EPIC Podcast: Robert Silvera and Joyce Solomon

Join Yessi Cubillo, a Quality Insights ESRD Network 3 Patient Engagement Specialist, and patients Robert Silvera and Joyce Solomon as they share their journeys with home dialysis (PD & Home Hemodialysis) and reveal the successes and challenges they have faced along the way.

Learn more about Quality Insights End-Stage Renal Disease (ESRD) Network 3.

This material was prepared by Quality Insights Renal Network 3, an End Stage Renal Disease (ESRD) Network under contract with the Centers for Medicare & Medicaid Services (CMS), an agency of the U.S. Department of Health and Human Services (HHS). Views expressed in this material do not necessarily reflect the official views or policy of CMS or HHS, and any reference to a specific product or entity herein does not constitute endorsement of that product or entity by CMS or HHS. Publication No. ESRD3-052124-GK

Transcript

welcome listeners to another episode of

the empowering partners for improved care epic podcast I'm thrilled to have you join us for our fifth episode

together we will delve deep into the stories of patients family members and facility staff each offering invaluable

insights and experiences from covering obstacles to embracing proven practices our guests share the transformative

moments that have reshaped their lives interventions and outcomes get ready to be inspired as we explore the power of

partnership in fostering better care I am Jesse kuo your host and patient

engagement specialist for ESRD Network 3 today we have the honor of welcoming two

remarkable guests Robert S and Joyce Solomon

welcome hi good morning how are we're gonna learn about your Journeys with home dialysis and uncover the successes

and challenges that you both have faced along the way uh but thank you thank you so much for being here with us

today thank you for having me you're welcome thank you for having me so before we jump into this all to like the

topic about your Journeys and everything I I do have to say Joyce I've known you for like over 10 years now that I've

been at the network um and you were a patient family advisory council member

of ours A Pac member so you been very active uh at the network level with um

with our Patient Group and our and also our medical review board you're a member of our mrb um so thank you for for all

those years that you've you know worked with the network and and we've seen your journey as he developed as well

throughout those years um but thank you I I appreciate that and and Robert you are one of our uh one of our most

acquired or required not required um what's the word I'm looking for Mo our most uh wanted I want to say uh patient

mentors in our Patient to Patient mentoring uh program so thank you so

much for being here with us to us today and uh and the work that you're doing and I know I see a lot of potential for

you in the future with us here at the network Robert so stay tuned for

that all right so I know the two of you have very unique stories and the idea is

the work that we're doing and and you've heard me talk about in the past that the work that we're doing as a network goes

back to um promoting home dialysis promoting transplant and and educating

patients and providing resources to patients um but I think one of the things to speaks what something that

speaks deep and and close to home home to patients is like if they hear from

another patient story if they hear that Journey that they've gone through um and so the reason we're here today is I want

to be able to give you an opportunity to share your own unique stories and let's talk about what was it that that you've

gone through and where you're at today uh and maybe that can also Inspire other patients and they can see that the the

obstacles that that they are facing currently are similar obstacles that you probably went through and overcame and

there are some success stories to that so let's start with um a little bit about uh tell us about yourself uh um

and your personal journey and what led you to pursue home dialysis as a treatment option and Robert go ahead

we'll start with you all right thanks again for having me so um about five six

years seven years ago I seen my doctor knew the kidneys were failing but he told me you need to start dialysis in a

few months so I researched went to the National Kidney Foundation I watched all the videos that I ended up seeing when I

was at the dialysis center I was starting and I chose from the beginning to start with PD I didn't want to do

hemodialysis unless I really had to so I made that decision you know showed the

videos to my wife when we went to the clinic because the you know the spouse or partner always comes in and uh

watched the videos I knew what to expect so I thought but you know the amount of

space for materials and that lasted for about a year and uh almost two years

maybe a year and eight months year and nine months and everything was going well I was able to I was still working

full-time as a school principal I was doing Dialysis in my office once during the day and then in the afternoon I

would come home and then evening on the cycler ETC I was able to go you know to

weddings and you know things like that bring my m is with me and then um I end

up getting an infection unfortunately and they stopped you know

remove the catheter let it you know heal for a while then I had permcath in my chest unfortunately leads directly to

the heart as you know so it's a little little dicey but that was personally that was the easiest dialysis because

there's no pain there's nothing but it's just in danger of getting infected and they moved the catheter from one side to

the other and then that didn't work moved it back again we waited each time you have to wait you know two to four

weeks before you can even try to use it and by the last time it was January of 2020 and the last move wasn't quite

working so then and then covid hit and I just couldn't take a chance of being hospitalized so I said let's just go

with hemodialysis and then that Journey began because that you know takes a little bit more out of you um but my

mother had been on dialysis years before and she would complain all the not complain but she'd be exhausted I walked

out of my first di hemo dialysis you know with my fistula saying I don't know that wasn't so bad I can do this and I

continued to work and do my dialysis fourth shift and about a clinic close by that did fourth shift do it after school

and you know but then uh Co hit you know I couldn't go back to school I couldn't

take a chance so then I retired but uh then I started doing dialysis during the day my uh hemo and then I was exhausted

afterwards I recently found out you know it's called dialysis fatigue syndrome I

definitely sitting for 12 14 16 hours nauseous just couldn't do anything and

then on my off days I felt okay I would be you know out in my car so during

covid I was never felt like I was stuck at home because I was going out three days a week and then sitting home and

then on my off days I was out driving my car not going to just sit around doing nothing so I you know a lot of people

suffered you know you're stuck in your home but I was able to and then um after

that been that total dialysis time was five years well five years and 10 days

and I was finally I was active on the list for only about half of that five

years about two and a half years because of I also had uh triple bypass surgery

while on dialysis in the hospital I was on PD at that point for a year and I

asked them if I could do my own dialysis while I was in the hospital hospital and they had somebody watch me so I was able

to do my own PD in my uh hospital room and actually some of the the uh cardiac

nurses came to watch because they don't have an opportunity to see PD very often

so I held my little classes there a couple times and then you know it was good everything went well but then

