Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:25):
And now I'm even more , because the time it takes, you
know, for instance, when I goto bed and it's the time where
you should be unwinding I'mwinding up because I'm putting
this over here and this overhere and doing this and doing
that, and I'm hooking up andthen, finally, when I lay back
(00:48):
down to sleep, you know, eitherI can't sleep or I'm completely
tired, and when I wake up in themorning, either I haven't
gotten enough sleep, because thedialysis does wake me up a lot.
I'm a highly sensitiveindividual and so it'll cause
(01:10):
discomfort or pains, I'll haveto turn and sleep in another
direct direction.
But, um, so that's the the bigthing.
I've noticed that it does makeme tired.
And you know, and witheverything I eat I have to take
(01:31):
phosphorus, which is in meatsand beans and seeds, and it took
me months to get into theroutine of you, of you know,
taking that with everything Ieat, and if I don't, I would
suffer with these itches andthese, these sores that don't
(01:53):
heal, and so that slapped meinto shape.
But, um, yeah, that's, that's arisk there.
And so, being itchy a lot, youknow, late to work, but my boss,
you know, he's like okay, val.
What happened today?
Well, I didn't sleep much and Itossed and turned and I had to
(02:17):
do the rest of my fills in themorning from dialysis.
That's why I'm late.
Fills in the morning fromdialysis, that's why I'm late.
Or actually, when this hugetruck delivers my boxes and
boxes and boxes twice a month tome, they can't come here.
Be before 9 am or after3 pm.
(02:39):
When I'm home from work, theyalways come at 9, 30 or 10 or 11
.
So if my husband's not home Ihave to stay home.
So that's another reason, umthat I can't you know?
and then, um, I used to be inthe chorus and they, the chorus,
(03:01):
would meet a buddhist chorus.
They would meet every Saturdayfrom 10 to 12.
And it's the weekend that I domy full 12 hours of dialysis.
So I'm really not up till youknow 11 or 12.
And then I eat, and then youknow and do my stuff I can't do
(03:23):
on the weekday, so I you know,that interfered with that and do
my stuff I can't do on theweekday, so that interfered with
that.
Speaker 2 (03:37):
But until my transplant, then things will
change.
So explain to me the process.
I mean, we're going to go checkit out, but just when you like
you said that it's differentduring the week than it is on
the weekend, you can just giveme just like a quick breakdown
and we'll get more in detailwhen you actually show us.
Speaker 1 (04:02):
Well, I'm not an early to bed, early to rise
person, eh A.
So I have my Buddhistactivities and I get home at 9,
9.30.
And sometimes I haven't eaten.
So then I eat and to dodialysis on a full stomach,
because it makes you fuller, youdon't digest your food and so
(04:23):
then I have this bad stomachache.
So I'll have to wait until Ihave an hour or more to digest
and sometimes I'll fall asleepwhile I'm waiting and I'll wake
up at three or four in themorning going oh no.
So then I only get a couple ofsessions in, you know, out of
six sessions, and it's like twoto two and a half hours each
(04:47):
session.
So it depends when I start.
And, add you, I'm supposed todo 12 hours.
So during the weekday Inormally only do 8 to 10 hours,
but mostly 8 hours.
So then on the weekend is whenI do my 12 hours and of course I
(05:10):
will start it late at night.
We have a little helicopteraction here.
Speaker 2 (05:19):
We'll go through that a little bit again too.
Let me just look here.
Yeah, it sounds like he's justcircling overhead or something
and now it's gone.
All right, just go to the endhere.
(05:50):
If you could change anythingabout your situation, your
treatment, how the process hasgone, what would you change?
Speaker 1 (06:06):
um, I would love for the equipment to be smaller and
less heavy, but it's really goodjust go back say if I could
change anything about.
Oh okay, treatment and yeah ifI could change anything about my
treatment for dot for kidneydisease, I would make the um
(06:27):
sorry, can we do that one moretime?
Speaker 2 (06:28):
there was some squeaking, oh yeah oh, that was
me.
Speaker 1 (06:33):
If I could change anything about my treatment or
the way I do it.
I would like for the equipmentto be less bulky and heavy.
I mean, my bedroom is awarehouse and, thank goodness my
(06:54):
husband and I each have our ownbedroom.
I can imagine, you know, if wedo that to share it.
That would be one.
I would like for the dialysispeople to deliver, you know,
have more convenient hours fordelivering said equipment.
How?
Speaker 2 (07:18):
about your doctors?
How do you feel about yourdoctor's care and the process
that you've had to go throughwith your insurance and stuff
like that?
