Advocating for Tailored Dialysis Treatment in Elliott's Healthcare Saga
Feb 23, 2024Season 1Episode 6
Maurice Carlisle and Ira McAliley
When Elliott first encountered the rigors of dialysis treatment, he never anticipated the crucial role self-advocacy would play in managing his health. This episode uncovers Elliott's eye-opening experiences and the harsh realities of standardized dialysis protocols that often fail to account for a patient's unique situation, especially for those like him who still produce urine. We dissect the balance between following strict fluid removal targets and the dire need for personalized care that respects a patient's knowledge of their own body. Through Elliott's story, the conversation reveals the tension between dialysis clinics driven by outcome-based payment models and the technicians on the front lines trying to tailor treatments to individual needs.
Navigating the kidney transplant process is no small feat, and Elliott walks us through his enlightening journey with honesty and depth. He underscores the importance of genetic matching, sharing how his brother's compatibility played a pivotal role in his successful transplant. But it doesn't stop there; Elliott reminds us that while a transplant can be life-altering, it's a treatment, not a cure-all magic bullet. We delve into the aftermath of such a surgery, including the side effects of medications and how they can introduce new challenges, such as the onset of diabetes. Moreover, we discuss the potential for combined kidney and pancreas transplants to mitigate these risks. Elliott's firsthand account offers a wealth of knowledge for anyone facing the transplant path or supporting someone who is.
A conversation about the kidneys and what happens when they fail.
When Elliott first encountered the rigors of dialysis treatment, he never anticipated the crucial role self-advocacy would play in managing his health. This episode uncovers Elliott's eye-opening experiences and the harsh realities of standardized dialysis protocols that often fail to account for a patient's unique situation, especially for those like him who still produce urine. We dissect the balance between following strict fluid removal targets and the dire need for personalized care that respects a patient's knowledge of their own body. Through Elliott's story, the conversation reveals the tension between dialysis clinics driven by outcome-based payment models and the technicians on the front lines trying to tailor treatments to individual needs.
Navigating the kidney transplant process is no small feat, and Elliott walks us through his enlightening journey with honesty and depth. He underscores the importance of genetic matching, sharing how his brother's compatibility played a pivotal role in his successful transplant. But it doesn't stop there; Elliott reminds us that while a transplant can be life-altering, it's a treatment, not a cure-all magic bullet. We delve into the aftermath of such a surgery, including the side effects of medications and how they can introduce new challenges, such as the onset of diabetes. Moreover, we discuss the potential for combined kidney and pancreas transplants to mitigate these risks. Elliott's firsthand account offers a wealth of knowledge for anyone facing the transplant path or supporting someone who is.
A conversation about the kidneys and what happens when they fail.
Speaker 1:
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 certain people to know that, that you could do that, that you can actually set the machine to zero. Now it'll warn hourly, but I knew the tech that understood that and I would say I need him because he's a quick stick and he knows this machine Well. They don't like when a patient requests one guy. They don't like that Because then the patient is taking control. So I always knew that I had to tell the tech that was getting me on the machine you must set the machine to zero because I already create urine and if you pull and I void, I'm going to cramp and it's going to be ugly because you'll be taking too much fluid. Sure enough, every single time they wouldn't trust that.
Speaker 1:
I knew what I was talking about and it would be horrible. It would be a horror show and you can attest to that. I'm sure you've seen what happens. And these aren't average cramps. Okay, people need to understand that. These are full leg, from the hip down to your toes, cramps that are agony.
Speaker 2:
Yes, and I think where you're talking about is turning the UF off. And what happened in this industry about six years ago is the government started moving towards paying based on outcome. Yes, and when they did that and I know what their intention was I totally get the intention, but companies took that as okay. We got to get this fluid at any cost. And now, like you said, you didn't need fluid pulled off, you just needed to be sustained, you needed to be filtered, correct, you just needed to filter impurities off of you. And they have goals that they set and they're saying, hey, if you don't pull any fluid off this guy, we're not going to get the 100% reimbursement. We're not going to be reimbursed for that, even though that isn't what you needed. Yes, and, like you said, every patient's different and some patients don't need that and they don't seem to be able to differentiate from that. I mean, they just need to figure that out. You know it's still a dialysis treatment. Whether I pull a fluid off of you or not, we're still going to filter your blood, you know, and they need to figure that out.
Speaker 2:
And that was a constant issue with me nurses, like that was a constant issue. I said this lady can't tolerate that. Like, her blood pressure is 70 right now. Well, she's not complaining. She doesn't have to complain. I know it's not good for her blood pressure to be 70 right now. Yeah, she, I don't want to wait till she complains, already know how this ends. I want to do something now and I would just get in these tug of wars with them, and I think technicians are having these tug of wars all over the country and I think you know, for me that's what this is about. It's like. You know, patients need to know that these guys really are fighting for them, but they don't have any power. I mean, they don't take that far away.
Speaker 1:
And there are simple things Ira and Maurice as well that they will fight because it's not the status quo Meaning what they will do is I finally told them I can't lay down and have my treatment because I cramp all the time. I need to sit up with something under my feet. So I'm putting pressure and they kept saying no, we don't allow that. And I said I don't care what you allow, I really don't. But unless you fight, they're not going to, they're not going to. Let you do what you want to do, right.