everything happened and then uh five years and 10 days later I was they

called me and said we've got a kidney I had a couple calls just leading up to the fiveyear and then finally I had one

that was a match and it was uh you know it was a the golden the Golden kidney I

think my doctor said because it was a very young person you know healthy no drugs a whole bit so and I had been

willing i' signed the the consent for a hepatitis heepsy I would have taken one

of those you know they talked to me about that I said I'll take whatever you can give me but this was a good kidney

and you know now I just my kidney is working amazingly well never an issue from the first day from the first day no

and there's a lot in between I mean I I developed pericarditis while on PD which I didn't realize was a possible side

effects until I was in the hospital but you know the fix for that is very simple you know take your ibuprofen and the

swelling goes down but you don't know that because we don't take ibuprofen while you're you know kidney just you

just don't do that so it all worked out you learn a lot I asked a lot of questions every you know the first time

on um hemodialysis I asked the nurse in the hospital about or the technician

about all the buttons and the numbers on the machine and she's proceeded for 40 minutes to explain everything on there

so I just you know I like to ask questions and get information yeah

now yeah you've you've gone basically through the different modalities you did a a PD you did in center and now you're

a transplanted so you do have kind of like the spectrum of knowledge on the modalities and it was great to actually

meet Joy we I sat next to Joy at our last conference our the only conference I've been to which was wonderful and

when she said she does home heemo I first thing I said she sat down I said I have some questions for you and my first

question because I was willing to try home hemo okay but then you know giving the needle I can deal with I was just

worried about taking that needle out and trying to put pressure right away yeah and Jo explained and the doctor next to

you explained how that works and I said uh it's just as well though my wife yeah

would not have been happy watching that not that she would watch it but she just wouldn't even be able to handle that so

so yeah thank you so Joey how about you tell us about your journey um uh uh Robert did in Center he did PD and now

he's transplanted how about your um experiences what what um tell us about it sure so uh to begin with I'd like to

give a little history of how I was diagnosed I was a young adult and every

time I have my urinal is tested there is tremendous amount of uh protein

subsequently I was referred by my internal medicine physician to a nephologist and I was monitored and the

conclusion was that I have IG nephropathy it's common to a where your

agom membrane typically pass urine an event it caused damage once the damage

sets in hypertension sits in and I have uncontrollable uh blood

pressures um I was maintained on medications diet and exercise until I

got married and I got pregnant that pregnancy put a lot of pressure on my kidneys and since I delivered my baby my

creatinin subsequently increases every year fast forward in 200 16 I had a lot

of symptoms that uh the basic uh the basic ethology or cause is because of my

failing kidney so uh um my nephologist mentioned to me that while I still

urinate and I have a little bit of remaining kidney function it is in my best interest to um to be placed on

dialysis way ahead before comparing to those patients that typically they com

they describe it as a crashing patient so um I uh um the word dialysis is

something that resonates with me well because while I was a nurse um in one of my uh career career

highlights I work at a hospital that has the third largest population of kidney

transplants and in that I took care of children um until 18 years old who have

chronic uh kidney disease who are on home dialysis who basically have um

acute illness that requires the acute therapy for acute therapy form of

dialysis when they are in ICU and because the medical center has a lot of kidney transplant I learned and I became

a specialist in uh immediate transplant care and post transplant care so that

experience over six Years be I became a specialist in kidney and nursing care

from home acute to post transplants little did I know that 25 years later I

moved on to different careers as a manager director performance Improvement

specialist regulatory analyst and as as a instructor of Nursing in state

universities that I have to um use those skills that Knowledge and Skills that I

learned from that six years of nursing so my nephologist told me it's in my

best interest to uh be placed on dialysis to start dialysis and that news

came to me like a shock my word sto um I was in the middle of uh pursuing my

doctorate in nursing and so many changes happen with that

decision but the goal is for me to uh to be healthy so so uh I agreed and um

initially I had a subclavian catheter and uh I also have an avist place and

the sub subclavian catheter was my access for dialysis until the aista

matured the first six months of my treatment uh was uh at the in center and

I have to quit my job because I suffered from what we now know as post dialysis

fatigue syndrome every after treatment I feel drained fatigue I couldn't I could

barely get up and once the um once I recover a little bit here comes another

treatment so for six months I could not work I was very thin my laboratory

results were Walky until um one nurse noticed that I am very proactive with my

my own treatment often you know I already wash my hands wash my my a my my

area for Access I mention what my love is I record what I eat and then a prium

nurse told me I would be the best patient to try home hemo or home

dialysis either PD or or hemo I was shocked to hear that because as a nurse

I I was unaware of some of the advancement now on the outpatient side and so I began to research and I felt

that it's something that I can do so because of that desire I was transferred

to a clinic that offers home dialysis I opted for home hemo because I

like to be in a bubble bath swim and all that and also I was very conscious of how I would appear that you know

sometimes I wear clothes that that are fitting in my belly and uh during summer

I like to wear twopiece I'm petite but my body is described as

proportional um and I also I'm aware of some patients with like peripherally

inserted Central catheter for either uh chemotherapy or something and they put something that's very artistic and then

they look good so for for that for at that time it's primarily for aesthetic

purposes so I preferred home heemo and then eventually I began to learn that there is a a methodology called um

button hole which I was introduced so after that I never felt pain because I

access in the same area at the same time so uh since 2016 I had been on home

hemodialysis and uh I will be uh excited to share my journey why I appear like

this I still maintain full-time job and my life goes on thank you amazing thank

you Joyce for for sharing that and and you highlighted I think important points

that a lot of the patients think about when when they talk about um dialysis

home dialysis and the options between PD and the option between hemodialysis

there are patients who are afraid of needles and that's Robert that's what you were saying right that's uh

something that you you didn't consider that initially because it's something that you didn't think you'd be able to do to yourself um and and your your your

spouse would not have been able to kind of the side of it is something that you wouldn't have been able to do so you went with the PD option as well well I