Speaker 1 (07:27):
I feel blessed with my doctors, but only because I
seek the doctors that reallywant to tell me as much as they
can but I ask a lot of questionstoo, but they don't seem.
They don't seem to mind.
Um, and the dialysis center I'mwith, I'm signed up with them
(07:51):
because I'm, when you go ondialysis, the type I'm doing the
home dialysis you immediatelygo on to Medicare Hemodialysis,
which is the blood one.
It takes three months to go onMedicare.
So I'm currently on Medicareand it's like $300 every three
(08:16):
months and the National KidneyFoundation is taking my bills
and paying them and apparentlymy cost of health insurance
they're going to also pay.
So that's in the in the routeof getting done, which is going
(08:38):
to be a great break for myhusband and I.
A lot of these medicines cost alot of money.
You know, these phosphoruspills are, you know, $200 to
$300 a month.
Chem strips for diabetes $200to $300 a month.
(09:02):
So I pay a good share and Ican't imagine if I get on
lifelong immune suppressantdrugs and apparently Medicare is
only going to last three yearsfrom the time I have the
transplant.
They used to be able to coverall your medicine to the end of
(09:24):
your life.
Speaker 2 (09:26):
So I don't know what's gonna happen then what
advice would you give to thosewho are, you know, starting just
finding out that they haveissues?
Let's start there.
What would you, what advicewould you give to those people
who are just finding out andthose people who are on, say,
(09:51):
hemodialysis that might want toswitch?
You know what advice, adviceyou have for other folks that
are dealing with kidney issues.
Speaker 1 (09:58):
Well, I would seek out a doctor that believes in
peritoneal dialysis.
Speaker 2 (10:03):
That would be the first you go back in.
Speaker 1 (10:06):
If I were to give advice, if I would give advice
to someone who is Dealing withkidney, but however you want to
phrase that, but just includethat is dealing with kidney,
however you want to phrase thatbut just include that If someone
wanted to change fromhemodialysis to peritoneal
dialysis, I would seek out adoctor that knows and does the
(10:28):
peritoneal dialysis, or hookedup to a dialysis center, because
I ran into a bunch of doctors.
Or hooked up to a dialysiscenter, because I ran into a
bunch of doctors that told menot to do peritoneal dialysis
and I'm glad I didn't listen.
I listened to myself.
Speaker 2 (10:53):
But yeah, Okay, how about somebody that, like I told
you about my sister, she issomeone who knows she has issues
, knows she eventually needs todeal with it.
What do you mean issues she?
Her kidney function is down tolike 15% and doctors have told
her that she needs to addressthe situation.
You know, have a stint put inso that she can eventually have
(11:18):
dialysis, but she's kind oflagging.
She's not really doing what thedoctors have asked.
Speaker 1 (11:27):
And for someone who has issues with not wanting to
go on dialysis, you know, and Iwas like that.
I put it off as long as I could.
I became a vegetarian.
That's how much I wanted tostay off of diet, to become a
vegetarian very strict.
But the consequences I did notknow is that there's levels of
(11:52):
toxins in the body and that canaffect the heart, that can
affect the eyes, it can affectyour joints, so you're taking a
risk of agitating other parts ofyour body by not you know, and
I didn't know.
When I first started theperitoneal dialysis, april a
(12:14):
year ago, april year and a halfum, I had so much energy and
color back in my face of peoplewow, you look so great.
I mean I thought I have energynow, but I really had energy,
you know, when I went from nightto day type of deal.
So yeah, for anybody I wouldsay do research a little more.
Speaker 2 (12:40):
Okay, Any questions?
You can think of Matt Mm-hmmthat.
(13:06):
What exactly is dialysis?
Dialysis is a method ofcleaning and you can look at me.
Continue to look at me here soyou can start.
Speaker 1 (13:19):
Dialysis is a method of cleaning toxins out of the
body, whether it's via blood orvia the peritoneal cavity.
Or via the peritoneal cavity,the hemodialysis, which is the
blood version.
They put a stent in your armtakes three months I think I
(13:42):
said that already and theperitoneal dialysis.
You go in for a very minorsurgery where they implant a
tubing in your stomach and thetube sticks out about six inches
to a foot and so that enablesyou to hook up to your you know
(14:06):
the liquid that's going to go inin you and it takes the liquid
out of you.
You're not able to bathe, swimor take, you know, for six
months to a year after thisprocedure because it but I have
never been able to heal.
(14:27):
It's never some people, probablycuz I'm diabetic, but some
people they heal right over andit just looks like it's part of
their skin.
But so I don't, I don't takethe risk of getting an infection
from bathing or, you know,going to the beach or pool.
Got it?