Speaker 3:
So I know, Elliott, just being mindful of your time and we only have a couple of minutes left on this recording so, to get to where you talked a bit about, you're starting to talk about transplant and that that is something that you've been able to go through.
Speaker 3:
So I just wanted to give some time to that and you know what that process was like for you and I'm sure that I mean there's like the before and then there's the after and there's, you know, the road up to and I know that we could do a whole session on that. But just like from the time that, like I know that you Well, I don't know, but I would guess that, like transplant was always a part of your trajectory, right in your mind, you're always like I'm going for transplant, right? Yeah, I know people that are afraid to get a transplant. Yeah, I mean, we talked to people that are afraid to get a transplant. So, from the time that you said, alright, I want to get a transplant, to getting a transplant and knowing that it came through your family, talk a little bit about what that was about?
Speaker 1:
Yeah, it's, it's a great question and it's it is a process. The transplant process is important and it the transplant education should start at dialysis and Maurice should know I mean I'm sure he understands that that that's where it needs to start, because some patients, just like some patients, are not good candidates for hemo dialysis. They're better candidates for peritoneal dialysis. Some some people myself will will.
Speaker 1:
To answer your question, I was a horrible candidate for hemo dialysis because dialysis wanted my uf on, I needed it off. So I was a much better candidate because I was still creating urine for transplant. Also because at that time I was 55, meaning I was young enough that I could get one, because after a certain age they won't, it's harder to get one, which is a whole other conversation that we can have. But also I was strong enough to go through the surgery and be post up. What people have to understand because that's what this is about is how can we help people is find out what treatment is the best for you. Transplant is a treatment, it is not a cure. First and foremost, transplant is not a cure.
Speaker 1:
It just isn't, at least not yet. It can buy you lots of time, depending upon the match. Luckily, my brother and I were very good matches Blood type and we matched four out of six antigens. The only way you can get better than that is if he and I were twins. So it was a lot of luck. And it was also like I touched on before science, knowledge, knowing through all my research and discussions, that human beings now we've evolved to the point where we actually only need about 45% to 50% of one kidney to do the job.
Speaker 1:
That's the latest technologies from the major transplant centers Johns Hopkins, ucla, et cetera. So by giving one, you're not killing yourself to give one. Too many people think that. That's why we don't have people giving organs, because they think that if they give a kidney that their life is shortened. That's not true. And, by the way, even if something went wrong with their kidney, the way the transplant system works now, they get moved to the front of the line. Anyone who gives an organ, they get first choice. They get moved to the front of the list.
Speaker 1:
The surgery itself, because I know we're running low on time. You've got to prepare yourself because it's a major, major surgery and you have to prepare yourself for lifestyle change. But if you were in dialysis, you already had lifestyle change. Now you're going to get another one, because all the things that you needed to do in dialysis you'll need to do different things in transplant. You've got a lot of medications, lots of medications, and just to make it easier and the quickest way I can say it is you have to be OK with the side effects of these medications, because there's no way around that.
Speaker 1:
It's either you deal with the side effects as they come or you don't get the kidney because you need these drugs, Meaning you need the immunosuppressants and you need the steroid that works with it. Plus, you become a diabetic. So you have to be OK with that. Just by getting a transplant, you become a diabetic, and it's just the way the immunosuppressants and the steroids work with this new kidney, because the kidney will never, ever become mine, ever. Genetically, it will always be my brothers. Now we're close, but still my antibodies are going. What is that? That's not really mine. And so you take all these new drugs that basically try to make your kidney a stealth kidney and so that your antibodies just walk on by. But there are side effects, but the side effects, man, it's like anything else in life. You deal with what's in front of you, if it keeps you living longer.
Speaker 2:
That's right. That's right, and Elliot, they have done transplants with pancreases so that patients don't become diabetic. Oh, now they have that huh.
Speaker 2:
Yes, they do that, and so in your case it wouldn't be an option because your brother was donating you a kidney and wouldn't be donating a pancreas. But there are times when cadaver kidneys and pancreases are transplanted To get away from the diabetes after the transplant. But that's really interesting and we really appreciate you helping us out and telling us your story, and I think we'll get even more of it as we move forward. Absolutely, and have you on again and talk about this again.
Speaker 1:
Absolutely. It's a great thing you guys are doing.
Speaker 3:
Thank you, I'd love to have you back. You know we've talked. We also have some other footage that we're not sure we'll include. But First and foremost, man, I'm just happy to see your face and see you help you know, as healthy as you can be, knowing that you've worked hard to be that. Thanks man.
Speaker 1:
Absolutely wonderful to see everyone's face to be seen. I think that's the thing. That's what I'll end it on. Marie said that's what this education is about. People have to understand that this is no joke. From my analysis through it, this is no joke and you have to embrace whatever you have to do to live.
Speaker 2:
Yeah, we must do that. Thank you so much, yeah.
Speaker 1:
And anytime you need. You need my time on there for you.
Speaker 3:
Great. We're going to try to make this a Sunday morning thing that we like. Have our kidney breakfast.
Speaker 2:
Wow, you're a superhero man, you're a superhero.
Speaker 1:
Kidney breakfast. I'm not so sure I'm going to be eating that. All right, man, you guys have a great rest of your day. Stay safe, stay well.