personally I don't have a fear of the needles I know though putting a needle in wouldn't be a problem I'm concerned

because when I watched them do hemo first time you pull the needle out and you got to put pressure I wasn't understand nobody explained because I

had already done PD so I was on hemo for not even as long as Joyce but you know

it was a thought but then everything else happened there was I wasn't going to change to home heemo anytime soon at

all because it was just not gonna work plus I retired you know after 37 years of being in education I didn't need to

work anymore that kind of thing yeah it's always a thought in the back of my head so yeah but I you know I've spoken

with patients who don't like needles you know when during my mentoring processes

you know phone calls and it just you know and even now if I get like a shot or something they're like oh I'm sorry

about that I said this is nothing compared to heo but talking about like Joyce she's

she she's able to do home hemodialysis and sustain her job maintain her job and

the work that she's doing and a full-time job at that too right georce right and Robert you were sharing

with me uh previous to this um to this podcast how you were a school principal

and you were able to do your treatments while you were at the school do you want to share a little bit about that

experience yes when I was first placed on dialysis I I mean I lived close enough to the school that I had to do

One exchange during the day because I had done the cycler overnight I do one

you know somewhere around between 11: and 1 and then the next one didn't have to happen till 4:30 o'clock so I was

home by then my first uh probably two weeks of having to do this every day I

was running home during my lunch period because as a principal you don't really get a lunch period you're supposed to be

there but I had to do it but after about that was my plan for two or three weeks but it lasted about a week and instead I

just closed my door and when you're on PD nobody can be in the room it's got to be clean you know clear of people just

for the actual connection once you make the connection onto your catheter then anybody can be in the room and I was

able to hold meetings and again it was in elementary school I'd have meetings with teachers and parents but also some

students and sometimes they don't even notice because I just hanging on you know my bookcase behind me and some kid

will say oh what's that there I said well you know Mr s is sick and we just move on and nobody ever had any issue

parents were always interested because again a lot of people keep these things you know they're private you know

however I needed to tell everybody because people had to know why I wasn't going to be there on days you know or

why you know some parents are very like wise and Mr s they were there one day a week or that kind of thing but nobody

ever had a problem with it you know and I was able to do it and then go home and do what I had to later so yeah I I think

that's also important because you you were not only doing your own treatment and and and taking care of yourself but

you were conscious of the fact that you wanted to also bring awareness to the general population of not just what

dialysis is but that U I do have I did have a patient from another Network who

said dialysis means life like it's not the end of it all right and so exactly

you were kind of like that that you were showing them that hey this treatment that I'm receiving it's what's giving me

life it's it's basically that that that treatment that allows me to be here and continue to do my job continue to

interact with you um and there are people out there who don't know what dialysis is or kidney failure for the ma

for as a matter of fact what leads to kidney failure and so being able to convey and share your personal story as

you're living it I think that was something to um to admire so so yeah I

was able to I mean I went to a an education conference with all the administrators from my district at a

restaurant and it was going to be all day and I just told asked them I went ahead called ahead said I'm going to need a small room for 30 45 minutes by

myself and it was lunchtime and I took the first 30 minutes of lunch and did

what I had to do and then put the stuff in my car and I went and so there's always a way to go about it you can live

your life I traveled not far but I mean hotels you can do it easily at a hotel and things like that and even if you

travel you know by playing you have the best thing is the material delivered to your hotel that can't beat you can go on cruises

all those kind of things you know so it doesn't stop you from doing that and even on hemo dialysis I've traveled

there also and all you need to do is make you know have your your clinic make an appointment somewhere else you know I

was four or 500 miles away and I got an appointment there and I did it twice there you know it's it's all it's doable

it really is yeah Joyce in in being that you're doing home hemodialysis and you

also had the experience of in Center uh for some time how would you say the two

um comp comparing the two how does it impact your quality of life or has

impacted your quality of life um and do you see an overall difference in the two

having the the two um experiences in the modalities oh yes major difference um

when I was in the N Center uh basically I am dependent on the availability of

schedule so if my my schedule is 3:00 I have to be there because the chair is

open for me yeah however if the last patient has has experienced something

like uh symptoms of hemodynamic instability of low blood pressure and

they have to watch that patient I have to wait so time is an Essence that uh

there is a fixed time for me to wait for the chair so as a domino effect it

affects it affected my social life that um I cannot change the schedule because

there is a a fixed time dedicated for me but I cannot maneuver it by saying I

would prefer a different time because the uh incenter dialysis has its own

unique schedule yeah of course the other is the effect of the big machine the big

machine pulls out a lot of blood from me and I'm petite so consequently uh uh

eventually as I mentioned earlier I suffered from chronic fatigue syndrome

and I was exhausted sleepy I lost a lot of weight

I could not work and then uh on top of that the travel time um whether the

season yes whether the season uh is uh rainy snowy storm and all that if you

don't go then uh it has effects on your body if you don't have a treatment and

then the other is the fix three times a week uh you either are Monday Wednesday Friday or Tuesday Thursday Saturday and

in between that sometimes you know you go to uh I call it parties or Gatherings

where you eat a lot and things like that you have to wait for the next day uh

because your schedule is fixed whereas in the in Center uh uh those are the uh

negative uh effects of incenter to me um while the uh home heo basically I manage

my own time I manage my own treatment and I can schedule my treatment depending on how I feel and what what is

on my calendar for the next day overall um the home treatment allowed me to be

flexible with my treatment uh as I mentioned maintain a schedule uh basically based on my work

schedule um as mentioned by Robert I was also able to travel uh travel within the

