PowerLiving with Kimberlee Langford
PowerLiving with Kimberlee Langford
The Power of Compassionate Care Can Transform a Patient's Experience
Deesha, we are so glad you're here. This is our clinical roundtable, where we get together and we share insights and stories and we try to help each other practice our very best in our profession. And it was so great before here, before we kicked off, we talked about how you know, I had met you over at ADC Annual Dialysis Conference and your story was so moving. There are a lot of folks that you know end up coming to kidney disease in their youth and it's so hard, and you know we were talking earlier. As clinicians, it's very helpful for us to always stay in touch with the, with a personal aspect of our work which is like we were talking about earlier. The machine of, of of healthcare can kind of beat the caring right out of a clinician and it's paramount if we're going to really bring our best to help other people live their best lives and ourselves for that matter. Leading with care and authenticity is really, really important. That's how we help people change your life, so we're really grateful to you for sharing some time with us.
Speaker 1:I know you're an up-and-coming clinician, yourself studying. Let's see you're at Berkeley, correct? Is that where you're studying? I mean, it's UCLA, ucla. Oh, how dare I say Berkeley at UCLA. Well, gosh, I'm just glad you're here. Tell us a little about you and in your story and and your your kidney journey and your message.
Speaker 2:Yeah, of course. So hi everyone. My name is Disha Yadav and I'm a third year undergraduate student at UCLA and I'm studying psychobiology with the hopes of attending med school and becoming a nephrologist one day. So that is the goal. But today I'm obviously here not as a student but as a patient, someone who has spent over a decade navigating the health care system, learning to live with a chronic illness and kind of understanding what it truly means to feel seen or empowered, not just by myself, but mainly by the professionals that are meant to kind of take care of you in that kind of situation. So I'll just jump right into my story, not really beat around the bush, get right into it.
Speaker 2:So at 11 years old I was diagnosed with lupus nephritis. I didn't know what the word nephritis meant at the time, but I quickly learned that it was something that was going to change everything for me my body, my childhood, my family's routines and kind of the entire trajectory of my life. You know, I just mentioned that I wanted to be a doctor, but prior to being diagnosed, prior to everything, I actually wanted to pursue a career in law. That's where most of my you know expertise per se at the time, as an 11 year old whatever expertise you can have as an 11 year old really resonated with me. I was really into debate, into speaking, public speaking. So it's, you know, something that changed the entire course of how I kind of wanted to make my life move forward. So by the end of this talk my hope is kind of that you'll walk away with not only a better understanding of what patients go through, but with a sense of how powerful your role as a provider truly is in shaping, you know, a patient's resilience, trust and hope through the entire process.
Speaker 2:But yeah, like I mentioned, prior to being diagnosed, there were a lot of challenges that were kind of seen. That I saw in terms of my own body, in terms of what my mom saw, things like that. I went to a private school and there is a very rigorous course. Everything is very academically inclined, very difficult at times, but there were some things that were very obvious that you could tell that I was going through something my literature, history and science teacher all noticed.
Speaker 2:They actually asked me if I was having any issues at home or something like that, when in reality it was my body just fully not functioning, if I was having any issues at home or something like that, when in reality it was my body just fully not functioning. I was falling asleep in the middle of class, I was unable to get up from the desk that I was sitting at and I actually needed physical assistance during the time too, and it was very confusing because they were like they didn't know what was happening. I didn't know what was happening and I was also not a vocal child. I wasn't someone that would really explain things to others. My PE teacher had made a couple comments that really felt insensitive during a time you know, looking back at it, but I just thought that it was him being very strict on.
Speaker 2:You know, that was the environment that the private school had, but he was making a lot of comments like, oh, you're running from like your eight minute mile that you're supposed to be running to like a 12, 13 minute mile. Um, it was a very competitive school. That wasn't clear. Um, but yeah, it was. You know, I physically couldn't walk, I physically couldn't do things, um, every exercise was just not possible for me and I didn't know what was going on. And I didn't voice those opinions either because, um, my family and I, we were close, but not close enough to where I felt like I could express all of this that was going on.
Speaker 1:But the reason my mom Well, and surely you didn't know what was going on? Right, Exactly I had no idea.
Speaker 2:I had no idea what was happening. I had no idea how to approach it, whatever it was. But my mom did realize eventually that something was happening. Because if your daughter, who eats anything that you put in front of her vegetables, whatever it is, whatever food that you make zero complaints starts not eating, just completely stops eating, um, like I was told as a kid too, like many parents, like our family friends, would come up to me and be like oh, we're so proud of you, we're so glad that you're like, you eat everything that you put in front of you. Like my friends, whatever they like, only eat yogurt and rice, like that's it. They were so selective with what they would eat. I would eat anything and every food that you asked me to eat. I had no complaints. And so, you know, when that kid just stops eating, all of a sudden you realize that something's wrong. You know, my mom even tried bringing me my favorite food. She'd bring Taco Bell all the time and I would just eat it, throw it up immediately. So she realized that something was happening.
