I wouldn't say it caught me off guard but I was in denial and when it finally did catch up to me, there was really nothing I could do.

It was too late.

[Lisa]: The way we people eat sometimes is oh.

I never knew that can cause your kidneys to fail.

[Elvis]: I lost an aunt to kidney disease a long time ago.

her family, her kids, didn't understand.

They were telling her, ‘Why are you going to dialysis?

You're not getting cured.

So she stopped going because of that.

She was about the same as my age when that hit her.

[Everett]: With the rural-ness of where we live, the services that are available to us is far.

[Lisa]: In a weeks worth, I probably have like five to six appointments.

Tuba City is 60 miles, just like the same as Winslow.

Dilkon is 30 miles.

Flagstaff is a hundred.

And then Phoenix is like 300 something.

For years I dealt with diabetes and hypertension and not realizing that by not taking care of it the way I should have and living the lifestyle I was then it had its effect and took its toll over, over the years.

[Tina]: My grandfather was a medicine man, and my grandma was, a hand trembler.

She did the diagnosing and my grandfather did the ceremony to correct.

I got to see that growing up.

I honestly think that that's where I got the social work.

My want and my need to help others.

I'm always working on both sides of the world.

Im on the reservation and off the reservation.

I am originally from the Navajo Reservation, specifically Arizona.

I grew up on the reservation as well as off the reservation.

I've worked on the reservation for a long time, and I've worked off the reservation for a long time also.

So I have two different perspectives Patients are frustrated that they can't get quick access to what they need.

Versus the kind of care that we get off the reservation.

[Everett]: Out here, I know if I go to E.R., they're going to send me somewhere.

Because the Hopi health care is not a quote unquote, “full hospital” and they don't have the services that they would at hospital.

If there's anything that they question, they're going to send me somewhere, Flagstaff or Phoenix or who knows where New Mexico, and, I don't want to do that because then I have to be away from my family.

[Dr.

Wong]: There's already a shortage of physician nationwide, right?

It's more pronounced here in the reservations.

The patients feel that that I'm the only physician that's available, that they can easily get in touch with and talk about their medical problems.

Oftentimes I feel like I'm a primary care physician because I get to spend more time with the patients.

Our nephrologists are stretched so thin trying to provide support across a very large market.

And they're educating patients, I mean, over like a 600 square mile span.

It's hard to capture everybody.

Diabetes disproportionately impacts our Native American patient population.

And a lot of that I think comes back to the access to the foods that they have readily available to them.

[Tina]: Our ancestors have been eating the same foods as they have been in the past.

And today, some of the foods are still being eaten.

But what happened and what changed was the culture change.

You know, the fast foods came in.

People having to resort to fast foods rather than their traditional foods is a big difference.

Oftentimes the foods that our patients have access to are commodity foods, high processed foods, the foods that we as dietitians, are constantly telling them that they need to limit.

But thats what is readily available.

That's what affordable.

[Tina]: I believe that the diabetes rate could go down if people are just more educated on a lot of things that they don't have a clue about.

[Dr.

Wong]: Most of my patients, they don't even see a doctor for many, many years.

Therefore, if they have diabetes, the diabetes is uncontrolled for many, many years, which leads to a chronic kidney disease.

And eventually, kidney failure.

[Elvis]: I went into education in 2001.

I've been teaching on and off different subjects.

Everything is living.

It's part of life.

So you have to know how each one ties together.

So that's how you teach.

And that's how knowledge is and how life is.

At school, I used to coach football, wrestling and baseball.

So I was pretty active until I got sick and then I slowed down quite a bit.

My kidney functions we're going down and Eventually I got sick with pneumonia, and I ended up in the hospital.

And then one thing led to another.

They said that my kidneys weren't functioning that good.

They had to put in catheter on my chest to start hemodialysis, So it was kind of, a rude awakening.

It kind of scared me quite a bit.

[Lisa]: I didn't know I had kidney failure.

I got sick with Covid.

I had to get flown out to Phoenix.

The doctors came into my room and said, ‘we need to keep you.

Why?

I want to go home.

They said that ‘Covid attacked your kidneys.

You don't have good kidneys.

You need to start dialysis.

[Elvis]: It was kind of, you're okay one, one day and all of a sudden you're in a different realm to where it was like culture shock to me, where What happened to me?

What's going to happen?

What do I need to do?

[Caitlin]: It was important to learn where all my patients are coming from.

Identifying what I can do to better bond with them allows them to open up to me more, so they're more willing to tell me whats going on in their life so that I can actually help them.

[Jennifer]: I was an E.R.

nurse for years.

Caitlin was just like, ‘come work with me, help me, I need help out here.

So I decided to go ahead and completely switch.

It was a very big change.

I feel like this is where I can do the most good.

[Caitlin]: We have our interdisciplinary team who consists of the social worker, the dietician, the nephrologist.

Collaboration is extremely important for continuity of care with the patients because each one of us has certain areas that we focus on.

