Transcript: Hot Topics in Kidney Health episode 1x18
How kidney disease affects your mental health
00;00;04;28 - 00;00;27;18
Kelli
Welcome to Hot Topics and Kidney Health, brought to you by the National Kidney Foundation. Each episode we highlight the latest in kidney research bring you up to date news and kidney care, dispel myths and answer your kidney health questions. People with chronic conditions like kidney disease face mental health struggles such as depression or anxiety.
00;00;27;18 - 00;00;41;06
Kelli
For many people with kidney disease those challenges often go overlooked or under-treated. In this episode, we sat down with a mentor and mentee from our NKF Peers program to discuss their experiences and the importance of talking to someone who knows what you've been through.
00;00;41;25 - 00;01;09;27
Marissa Argentina
Hi, I'm Marissa Argentina. I'm the patient program director at the National Kidney Foundation, and I work primarily on our NKF Peers program that provides peer mentoring for people with kidney disease, as well as people considering being living donors. And I'm so excited to be joined today by a wonderful mentor and mentee pair, so I'm going to hand it off to them to introduce themselves. Doris would you like to go?
00;01;10;02 - 00;01;32;08
Doris
Yeah, thank you, Marisa. My name is Doris, and I am a kidney patient recipient. I will have been transplanted six years this week, so I get to celebrate my kidney-versary. I'm doing great. I'm doing well. The kidney journey itself was a little bit rough, but I was diagnosed a good eight, nine years ago with kidney disease and went through a year of peritoneal dialysis.
00;01;32;15 - 00;02;03;16
Doris
I got a kidney from a living donor, and I'm doing great. I was originally diagnosed with PKD polycystic kidney disease turned out to be a wrong diagnosis. And then I, I, I'll, I'll share more about this later on. But there's been a lot of moments throughout my kidney journey that have where I have actually felt kind of let down by the health system and have had to learn how to advocate for myself and ask questions and go online and learn everything I could about kidney disease.
00;02;04;08 - 00;02;22;11
Doris
And so the real diagnosis, I think now is IgA nephropathy that's what me, my transplant surgeon and my nephrologist says so. But here I am and I'll be happy to talk more about my journey a little bit later. But, but that's me in a nutshell.
00;02;23;03 - 00;03;05;25
Nusca
Hi, my name is Nusca. I'm a mentee. I knew I had high blood pressure for quite a long time and it was unmanaged for a long time and my doctor put me on so medication and it wouldn't go down and around 2003 I was diagnosed with kidney disease, but back then it was functioning at 98%. You know, I'm young, so I go on living my life, not thinking about it or anything like that and, and then I had my son and 2014 and that's when things started happening.
00;03;06;00 - 00;03;33;00
Nusca
That's when they told me that I had ideas and life after the, that same thing and I didn't know anything about it either. And I started going on Google and the thing is on Google and started reading about it and seeing the severity of it. And I'm a very private person so I don't like talking, you know, letting people know, you know, when I need help or anything like that.
00;03;33;15 - 00;04;08;12
Nusca
This disease has forced me to change you know, to advocate for myself like you Doris and to talk to people and learn about it. And also, you can't suffer in silence with this because you need other people's help. I need a donor most importantly. So I had to learn to speak, you know, share something that was very private, very intimate, and made me feel vulnerable, scared and, you know, and I had to overcome that so that I can get the help that I needed.
00;04;08;18 - 00;04;35;06
Nusca
So I was given all these factors. And one of the things was they give you the option of having someone coming over and explaining the disease to your immediate family and telling you the options that you have. And I think that's how I learned about peer mentoring. The woman suggested, you know, it would be a good idea to look into it, to speak with other people that are going through what I'm going through.
00;04;35;06 - 00;04;58;15
Nusca
And I reached out and I filled out a form online and someone contacted me and gave me the option of choosing a mentor. And I wanted to find someone that, you know, was going through what I was going through. I was a young mom with two young children. I was nervous what to tell them, how to tell them, because my life was changing.
00;04;58;28 - 00;05;26;08
Nusca
And I wanted them to be part of the whatever process that we were doing that we would go through it as a family I didn't want to keep them in the dark because I feel like it would be more scary for them not knowing what's happening. But I wanted to have the right language. The way terminal to be able to explain to them, to answer their questions, and also for myself as well, to speak on something that's happening to me that I'm scared about.
00;05;26;08 - 00;05;49;01
Nusca
I'm nervous about because my kids were young and I mean, they're young marriage and you know, so it was very scary. So I was very fortunate to be paired with you. Doris, you answered all my questions. You made it so easy for me, someone so private, to come back time and time again with more questions and nothing was off limit.