Speaker 2:We went to the doctors. They misdiagnosed me with I can't even recall it was some random illness that they said. Oh yeah, teenagers just have that, which was so confusing to my parents because they were like this doesn't seem like a normal behavior. I didn't go through this when I was a kid. She's going through something. My clothes weren't fitting, I was gaining so much weight which made no sense when I wasn't eating anything. So eventually obviously found out that it was the water retention. It was hard because I was skipping, I was falling asleep in classes, I wasn't performing well on tests, I wasn't doing anything, but I didn't know what was happening. I just thought I was lazy. I just thought somehow I'd become very lazy overall. Whatever it was, I used to play competitive soccer. So, you know, going from that to someone that couldn't even move was so, so beyond difficult. It was just a whole change and we didn't really understand it.
Speaker 2:But eventually, you know, the diagnosis happened because I went to, my parents, took me to the hospital again and again and my mom kept trying to feed me foods that I really liked and nothing was happening. So we went to the hospital and there was a lump on my vagina that they had misdiagnosed with some other illness. And then I went to the hospital and they asked me to pee in a cup and I wasn't able to. I was sitting there, I was just unable to. So they were like you should drink some more water. So I'm sitting there drinking water. Nothing's working. But then eventually I did end up peeing a bit, a little bit. They use that.
Speaker 2:Honestly, I couldn't tell you what happened next. I think I blurred out that entire memory because all I remember is somehow being put in an ambulance and then being taken to the ICU. I remember waking up with a catheter in my leg. I don't remember what happened prior, what happened during all of that. The transit like asking my mom about it feels like a sore memory, so I don't like to bring it up for her. It's probably very difficult for her to even discuss it, and I know for a fact that my mom's more about talking about things, yeah, and my dad is like he refuses to even discuss anything.
Speaker 2:that happened, which is absolutely valid, and you know whatever he's been through, watching me go through it. But you know, I couldn't ask and I don't know what happened during that time. But just waking up in the ICU with a catheter in my leg at 11 years old just is shocking. Like I don't even know what a catheter is, so to see that in my my, my thigh is just. It was so confusing. I didn't know what, what was going on, and it was a very difficult.
Speaker 1:not a urinary catheter, right, that was a vascular catheter.
Speaker 2:They went in through your groin, oh yeah, it was a vascular catheter yeah it was just like I fully did not understand what was happening. They showed me a video on dialysis. I was like this makes no sense, I don't want to watch it, I don't know what's going on. But yeah, they that was what was happening. I was having getting dialysis done.
Speaker 2:A lot of issues ended up happening at the hospital as well. The care was not good, I was being explained things, my mom was being treated very poorly. A lot of like malpractice issues may have happened as well, Like in the way that they were treating me. Didn't enjoy the way that I was being treated at the hospital and that's so important, especially as an 11 year old. For someone that young to have to just sit there and listen to all of this stuff going on and, you know, not being respected by the nurses or the doctors is really hard to see because I don't even know what's going on and doing things to you and not explaining what's going on, helping you come to grips with something that has totally changed your life and your family's life, everything about your life, and you're just along for the ride Exactly so.
Speaker 2:Like they're feeding me these medications, they're putting a bunch of IVs in, but I don't know what's happening. I'm not being told what's happened, they're just doing it and they're like. They're like trust me. Basically, what they're saying is trust me, but we're not going to tell you anything and you can't really trust anyone without getting any information or you know whatever it is. I don't expect you to tell me your entire life story so that I can trust you, but I do expect you to tell me what you're doing to me, because it's my body and if I don't know what's happening, I'm going to struggle. I am going to struggle and it was really very hard to kind of go through all of that. I spent 50 days in hospital. There was a lot of issues that ended up arising and I think a lot of it came from me not being educated and my parents not being educated, because we weren't sure what was happening, so we just let it happen.
Speaker 2:I spent my 12th birthday, thanksgiving, christmas and New Year's in the hospital that year and it was a very, very difficult time, you know, having to somehow be put on a renal diet, not understanding what a renal diet was, not understanding how my kidneys came to fail, just understanding that something was happening to me and I was just wondering why the entire time was. Just why is this happening? I have no idea why it's happening. So I'm just confused and it was a very difficult time to kind of deal with all of that. And you know, especially someone that was about to get into middle school and get into, like I was in middle school, I was going to high school, you know, having to kind of deal with all that. So I was discharged and on hemodialysis for about, I believe, six months before I was taken off dialysis because they told me I'd gotten better. They said that there was, you know, my creatinine had decreased to about two and so they took me off dialysis and the catheter was removed and then, literally three months later, I had to go back on dialysis. So you know, there's also that frustration from my parents and me like, if you know, I'm glad that there was improvement, but was it enough to take me off dialysis Because now I have to go back on the second time around.