[Tina]: We try to accommodate their culture and their values as far as their beliefs and their way of life.

[Lisa]: For us, when we have a dance, we prepare days ahead.

So we go over and help make bread and prepare for the food that's going to be fed, and if I were at hemo, that wouldn't happen.

Hemo, I would go to the center and I would feel crappy.

I wouldn't want to do nothing.

[Everett]: I'm initiated into the Kachina Society.

I have and can participate in the Kachina performances and ceremonies.

But because of my health and dialysis, I can't no longer do that anymore, so that's difficult for me not to be able to participate in something that I'm obligated to do.

[Savanna]: To be able to understand, you know, the background of each individual unique patient is just so important to be able to provide true quality care.

I think of the struggles of transportation is a huge one.

So, many of our patients come great distances.

We had patients that were driving two hours, two plus hours just one way to come in for an in-center treatment.

[Caitlin]: Tuba City is already remote, but this is actually a main hub for this whole area.

This area consists of four towns that we cover.

So there's Tuba City, then there's Kayenta, then there's Chinle, and there's Hopi.

Tuba is like an hour from Kayenta, it's an hour from Hopi.

Hopi is an hour from Chinle.

Pretty much everywhere is about an hour away, give or take.

Its a two lane highway, there's four clinics total, and there's two PD programs.

The locations are remote.

A lot of the patients live on dirt roads.

They take an hour and a half to get there.

Youre driving through riverbeds, you're driving over rocks.

It's very challenging.

It's very challenging.

[Nobert]: In our tradition, you wake up to greet the sun by running towards it before it rises.

You know, that's your blessing for a new day.

That's how you appreciate it.

And just learning how take care of yourself, you know, you learn how to chop wood.

You learn how to cook.

You learn all those at an early age.

You know, you learn how to take care of yourself.

And it's something that you got to learn with as you grow up.

I went through a hard life growing up.

I lost a lot of good people.

Lost a lot of good things in my life.

It was really a big pandemic with alcoholism on the reservation and, that was a big factor of me growing up.

And I became addicted to it.

I had to go to the hospital for some withdrawals and they had to give me a bunch of medicines to help keep me stable but a lot of it wasn't working.

I mean, that's when I found out I had stage three kidney disease.

With PD, I didnt really know what my nephrologist was saying about that when he talked about peritoneal dialysis.

I didn't really know how to pronounce it at the time, and all I know was hemodialysis.

I got, started with PD I started learning how to train myself to do my own procedures at home.

[Dr.

Wong]: The biggest benefit of home dialysis —or peritoneal dialysis— is improved in quality of life.

Home dialysis gives patients the control over the treatment schedule, allow them to travel more easily, continue working, and spend more time with family and friends.

Being able to push for home options out in these very remote areas really gives back that independence and flexibility to our patients.

I didn't really understand at all the difference between hemodialysis going to the center, getting hooked up, sitting there for hours, a couple, three days a week.

Versus, being at home, hooking yourself up to a machine, doing it overnight and then having the day to to do what you want.

So I prefer peritoneal dialysis a whole lot better.

[Lisa]: Peritoneal, it felt good.

The first night I did it, I felt good the next day and it really changed my life, it really helped a lot.

I love peritoneal, it gives me my freedom back.

[Nobert]: Caitlin is a wonderful resource.

The way she's been taking care of me, it it feels like, you know, I trust her.

I trust her with my life.

[Caitlin]: Working with Nobert, he's really come around.

He's progressed so much better.

His treatments go great.

We were able to cut his treatment down to 8 hours from 12, he's able to start working, he's able to go make trips to see his daughter, he's just got a better quality of life.

I always tell my patients it's my my main goal in life to give you as much of your life back as I can.

And I mean it.

[Jennifer]: If a patient does show interest in home, I do a lot of in-home education.

I usually go to the patient.

It's really hard for them to come to me.

I do a pre-home visit, and it kind of lets me gauge what they're going to need based on their home life.

It kind of lets me gauge their family, their, you know, if they're going to have room.

The biggest challenge is: are they going to have lights?

Are they going to have water?

A lot of this population does still live off of the land.

[Caitlin]: Its usually the more remote patients that are on the reservation, probably about, a quarter of them, are in a hogan.

[Nobert]: Well my dad built it, before he passed.

I guess he was trying to start making a home our here for us.

Back then, the old methods was just mud and wood.

And theres still some of them out there that still build it traditionally like that.

A lot of families out here are extended.

We all live together like our own little tribe.

And basically this is the homes that we built back then.

[Caitlin]: This is what a typical hogan looks like.

a lot of times, they dont have running water, they dont have electricity.

[Dr.

Wong]: There's a lot of creative way to overcome barriers to do peritoneal dialysis at home.

We can do peritoneal dialysis without electricity.

We can actually do what we call a manual exchange, where we hang a bag of fluid, on a pole, and by gravity, the water will just drain into the abdomen.

[Caitlin]: The hogans have this wood-burning stove so it will help keep their solutions warm.

If they dont have electricity, they can do manual bags.