Um, okay, I think that Got it.
(14:49):
Okay, I think that you can goto the other part.
I'd just like to proceed here.
I did want to talk about.
Speaker 2 (14:59):
Okay, yeah, if there's anything that you yeah.
Speaker 1 (15:00):
I'd like to talk about diabetes and peritoneal
dialysis.
Okay, peritoneal dialysis issugar water.
Fartanel dialysis is sugarwater and when I'm doing 12
hours at a time, the sugar watergoes in me, fills me up.
I do not get hungry because thesugar absorbs into my
(15:23):
bloodstream, makes my bloodsugar go up on top of it, so I'm
running higher blood sugars.
Now there's a way that they sayyou can put insulin into the
bag, but then that the risk ofgetting in you know, an
infection that way is is high,and they don't want me to have
any risk of infection.
(15:44):
So I just have to really,really watch my blood sugars
because you know again thatcould high blood sugars can be
as bad as the toxins for heartdisease and I.
And so how?
Speaker 2 (15:57):
do you monitor that?
Speaker 1 (16:00):
I don't know if you see my fingertips, but black
holes everywhere.
I just poke my finger and testit five to ten times a day.
Speaker 2 (16:17):
Can you say that in the full sentence?
I did a procedure In order tocheck my blood sugar levels.
I mean because you have tomonitor yourself.
Speaker 1 (16:25):
Okay, In order to monitor my blood sugar levels, I
poke my finger.
There's a kit that you can testyour blood sugars and I do that
about five to ten times a day.
Speaker 2 (16:42):
Have you had any incidents in your treatment
where you missed something orthere's complications?
Speaker 1 (16:50):
Oh yeah, I have missed treatments by falling
asleep because I was so tiredthat it was already for.
I was even hooked up.
I just didn't push start, soI've missed.
You know, I've missed days, youknow, not in a row, but here
and there.
I've missed days, not in a row,but here and there, and I've
(17:23):
had very high blood sugars byjust not realizing that two
hours went by while I washolding a lot of sugar water in
my peritoneal cavity sugar waterin my peritoneal cavity and so
it's resulted in this eye and alot of people think it's what do
you call that?
A Cataract.
(17:43):
But it's not a cataract, it'scalcium growing in this eye and
there's nothing they can doabout it yet, but so that's a
(18:03):
sugar level thing.
And now I'm even more , because the time it takes, you
know, for instance, when I goto bed and it's the time where
you should be unwinding I'mwinding up because I'm putting
this over here and this overhere and doing this and doing
that, and I'm hooking up andthen, finally, when I lay back
(00:48):
down to sleep, you know, eitherI can't sleep or I'm completely
tired, and when I wake up in themorning, either I haven't
gotten enough sleep, because thedialysis does wake me up a lot.
I'm a highly sensitiveindividual and so it'll cause
(01:10):
discomfort or pains, I'll haveto turn and sleep in another
direct direction.
But, um, so that's the the bigthing.
I've noticed that it does makeme tired.
And you know, and witheverything I eat I have to take
(01:31):
phosphorus, which is in meatsand beans and seeds, and it took
me months to get into theroutine of you, of you know,
taking that with everything Ieat, and if I don't, I would
suffer with these itches andthese, these sores that don't
(01:53):
heal, and so that slapped meinto shape.
But, um, yeah, that's, that's arisk there.
And so, being itchy a lot, youknow, late to work, but my boss,
you know, he's like okay, val.
What happened today?
Well, I didn't sleep much and Itossed and turned and I had to
(02:17):
do the rest of my fills in themorning from dialysis.
That's why I'm late.
Fills in the morning fromdialysis, that's why I'm late.
Or actually, when this hugetruck delivers my boxes and
boxes and boxes twice a month tome, they can't come here.
Be before 9 am or after3 pm.
(02:39):
When I'm home from work, theyalways come at 9, 30 or 10 or 11
.
So if my husband's not home Ihave to stay home.
So that's another reason, umthat I can't you know?
and then, um, I used to be inthe chorus and they, the chorus,
(03:01):
would meet a buddhist chorus.
They would meet every Saturdayfrom 10 to 12.
And it's the weekend that I domy full 12 hours of dialysis.
So I'm really not up till youknow 11 or 12.
And then I eat, and then youknow and do my stuff I can't do
(03:23):
on the weekday, so I you know,that interfered with that and do
my stuff I can't do on theweekday, so that interfered with
that.
Speaker 2 (03:37):
But until my transplant, then things will
change.
So explain to me the process.
I mean, we're going to go checkit out, but just when you like
you said that it's differentduring the week than it is on
the weekend, you can just giveme just like a quick breakdown
and we'll get more in detailwhen you actually show us.