00;05;49;01 - 00;06;16;12
Nusca
And you shared about, you know, your intimate experience made it doable to me. And also helped me to navigate uncharted waters, you know, because it was scary, you know, the doctors, the doctors, that's what they do. But to have a human person that has gone through it and as I was going through it, I was able to reach out to you and you told me what to look forward to and what I can expect and what you experienced.
00;06;16;12 - 00;06;39;13
Nusca
So it felt like, you know, you were a guide through the whole experience. For me, though, it was scary. I knew you had gone through it, and I knew to some extent what to expect, you know, and the one question to ask the doctors and and so I started dialysis two months ago, and it's been going very well.
00;06;39;13 - 00;06;54;22
Nusca
I have lots of energy. The numbers are trending upward for me. So I'm very good for and excited and I'm looking forward to, you know, hopefully get a kidney. That's the ultimate goal. But so far, the dialysis is working great.
00;06;55;09 - 00;07;12;01
Doris
Yeah. That's so great to hear. And thank you for such wonderful words of encouragement. I think I love being paired with you, Oscar, because I, I feel like I'm a little bit ahead of you. Like, I have my transplant now. My kids are a little bit older, but I feel like we're still kind of walking along this journey together.
00;07;12;01 - 00;07;41;15
Doris
And so I'm use the word guide. I see myself as someone who is walking alongside you, but still kind of going through it. You know, like I talk about PD and peritoneal dialysis, and I think when I went through it, how much I wanted to have someone to talk to as well. And you're right, there is a ton of clinical information online and you know, I go to all my appointments armed with questions, but then it's those moments where you feel like, did it cramp up for you?
00;07;41;15 - 00;08;04;27
Doris
You know, when you first do the drain or does like how do you how do you shop for clothes? Because suddenly now I feel pregnant and my backwards and I'm having trouble breathing and I'm sometimes cramping. But like those are the kinds of questions I want it to have someone to talk to. And so hearing you share about that is and brings me back to some of that and kind of reminds me of that journey.
00;08;04;27 - 00;08;27;03
Doris
But you know, as a as a kidney transplant recipient now, you know, I, I am praying that, you know, that works out for you as well. But it's, it's a privilege for me to kind of walk alongside along that journey. You also use the word like being private, and yet it's a very public disease because I remember going through the same thing where I felt like I really just did not want to tell people about it.
00;08;27;11 - 00;08;49;02
Doris
And it's it's very much in my culture also like we just don't like to impose on people. And yet you're depending on someone outside of you for something huge. And so it's it's scary. It's scary to go public. At first I didn't go public. I just kind of told a few people close friends. And then at some point my husband said to me, you know, you've just lost two potential donors.
00;08;49;02 - 00;09;08;02
Doris
And so you're going to have to get way more public about this. You know, I was keeping people updated on my Caring Bridge website, and then I turned that into a blog because people kept asking me, you know, do you have a donor yet? How are you feeling? Can you eat? You know, all kinds of questions. And most of the time it was, I have no news.
00;09;08;02 - 00;09;28;05
Doris
I'm just in this period of waiting. And for you, I think you were able to put off dialysis for a long time. So I liked kind of living through that with you. And when I did PD, I remember when I started, I had all those questions like what what PD belt do you use to hold the catheter? And there's just like tons of options online.
00;09;28;05 - 00;09;43;14
Doris
But I wanted to talk to somebody to see, well, what worked for you and you know, I ended up finding my own way but also wanting to share that. So, yeah, anyway, it's really it's been good. I think we've been connected for a good two, three years now.
00;09;44;09 - 00;10;00;20
Marissa Argentina
It's really amazing to hear, you know, how long you two have been connected and you know, you've had so much impact on each other, but do you feel like you're talking all the time, like, what does that look like for your relationship? Like, how do you two communicate what's typical for you?
00;10;01;05 - 00;10;21;28
Nusca
You know, we just check in on one another. If I realize it's been, you know, a couple of months or if I have something that I need to ask, I send a message you know, I set up an appointment and then we we call each other based on the appointment time. And and those has been gracious enough, you know, talk to me 20, 30 minutes.
00;10;21;28 - 00;10;48;08
Nusca
And, and I think part of it, too, what makes it really successful for me at least, is the fact that we didn't just keep it about the dialysis you know, because it's a serious thing, but we catch up on each other's families. We never met before, but we started talking about, you know, I have a teenage son and so we talk about what's happening in our kids lives and being able to catch up and say, you know, how's your son doing today?
00;10;48;08 - 00;10;58;22
Nusca
How's this doing? So it makes it more like a relationship rather than just, you know, about a disease. So I really appreciate that.
00;10;59;02 - 00;11;13;21
Marissa Argentina
It sounds also that had such a big impact on you on how to talk about the kidney disease with your children and your family and if you've never experienced it before. I think having someone who maybe has done that already is really helpful. Right.