United States uh basically is very easy there's a lot of centers that are affiliated with my Center um so with

that either my social worker arranged a treatment for me near the area that I'm

vacationing and um in three occasions I took my machine with me in a car and some supplies because it's just within

the driving um uh uh range um I live in new we live in New Jersey Jersey and

then the uh the vacation area is just in the Carolinas in and in the Florida um

overall there's a lot of positive um effect on the on H dialysis for me my

blood pressures remains good um there's a lot of research that the incenter

treatment with a big machine typically results in U negative fluctuations of

blood pressure blood pressure affects the heart affect the brain affects other organs whereas the uh home hemodialysis

machine is so small it's gentle for my body uh my blood pressure are very

steady and it had protected my brain because while in while I am on

hemodialysis at home when I sit in my chair I became very productive uh

connected with friends and family I took online courses review some of the curriculum that I have to teach the next

day and uh I am more productive when sitting in a chair than than when I'm

not which is the reverse um so um um in

conclusion I am one that the literature have describes who have experienced

positive effects of Home hemodialysis my appetite my appetite

improved my loves are uh more manageable and as sub side if I have a plan for the

next day I can do treatment ahead which I I was able to maintain my social life

now um I wanted to share some a part of my life that had happened it may not be uh experienced by

others but just in case it happens to you um when I was first diagnosed my

husband was very supportive he was my care partner and um as they mentioned

sometimes a chronic illness can bind the family or it can also destroy a

family um it appears that my husband suffered from the effects of chronic

illness and eventually we separated but when we separated that was not the end

um I realized then that there is what you call a solo treatment so if you're a Dependable patient your nephologist can

prescribe a solo treatment which I am doing now so uh you don't have to have a care partner you can manage your own

health you can do your own on own uh home dialysis and um in the recent

conference that I was with Robert we met a physician in Jersey City New Jersey

who has a lot of patients doing um home dialysis solo without a uh a partner and

she actually Advocate that if you are able you don't necessarily to have a

care partner because sometimes there's that care partner burden um so uh

there's a lot of ways on how uh someone with uh instace renal disease can

maintain life just like uh Robert and I yeah and thank you for sharing that

personal component of your of your journey um and how it impacts family and

the caregivers and and your partners as well I think one of the things that two of you highlighted in in your your story

is that um home dialysis whether it be PD peronal Dialysis or home hemo

dialysis the both them allowed you guys to be able to continue um your life as

you as you guys mentioned continuing to to work contining to socialize continuing to be there with uh with with

the people that you wanted to connect with um and and allowed you that opportunity um I think one of one of the

things that often we hear uh from patients are some of the miscon misconceptions of what goes along with

home dialysis oh I don't have enough room in my house to store the equipment or or the fluids or or everything that

goes along with the home dialysis component so Robert being you I think

you probably have the most and correct me if I'm wrong uh Joy um You probably have to had the most equipment and stuff

and products in your home because you did PD right um can you share maybe like

some of the so your experience with that the logistics that go behind that as well and then we'll hear from Joy as

well in regards to some of the logistics that go behind there when I started dialysis I started pday just before

Christmas of 2017 and I knew about the equipment the equipment is delivered and I'm in we're

in northern Jersey well I northern Jersey SS County the equipment is delivered I don't know if it still is

was from over in New York state but they only delivered once a month so you have to get enough supplies and walked in the

back door gentleman I said he said what do you want I said well can't fit in the room so let's put it all right by my

back door off to the side and we put uh Christmas table covers over and that was part of our Christmas decoration we

pilot Christmas presents on top and that's the way I managed and for the year and a half that's where the the

material uh stayed um they do a home visit the nurse once you're trained comes look at your spot up in the room

where you're going to do it everything and uh I understand now they do deliver

twice a month which would be you know less I mean h dozens and dozens of

boxes we managed when I started again as I told you I researched I did

not want as you were saying that caretaker burden I didn't want now it

did affect my family at the time it was my son and my wife living at home here they still are but they affected them in

they had to help me like I couldn't carry the boxes up the stairs anymore because I was you know just weak from the from not even from dials just from

my you know years of being getting worse um and then emptying the fluid at the

end of the day which was whenever happened from the machine and things like that um I needed help with that

carrying because there's a lot of garbage a lot of plastic you know from the material which is all right in the

garbage I really think our garbage men knew what was going on because they saw all that and they were very good about

it and the recycling of boxes and things I mean th that's where my family helped

but in the actual process of the dialysis never needed help I tried not to you know bother anybody about you

know I need this I need that um but again the first time I was doing dialysis on my cycler at night and we're

talking three weeks four weeks into it and the cap end broke off and I was leaking fluid and I'm in a panic and my

wife I'm yelling her get out of the room and and I well you know and the nurses are so good because they give you've got

to call a number they'll answer immediately they help you with everything they're like just don't worry about it just clamp it off come to the

clinic in the morning and they just replaced it you know so once you learn all these things the first time you

realize that it's doable everything's doable the first three months it was like Panic of everything but then after

a while you really start living the life that you said well here's what I want to do I'm G to go there you know and people

who asked a lot of people asked at the beginning because again personally my mother had been on dialysis but you know she was older and sicker so she just

went to the hospital um I didn't ask details I did see her once but you know in the in the clinic but otherwise I've

never met at chance to discuss with people and ask them questions about it

and again I ask a lot of questions at the clinic you know whether it's hemo dialysis or ped or you know all those

questions I ask everything because I need to know and I need to like you said educate people I want people to know

what's going on and how many people are at the clinic and you know what's happening when you know when this is

happening I was doing my uh hemo dialysis fourth shift so as Joy was saying you know you have your chair and

that's your time fortunately and they don't have the fourth shift anymore you go in and they'll call me and say Mr sea

can you come in an hour early and you walk in you don't have the same chair they say okay you're at you know at 18

you're at 4 you're at six because there's very few people and they just as soon as there's an empty chair they put

you in so it wasn't until I retired and was doing that regular 5:30 6 o'clock in

the morning in you know session then you realize you have the same chair m and you know which technicians are there