Speaker 1 (04:02):
Well, I'm not an early to bed, early to rise
person, eh A.
So I have my Buddhistactivities and I get home at 9,
9.30.
And sometimes I haven't eaten.
So then I eat and to dodialysis on a full stomach,
because it makes you fuller, youdon't digest your food and so
(04:23):
then I have this bad stomachache.
So I'll have to wait until Ihave an hour or more to digest
and sometimes I'll fall asleepwhile I'm waiting and I'll wake
up at three or four in themorning going oh no.
So then I only get a couple ofsessions in, you know, out of
six sessions, and it's like twoto two and a half hours each
(04:47):
session.
So it depends when I start.
And, add you, I'm supposed todo 12 hours.
So during the weekday Inormally only do 8 to 10 hours,
but mostly 8 hours.
So then on the weekend is whenI do my 12 hours and of course I
(05:10):
will start it late at night.
We have a little helicopteraction here.
Speaker 2 (05:19):
We'll go through that a little bit again too.
Let me just look here.
Yeah, it sounds like he's justcircling overhead or something
and now it's gone.
All right, just go to the endhere.
(05:50):
If you could change anythingabout your situation, your
treatment, how the process hasgone, what would you change?
Speaker 1 (06:06):
um, I would love for the equipment to be smaller and
less heavy, but it's really goodjust go back say if I could
change anything about.
Oh okay, treatment and yeah ifI could change anything about my
treatment for dot for kidneydisease, I would make the um
(06:27):
sorry, can we do that one moretime?
Speaker 2 (06:28):
there was some squeaking, oh yeah oh, that was
me.
Speaker 1 (06:33):
If I could change anything about my treatment or
the way I do it.
I would like for the equipmentto be less bulky and heavy.
I mean, my bedroom is awarehouse and, thank goodness my
(06:54):
husband and I each have our ownbedroom.
I can imagine, you know, if wedo that to share it.
That would be one.
I would like for the dialysispeople to deliver, you know,
have more convenient hours fordelivering said equipment.
How?
Speaker 2 (07:18):
about your doctors?
How do you feel about yourdoctor's care and the process
that you've had to go throughwith your insurance and stuff
like that?
Speaker 1 (07:27):
I feel blessed with my doctors, but only because I
seek the doctors that reallywant to tell me as much as they
can but I ask a lot of questionstoo, but they don't seem.
They don't seem to mind.
Um, and the dialysis center I'mwith, I'm signed up with them
(07:51):
because I'm, when you go ondialysis, the type I'm doing the
home dialysis you immediatelygo on to Medicare Hemodialysis,
which is the blood one.
It takes three months to go onMedicare.
So I'm currently on Medicareand it's like $300 every three
(08:16):
months and the National KidneyFoundation is taking my bills
and paying them and apparentlymy cost of health insurance
they're going to also pay.
So that's in the in the routeof getting done, which is going
(08:38):
to be a great break for myhusband and I.
A lot of these medicines cost alot of money.
You know, these phosphoruspills are, you know, $200 to
$300 a month.
Chem strips for diabetes $200to $300 a month.
(09:02):
So I pay a good share and Ican't imagine if I get on
lifelong immune suppressantdrugs and apparently Medicare is
only going to last three yearsfrom the time I have the
transplant.
They used to be able to coverall your medicine to the end of
(09:24):
your life.
Speaker 2 (09:26):
So I don't know what's gonna happen then what
advice would you give to thosewho are, you know, starting just
finding out that they haveissues?
Let's start there.
What would you, what advicewould you give to those people
who are just finding out andthose people who are on, say,
(09:51):
hemodialysis that might want toswitch?
You know what advice, adviceyou have for other folks that
are dealing with kidney issues.
Speaker 1 (09:58):
Well, I would seek out a doctor that believes in
peritoneal dialysis.
Speaker 2 (10:03):
That would be the first you go back in.
Speaker 1 (10:06):
If I were to give advice, if I would give advice
to someone who is Dealing withkidney, but however you want to
phrase that, but just includethat is dealing with kidney,
however you want to phrase thatbut just include that If someone
wanted to change fromhemodialysis to peritoneal
dialysis, I would seek out adoctor that knows and does the
(10:28):
peritoneal dialysis, or hookedup to a dialysis center, because
I ran into a bunch of doctors.
Or hooked up to a dialysiscenter, because I ran into a
bunch of doctors that told menot to do peritoneal dialysis
and I'm glad I didn't listen.
I listened to myself.