00;11;14;03 - 00;11;33;28
Nusca
That was extremely helpful. But now my children know what I do. So it's not a surprise. You know, they've asked me how how it's go and, you know, and stuff like that. So we're going through it together. So I'm very thankful. That is, you helped me to find the language to be able to communicate, you know, at their level.
00;11;33;28 - 00;11;40;21
Nusca
And we have a somewhat an understanding, you know, they know what's happening and it's not as scary yeah.
00;11;40;21 - 00;11;58;13
Doris
Yeah. And I remember it being a struggle for me, too, because, you know, at church, you know, once once I did cast the net wider and we kind of publicly announced it. People were constantly coming up to me like, how are you doing? They're going up to my husband. And but I kind of wanted to tell people, like, don't approach my kids too much.
00;11;58;13 - 00;12;23;11
Doris
Like, I don't want them to see that this is something really, really huge in a way that would scare them. And so sometimes talking to Anushka, I would say, you know what? I'm not sure I knew how to do it right either. And that that was OK. Like, it kind of normalizes this experience that, yeah, we just do the best we can and we want our kids to understand but not to the point where it's kind of freaking them out either.
00;12;23;14 - 00;12;38;27
Doris
And even though my kids are maybe, you know, five years older than yours now, our kids are doing such different things. So I want to hear about what your son is doing was very different than what my kids are doing. And then plus, I don't know why, but there's something about you having a daughter. I'm always asking you.
00;12;39;15 - 00;12;39;24
Nusca
Girls.
00;12;39;29 - 00;12;53;15
Doris
Do. I don't know what it's like to have a girl, you know? And I think especially when my boys got to their teen years, I and I see my friends with daughters and they're going shopping and they're doing the makeup thing and all of that, like, let's do that.
00;12;53;15 - 00;12;54;02
Marissa Argentina
Like, yeah.
00;12;54;24 - 00;13;07;03
Doris
So there definitely is a friendship there. And like, yes, kidney disease is not the only thing that defines us. We have so much more other things going on. So, you know, it's fun to talk to you and ask about all of that. Yeah, same.
00;13;07;03 - 00;13;07;13
Nusca
Here.
00;13;10;09 - 00;13;26;28
Marissa Argentina
You know, I'd love to know a little bit about what kind of impact has it had for you, new Scott, in making decisions about your kidney disease? Like what kind of questions did you have in the beginning? Like, did you even know what to ask in the beginning of a mentor?
00;13;27;09 - 00;14;00;06
Nusca
No, I didn't. I think my main concern was to acceptance, you know, because I'm young and I don't smoke, I don't drink, I don't do any recreational drug. How did I get here? So it took me a long time to get behind this and accept it and and figure out, OK, how do I live with this? You know, because I would think it based on lifestyle and no one in my family has kidney disease.
00;14;00;17 - 00;14;32;27
Nusca
So it was very hard for me to accept it. So once I started speaking with someone that has it and also I think those you helped me to understand, like you, mate, you gave me some and some examples how you work your your program. You know, you you you integrate the, you know, the treatment into your life. You explain to me, you know, sometimes you did it in your car, you know, just making sure that, you know, it's part of my life.
00;14;32;27 - 00;14;58;05
Nusca
And I think I've adapted that mindset as well. You know, to just like not let it be a third person that come into my my house, you know, disrupt everything, but rather that, you know, one more thing that we add on to our schedule, you know, and stuff. So it's not interesting. So it's part of our lives, you know, so I create a schedule and and it's part of our my regular routine and stuff.
00;14;58;05 - 00;15;06;27
Nusca
So I think that helped me accept it more, you know? So I think your approach really helped me yeah.
00;15;06;29 - 00;15;24;24
Doris
I think also because I had read that somewhere where somebody on peritoneal dialysis like went on this, you know, days long boat trip. And I thought, I guess you can work dialysis into your normal life, like, you can't stop living. You can still do the things you loved. And so so I did that. And so I was very happy to share that.
00;15;24;24 - 00;15;44;26
Doris
But yeah, I would go on trips and then, you know, realize I can pack all my, my dialysis solution and tubes and everything with me and not feel like I have to. It's a it's a new normal. But but you work it in. So it is a normal life. You know, don't deny yourself all the things that make you that bring you joy and keep you active and keep you moving.
00;15;44;26 - 00;16;04;25
Doris
So that's the beauty of PD. And so I was happy to share that. And I also wanted to be like very real, like, yeah, I'm not going to lie. Sometimes the cramping really hurts and but this is how I deal with that and want to get into the certain position that helps. And there have been times where I just couldn't stop it but talk to my nurse and and she helped me through that.