Monday Wednesday Friday or Tuesday Saturday or overlapping and you know you become and I was thinking as Joy was

speaking that I almost wouldn't want to do home heo especially because I wasn't

working anymore but to me that is a social aspect I go there to talk to people you know and if I had to do it at

home I would have missed you know all those people their lives you know people having babies I you know I was one of

the technicians she started there about a month after I did she trained I said go ahead stick me with the needles

practice on me whatever and now you know four years later she and another technician are engaged they're getting

married and I just hear all those things and sort of become friends with the social worker and the dietician and you

know all these people you just so that's I don't know if I would have done so well home but yeah well you were at the

different stage in your life too as you said you're retired and now your Social Circle is actually getting smaller now

that oh yes I I was reading an article about when people retire their Social Circle is the the colleagues they have

at work you know that's the media people that you kind of speak to socialize more uh but once you retire remove yourself

from that environment now you're that Social Circle becomes a lot smaller you don't have those connections anymore and

and it's harder to maintain when you're not working together it's harder to maintain those relationships and so you saw then going in Center the the the

family that you create in there with you know uh the friends that you created in in there those those those Partnerships

that you develop with the staff with the patients that helped you kind of um

replace that Social Circle that you had previously and and yeah part of my Social Circle as a

teacher is still maintaining I have friends that have been I mean there's a bunch of retirees and we hang out but

this smaller number whereas when you're a principal I was a principal in a different school I didn't maintain

friend ships with them because I was the boss and they didn't know me as Robert they knew me as Mr Sila the principal

there's one person I'm friends with because we were friends before I became principal but people from my teaching

career you know the 34 33 years before that those are people I still see and I

you know meet and we go walking and all that kind of stuff but it's a whole different feel to it you know

yeah the best feeling is that you know now you know all these years I don't really have to work anymore which is

really nice because for all those years I was working you know as many of us two and three jobs you know especially 40 35

years ago it wasn't you know you had to have another job yeah now that you're not in Center anymore that that

component of being a mentor and you still partner with your dialysis center to be a mentor and coach and provide

support to other patients that has given you that social outlet if you will Ex being able to continue to connect and

and that's why you're so great you like talking to people [Laughter] soever yeah but like one thing you guys

also mentioned is the traveling and and joy you me you were talking about traveling with your supplies your

machine um we heard Robert Shar some of the the logistics that go behind having

the the equipment the the deliveries done to the house how does that look for you um your your environment at home

your setup uh how much space does that take um

on basically up until 20 uh

2021 um from the time I was diagnosed until 2021 I was living in a home with

enough space so my supplies were delivered once a month and then that

personal uh event happened and I have to we have to sell our house and I have to

move to a rental uh temporarily while my town hall home is being built um that

was the time when I was able to speak with my nurse my dialysis clinic nurse

which I visit once once a month that and the social worker that I found out that

it was possible to actually divide the uh deliveries so from once a month it

became uh basically uh delivery every two weeks so it's it's a lot less um as

far as the isolation that uh Robert had mentioned um it is true I had found out

that majority of the for La of better word more older patients uh look at the

visit at the incenter as a a social Gathering I was at a different stage of

my life uh where my career and profession basically is at its PE and so

I saw it differently that when I go to incenter um I apologize for this

wording I did not enjoy the fact that the people there have the same condition

like me uh I thrive more in an environment where people are healthy so

the transition to home treatment was best for me um I connected

through you know uh using technology with friends uh closer to home or away

from home um I was able to maintain phone calls uh I was able to uh

basically obtain uh uh Advanced education certificates things like that

so I am I was at a different stage of my life but um the uh social connection or

isolation does not change when you go to home uh dialysis it's just a matter of

uh what technology you want to use either phone call or FaceTime or things like that um but that is an opportunity

I believe that if there is a social support for incenter there needs to be a

social support for uh home uh dialysis patients because not everyone is at the

stage uh at the stage of their life like me so others who are doing home therapy

are typically uh postretirement and or may not have a lot of social support

close to them um the uh so we mentioned about the the supplies the

isolation um do you find if you don't mind do you find that that you mentioned

um that you being in the dialysis center make made you feel a certain way and you

yeah so that could also be you think it was part of the fact that it was a constant reminder to you that you to you

had that exactly and and you wanted to achieve other stuff like you felt like something was taken away from you and

you wanted to Contin your career your education and so to you that was kind of like um like almost like giving up it's

not that that that it was that you don't like the people it was more of the fact that it was a reminder to you right that

that it was that that you felt like maybe I'm not going to be able to do the things that I wanted to do and so being

that you you transition to home hemodialysis that gave you that opportunity to then break out of that

shell and break and say I'm able to then continue with those dreams that I had

those goals that I had of being able to go back to school continue my work and um and then that reminder of now you

know you you've gone years doing uh dialysis and your story is one that um

it is of motivation to other patients who to let them know hey I fell down I I

I felt that was a a stage of depression probably that you were also dealing with and you felt that way being in in the in

the in Center which is a lot of patients feel that like if we've heard about from patients in our own patient and family

support group um not support group the PAC patient and family advisory Council

of how depression can just creep in and and it is something that at any stage of

dialysis they're going to experience that um and so that's exactly what you're conveying here you you felt that

you felt that that was kind of a point in your life where you didn't want that reminder of I'm not going to be able to

do those goals or reach those goals and transition into home uh hemodialysis

allowed you to continue that and Robert like for you it's kind of similar being able to do PD allowed you to continue

doing the uh the work and from home and continue to ex continue that Circle of

of of of friends and social socialization that it provided for you and with covid we learned you know zoom

and all these other platforms gave us opened up a whole new world I was even doing Zoom with family and doing uh game

nights and and connecting with family and friends do via Zoom so it's something that had did definitely open

up a lot of doors for for everyone um in talking about the the care your care one

of the things we we hear often is um managing your health and your treatment

plan you guys talked about about that and I do get calls often times from facilities saying oh I have patients who

who come in and they tell me what they want for the treatment and and and they're you know they oftentimes kind of

label these patients as problematic patients and or a patient who doesn't have good ways of communicating how they

want to be a little more involved in their treatment and it comes across depending on how it's convey it comes across a little stronger and I have said

to them have you offer them the option of doing home dialysis if they want to be so and they want to be able to take care of

their own treatment maybe that is an option for them can you share for you

both how home dialysis gave you that self-empowerment over your

treatment so I was able to do I'm sorry I was able to start you know do my dialysis my PD you know exchanges when I