Speaker 2:Obviously we ended up choosing peritoneal dialysis because I was going to high school and I wanted the chance to, you know, be able to talk to everyone, make friends, have a good time, enjoy my teenage years per se. But that in itself was so difficult, because being on dialysis is not easy. I used to describe it as torture. I still describe it as torture. It's a very difficult procedure and having to wake up every morning feeling like absolute garbage is just terrible. It's really truly terrible.
Speaker 2:I didn't sleep most nights. I like couldn't. The drain cycle, whatever it was, was constantly painful. They had to change it, to change the program, because of how difficult it was for me. You know, I thank my mom every day because she would stay up with me all night while I was not able to sleep, and it was great to have that support system with me. Like I didn't expect her to stay up, I didn't ask her to stay up, she just would and she wouldn't fall asleep until I fell asleep and I know she had things to do. She had my sister to take care of at the same time. She had a lot going on in her life as well. She actually ended up quitting her jobs just so she could take care of me, and I know how important her career is to her. So for her to make that decision was like I can't thank her enough for everything that she's done for me and I don't know how to thank her for that. I truly can't like for everything that she's done.
Speaker 1:I can tell you we got a lot of mamas on the phone. How many mamas would lay down their life for their kids? You wouldn't even have to ask. And I want to say I loved. And it said a parent's greatest joy is in the successful and joyous living of their children. So you live large.
Speaker 2:That'll make everything your mom did, uh, really beautiful yeah, yeah, I mean, I live every day hoping that I make her proud that I am there. You know she's happy with what I'm doing with for my life and she's happy with everything that I've, kind of how I've grown from where I came from, um, but which, honestly, is why it hurts so much like Like I did mention this when I, when you heard me talk as well that it was so difficult to see her perspective on everything while I was in the hospital, while I was getting treatments, whatever. It is just be completely dismissed, because, as much as I can say, I know myself, she knows me better, she knows me far better than like I know myself I might not express. I wasn't very verbal. I didn't wanna talk about everything that I was going through. I just wanted to pretend that everything was fine.
Speaker 2:I was nauseous on a daily basis. I was struggling with the disease. I didn't wanna come to terms with it. It was so hard I wanted to pretend it wasn't happening. So when the doctor would ask me if things were okay, I'd say, yeah, everything's fine, it's good.
Speaker 1:And then they would dismiss your mother right.
Speaker 2:Your mother would speak up for you and they would dismiss her. Yeah, they were like she's a teenager, she can talk for herself, she needs to learn to advocate for herself, but I'm still a kid. I'm 13 years old at this point, 14 years old. I know things are happening, but again, I am a teenager. I don't want to talk about these things. I want to pretend everything's fine. I can go to school, hang out with my friends, everything's good and my mom's there. You want to be just like my friends and have a life.
Speaker 2:Yeah, absolutely Exactly.
Speaker 2:I wanted to have that normal per se lifestyle being like, okay, everything's okay, I can just go hang out with everyone, do everything just fine, everything just fine. But no, I have a catheter in my stomach. I'm walking around, barely able to walk these days, struggling every single day. And the person that knows that best is my mom, and they just every caregiver in certain aspects would dismiss her opinion because they wanted me to speak, and I understand that and I would speak eventually. But during the time when I was struggling with my illness, she was the one that knew me best and you can't fix my care and help me if you're not listening to my mom's perspective. She was the one staying up all night with me, knowing what I was going through during those drains, during those cycles, whatever it was. She knows it best and she was by far the biggest supporter doing all of this and I hate to see her opinion being dismissed and it's why, like I, advocate so much for taking care of the caregiver as well, or respecting the caregiver. Yes, yeah.
Speaker 1:You know that's interesting that you talk about that, because sometimes you know we work with family members as well, members as well, and we talk about how you know, honoring sometimes their gatekeeping and sometimes they're you know they're, you know it's really important to make sure that everybody in that family who's involved in the care is involved is really, really impactful and there's a there's a very compassionate and and a compassionate way to do that to benefit the member. But, caroline, did you have a question for Disha or were you just raising your hand for the mama? She might just be raising her hand for the mama anyway.
