DNA Patient Journey:  Staying Off The Road to Kidney Failure (Part I)


Show Notes

Take a behind-the-scenes look into the world of DNA with real examples of our values in daily life. Dr. Cindy Corpier shares the basics of kidney care, early detection and preventative actions for a kidney transplant, and how to develop a care plan with a healthcare team. 

What to Know About Kidney Failure 

Kidney failure can often happen without any symptoms, which is why Dr. Corpier supports screening events, such as ones sponsored by the National Kidney Foundation. Usually, a patient is referred to a nephrologist late, and Corpier describes some of the frustration and grief that comes with not being able to help some 10, 15, or even just 5 years earlier. 

Treatment varies depending on the cause of the failure. For some diseases, there isn’t a specific treatment. Blood pressure medicine or other medications can often remove or delay the need for dialysis or transplant. Both dialysis and transplantation have specific criteria and processes for approval, which Dr. Corpier explains. 

Misconceptions About Kidney Disease

A common misconception is that a transplant is a cure. This isn’t true, even if a patient may not like to hear that. Transplantation and dialysis are reserved for people who have or will lose all kidney function. So the goal, Dr. Corpier explains, is to restore normal function or maintain the current state of function. But neither are cures in the sense that a patient’s life will be the same after. 

People also tend to believe that they won’t suffer from kidney disease because they are young, healthy, or take care of themselves. But kidney disease is often a result of blood pressure, diabetes, or other unexpected diseases. Dr. Corpier tries to be as transparent as possible about the treatment process, including what to expect during evaluations and post-operation. 

Life After Kidney Disease 

For patients, Dr. Corpier recommends keeping their health information organized and accessible, especially if they’re post-transplant. Keeping a list of all your medications is at the top of her list. She doesn’t expect patients to remember every number–that’s what physicians are for–but encourages knowing your own body’s baselines, especially when traveling, visiting new specialists, or in case of an ER visit. 

Everyone would like to go through life without worrying about their health. But because a transplant isn’t a cure, Dr. Corpier and all physicians at DNA seek to find the middle ground between treatment and life. In Dr. Corpier’s words, the purpose of your life is not to be a patient. It’s to live your life.


Transcript

Bri (00:02):

Let’s talk about kidneys takes a deep dive into the chronic kidney disease patient journey. We’re here to inspire meaningful conversations and to help people living with CKD gain a full understanding of their disease. In this episode of let’s talk about kidneys. Dr. Corpier provides us with the basics of kidney care and how to stay off the road to a kidney transplant with early detection of chronic kidney disease, as well as the development of a care plan with your healthcare team. Dr. Corpier, I’m so excited and glad that we’re gonna be talking about identifying chronic kidney disease early today. Needless to say, I am here to learn. So what are some of the first early warning signs that a patient may experience.

Dr. Corpier (00:45):

As far as symptoms? The most common thing that a patient may experience is maybe swelling. Leg swelling is possible. Sometimes patients will see changes in their urine, particularly if they have one of the diseases that causes a large amount of protein in the urine, then they can see FOIA urine, or the urine can look like it’s got a head on it, shall we say? Those are two, occasionally people who will see blood in their urine for certain diseases. The most common thing though probably is no symptoms whatsoever. And that’s what can make this hard. Because, because you can have the loss of a kidney, significant loss of kidney function without feeling a thing, and that will only be detected on laboratory testing. So that can make it hard. Then, in their different groups of patients, but patients who are diabetic, for example, their primary care doctors tend to do screening and, and are nowadays detecting them much earlier than in the past.

Bri (01:57):

Well, and have you ever had a new patient come to you and say, I need a lab test to check my kidney function.

Dr. Corpier (02:03):

It happens actually all the time. There are people that, because often it’s because they’ve had a family member who had kidney problems and they really wanna be tested or they’ve had some other issue that has made them question it that they, that they decided that they wanna be tested, but people come in with that request pretty often, actually.

Bri (02:27):

Very interesting. Well, and I know DNA is really passionate about, is it called keep screening events?

Dr. Corpier (02:32):

Yes, they’re keep screening and they are, that’s the name for them? The national kidney foundation sponsors these screenings for early kidney disease, diabetes and hypertension all over the United States. And so for many years we have we have participated our director of HR David kn is very active in putting, putting those together for us. As well as other other staff in, in our practice and then physicians participate. And so basically they get publicized, let’s say it’s at Colin county community college, for example. So this screening is gonna be happening on this day. And then we go out, are set up and are able to, able to screen for protein in the urine able to screen for blood pressure. And so then we are able to say to people, wow, you know, you need to get this kind of care. Or everything looks normal right now answer their questions. And I think that they’re incredibly valuable, not just for the people that you pick up who have problems, but for the awareness.