00;16;04;25 - 00;16;22;06
Doris
And adjust some things. So yeah, it's just part of the overall experience. And so to be able to share that with someone else is it's really nice because I like knowing that. Yeah. There, there are ways that you can work through whatever it is. And also, Nisha, you're just such a positive person. Like, you just have such a positive attitude.
00;16;22;06 - 00;16;32;29
Doris
Like you'll say, Yeah, I've had my ups and downs and but you work through it and you're surrounded by good people too, and, and you're such a good mom and wife and thank you.
00;16;33;10 - 00;16;58;28
Marissa Argentina
Doris. It's once like, you know, you've in this mentoring role, you've really been like a role model for New York, and you keep it pretty real. I mean, I think, Nisha, you mentioned before, like, you know, the doctors and the clinical staff and various you mentioned there's so much clinical information out there, but unless you have that firsthand, experience, it can kind of still feel overwhelming at times for folks.
00;16;59;18 - 00;17;18;25
Marissa Argentina
Yeah. You know, what's it really going to be like? I've gotten questions like people are like, what does the alarm sound like at night? Is it going to wake my partner up or how long is it going to be? Or, you know, how full am I really going to feel like? What does that really feel like? And I think unless you've done it before, you can't really answer that.
00;17;20;00 - 00;17;47;21
Marissa Argentina
And I think that's one of the benefits of what a mentor can do. They have that firsthand experience and, you know, they can share their experience, and it might not be the same for everyone, but just to know that someone else has been there can be kind of like a relief. So, you know, I know, you know, you guys have been talking a lot about how you've connected and you guys have been connected since 20, 19, and it's 20, 22 right now.
00;17;47;21 - 00;18;10;18
Marissa Argentina
So that's a pretty incredible length of time. And I did kind of want to talk a little bit about how it works on our end and how we match people. Typically what we do, you know, we get applications online. People come to our website kidney dot org back last year and they fill out an online application or they give us a call, eight, five, five and a half peers.
00;18;10;29 - 00;18;38;00
Marissa Argentina
And you know, we find out a little bit about themselves what's important to them where they're at. You know, were they someone like, you know, Star who hadn't started on dialysis yet or you know, are they someone who needs transplant or are they already on dialysis and having a hard time adjusting? And then we take that information and we get their availability and we try to match them with a mentor who's going to be right for them.
00;18;38;00 - 00;19;00;15
Marissa Argentina
And I would say it's a little bit like online dating, like we do the best job people up and we have really good matches like you do well and they are their relationships and they can last for quite some time. So you guys are a great example of that. And sometimes people just have basic questions like, you know, how do I get on the transplant list?
00;19;00;15 - 00;19;17;29
Marissa Argentina
Like, what's the biggest hurdle? Or, you know, can what can I eat? And we always provide additional resources to for folks. But, you know, people don't have to speak as long as you to do it. We don't force any length of relationship either, which I think is good.
00;19;18;16 - 00;19;38;07
Doris
You know, and I would just add to that, there have been periods where new skin, I have talked more often and then other times where there's just been many months, you know, in between. But the point is, is that she knows I'm always available and she just sends a text, you know, through the Piers app. And she lets me know, like this is coming up, you know, can we can we touch base?
00;19;38;07 - 00;19;52;26
Doris
And so so there's you know, there's just so much freedom and flexibility. And I've had people where we connect one time and I answer a question and then for other people, you know, like MINUSCA, you know, we actually have this friendship. And so so it works out that way as well.
00;19;53;08 - 00;20;17;29
Marissa Argentina
Yeah. I think that's the great point. You know, it is so different in every relationship and what people want out of the mentoring experience. And that's kind of what we let people decide on their own, you know, and it's nice that you too can have that ongoing relationship. And, you know, just to touch base in the app and, you know, communicate that way and then also have phone conversations on the app, too.
00;20;18;04 - 00;20;37;22
Doris
So I have one question because sometimes I hear people being a little bit hesitant to to be paired up with someone that they've never met before. I mean, I know you go through this little vetting process to find the appropriate match, but at the same time, Niska had no idea who she was going to be paired with. So I to ask you, new set, did that give you pause?
00;20;37;22 - 00;20;49;20
Doris
Were you a little bit uncertain about that or you felt better? Because sometimes people want to know someone they've kind of at least know a little bit seen from afar. But here you are being matched with a total stranger.
00;20;49;20 - 00;21;09;26
Nusca
If I recall correctly, I think they gave me the option of several people. And the person said, you know, if it doesn't work out, give us a call and we'll pick someone else. And, you know, I say a prayer and I call and we started chatting and and we haven't stopped since. So, you know, that was unique to my experience.