Speaker 2:Yeah, no, it's just a lot of the time it hurts to see that someone that's so important in my life and someone that's really shown me so much respect in terms of everything is really being dismissed in this manner. I will say that I've had amazing nurses. My PD nurses by far are were immaculate. I have nothing, no bad words, no negativity. They had so much support for me through everything. They probably know me best. The doctors don't know me as well as my PD nurses do they. Actually, I would tell them everything because I felt comfortable telling them everything, but with, like, my doctors it was really hard because it felt like telling them everything. But with my doctors it was really hard because it felt like they were just dismissing my perspective and my mom's perspective a lot of the time. And it's difficult because you don't want to see that from your doctors, from someone that's supposed to care for you. I will say I had one absolutely amazing doctor that I will forever remember. She's amazing. She gave me so much and she actually helped me with my college applications, things like that too. And then I actually had another doctor who really supported me through the transplant process, and he is by far someone that I look up to so much. My mom told him that one time and I was really embarrassed. I got upset with her. I was like why did you tell him that? But he was, he knew me best and he actually understood my concerns, things like that.
Speaker 2:And you know let's, after my entire PD journey, even though it was a really difficult process, when the transplant finally came, everyone around me was thrilled. My parents were like ecstatic. Came, everyone around me was thrilled. My parents were like ecstatic, but I was terrified. Dialysis had kind of become my routine, my normal, and so like the idea of change kind of felt more unsettling than exciting. Because I remember sitting there like nodding, along with the happy conversations, but silently I was like, no thanks, I don't want this. It's like another complete change. And you know I knew a transplant would benefit me. I'd be happy with it, but with all the things that would come with it, all the changes that would come with it, I was so accustomed to the dialysis lifestyle I didn't want to change it. At the time I was scared because it just become my normal and I was like, okay, I'm used to it. At this point let's not bring any more change into my life because it's already been a struggle the past six years. So you know it was something that I really remember because I remember my doctor.
Speaker 2:He had also called to talk to me because I'm sure he knew I voiced my concerns to him because I felt really comfortable with him. He was someone that actually listened to me and understood where I was going. He always used to relate to me because he knew I was a very academically inclined person. I was someone that really cared about my academics, and so he would tell me a lot about how the college process works, how applying to colleges works, things like that. And when the transplant came around I was actually in the midst of applying to colleges.
Speaker 2:So he called me and with the sole intention of talking to me about academics, he called me and asked me how my college process was going, how the essay writing process was going, if I needed any help, things like that.
Speaker 2:And that's when he slowly brought into the conversation the idea of me getting a transplant or the transplant that was coming up. And it was nice to hear that he was really trying to relate to me in an aspect that I could kind of relate to, and he was really. He made me feel comfortable, and that's when I opened up about my concerns about how I didn't want the change to happen, and he really helped me figure out a way to kind of channel that energy into a positive light so that I would go into the transplant with a positive outlook and come out of it with a positive outlook. He was also the one that performed the surgery, so it was really nice because I felt comfortable knowing that he was the one that performed it Someone- that cared about you so much Exactly, yeah, yeah, I'm sure any of you cared about an amazing job, but he cared, so it really mattered yeah, I think, I think there's something there.
Speaker 1:You know, when you feel like people care about you as a person first, um, that rapport building uh is so important. Um, yeah, that's. That's really, that's really incredible that you shared a little bit about that. It's amazing.
Speaker 2:He actually is very adamant. Apparently. I've learned that he really wants to follow up with the patient throughout. He's really excited to know how the patient's doing too, and that's a doctor. In my eyes, that's a doctor. It's someone that even post-surgery, even post the transplant, still following up, asking how you're doing yeah.
Speaker 1:Yeah, yeah, yeah, transplant. Still following up, asking how you're doing.
Speaker 6:Yep.
Speaker 1:Yeah, oh, can you hear me? There you go. I got you back. Yeah, so he continued to follow up with you and show concern and care over even after the procedure. Yeah, right.
Speaker 2:Yeah, he was very dedicated to making sure that my care was amazing and I really thank him for that because I think it's the only, one, of the only things that got me through the transplant, like knowing that my doctor really cared about me and wasn't just doing this, you know, because it was his job. It is because he only is passionate about what he does and I think that's something that really you know resonates because you know it's as a patient. I want to feel that I'm being taken care of properly. I'm already going through such a difficult time in my life. It's so hard and I get it that you know patients act out. Patients have issues that come with their care. And I get it that you know patients act out, patients have issues that come with their care. But I think that sometimes it's not recognized that they're going through a lot and it's obviously you know level to how much they can take it. But it's still a very difficult thing to go through and kind of understanding that we need to kind of respect their opinions and respect what they're going through is really important and that makes the patient also recover faster and having a good mental health and good mental state while going through everything is really important because it helps in your recovery process. If you're constantly stressed, your body's going to be in stress. It's going to cause more issues. If you're happy or going through the process with a positive mindset, you're going to come out better than you would if you were there in a negative mindset. Obviously, doctors, nurses, can't guarantee outcomes, but they can support the journey in a positive way that makes it easier for the patient while they're going through it.
