previously, it isa choice of pursuing a transplant or going

(03:23):
on dialysis. As I say,there are some medications and there's also you
know, diet, exercise, watchingsalt intake, there's some dietary also.
Today's topic is polycystic kidney disease.We're talking to a number of people who
are patients with PKD, but wewant to remind you the Pittsburgh Walk for
PKD is coming up on Saturday,September twenty three. You can get more

(03:46):
information or sign up for the walkat Walk for PKD dot org. Now
I've had this uh. PKD hasbeen featured on the Sunday Show before.
And somebody who's not any strange tothe program, Gary Sentel and his son
George, are also on the zoomline. Good morning, fellas. How
are you all right? Gary,it's been quite a summer for you.

(04:10):
Well, first of all, youknow, tell us your background with PKD,
and and then I'm really curious aboutyou know, the story that begins
this past June. So tell usyour history. I first guy introduced to
PKD through my father's experience, whichwas back in the seventies. Actually,

(04:30):
he had had blood pressure problems fora while and finally got diagnosed with PKD
something that was not as popular asit is now, and there weren't that
many treatments either. He ended upbeing on dialysis. So from that point
on, I knew that some ofthe things that I needed to look at
to determine whether I have it ornot. The first thing that happened was

(04:55):
that my blood pressure elevated after beinglike a solid one twenty eighty for years.
So that happened probably I think itwas in my early thirties, and
then I mentioned to my PCP,you might want to check for this hereditary
kidney disease because it's supposed to beone of the signs of having as Christy

(05:16):
had said. They do an ultrasoundand they did find cyst formations and both
the kidneys, So at that pointI was diagnosed with PKD. That was
in nineteen ninety two. So severalyears passed in the process of the kidneys
declining and function to the point whereI was getting very close to having to

(05:41):
choose a type of dialysis, andmy sister Lisa decided she wanted to be
a living owner for me, whichcan tell that she wouldn't have to be
tested for PEKKAD of course, Sowhat happened for the first transplant she got
approved? I got a roof andthe transplant happened in January two thousand and

(06:05):
five. Recently, I started goinginto end state drenal disease again because the
the inter rejection drug that you takedoes have some toxic properties to the kidneys,
so over time caused the kidneys tofail eventually. So that's where I
was tried a couple of times toget back on the kidney transplant list.
Is a candidate, it's not aneasy thing to do. I got approved

(06:30):
in April of this year of twentytwenty three. Just getting on the transplant
list doesn't mean you're going to geta call, And you know they tell
you three to five years until youget a first call. So it was
assumed in my kidney failure, wouldn'tyou dropped to the point where I'd need
dialysis before I'd ever get a call. So George and I were on our

(06:51):
way to a Pirate game on Juneeleventh, and we had tickets ahead of
time, but it just ended upbeing the game where Andrew McCutchen needed one
more hit, So you know,that's what we were going to reach two
thousand. Yeah, okay, yeah, So we met over on North Side
and we were at a food courtover there and just about getting our lunch

(07:15):
before we head over to the PNCPark and I got a phone call.
And this is on a Sunday.June eleven was a Sunday. So I
get a cooler idea that says Ageand Transplant Center. I'm thinking to myself,
why would they be calling me ona Sunday, you know, And
I thought, I said, couldpossibly have a kidney for me? You
know, it's only been two monthssince I've been on the list. They

(07:39):
gave me about an hour to beat the hospital, which we were already
in North Side, So you know, that kind of fell into neatly into
place that we were right there.You had time to go catch the ball
game. Come on, George couldtell you more about that, because you
know, I had that thought inmy head as well. The other thing

(08:03):
it kind of fell into place too, is launch just got you know,
delivered to our table. So nowhold up, Gary, I need to
go to your son. George.So you're at the game and your and
your dad would rather watch the ballgame and get something to eat than have
his you know, life saving surgery. Is that? Is that what I'm
hearing? Uh, there was definitelya thought in a discussion at first.

(08:28):
You you could see see my dadjust you know, in a in a
different world of of you know,not knowing what to do and on the
phone, and uh. One ofthe first things was kind of just like
he was mad to be to behonest, that we couldn't like not to
be able to go to the gamenow. And then he said an hour
and he looked at me. Hewas like, well, I think we

(08:52):
can make at least and maybe seehis first at bat and if he doesn't
hit then we'll go to the hospital. And I'm like, Dad, there
was no time, like it's alreadyyou know, it's already here. And
then lo and behold, I thinklike five minutes later, at his first
at bat, we see it onthe on the screen and he hit it,
and I was like, well,you know he hit it, there's
uh you know, might as welljust get in the hospital now. And

(09:13):
uh, I think this is abetter story. Yeah, yeah, I
think this is a big yeah.I mean, your your father's a true
Pittsburgher. I can respect that.However, I do think this was a
was a better decision. George.Now, how old are you, George,
thirty three and you don't have pkD yet you don't? Is there

(09:37):
do you test for that knowing thatyou have a family history. So that's
an interesting thing, especially in thein the country we live in as far
as insurances in being covered. Sothankfully, I've never had any symptoms of
p k D and they typically startto come about in your late twenties early

(09:58):
thirties. So I've, you know, it worked with my PCP for the
past couple of years. You know, he knows what you know, situation,
and we've just been very careful monitoring. You know. I make sure
to take my blood pressure a littlemore often than you know, more than
at the doctor's office. And I'vealways had low blood pressure, never had
any signs. And we're at thepoint now where I'll get a yearly ultrasound