00;21;09;26 - 00;21;30;13
Nusca
But, you know, I didn't have a need to call back to be paired with someone else. And I think we took it easy the first couple of times that we spoke, you know, I was the main thing that was on my mind were how to communicate to my children, you know, because I knew things were progressing rather quickly and I wanted to get in front of it.
00;21;30;18 - 00;21;54;06
Nusca
I think that was the main thing for me. And then I expressed it to you and the fact that you expressed to me how you you dealt with it as a family. It helped me to be able to get the framework going. And also having the people come over and have the meeting here. And I think the kids understand, you know, we dealing with it as a family.
00;21;54;06 - 00;22;22;05
Nusca
I felt like a stress was evaporated because we weren't having separate communication, you know, between my husband and I and the kids knowing that something is happening. So I felt like the support, having spoken with you and you sharing with me how you dealt with it, because I had no clue, you know, what to say, how to say it from the moment that my kids knew what was going on, I kind of felt like now I can take care of myself.
00;22;22;05 - 00;22;42;15
Nusca
I can face it, so to speak, because I wasn't accepting it because I was like, I didn't do anything to deserve this. Why am I here? And, and stuff like that. So I think I, you know, was able to work through that and be able to find help to be able to help myself to take care of myself, you know, because it was progressing quickly.
00;22;42;21 - 00;23;10;15
Nusca
I know it took me a while to start dialysis because to this day I still have some kidney function. It's about functioning about seven, you know? So it's another thing to figure out when do you start dialysis? You know, that was another thing that I had. And I think I've called you a couple of times on that, you know, and you even when I was telling you I'm at 15, you're like, well, usually they started already but for some reason you want and again, it's tailor made for each individual.
00;23;10;15 - 00;23;38;26
Nusca
Some people start at 15 and I, I didn't start until seven because I still had you know, my numbers were OK. My doctor was waiting for me to display certain symptoms before they would put me on. It was going down and then I decided to start dialysis. That's something that everyone has to decide for themselves when it's the right time and they come to find out starting at seven, I have a lot more energy.
00;23;38;26 - 00;24;08;21
Nusca
I felt like I waited too long because I was suffering needlessly because I was waiting for signs and symptoms to tell me that it was time to start dialysis when in fact I didn't have to wait. I could have started because it made a tremendous difference my energy level is different. My appetite is different. My skin, my my spirit, my mood, you know, because your organ is shutting down, you know, and you're not processing things.
00;24;08;21 - 00;24;31;14
Nusca
But with the dialysis, you know, you get some toxicity comes out, you know, and stuff. So you have more energy, more color. And so, you know, I'm glad that I decided I didn't wait, you know, for the symptoms, you know, to tell me it's time to start that I made the decision to start, you know, before my kidneys were completely, you know, shut, you know, and stuff.
00;24;31;14 - 00;24;54;02
Marissa Argentina
So I think you bring up a good point, too, about like what can a peer mentor do or not do? You know? And, you know, you could probably do worse. Did you share like you when you started dialysis? Because I know that's typically something that like, you know, doctors can advise you about when it's going to be best for you based on your labs.
00;24;54;22 - 00;25;03;06
Marissa Argentina
But, you know, we can certainly share when they when they started dialysis or what it was like for them. So I think that's an important distinction to make.
00;25;03;10 - 00;25;24;29
Doris
Yeah. So I you know, I shared with New York when when I started, but that you're right now it's very much an individual decision based on a conversation between, you and your doctor. And so for her, it was different for me and mine was probably later than other people, given my circumstances of, you know, almost having a donor and then backing out at the last minute.
00;25;24;29 - 00;25;31;19
Doris
You know, so every story is different. You know, I'm happy to share my experience, but it always goes back to you and your doctor.
00;25;31;19 - 00;25;56;08
Marissa Argentina
And I think what's important for everyone to know, too, is that, you know, you, Doris and all of our mentors all go through training, too, because we want our mentors to know exactly that. You know, what people can and can't expect from sharing your story. You know, like you said, every experience is so individual, but still sharing that is so impactful on people's lives.
00;25;57;06 - 00;26;22;23
Marissa Argentina
And our training is fairly extensive. You know, it's about 4 hours long. It's all done online so people don't have to go anywhere. But, you know, it is really important to make sure that you as a mentor also feel ready to be a mentor to other people. It's a big undertaking. And I think, Doris, I'd like to know from you a little bit about, you know, how has being a mentor impacted your life?
00;26;22;27 - 00;26;51;22
Doris
I love being a mentor, and I see it more as a supporter. I am a supporter mentor. Sometimes, you know, I can share, you know, what's worked for me. And other times I have felt like I don't really know. That was a tough one to deal with. That's a good question. Niska and I feel so much gratitude because it reminds me well, it reminds me how tough it was, but also just the ability to not let my experience go to waste and to be able to share some of the lessons I've learned along the way.