Speaker 2:And obviously, like the recovery was not a linear process for me, there were obviously highs and lows. I had to adjust, not just physically but mentally, to a new body, a new routine and, I guess, a new definition of normal. But I did find clarity. I realized that my experience wasn't something that I had to simply leave behind. It was something that I could carry forward. I kind of began seeing how I could use my story to advocate, educate and eventually care for others the way I wish I had been cared for at times.
Speaker 2:You know I have had nurses. Like I said, my PD nurses are amazing. I love seeing them whenever I get the chance. I actually saw one of them at the conference and it was so amazing to see her face like I lit up immediately.
Speaker 2:And then the doctors like the doctor that was there for me, whenever I see him, whenever I come in and I get the chance to see him, it's just amazing because it's so invigorating, like just knowing that there are people that really care about you and that's really what led me to to med school as well or like wanting to go to med school because I want to make sure that you know, as someone that's gone through so much, every doctor knows that it's really important to be there. Every nurse knows that it's really important to be there for the patient, not just in a professional setting, but also in a personal setting, to make sure that they know that you're taking care of them and you really care about them as a person. Obviously, like this doesn't mean that you have to share your entire life story with them. It just means that you're listening to them and you know they're the ones going through what's going on.
Speaker 1:And, regardless to your point earlier, regardless of how they're acting at the moment, it's really important as nurses and clinicians that we can look past some behaviors that sometimes we hear about. In a dialysis setting, there's a lot that people have to be angry about. Their lives have been stolen and, to your point, dialysis, while life-saving, it's still torturous. It changes everything about your life. People have a right and there's a benefit to some of that anger. That's what gives people power to help them, give them energy that they need to do the work of survival and healing and growth and repair.
Speaker 1:And so you know, as clinicians, not being afraid to lean into the dark side, sometimes it's not comfortable to sit with somebody in who's in that position or somebody who's angry or somebody who is crying or who is grieving or who is feeling lost and bewildered. Uh, but as clinicians, that's part of the. The holy part of our calling is that we will go to the. We are not afraid to go to those dark places with people and be there with them. Dark places are never quite as dark when you've got somebody you know by your side.
Speaker 2:Yeah, I agree wholeheartedly. I will say that I know at times I haven't been the best patient per se. I've been disrespectful to some of my nurses when I was in the ICU or I would have a lot of tantrums that would pop up Like it was more just, like coming with the illness, Like it was such a difficult time and I understand that you know, it's really hard for nurses to go through all of that too, like they're also people.
Speaker 2:So having to deal with all of that is really really hard, and it takes a toll on your mental health, on you as a person as well. But I think one thing that needs to be acknowledged is that none of it is coming from a place of anger or hatred. None of these patients are out there trying to hurt you. It's just they're going through so much that it's they need an outlet and sadly trying to survive. Yeah, whatever it is like in that moment, you're there and it ends up. You know, you end up being that outlet that they take it out on, and but as long as you just know that it's not personal, it's more just, they're trying their best and they're trying to deal with everything, that's really important.
Speaker 2:But that's just something that I think is so key, especially in this process, that a lot of people forget sometimes. I know it's just it's hard to remember when you're being yelled at or being, you know, attacked sometimes, whatever it is, it's really difficult to remember that, but it's something that needs to be acknowledged regardless. And obviously there's a limit to what a patient can and can't do in terms of their behavior, but it's important to remember that none of it is coming from a place of they want to hurt you, just they're trying their best. Absolutely, absolutely.
Speaker 1:Absolutely. I love that you brought that up. I was reminded recently of just how important that is Sometimes, people who are in these very life-altering situations, how scary that is. And you know, I've, unfortunately, I've seen people denied care because of their behavior and I tell you, that will piss me off. Um, it's not their job to behave nicely, it's their job to try to get through that situation. It's our job to help them navigate that. Um, and there's a difference. There's a real difference to your point. They're not trying to be um, you know they need somebody in their corner. It's they're backed up in the corner and they don't feel like they have anybody by their side, nobody to fight that battle with them or for them.
Speaker 6:Right exactly.
Speaker 1:So yeah, thank you for bringing that up.
Speaker 2:Yeah, of course, of course. I mean I'm glad you know, I'm glad I got the chance to talk to you and explain all of this. It's just really important sometimes and I guess I have a couple of like key takeaways that I kind of wanted to share. Mainly, just you know one the caregivers really matter. It's just that's something that's really important to me personally, and I know, you know, working with a lot of doctors right now on my path to med school, I try to remind them sometimes too is really just never disregard the role of a parent, a sibling, a friend, whoever it is that's, you know, advocating alongside the patient. In my case it was my mom. She wasn't just like my support system, she was my voice when I didn't know how to use mine yet.