needed to when I was working and then if I was going away whatever it was when I started in Center hemo again I asked

questions I knew and I was the you know the patient they came in you weigh yourself find out how much over you know

your dry weight are and they'd say okay Mr s how much do you want think we should pull whereas I notice a lot of

the patients as Joey said before you know they're older and you know even older than me and they don't ask them

those questions they say here's your dry weight here's where you are here's what we're going to do they don't even say it they just do it I always needed to know

and question not to question them but and I always ask they always ask me what do you think we should pull today you

know that kind of thing and if they thought it was wrong little too much or too less they'd mention it and I'd say

all right let's discuss and the doctor and again my clinic I was at two different clinics but close by here that

we had the same conversations and everybody was very professional about although I did hear you know as you've

been in clinic as well across the room you know you see uh John Doe over there yelling and screaming and it's

unfortunate that we all have to understand that we're all again you were

some people are bothered because I'm I'm sick like everybody else I don't want to be sick like everybody else let me just do this on my own whereas I was there

you know knowing that I'm sick this is what I have to do I take care of this I

go to this doctor I go you know each time and I ask questions you really need to be knowledgeable and if a patient is

not all knowledgeable the text and the doctor and the social worker need to in

my opinion talk to them and say well here are your options I was given the option of you know getting on the

transplant list and the two different types you know PD and hemo immediately

and if not from somebody's mouth just by looking it up National Kidney found or you know quality insights or you know

whatever Clinic company you work with I mean it was just you need to be able to go there and say Here's what I'm looking

for yeah yeah and I think also the component you mentioned Robert of the open communication with the staff the

the being able to um convey your wants but not not like convey them but not in

a way that's demanding either right but in a more of collaborative like hey like

that they would ask you how much do you think you you want to be removed and they say oh that's a little too ambitious Mr Mr s let's talk about let's

talk about how we can make that work and and educate just to why maybe this is the better option um but that

communication I think is very important and and he allows you when you were also doing your home PD you were then more

conscious of all right this is I overdid it today or yesterday I overdid it with what I ate or what I did and now I have

to I have to take care of myself I have to you know uh better better guide my

treatment um overall interestingly on PD you don't really choose how much you

just drain and when it's you looking if it's finished draining you said okay that's what I got today and you just

refill and you go about your business so and you just record everything and then go somebody said well why do you do that

I said well because the goal is to more should come out than went in you know when you CLE clear the peritoneum of the

fluid let's say whatever you put in you should have more come out and you know just keep track of those numbers and you

know okay so and if you wait an extra 10 minutes while you're draining you'll know nothing else is coming out you'll

feel fine it's good to know thank you Joy how about how about yourself how's how has uh home hemo allowed you to be

more control of of your of your own health and and your your care um well um basically when you have

home heemo as I mentioned uh earlier you are able to do your treatment uh based

on your schedule um and also it allows you to think and decide and for those

who are uh thinking about what happens if there is a equipment malfunction

um there is that intensive training of um in my Center at least six weeks where

they cover any anywhere from treatment to what if something happens and they

prepare you for those types of emergency step by step the other is that um there

although there is a training and there is a manual manual is in print and also it's available in the iPad um there is a

1 1800 technical support that you can call in right away and they either give

give you the answer or they walk you through it so um in my experience uh

those types of fear from example equipment malfunction or what if other

emergencies happen they were fully covered during the um the training and also there is a resource Additionally

the center that I'm affiliated with is a large uh uh uh dialysis center so they

have have a uh overnight available on colur other than the technical support

so um um overall yeah overall the the

preparation the training and the resource available uh made me comfortable uh from the start until now

to continuing my uh home dialysis treatment and I think that's an important point you just made that the

fact that there's somebody there 24 hours a day no matter what day you call whether it's technical support or two

o'clock in the morning when you're leaking all over the bed whatever you call somebody and they answer the phone they walk you through it step by step

you know one of the things I push for a home PD is it's never an emergency

because there's fluid that if you have something leaking out it's just fluid that you know it's not like it's you

know urine or blood or it's just this fluid that you know you just washes right out it's never going to all you do

is clamp it and then you go to the clinic the next day you can wait you know and because at the beginning I

didn't know that I called the emergency number and like you're fine and I've called had to call a couple times over

the years you know the year and you know just for simple things and they're very helpful they're never judgmental and

that's important you know and then you go to dialysis if you go to the clinic

the next day they tell you I said oh I see you called the number yesterday they

know and the communication is always is always good between people they know what's going on you know so I could

imagine that first time when you had that incident Robert and and you were like panicking and then you're just like

no it's fine don't worry about it like don't the dog was in the room dogs are not supposed to be in the room but what

she was off to the side and I yelled I said told my wife get out close the door get the dog the dog's barking my son's

in the other room what's going on it was just and I think back now you know just

not that it's silly but you don't know what to expect just the first time something happens nobody said to me okay

if this happens here's what you do if this happen you know nobody said that nobody said to me a possible side effect

is paric cardada is you know because it doesn't happen often but once you know you know you just and I tell the people

about the perard is because anybody on PD you know needs to know possibility

just so you know you know all different things can happen yeah it's being educated

and it doesn't catch you by surprise so that way when it happens you know what to do and how to act in regards to it