(10:20):
and again nothing has ever come up. So I've been very thankful for that.
But as far as testing for PKD, I could get genetically tested,
but once I would do that,that would start to mess up for any
kind of life insurance as now thisbecomes a pre existing condition. Wow.
Wow, that's that's so it's it'sbetter to kind of like not know and

(10:46):
just monitor your symptoms. And oneof the first things, as my dad
mentioned, is the blood pressure.Once that goes off, that's one of
the first signs, and I haven'thad it, so it's kind of,
you know, no reason to testfor it. So yeah, I've been
I've been very, very lucky,all right, the Santels. I do
want to remind everybody we're talking aboutpolyus, just a kidney disease. The

(11:07):
Walk for PKD is coming up onSeptember twenty three at the Waterfront You can
sign up and walk for PKD dotorg. Let's move on to Mark and
Nancy Britt Mark and Nancy tell meyour story. So I'm the one with
PKD. I was diagnosed when Iwas thirty three years old, which would

(11:28):
have been back in the nineteen ninetyfive. And I had just had a
baby at the end of December nineteenninety four, and like most women,
I was kind of needing my bellyone I want to make get rid of
this baby fat. And I raninto something that was rather huge in there,

(11:48):
and I was like, that's notbaby fat. I ended up being
tested and they tried to do aCT scan. I'm allergic to the die.
So we ended up with a ultrasoundand I could see on the screen
the multiple cysts inside my kidneys andI said, huh, looks like polycystic
kidney disease to me. So thedoctor said, usually people cry when I

(12:11):
tell them, and I said,no, I kind of see the cysts.
I see what it is. Becauseso I'm already done a little bit
of research on it, just outof curiosity what could be going on.
So I had a leg up onwhat I expected. Now, did you
have a family history? Did anyof your parents? No? So no,
neither of my parents my mom diedat eighty five and dad at almost

(12:35):
ninety, and neither one of themhad PKD. They neither one of them
had any problems with their kidneys whatsoever. They never went into renal failure,
nothing, Mark, what is yourstory? My story is just trying to
take care of my wife. Sowe've been on this journey, you know,
watching her renal function through the yearsgo down and down and down,

(12:56):
and so she just earlier this yearwas told, okay, you're at twenty
percent functions. So we began to, you know, to go through the
process of getting her on the transplantlist, and so as a support of
husband and I said, I wantto be tested as well as to be
a potential donor for her. SoI've I've completed most of the testing myself,
and they said, you know,there's a couple of different tests.

(13:18):
You look pretty good on those,but you're you're not a good match and
not a good match. We're wantto look for a better match. One
of the opportunities potentially is that anational kidney registry you can go out,
you know, and they have avoucher program and so conceivably I could don
a kidney and then get a voucherfor through them, and then they could

(13:41):
find a living daughter from my wife, or what they call a para donation
where you can have a couple ofpeople on a daisy chain where you kind
of match up and say, I'llgive my kidney, you know, to
your loved one. You give youryour kidney to my love and that kind
of thing. But it's it's it'squite an emotional journey. And Nancy is
at about seventeen percent function right now, so we're, you know, we

(14:03):
don't know exactly when she would notneed dialysis, but probably sometime in the
next year ish. So that's kindof where we're at now. Okay,
well, that's an inspiring story andI wish you you too, the best
of luck. We only have afew minutes left. I see Nancy Kaminsky
just slipped in, So Nancy,tell me your story. I am ten
years out from transplant. My tenthanniversary will be in September. My donor

(14:30):
was my oldest son, and that'skind of a long story. I've been
a PKD volunteer for many many years. I've been the walk coordinator and education
chair, and currently I'm involved inadvocacy. We're working very hard to get
the Living Donor Protection Act passed rightnow. It has been held up in

(14:54):
Congress for almost ten years, keepscoming up each session. Each session we
get a little more support, andwe think that we may be very close
to getting it through. And thereason that this is so important is because
people who donate a kidney living donors, about twenty five percent of them are

(15:16):
penalized either by their employer and notgiven time off work or in obtaining insurance
once they've donated. A kidney eitherlife or long term care insurance. So
this would provide protections that would allowpeople to use FMLA to take time off

(15:39):
to donate a kidney. So it'svery important and that's kind of my passion
right now. Well, I'm gladyou had an opportunity to tell that story
because I think that's very important.Unfortunately we're out of time, but I
want to thank all of you guysfor your input to your stories, and
I wish you all lots of luckand thank you for coming on and telling

(16:00):
your your story and good luck withthe walk, and thank you, thank
you to all of you. Thankyou so much. Thanks, thanks once
again. If you want more informationon the walk that's coming up on September
twenty three, the website is walkfor PKD dot org. Gotta take a
quick break. When we come back, we're gonna be talking to Patty Stow
of Meta Biber. Coming up next. Mystinia Gravis. It's hard to say,

(16:25):
hard to spell, but easy toget. Help. Hi. I'm
Jim Joyce, Executive director of theMeistenia Gravis Association of Western PA. Myastinia
gravis is a chronic neuromuscular disease thatimpacts a person's voluntary muscles. Our organization
supports individuals with myastinia gravis through educationand advocacy programs. For more information,
please contact us directly at four onetwo five six six one five four five

(16:51):
or MGA WPA dot org
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