Speaker 2:So that's just really important to remember. And like also, you know, empowerment doesn't always look like independence. I think that's also something that people really forget. You know, don't just assume that because I'm a teenager or a young adult that I'm ready to take on everything by myself. Empowerment also just means supporting the patient support system, and that's something that is really key as well, kind of going alongside what I said earlier about my mom's situation and everything there, like she's seen me through my worst.
Speaker 2:There's no way you're not going to listen to her. Like she knows me better than I know myself and I know that Like as much as I could say like, oh, you don't know me at all. Whatever it is, she knows, she knows everything. But and like just, you know, help us as patients navigate these treatment options with kind of honesty and sensitivity. It's not just about, you know, handing us the facts. It's kind of about meeting us where we are emotionally and walking with us, not like ahead of us, just, you know, being there while we make sense of our options and don't just throw a bunch of facts in my face and expect me to understand and be like okay yeah, or a handout or a video or whatever Exactly.
Speaker 2:Like, if I want a better understanding, just be there because you have had the training, you've gone through the education, whatever it is. I haven't. I'm a patient and I don't know what's happening and I'm trying my hardest to come to terms with it while going through it actively. So being there for that process is really important. And lastly, just you know we as patients, we're more than just our lab results per se. We're people with goals, fears, humor, dreams, whatever it is, and this is a step back in our process. For us, in our minds, it's a step back.
Speaker 2:So sometimes, you know, the most empowering thing like a provider can do is acknowledge us as whole human beings, especially in moments where we really feel fragmented, like feel like our life is being torn apart. So it's really nice to see when you know my doctors, my nurses, take an effort or take an initiative to want to know me, rather than just you know, okay, your creatine your creatinine, sorry, looks a little low today. Let's get you back up, whatever it is. You know your potassium is too high today, like, I know that I'm working on it. We can talk about that later. But you know what else is great Like this is what's happening in my life right now and I'm really excited about it. This is like I'm super happy about whatever it is like. It's just nice to hear when um doctors and nurses take an initiative to kind of understand me more as a person, rather than just you know, whatever my lab results are so you're more than a than a pair of walking kidneys, exactly.
Speaker 1:Yeah, I know that's one year before, but yeah, well, you know.
Speaker 1:Oh, it's interesting that you say that, because sometimes you know what can happen when we're, when we're going through a challenge like that, especially if it's a health challenge we lose who we are now. We become a cancer, we become dialysis, or I become heart disease or I become whatever it is, and that's not who we are, that's what we're experiencing, that's not who we we are, and so. But you know, I didn't want to open it up for the nurses to see. You know, this is your chance uh have an insider uh view, so to speak. And what questions would you have for Disha?
Speaker 6:hi. Well, first of all, I am so proud of you. You're amazing, you're so strong and you really. I'm kudos to your family and your mom.
Speaker 6:God bless you guys, because that's so much. And you you grew up there like you. You were 11 years old when you were still a child going through all that. So it's it's you know for them to assume that at 16 or whatever you were, you were still a child going through all that. So it's you know for them to assume that at 16 or whatever, you were capable of just taking it all in, you were still a child. But yeah, that's amazing. And I was curious about your mom. Did she go back to working or you know, like what happened to her? What is she up to now?
Speaker 2:She's working again. She got a job. It's obviously difficult, you know. What is she up to now she's working again. She got a job. It's obviously difficult, you know, after taking such a huge break in the middle. Um, a job again. She's so happy, she loves her career, so I'm glad she's back to working. Um, you know, that's always something that was kind of weighing on me too. I was like hoping she would go back. I was waiting for her to make that decision. Um, obviously she still has my little sister to take care of too, but it's a lot easier with me being more capable of taking care of myself. After everything that she's taught me, I think most of my strength came from her and her ability to support me through everything. So to see her and you know her being happy enough to share every time she gets an interview, or her being excited to get the interview, be like okay, now I'm going to the second process. Can you help me write my email for this?
Speaker 2:I like being there for her through the entire process every time she's like when she got her job and now she's working again. So to see all of that is so, so exciting and so amazing and I I wish her the best in her career and I'm always there for her through everything, because of how much she's been there for me, and I'm so happy she's succeeding again in her career and she's really happy with her job. Yeah.
Speaker 1:That's awesome. I love what you shared at ABC. How you shared I wish I could remember how you said it Something about how she taught you she did all the research she was studying and she was looking into things. And she did all the research. She was studying and she was looking into things and she taught you. You said something about how you know nobody's going to take care of you. You, you were started it better than I could, but she taught you how to you.
Speaker 2:That's where that desire to advocate for yourself came from was for your mom, from your mom. Yeah, she, she did a lot of research herself, like the doctors would throw things at her and she didn't understand any of it. She would go home home, research everything by herself and then teach me in a manner that I would understand, because she knew me best. And she said to me, like many times, that if you you need to advocate for yourself, you need to advocate for it's your body, advocate for yourself, you know what's best. So she said, if you're not comfortable telling the doctors, tell me and I will tell the doctors. And you know, it got to a point where I was able to tell the doctors myself, but before that I was actually really upset.