00;26;51;22 - 00;27;11;17
Doris
So I just really enjoy doing this and just to be able to encourage someone else, because when I was going through it, you know, I really wish that I had some people to talk to and I scoured the Internet like I want to read some stories, some blogs, some anything, you know? And I have since found we have an online chat where a lot of people share their personal experience, but I didn't know about it then.
00;27;11;17 - 00;27;33;09
Doris
But also just being connected to somebody. I wish I had that. So I love that I can do that now. And I have to be honest also, I think part of wanting to share my experience just with others is driven a tiny bit by kind of the frustration I had as a patient and just feeling kind of let down because I had a doctor who said No, it's too early to get on the transplant wait list.
00;27;33;09 - 00;27;48;22
Doris
And then I went and got a second opinion. He said, You should absolutely get on the waitlist. And then another doctor who said, Oh, maybe in three years you might need a kidney transplant. And I said, Well, I've been charting my GFR, and according to the trajectory, it's more like six months, you know, and sure enough it was six months.
00;27;49;02 - 00;28;07;20
Doris
So there's a sense that patients just need to be equipped, they need to advocate for themselves, they need to ask the right questions. And so for me to be able to be a peer mentor, a supporter, I think that has been very empowering for me as an advocate and also feels good to be able to pass that on and share that with other patients.
00;28;07;28 - 00;28;16;16
Marissa Argentina
Absolutely. That's incredible. And we're so happy to have you as a mentor and we have lots of other mentors too.
00;28;16;16 - 00;28;33;06
Doris
So it's a great program. You guys do a really good job. I mean, after the 4 hours, we feel much more equipped without the pressure of feeling like we have to give advice because we don't we don't want to. And and if any of us who want to, we shouldn't, you know, that's not our role.
00;28;33;13 - 00;29;05;00
Marissa Argentina
I think that's such an important point of what you're saying, like advice versus personal experience. Is are two totally different things. And I think we emphasize really highly on the training that people need to go back and, you know, speak to their health care team and how to have a good relationship with that health care team and making sure that people have the information about, you know, if they are having a good relationship like what are some questions you could be asking or empowering them to be active members in their health care?
00;29;05;00 - 00;29;28;22
Marissa Argentina
Right. I do want to point out that May is Mental Health Awareness Month and you know, sometimes people who have chronic conditions like kidney disease can also face mental health struggles like depression or anxiety. But sometimes that goes overlooked or under treated. Well, you know, they're trying to work through their physical needs of a new diagnosis or treatment of something like kidney disease.
00;29;28;22 - 00;29;54;21
Marissa Argentina
And trying to figure out what to do next. And that can be really overwhelming. And, you know, there have been some studies on treating depression while you're on dialysis and will include those links in case anyone wants to go back to check out some of that information. But, you know, did either one of you have any struggles like depression or anxiety while dealing with your your kidney disease?
00;29;54;21 - 00;29;58;18
Marissa Argentina
Or have you felt like mentoring had an impact on that?
00;29;58;24 - 00;30;28;15
Nusca
I did have anxiety going through the process with Peyton of dialysis or, you know, even though I knew I was going to do it and at the same time, the hospital for the transplant, they wanted to overlap the appointment because I guess there is a series of tests you have to take medication when you get an implant. And you know that the transplant that the kind of they need to do testing and stuff like that, it all fell overwhelming.
00;30;28;21 - 00;30;51;27
Nusca
And I had to say stop. You know, I was in the office and I said, no, no, no, I can't. I have to, you know, focus on if I'm starting dialysis. Let me get acclimated with that aspect of it because it's a lot. I'm going to do the training and then I'm going to learn, you know, how to take care of myself, how to do the process.
00;30;51;27 - 00;31;14;00
Nusca
So I couldn't focus on a transfer because I don't have a donor yet and stuff. So I think though it's, you know, speaking about, you know, being an advocate for yourself. And I have to say I couldn't do this. So they gave me until October to get myself situated with this board. And then we can take a look at the transplant aspect.
00;31;14;00 - 00;31;30;11
Nusca
You know what the population is in the event that I get a transplant. So I think being able to say this is too much, you know, because at the end of the day, you're the one that's going through it day in, day out. So you do have to be your best advocate and say, you know, no, this is too much.
00;31;30;13 - 00;31;42;22
Nusca
I can only focus on one thing at a time. And I think that was the best decision for me. You know, now I feel like I have the the training, you know, and then I'm doing it well and now I can focus on the next part.
00;31;42;28 - 00;32;02;10
Marissa Argentina
It sounds like you were very empowered to be able to manage all of the things that were coming at you at once. That's pretty amazing to be able to say, hey, I need a second to adjust to one thing at a time, and not everyone might be able to see that. So good for you.