Joyce so let's you mentioned about um uh like myth or fears some misconceptions

as well that that that are out there what are some of the misconceptions or myths that you guys or fears also that

you've heard patients mention to you um or that you've heard overall and how would you uh how how did you address

those myths and and misconceptions any any that you you guys can share yeah so

uh the number one is uh basically uh they said that your home will be

occupied by supplies and we mentioned that earlier that it can be arranged whether you want it weekly or or twice a

month or the whole month and um one of the doctor mentioned some uh patients

that had been very creative they used the box and just like Robert did they

cover with something be and it becomes almost like an art in the in the room

yes things like that um the other is uh the isolation that uh as mentioned

Robert depending on your stage of life you see the three times a week visit in

the end Center as a social Gathering and uh I mentioned also that um at home I

use technology fatime uh Zoom calls for some of the

courses that I took uh phone calls and um and also when I'm not on treatment I

allow a lot of friends to visit me you know visit for gathering over a tea or

other things or uh basically meeting in a coffee shop or other places where I

maintain my social life um but the number one is that um when I was in the N Center I have to be present when my

chair or my schedule when my schedule is uh available because I that chair is the

indicated for me now while um doing home dialysis I maintain more of my social

life because I was never absent in Social Gatherings whether it's noon time evening Sunday or whatnot because I can

reschedule my treatment depending on my availability yeah one thing I wanted if

you don't mind I'm sorry to to interrupt it before the thought escapes my mind Robert you mentioned in your in your

experience how if spill you spill fluid it's just fluid is something that we could be cleaned up and it remind me

Joyce as you were speaking one of the fears the biggest fears that patients uh have with doing home hemo dialysis since

you're you know uh putting needle in and and something can let's say something can happen you don't have not having

that nurse present in the room in case something were to happen I think that

was that's some of the one of the biggest fears that that patients share I don't want to do home dialysis whether it be PD or or home heo because I don't

have a nurse if if if anything were to happen if Blood starts spilling all over the place or or something like that were

to happen how how would you respond to that Joyce so remember the training

incorporates every aspect of dialysis whether you are peronal dialysis or

hemodialysis and they will not send you home they give you certification that you're able to do ab c d up to Z

including what to do during emergency um so they will not send you

home if they feel that you are not able and safe to do the uh treatment by

yourself uh the other is that the they don't not only just discuss but you have

to return demonstration that they see that you're able to do it the other is

they provide you with supplies and equipment for example when uh my husband

and I uh divorce and I became a solo I was prescribed with a solo treatment

they also not only prescrib me solo treatment but they prescribe me what you call a red sense it's a sensor that's

placed at the base of the needle in the event that I fall asleep and there's a blood leakage it will alarm Okay so

there are um I call it accessory equipment to make sure that uh when

you're doing your treatment everything is safe okay and then there's that 1 1800 number

and there are things that they they tell you in in case this happens this is what you need to do now demonstrate to me in

case this happens where rarely happens you just do this one so you will never

be sent home if they feel that uh you are unable to execute the possibilities

of intervention intervening uh in an emergency or should something happen

yeah like um since 2016 I never had anything uh that requires emergency

procedure I never had any infection uh just because um the Train

the foundational training and then you go to the clinic once a week and they review everything so there is a constant

review for the skills that you had been taught okay no that's great and that's

that's I think what I wanted to kind of hear from you some of the technology that is available for you know if you do

fall asleep and and you start you know bleeding or the line comes something happens to the line is automatically

going to shut off the machine or it's gonna cut like CL the lines or is that what you're saying what arms no so there

is this uh sensor that you put at the base of the needle example the needle dislodged and it's leaking but you're

asleep then the alarm will wake you up okay and then you execute what they

taught you you know put pressure on the side however as I've said because the training is extensive by just the way

you put your tape and secure the line okay um if you follow what they have

taught you then the line will not be dis sludged which in my case it's been uh

it's been since 2016 and we are now 2024 I never had any of that because I

followed what they taught me yeah and and talking about the transition of years Robert you you did PD a couple of

years back and and Joyce been doing home heemo for some time there have been Innovations and Improvement in the care

for both PD and and and home heo um and we continue to see like the machines are

smaller uh that changes as you mentioned Robert that before they used to deliver the treat the the fluid and the

equipment uh that you needed once a month now it's twice a month to so there have been changes um in the technology

and and the treatment plan and everything what are of the support services or innovations that you think

um would be beneficial for making home dialysis a better option for

patients well there was that talk in one of the um National calls about the uh

development of artificial kidney so patients right now with heart failure

some have the left ventricular assist device which is an artificial um pumping

heart um hopefully um in order to promote Mobility especially in this kind

of world which a lot of patients still work and have other responsibilities um I would like to see

that the development will be faster than uh other uh equipments available there's

also that um that previous surgery um that theuse an animal uh kidney in Zen

transplant yes uh and it lasted uh quite several months and I'm sure there are

studies or investigations going on that will probably um Hassen compatibilities

or uh more advantageous outcome of patients like that yeah um if if uh if

anyone in the government or those uh deciding bodies look at the the amount

of money spent in instat renal disease uh that can be converted into

research so that patients like us with chronic kidney disease dependent on

dialysis would someday uh be um conserving money instead of uh spending

money um the uh while I was I was a member of a national uh organization I

was able to be a panel in the uh uh discussion about the postp uh post

dialysis fatigue syndrome um there are plans of looking at probably looking at

nutrition or something that can be given prior to the treatment and or sustaining

vitamins or Foods or other things in order to avoid that um the other also is

the um I hope that there is a more active uh discussion on how to prevent

infection on patients with uh chronic kidney disease on dialysis our immune

system is uh depressed and anytime we get some type of virus or bacterial

infection the possibility of death is higher than others um a discussion with

data support supporting data was presented at some point that there is a

lot of uh um what like a better word um

not Equity uh uh disenfranchise populations when it comes to care of

dialysis especially for Spanish and africanamerican I'd like to see uh in

the future that care are equal to everybody that there is equal

opportunities yeah I agree there is studies conducted and there have been some new releases coming out from CMS so

yeah I agree Robert any any changes or anything do you think um improvements to

home uh dialysis that can make it a better experience for patients again my

experience just with PD I thought except for the delivery and the amount of

material I talked to people who said I have a small one-bedroom apartment I have no room for Materia yeah you know

now the change just every two weeks or maybe even every 10 days or whatever is a possibility that makes you know one

little checkbox off my list that I would think would be changed I think though

comes down to no matter what we're talking about education now I've spoken with with many patients at Lobby visits