Speaker 2:I remember yelling at a doctor one time. We were in the room and the doctor kept trying to ask me what was wrong, but I was still in this state where I was like I can't talk about things. I don't want to talk about what's going on, and it's really hard. So my mom was trying to talk and he was being so dismissive to my mom, but I think that was like something that really triggered something inside me. I don't know if it's like this protective nature for my mom, like I love her so much, she supports me through everything and I have to be there for her.
Speaker 2:But the minute he was talking, like trying to dismiss what my mom said, I yelled at him and I was like, please listen to her. She's telling you exactly how I feel. You will not hear it from me because I'm not going to tell you, but everything that she's telling you is right and, like I said it in a much more negative connotation it's I'm saying it more, but I think that really paved the way towards my doctors, especially listening to my mom a lot more. Really paved the way towards my doctors, especially listening to my mom a lot more. And I realized that no one's like really people don't put a lot of emphasis on the caregivers and that's really painful to see.
Speaker 2:But the way that eventually you know they started caring more from my mom's perspective is really important to me and she taught me to advocate for myself and she's the reason that I'm here also just talking about things too, the strength to kind of share my story. She's like she I wrote this in a lot of my college applications too actually is, if you can't, you can't pay it back, so pay it forward and you know, helping other people kind of helping patients in their journey, being a support system or, you know, educating nurses and doctors about what they should do better is always, always something that I'm really more than happy to do, because I can't pay it back to everyone that supported my journey, but I can pay it forward and show that I'm here and I'm ready to support everyone else.
Speaker 1:That's beautiful Nancy.
Speaker 7:It's beautiful, nancy, yes, hi, so I just I just want to say that you are so strong and you are so brave for having to go through what you did since 11 years old. And what better advocate could you have than your mom? And you're right, she knows you best. She will always advocate for you, even if you don't advocate for yourself, she will, and she's a super mom.
Speaker 7:You know, I think everybody on dialysis needs somebody like that, you know, not just, not just, not just 16 year olds, but somebody out there with them, you know, just sort of make sure that they get treated with respect and that they get treated right, because I feel like and I read that you know, in dialysis centers there's a lot done that shouldn't be done, you know, or there's a lot not done also that should be done, also that should be done. So so kudos to your mom for just being such a great advocate for you and for being such a super mom and you know giving so selflessly of herself, and you know her career.
Speaker 1:So that's amazing, it's it's true, she's got a daughter who's taken right after her.
Speaker 2:Yeah, yeah, no, it's amazing too, like I remember so much. You know, early on the renal diet, you know I would watch my sister, my little sister, eat whatever she wanted, and you know she's my sister and obviously I wish the best for her. But it was still hard to see like she got to eat whatever she wants and I'm here with very select portions of things. So my sister and my dad eating their food and whatever manner they're able to, because they don't have kidney disease, food in whatever manner they're able to because they don't have kidney disease.
Speaker 2:My mom would only eat what I ate, so she'd make her plate look exactly like mine, and so it was so nice because I felt supported. I didn't ask her to do any of that and you know it's just exactly how I, exactly how she would eat it, nothing else, nothing more, whatever, whatever. You know, it just felt very supported when I and I felt like I felt know that she cared that much and I know, obviously, that the rest of my family cared for me very much too. But it's just that support system is something that I could never I I can't thank her enough for that because it's really what got me through everything that I went through yeah, caroline thing, that I went through. Yeah, Caroline.
Speaker 5:I want to be like your mom as a mom, so I love that and I love the. If you can't pay it back, pay it forward. I actually wrote it down, I'm keeping that, I'm stealing that. That's great, great and really. I just want to say that I think you're going to be a great doctor and your future oh yeah are very lucky to have you, and the nurses that you work with, that you will work with, are very lucky to have you as a doctor. So, yeah, you're great thank you so much thank you thank, thank you.
Speaker 2:I actually have. I have a lot of respect for nurses after seeing what I put mine through, so I will say that they see everything that you know. Even the doctors don't see. They report it whatever, but, like the nurses, see everything. So, honestly, I have so much respect for all of you guys and everything that you do for your patients. So thank you so much for everything, truly.
Speaker 3:Stephanie? Yeah, I did want to ask. Obviously you want to become a nephrologist after everything that has happened, but I'm sure there's so much more to that too. Is there you know something that maybe you know most people won't know as to why you want to become a nephrologist, besides your diagnosis with lupus?
Speaker 2:Well, I think a large portion of it is my own diagnosis, but at the same time, kind of you know, with the way I've seen health care, what I've seen as a patient, there is still a lot that I, while going through it, I thought could be improved.