Speaker 2 (10:53):
But yeah, Okay, how about somebody that, like I told
you about my sister, she issomeone who knows she has issues
, knows she eventually needs todeal with it.
What do you mean issues she?
Her kidney function is down tolike 15% and doctors have told
her that she needs to addressthe situation.
You know, have a stint put inso that she can eventually have
(11:18):
dialysis, but she's kind oflagging.
She's not really doing what thedoctors have asked.
Speaker 1 (11:27):
And for someone who has issues with not wanting to
go on dialysis, you know, and Iwas like that.
I put it off as long as I could.
I became a vegetarian.
That's how much I wanted tostay off of diet, to become a
vegetarian very strict.
But the consequences I did notknow is that there's levels of
(11:52):
toxins in the body and that canaffect the heart, that can
affect the eyes, it can affectyour joints, so you're taking a
risk of agitating other parts ofyour body by not you know, and
I didn't know.
When I first started theperitoneal dialysis, april a
(12:14):
year ago, april year and a halfum, I had so much energy and
color back in my face of peoplewow, you look so great.
I mean I thought I have energynow, but I really had energy,
you know, when I went from nightto day type of deal.
So yeah, for anybody I wouldsay do research a little more.
Speaker 2 (12:40):
Okay, Any questions?
You can think of Matt Mm-hmmthat.
(13:06):
What exactly is dialysis?
Dialysis is a method ofcleaning and you can look at me.
Continue to look at me here soyou can start.
Speaker 1 (13:19):
Dialysis is a method of cleaning toxins out of the
body, whether it's via blood orvia the peritoneal cavity.
Or via the peritoneal cavity,the hemodialysis, which is the
blood version.
They put a stent in your armtakes three months I think I
(13:42):
said that already and theperitoneal dialysis.
You go in for a very minorsurgery where they implant a
tubing in your stomach and thetube sticks out about six inches
to a foot and so that enablesyou to hook up to your you know
(14:06):
the liquid that's going to go inin you and it takes the liquid
out of you.
You're not able to bathe, swimor take, you know, for six
months to a year after thisprocedure because it but I have
never been able to heal.
(14:27):
It's never some people, probablycuz I'm diabetic, but some
people they heal right over andit just looks like it's part of
their skin.
But so I don't, I don't takethe risk of getting an infection
from bathing or, you know,going to the beach or pool.
Got it?
Um, okay, I think that Got it.
(14:49):
Okay, I think that you can goto the other part.
I'd just like to proceed here.
I did want to talk about.
Speaker 2 (14:59):
Okay, yeah, if there's anything that you yeah.
Speaker 1 (15:00):
I'd like to talk about diabetes and peritoneal
dialysis.
Okay, peritoneal dialysis issugar water.
Fartanel dialysis is sugarwater and when I'm doing 12
hours at a time, the sugar watergoes in me, fills me up.
I do not get hungry because thesugar absorbs into my
(15:23):
bloodstream, makes my bloodsugar go up on top of it, so I'm
running higher blood sugars.
Now there's a way that they sayyou can put insulin into the
bag, but then that the risk ofgetting in you know, an
infection that way is is high,and they don't want me to have
any risk of infection.
(15:44):
So I just have to really,really watch my blood sugars
because you know again thatcould high blood sugars can be
as bad as the toxins for heartdisease and I.
And so how?
Speaker 2 (15:57):
do you monitor that?
Speaker 1 (16:00):
I don't know if you see my fingertips, but black
holes everywhere.
I just poke my finger and testit five to ten times a day.
Speaker 2 (16:17):
Can you say that in the full sentence?
I did a procedure In order tocheck my blood sugar levels.
I mean because you have tomonitor yourself.
Speaker 1 (16:25):
Okay, In order to monitor my blood sugar levels, I
poke my finger.
There's a kit that you can testyour blood sugars and I do that
about five to ten times a day.
Speaker 2 (16:42):
Have you had any incidents in your treatment
where you missed something orthere's complications?
Speaker 1 (16:50):
Oh yeah, I have missed treatments by falling
asleep because I was so tiredthat it was already for.
I was even hooked up.
I just didn't push start, soI've missed.
You know, I've missed days, youknow, not in a row, but here
and there.
I've missed days, not in a row,but here and there, and I've
(17:23):
had very high blood sugars byjust not realizing that two
hours went by while I washolding a lot of sugar water in
my peritoneal cavity sugar waterin my peritoneal cavity and so
it's resulted in this eye and alot of people think it's what do
you call that?
A Cataract.
(17:43):
But it's not a cataract, it'scalcium growing in this eye and
there's nothing they can doabout it yet, but so that's a
(18:03):
sugar level thing.
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