[Nobert]: Facing East is pretty much how you greet the sun in the morning.

Even with the tipis, all our homes are like that, you know, thats how you start the whole day.

Yeah I wish I had more of those stories because, you know, when my dad tried to teach me about it— thats kind of one thing I regret was I didnt learn enough from it from him.

I dont know, its even hard to stay up in ceremonies because now I have to do treatments and stuff too, you know?

[Lisa]: My grandmother was making pottery, and one day she was painting her own pottery she said, ‘go paint.

So I grabbed her yucca brush and started painting.

And she goes, ‘you're natural.

I started home dialysis, I was able to conquer a lot of things, you know, selling my artwork.

If you're going to do PD, its a good choice because you can do things that your culture has done.

if you want to get involved with your culture.

[Jennifer]: Culture plays a very big part in health care.

The two tribes are very different.

They both have different cultural beliefs.

They both have different ceremonial beliefs.

You have to keep that in mind when caring for these patients, because it's very incorporated in their care.

[Tina]: On the Hopi reservation, Kachina dances are held, and they follow their religion, the culture, to the point where it can't be missed.

Our patients miss their treatments because of their the dances and the ceremonies that they need to attend.

We try to educate our patients as far as the risks associated with missing treatment.

[Dr.

Wong]: They frequently perform ceremony.

We know that this is very important for the Navajo and also Hopi people.

We actually try to make that work for the patients.

We reschedule appointment for the dialysis.

We adjust the treatment, the prescription for home dialysis as well, so that they will be able to attend the ceremony.

[Everett]: Traditionally, Hopi is an ancient culture.

I can go to my doctors, at the health care center, or I can go to the medicine woman or the medicine man, that's our traditional form of medicine people.

And they've helped me, whether it be physical health or mental health.

And so there's those two different worlds that we walk that we have to be able to understand, appreciate, respect and trust.

We always refer to, we say that, ‘our grandparents used to say, and that's how actually things are passed down in our in our way of life.

And they say, [Navajo word] we said ‘somebody said a long time ago and that's how that things are tied together.

So that's how you have to understand it.

It was passed down a certain way, [Savannah]: Many of our patients speak Navajo or Hopi or Ute.

And so not having education that's in their native language can be a struggle.

And we have a lot of patients that are live in that mindset of, you know, this is what happened generationally to me, to my family.

You know, my parents were on dialysis, their parents were on dialysis.

This is just kind of inevitable.

And so figuring out how we can bridge that gap, and get patients or the community, the education that they need to prevent or slow progression to becoming a dialysis patient is something that we have a lot of opportunity to tackle.

[Elvis]: You have to be sitting by the person, listen to him, listen to him speak.

Listen to him sing to pick it up.

You have to ask questions and say, ‘what do you mean by this wording?

‘What do you mean by the saying?

So that that's how our language is tied and our our culture is tied together like that.

Everything is tied back to way back then.

Grandpa said, dad said and so forth.

There has to be a level of trust and understanding, and we have to be committed to giving that individual a chance.

You have to believe them, you have to understand them, and you have to listen to them.

What they're telling you is for your best interest.

[Caitlin]: Everybody just helps do their part to do what we can for the patients.

by having a social worker on staff that helps with setting patients up with any referrals or transportation issues that they might have.

We have the dietitian on staff that helps them with their diet and medications.

The nephrologists travel here to come see the patients in person, face to face, multiple times a month.

Giving the patients face to face interactions with the care team and having resources to give them, I feel is huge.

[Savannah]: I think everybody deserves to have equitable care.

We are working really, really hard to provide the best quality of care, and we have just some of the most incredible patients and teammates.

And now with home, being able to to bring home on a grander scale in such a remote area.

We have a lot of opportunity to have a great impact and keep our patients home.

[Jennifer]: I can try my best to at least make these patients lives a little bit easier, I think that really matters.

Anything is possible.

I've learned that on the reservation, anything is possible.

[Caitlin]: In the beginning, I was just the next person.

They're like, ‘we'll see how long it takes until the next person.

I was like, ‘you're stuck with me for a while.

I'm not going anywhere.

I put my heart and soul into my job.

Just seeing the change in the patients is the biggest thing.

That's what makes it worth getting up every day.

[Tina]: If I can be that person for them just to get that one appointment made or that one step closer to getting that transplant, that's the joy I get.

The joy that I get is making sure that theyre able to get what they wanted done.

[Dr.

Wong]: Very beautiful culture, and you know, you get to know, them in person and, you learn about their culture and you start to fall in love with them.

I feel like I'm being treated like a family here.

[Everett]: We want to be here tomorrow, for our people and for our children.

That's an important thing to remember.

[Lisa]: I'm okay.

My favorite two words is ‘I'm okay.

I keep telling myself Im okay because I'm still here, I'm still living my life.

I'm still enjoying my life.

I'm enjoying my kids.

I'm enjoying my grandkids.

I'm enjoying my parents.

You know, I'm still here and I'm okay.