00;32;02;13 - 00;32;30;26
Doris
And you can I think for me, feeling like when they say information is power, it is. For me, I felt like as long as I had something to do a question to ask people to see, you know, I go to my appointments armed with those questions, I felt like there was something I could do. But, you know, when you can't do anything and there's no one to talk to is kind of in the middle of the night, especially when the machine starts to wear and buzz and then it wakes you up and then you're just lying there.
00;32;31;03 - 00;32;48;18
Doris
So I would say in the middle of the night, that was the hardest because that's when you don't feel like you can just go online and have people to talk to. You're lying there. And those are the times when I would cry and I would have these conversations with God, and it felt like I would I found myself saying like, God, could you?
00;32;49;08 - 00;33;07;20
Doris
Because I remember reading, you know, statistics from my transplant center, you know, for every year that you're on dialysis, that's a 10% chance of dying. And so, like, does that mean in five years there's a 5050 chance and I'll still be here? I knew that I was you know, for me, the numbers might be better because I'm on the healthier side of that whole group.
00;33;07;20 - 00;33;26;06
Doris
But you're living with uncertainty. And I remember saying to God one time, like, OK, could you at least keep me alive so that I could meet my grandchildren, you know, and my kids were maybe about, you know, 15, 18 at the time. And then I just thought, you know, keep me alive. For another ten years or maybe five years or whatever it will.
00;33;26;06 - 00;33;49;15
Doris
Not five years. Not that I wanted my kids to have kids five years. But, you know, there's I'm, I'm negotiating with God because I'm in this moment where I'm realizing, you know, my life and, you know, mortality. And I don't know what this kidney disease is going to look like. I had had three or four living donors that fell through at that point, some at the 11th hour.
00;33;49;15 - 00;34;15;27
Doris
So there is this sense of I don't want to have too much hope because you're just setting yourself up for a bigger fall. And so those are the toughest times for me. And so that's where support really, really helps. You know, I had lots of friends, you know, once I as much as I didn't want to share about my kidney disease and need for a kidney once I did, the flood of support came in.
00;34;15;27 - 00;34;37;11
Doris
And that's what I really needed. And so I always encourage people, you know, share about it. And I talk so much about advocating for myself. Sometimes I could and sometimes you're not at a point where you can because you're just so exhausted and you're tired and you're and you know, maybe you're a little bit mad at life. I had what I call my advocate team, you know, my kidney team.
00;34;37;11 - 00;35;04;03
Doris
I had people around me who got educated enough about the whole transplant process. And that I had publicly said, if you are interested in getting tested for me or just learning more, here are some people you can talk to. And that just took the pressure off of me and took the pressure off of people not feeling like they might consider, but then might change their mind like they would have the freedom to change their mind if they talked to, you know, some of those people anonymously.
00;35;04;03 - 00;35;26;04
Doris
And they never told me who approached them. And I you know, I didn't want to know because I wanted people to to have a freedom. Yeah. To be able to talk to these friends of mine. One was a nurse. Another was one of my pastor who I found out later on she got tested for me as well. So just like these stories of goodness, I mean, that's what gives you hope, the goodness of people who and then sometimes there are people you don't even know that.
00;35;26;04 - 00;35;36;17
Doris
Well, that is incredibly inspiring and encouraging. And so you know, crises bring out the best in people, and that is, you know, some of what keeps you going.
00;35;36;26 - 00;35;58;24
Marissa Argentina
Yeah. And I think you brought up such a good point where it's like it can be really hard to share that information right away with people, especially if you're a private person, even if you're not a private person. Like, it's daunting to kind of even start to have a conversation about your health. And so I think, you know, one of the things that's nice is that, you know, people can be kind of anonymous in this program.
00;35;58;25 - 00;36;28;10
Marissa Argentina
You know, you're not meeting up in person. You're learning each other's first names, but, you know, you're not exchanging all your personal contact info and becoming brunch buddies or anything, you know, but it can be empowering to start that process with someone that maybe you don't know personally. And once you see that kind of build up and hear from them, like, what did they do and start to have those conversations with some ease with other people that you are more familiar with or you know, you have more personal relationship with.
00;36;28;10 - 00;36;35;18
Marissa Argentina
So I think it's kind of like starting starting anything starting is the hardest part, right? Would you find that new stuff?
00;36;36;12 - 00;37;01;27
Nusca
Actually, that's exactly how it worked for me. Because, you know, the people that I knew, they know how I am. I don't talk about personal stuff. And so speaking with those I know she I knew she was far away. You know, I'm in Massachusetts and she's in another state, you know, so it was someone I had no plan of seeing or meeting.
