What's the Deal with Dialysis?
A conversation about the kidneys and what happens when they fail.
What's the Deal with Dialysis?
Elliot's Battle for Self-Advocacy in Healthcare
Elliot's journey through end-stage renal failure is not just a story; it's a battle cry for self-advocacy in the healthcare system. Through our intimate conversation, we uncover the layers of emotional resilience required to navigate the complexities of serious health conditions. Elliot, a beacon of proactive health management, shares how taking charge of his treatment shifted the dynamics of his interactions with healthcare professionals. The dialogue unfolds to reveal the generational wave of patients who are no longer content with passive roles in their medical care. They are questioning, they are learning, and they are demanding a seat at the table when it comes to their health decisions.
Maurice, a dialysis technician with hands-on experience in patient care, joins us to shed light on the nuances of the technician-patient relationship. His insights into the inner workings of the healthcare system underscore a sobering truth: there's a critical need for improved communication and understanding between patients, technicians, and doctors. The anecdotes shared in this episode serve as powerful lessons on the value of knowledge, the importance of conversation, and the collective effort needed to forge stronger connections within patient care. Our discussion is not just a commentary—it's a call to action for a deeper dialogue that can change the course of healthcare and patient empowerment.
A conversation about the kidneys and what happens when they fail.
You have to be your own advocate. You have to take an active, participatory role in your own health. Whether you wake up in the hospital with a broken leg or you wake up in the hospital with end stage renal failure during your entire life, people need to be an advocate for their own health. So, to answer your question, people have to be on top of their bodies psychologically and with all the information possible and ask questions. There's a societal or generational difference, and I've seen it in patients in dialysis and I've seen it in human beings.
Speaker 1:Just in my family, a certain generation was raised with fairly new medicine and so they trusted everything the doctor and nurse told them and so they never asked questions, or not the right ones. Our generation is a little more apt to say well, wait a minute, wait a minute. I don't necessarily agree with that or understand that. Can you tell me more? There is a part of our culture now that just doesn't believe in science anyway, and so I think we need to. I mean there's a micro and a macro answer to your question. The macro answer is people need to be science and medicine educated, all right.
Speaker 1:The micro is you wake up in the hospital, someone tells you. You're an end stage renal failure. Either you need to start dialysis or you're going to need to start dialysis soon. My suggestion to everyone who gets those news, that news, is first allow yourself to cry. Allow yourself to say goodbye to what was normal and be okay with being upset about that. Talk to your loved ones, you know, get it out there. But then look. It's hard to, it's hard to say to people, but it's true. You can only allow yourself a certain amount of time at the beginning to do that, because what you need to do is move into an active role, because with end stage renal failure, you don't have time for pity, because it's your life we're talking about. So you have to read up. Get yourself a necrologist if you don't have one.
Speaker 2:Listen to what you need to do. I was gonna say I think I remember you saying that you set aside time for that morning like on a regular basis. Is that? Am I wrong in remembering that?
Speaker 1:No, you're not wrong in remembering that. I gave myself a certain when things were really bad and I was having like a procedure or a surgery every seems like every two or three weeks. I would give myself a certain amount of time in the morning to just feel pissed off, angry, whiney, and then just go all right, that's not gonna keep me alive, and then figure out what's the next step. I mean, bottom line is how I do it, did it.
Speaker 1:It may not be right for everyone, but because everyone takes for granted the fact that your blood gets clean 24 seven and you don't even know it, and that you can just go to the bathroom and people don't think about whether they can or not. And now you have to. You have to basically find a way to make your day. Whatever that is in your day, you take one day at a time. You love everything about that day, even the pain, because the pain is, you're alive to feel that pain. And so you have to have a larger worldview and you have to just keep moving forward. Man, I always the joke I made about myself was I considered myself a shark. I had to keep swimming or I would sink and die.
Speaker 2:That's kind of life, right? Yeah, that's life. So just to bring Maurice back in, just from the technician standpoint and what Elliot's talking about in terms of, you know, being an advocate for yourself but also you know what is there that can be done from, like I mean, you're that person that tried to pour certain perspective into patience, right. So that is what I'm seeing from the outside, from being someone who's not in the industry or involved in the industry is unique, and maybe why you don't have a job anymore, but yeah, but you know, and trying to affect change, like where is it that the technician can come in to fill some of the gap that Elliot's talking about?
Speaker 3:Well, yes, I mean I think you know, when I first started this journey technicians were to go to. We were the people that the doctor came to and we saw our patients every day. The doctor might come in once a week, maybe once every two weeks, and see a patient. We're managing those treatments every single day and when that happens, there's things that we know about the patient that doctors and nurses don't know, and so we use our skills to get those patients through those treatments. And you know, years ago it kind of was patients did this to themselves. You know this is and that was their way of kind of bringing us into that environment and making us feel like, you know, there was nothing we could do before these patients except manage their treatments, and information was limited. They didn't want patients asking questions, they didn't want patients knowing how to manage their treatments, because that meant that they would lose control of that. And I think you know that's one of the things that I see. You know that's just kind of starting to change. But you know really strong technicians, I mean we don't stay around long because they kind of run us off. I mean, if we're having conversations with doctors and patients and we're telling patients. You know they got to a point where I couldn't tell the doctor, I just told the patient. And then when the doctor would come in, I'd say, now he's here and remember what I told you to tell him and remember what I told you to ask him. And you know they would walk up to the patient and he'd say, hey, how are you doing? He'd say, you know, I got some questions for you and they would know right off the bat that he had been talking to one of us. Somebody had talked to that patient and alluded to something that they needed to know and the doctor would sometimes take offense to that. I mean, I have millions of cases where it was just different situations where doctors were kind of blowing the patient off and I knew the patient needed something different than what the doctor was doing, like shorter treatments. You know, and Elliot can attest to this. I mean nobody ever wants to cut their treatment and I totally get that.
Speaker 3:But some patients respond to the treatments differently and they could run for two and a half hours and get the same quality of treatment as somebody who might run for four hours. And if you run them for four hours they end up sick, with a low blood pressure and can't walk out of the center, I mean, and our goal is to you know, when someone comes into the center, that they leave the way they came in. You know you don't want a person coming in and you know not understanding that, and so I think that was one of the you know the major things for me. And so, yeah, I think you know really strong to get back to your point are really strong technicians. We just have really good conversations with our patients and Elliot will tell you you know who that tech is like right off the bat. You know who that tech is, you know who's who right away, because people are gonna try to steer you a certain way and not give you options.
Speaker 3:And I mean we have patients who haven't seen their nephrologists ever at the beginning of their treatment. They might run for a whole month without ever meeting this guy. I mean because people parachute in, like you said, they parachute in the hospital and they're given who's ever on call. I mean they don't get the luxury of saying, okay, you know, I want a transplant and they don't know how many transplant that. You know transplants that doctor has done in a year. They don't know, and so this doctor might have done zero transplants in the last five years and suddenly that's your nephrologist. Your chances of getting a transplant are pretty slim right now with that guy. So this is the kind of dialogue we need to have. Technicians can't have these kinds of dialogue and keep their job. It's just. That is the way it is. In that environment, they cannot have these conversations that we're having right now.
Speaker 1:I can attest to your comments and how it's changed. It's been probably it's been 10 months since my last treatment and I can tell you that number one the training of everyone isn't what it used to be, from what I understand and I will just tell from personal experience the doctors oftentimes they just come and walk through. Not even your own nephrologist, my nephrologist never came to one session, never came to one treatment. The guys who were walking in would sometimes walk by and say how are you doing? And I would tell them every single time I'm still making urine, you have to set the machine to not pull, and they wouldn't train.