I've done with you that you know their first answer is well I I can't do that I

first of all transplant I don't qualify and that's not true I mean I had heart disease I've had surgery and I still

qualify you know well I can't you know for other reasons whatever one gentleman

didn't want to do PD be he said he'll never be able to go back to Country

Korea I think it was and I explained to him I said oh no you can go you with this type of you know PD you can have

that material with you and travel you know and he said oh and he came right back he was walking out the door turned

around and came right back to have this discussion and that's the important have people besides you know just there's a

few mentors but you have to have more communication those Lobby visits I enjoy

you know and there's times as you know you walk in the guy doesn't even no not interested we just move on from there

and there's people who said they're not interested but are listening as I'm having conversations and then suddenly listening and asking me questions and

that's I mean it just takes the invite from a from a clinic to come and find me

or you and then you'll let me know and that's really what it is and the fact that I am retired and I have the time

that's really this is like my give back because you know I go to that dial

dialysis clinic to visit and I always bring them food and thing and I try to have conversations but I get too

emotional because they were part of my recovery my life and yes they know it's

important work but they're doing their work and I'm sitting there I I can't even tell them much they mean to me yeah

you know and they'll never really know and probably won't see many of these people ever but I just think about them

all the time what they do and how important they what they do is so I I I

appreciate that thank you so much that I I think that's important and that's one of the components that we're working on

with the uh our patient family advisory Council the PAC an appreciation Campaign which we can share in the future but it

is that it is that important to acknowledge to um that the these are people also working with you to to

improve your quality of life um I I I mean if it's up to us we can spend a whole day here you guys have things to

do uh Joy your work and and then you may some time to be here with us but I do want to give you an opportunity before

you we end this session you both mentioned education and and receiving

support and when we're talking about the considering um the home treatment and

and future Support Services one thing that I keep hearing often is um the

continued support from nurses at home so if patients also had that accessibility

that a nurse can come out after the initial train training that they receive in Center if they can continue receiving

some of that support at home it doesn't have to be every single treatment but um in this in a certain interval of of time

or established interval of time that that nurse can continue providing at the initial transition to home provide that

support so that the patients feel more comfortable I've heard some of that in conversation and I think when we've

mentioned that to patients if that was available they've actually said I wish that was something that was available because it will make me feel a little

more comfortable in my transition from in Center to home so that's something that I I've heard happen and it's

something that there's legisl somewhere I think it was California who kind of

trying to put something in place I'll look it up but I just wanted to plan that se that that's something that uh

has come up in different conversations and it's it's something that has been identified as a possible uh need and and

a best practice that would help promote home dialysis even more but like I said

uh we can spend here A whole day just keep talking about the topic um and we've set a foundation for other topics

here you talk about infection control we talked about transplant and those are topics that we can come back and talk

about in the future but I want to give you guys an opportunity before we end today's um segment that you share

something with the listeners in regards to uh you know they themselves are navigating their own uh kidney kidney

disease Journey uh maybe they considering home dialysis as a treatment option what would you say personally to

uh these patients who are on the fence about it or are not haven't considered it yet um and and it is something that I

mean you you've shared so much of your journey you shared so of your of your experience but any words final words of

encouragement that you could lead them with for me um for me it's only until

you experience then you can tell the outcome so for those of you who are uh uh

thinking about possibly uh doing peronal dialysis or

home hemo dialysis the methodology is what fits for you but for me it uh made

me feel independent uh basically in charge of my

own uh Health um the benefits uh I reap

typically uh basically allowed me to maintain a full-time work the side effects of dialysis are minimal uh

compared to the enter so uh speak with your nephologist and uh try to at least

connect with patients like me or Robert and then eventually um uh try it and

only then that you can tell that you hope that you have uh done or decided a

long time ago a chronic illness cannot be changed If you're diagnosed with

instad renal disease that's why they call it instates but it should not

override your life and it should not define you look at me me I have a full-time job and doing other things and

uh until I get a kidney then I will remain on a home treatment good luck to

you and uh I hope you'll find the best therapy for you just like uh Robert and I great thank you how about you Robert

Joyce said it best everything should perfect I defined myself for a number of

years I said what if somebody asked me who I am I'm a dialysis patient I know I

don't think about that anymore I'm not a DI are you a transplant patient yeah but that's gone too now I'm just living my

my life because when you first when you first start you have to focus fol but you have your life to live I was doing

my dialysis and I just kept going I didn't miss much work I just had a surgery okay let's move on and let's

keep going you know after that and you have to just continue and the biggest thing is ask questions talk to you

neologist talk to the the the social worker the dietician the the charging

nurse anybody ask them the same questions if you have to say I want to talk to somebody I want to talk show me

the paperwork to get started oh it takes months well start now and it will take fewer months than you if you start in

five months you know is the testing yeah it's a little extensive but you go and do what you have to do and I'll have to

say one last thing we in New Jersey are very lucky that we live close to I mean

I could look 20 mile radius how many dialysis clinics to my house I would find at least 30 at least whereas people

throughout the country they have to travel hours an hour half hour 50 minutes for transplant you're talking

six eight hours sometimes they have to fly so again I think I'm lucky in this

area but you just need to ask a lot of questions and put that smile on your face whether you want to or not and

you'll get answers and you'll get you'll have whatever success you're looking for well again like I said Thank you

thank you both so much for those uh words of encouragement and and knowledge and and I appreciate it so much um thank

you for spending this afternoon morning whenever you're listening to this we did start in the morning and it's afternoon

now so uh we have spent a good amount of time here uh I want to extend my heartfelt appreciation for joining us

today and sharing such valuable information your engagement your feedback is what makes this podcast epic

and yes I did use that as a as a pun so uh to all our listeners out there thank

you so much and thank you uh Robert and Joyce for for joining us today uh to our

listeners are there if you have a topic that you want to hear more about if you want us to invite Robert and Joyce and

talk a little bit more about other topics that they have experience with let me know as well um but if uh you

want to be futured in an episode as well as a listener um and you have a story

you want to be able to share I welcome that please reach out to me at my email why kuo quality insight.org thank you

all for tuning in in this episode of The Epic podcast stay connected for more inspiring stories and enlightening

discussions in episodes to come thank you all thank you