Speaker 2:There's a lot that I wish could be improved and something that I hope to put forward as someone that wants to be in the healthcare, in healthcare and someone that wants to be a physician, those are things that I want to implement.
Speaker 2:I want to get into making sure that whatever care a patient goes through is proper and isn't as minimizing the stress and minimizing the amount of difficulties that they go through and it's a smooth process. I went through a lot of ups and downs in terms of my care and I don't wish that upon anyone and I'd hope that as a nephrologist, as someone who wants to be a nephrologist in the future, I can fix that and fix the line of issues that kind of arise, because I've not just seen it with me. I've been a lot of friends actually that I've made through this journey that also have kidney disease and talking to them, it's very similar issues that doctors make and kind of wanting to take all that feedback and fix it, because obviously my diagnosis makes me want to get into this but at the same time, kind of seeing all of the issues that arose, I really want to fix those and implement better strategies to take care of patients and make them feel like they're more than just the diagnosis, more than just whatever they were diagnosed with.
Speaker 1:Yeah, oh well, gird up your loins, sister. You don't see them now because we're in our cover-ups, but we do parade around in Xena warrior princess garb from time to time. Well, does anybody else have any questions, any comments, any insights, anything you found noteworthy that you wanted to share with Deesha's?
Speaker 4:have a comment? Disha, thank you so much for sharing your story. You are truly amazing. Your mom is truly amazing and I really appreciate it. I'm behind the camera but it kind of brought tears to my eyes to kind of see you tell your story and then talk about your mom. It's awesome. I love it. Thank you so much.
Speaker 2:Thank you, thank you, I really appreciate that.
Speaker 1:Yeah. So your challenge, especially as a physician, you get in the machine of health care. It's different, you know it's a, it's a business and, like anything else, caring is often an afterthought. So your challenge is to make sure that you always lead with that degree of care. Absolutely, it's really important and it will absolutely make everything else better. And it's funny how we forget that In the business of health care we forget that when we take care of the person in the center, it's always a human being in the center of everything we do. All the other stuff, the mechanics, the finance, the operations of health care, they will all get taken care of. If we keep our eye on the prize, that prized individual in the center of everything we do, in every situation, it will all come out as its best.
Speaker 1:The other takeaway that I had had, you know, listening to you the second time too, is that the, the power of hope, you know, and our, our passion here at specialty care management isn't first coaches, using a coaching framework. We really strongly believe that every day we can each choose one thing that we can do differently that will make our lives better than it was the day before. I don't care where you on on the on the spectrum of health, because health or wellness, it's a continuum. It's not like there's one point where you're healthy and the rest of it you're not. There's a continuum and we're all on that continuum and every day we can choose, regardless of our situation, one thing that we can do to make tomorrow up better than yesterday and a power of hope.
Speaker 1:I think that comes through loud and clear in your message as well. Focusing on you know the things that are important to you as a person brings hope. What are you excited about? Where are you going, and not just focusing on the doom and gloom of the situation, what you can and can't eat, how you can and can't live your life, what are the things that you're excited about and how can we help with strategies to help you come as close to that as you can and live your best life? Hope is really powerful. Hope is like fuel in the tank to do the work of self-care.
Speaker 1:So I think that message comes comes through as well, loud and clear. Thank you so much, dish, for just sharing your story, your heart, your talent and I just I can't think enough for spending time with us. Did you have, if people have questions, especially, you know, for folks who might be watching, if they have questions or they move by your story, or maybe they know somebody who's going through a challenge like like that uh, what resources would you want to point them to? Or or how could they get in touch with you? Um, if you were open to them, yeah, I can absolutely.
Speaker 2:you know they're more than happy to reach me by email. I'll respond very fast. I can give my email as well. It's Disha D-I-S-H-A-Y-A-D-A-V 756 at gmailcom. I'm more than happy to answer any questions that you might have at any point. I think it's. You know, having a support system is very, very helpful. You know, if I can be that for you, I'm more than happy to. I'd love to pay it forward, like I've said. But, yeah, thank you so much for listening and thank you all for the work that you do. You may not always realize it, but your words, your presence and your attitude shape the patient experience in absolutely profound ways. I'm here today because of the people that empowered me and, in some cases, in spite of those who didn't. My hope is that you leave here today, just, you know, feeling more informed by what I've shared and kind of also becoming the providers that make patients feel cared for, safe and just happy. But yeah, thank you so much for having me.
Speaker 1:And you can follow her on linkedin. She's on linkedin, I'm following you.
Speaker 2:I'm watching you, girl you can follow me on that also respond on there there you go.
Speaker 1:Well, thank you again and um, yeah, keep up the great work yeah, thank you so much.