00;37;02;05 - 00;37;31;11
Nusca
So the anonymity made it feel safer for me to be able to be vulnerable, to share what I was feeling. I think I felt safer to be able to express my fear, doubt my insecurities about this disease and have her share her experience with me. The more that we spoke, the easier it became, to be honest about what I was feeling, where I was, because this is someone I may never meet face to face, you know?
00;37;31;18 - 00;37;54;20
Nusca
So it worked for me that way because I would get shy and, you know, you you feel a fear of judgment so this was someone that's new. And, you know, I was making some changes as well to be able to learn to speak about this because I need help. I need to know how to navigate this new chapter of my life.
00;37;54;20 - 00;38;00;10
Nusca
So I'm very grateful to you guys. I just want to let you guys know, too. I'm taking my first.
00;38;00;10 - 00;38;01;25
Marissa Argentina
Trip only.
00;38;02;24 - 00;38;06;28
Nusca
To go into Florida, so I'm traveling with my baby. Oh.
00;38;07;07 - 00;38;09;17
Doris
I read all really.
00;38;09;19 - 00;38;40;28
Nusca
Excited to see how and the treatment center, they help you to understand, to make it part of your life. And whatever you usually do do with, you know, we've we can talk it through and figure out the best way to make it happen. So and I'm working in a way that, you know, I'm something completely new and that without being without fear, usually fear is a is a you know, a barrier for me to form doing different things.
00;38;40;28 - 00;38;51;18
Nusca
And I find that, you know, I'm decided I'm not going to be fearful. I'm going to tackle this head on and we're taking our first trip and I'm going to see how it goes, you know?
00;38;51;22 - 00;39;18;28
Marissa Argentina
Well, that is awesome. I'm really glad to hear that. And it just goes to show how far you've come in managing your kidney disease. And even though you started on dialysis, it sounds like you have made strides in so many things. You're still working and you're doing dialysis and now you're traveling. Traveling is stressful enough and your mother and mother and that's already a full time job.
00;39;19;09 - 00;39;46;25
Marissa Argentina
So, you know, that's a lot to take on. And it sounds like you're doing it with, you know, a lot of good adjustment. So awesome. So I really thank you both for not only being incredible people and partnered up and speaking about your relationship with your mentoring together, but is there anything else that you'd like to tell anyone who maybe is just learning about peer mentoring?
00;39;46;29 - 00;40;04;00
Doris
Yeah, I would say, you know, definitely make the call and make the connection. And if it doesn't work out, you know, it doesn't work out. But, you know, you may find just a connection to someone that can really encourage you and walk alongside you and they will be encouraged as well.
00;40;04;00 - 00;40;28;01
Nusca
So I would say the same thing, too, because this is a lonely disease and you need people in your life, you know, to especially people that has gone through it or are going through it. You know, I can't overemphasize how important support is to have people that speak the same language that, you know, and when they call those and say, you know, it was a rough night, like I don't need to expand on it.
00;40;28;11 - 00;40;47;21
Nusca
She understands what I mean and that that means a lot. It's to your betterment to speak up and to give this program a chance. And hopefully you'll find someone it doesn't have to be a long relationship, but someone you can express what you're going through and that they can check up on you and help you get the help that you need.
00;40;47;21 - 00;41;04;11
Doris
Yeah, definitely. And I just want to add, you know, because kidney disease is and it's been said many times, it's a disease of loss you know, we think about, well, I've lost my kidney function, but that may affect your work, which may affect your income, which may affect your, you know, your relationship with your spouse, with you know, it just affects you.
00;41;04;14 - 00;41;15;11
Doris
There's so much that you often lose in the process. And so to have there's nothing like talking to someone who's been through that or is going through that. So that's very valuable to shared experience is powerful.
00;41;15;11 - 00;41;48;14
Marissa Argentina
Absolutely. And I think that portion of the loss comes grief. And so it's very easy to translate into depression and you know, so I think when we talk about, you know, kidney disease, talking about mental health, they go hand in hand and talking talking to anyone can be really helpful. But like you said, that shared experience and new skill, like you said, I don't have to explain everything and to take the time to educate someone about what is, you know, being on dialysis really like when there are other people who have already they know that baseline thing.
00;41;48;23 - 00;42;05;11
Marissa Argentina
And so that takes off some of that pressure. Well, thank you both so much for being here. It was great to talk to you both. And your relationship is so inspiring and it's been wonderful to work with both of you. And I appreciate your time so much. Thank you.
00;42;06;10 - 00;42;09;01
Doris
Thank you. Marissa News.com and I will be talking to you.
00;42;09;20 - 00;42;15;18
Marissa Argentina
Yeah, as you can see, I'm sure you guys will be hearing about news this trip, which is going to be awesome. Yes. Yes.
00;42;17;01 - 00;42;18;06
Nusca
All right. Bye bye.