Bri (03:46):

Some of the early warning signs that you mentioned could be early warning signs for a multitude of things. How often do you feel chronic kidney disease is misdiagnosed or, or just missed?

Dr. Corpier (03:58):

I think what has changed? In PA in the past, we often as nephrologists were referred patients very late and, and I know for myself, it was very frustrating and, and there was almost a grief that I would have about some of the cases, because you’re like if we had gotten as person a year earlier, two years earlier, five years earlier then we could have made a difference in their, in their lives, in the course medically, but what’s happened in the last 15 years or so, is that now when people get their, their basic lab screening they will get what’s called an estimate at a GFR. And so, so just to boil it down, that is an estimate of kidney function by that you can sort of correlate to percentage. So if your estimated GFR is 50, then you have roughly 50% kidney function and by kidney function, we’re talking about how well your kidneys are removing the waste from your bloodstream.

Dr. Corpier (05:07):

Because when we talk about just to kind of go back overall, when we talk about kidney failure versus normal kidney function, what we’re talking about is, is this waste management piece. And so when you think about, you know, or if you do think about like, what is urine. I mean, I know it’s water, but it doesn’t look like my wa it doesn’t look like my water. So what’s the difference? Well, what urine is, is it’s water with waste chemical waste from our bodies, dissolved in it, and our kidneys are responsible for filtering and adjusting and removing this waste every day. And so when you, so when we talk about chronic kidney disease, part of that is, well, what is the level of function? And there are people who have normal waste removal, but do in fact have a disease of their kidneys. You know, if you take my patient, Tiffany, who, who we’ve talked to who’s a transplant pay patient now, but her disease for example, is called IGA nephropathy. And we’re, this is a disease that occurs worldwide and patients can be detected at any stage. And I actually, I mean, I have patients who are, who, who have had this detected, they had it in their urine protein, in their urine kidney biopsy. It was detected, but they may have had 90% kidney function.

Dr. Corpier (06:45):

Interesting. At the point that they were diagnosed. Right. And so there’s, there’s this piece of it, which is, which is a waste removal piece and the waste removal piece, when that at changes and you begin to lose that function. And ultimately when you lose down to 10% or less, then that’s when we have to begin dialysis treatments.

Bri (07:10):

I’m so glad you said that. That was my next question is what are the options once it’s been identified that the kidneys are struggling?

Dr. Corpier (07:17):

So it depends when, and it depends on when there it’s identified and it depends on what the cause is. Mm. So, you know, when you first see a patient, these are the things we’re trying to figure out. And so we’re trying to figure out, okay, what exactly is their function? What has been the trend, you know, were you normal two months ago and now you have 20% function or which, which would be a very rapid yeah. Progression or has this been something that’s been kind of sputtering over and gradually changing over the last 10 years? So we’re looking at what the trend has been and then trying to what’s caused it and then what we can do about it. Yeah. Because for some of these things, for some of the diseases, there is not a, there’s not a specific treatment. There are more there are more general treatments, like certain blood pressure medicines and we’ve had a kind of a ginormous to breakthrough in the last year or two with a group of medications called SGLT two inhibitors that came on the market initially for diabetes care. But they’ve been found to have dramatic. I impacts on maintaining kidney function, reducing death, seen cardiovascular events for patients with chronic kidney disease. So whether they have diabetes or not. Yeah. So, so that’s been a big change there’s so we have options.

Bri (08:52):

Depending on what they’re experiencing. So what if, where would transplantation fall?

Bri (08:59):

Fit into, you know, CKD?

Dr. Corpier (09:01):

Care management? So, right now we have Medicare created a benefit several years ago for CKD education for late stage pay for the stage four patients who are, who are people who have kidney function between 15 and 30% of normal. And so, and the reason at that stage was because a large percentage of those will further deteriorate and need dialysis or transplant. So we begin ed educating below 30, mm. Once the patient’s kidney function is at 20% or below, that’s the point at which we can refer them for their transplant evaluation. And then depending on whether the patient has a living donor or does not have a living donor, then the patient may be, you know, then, then you have option with a living donor of electively scheduling their transplant at the point that they need it. If they don’t have a living donor, that’s where, you know, the listing and waiting for a transplant comes into play

Bri (10:13):

Well. And so let’s say the decided route, like you mentioned, there’s option and there’s gonna be a certain care management plan, but let’s say the decided route is a transplant. First question first is transplantation a cure.

Dr. Corpier (10:24):

No. and of course that’s not what anybody wants to hear. Almost every single patient asks this question and they don’t say cure, but they say, well, can we make it better? You know? And so where they are in their course and all of that, the answer is sometimes not usually often we’re left with trying to just maintain and but in terms of transplantation. So it’s important to understand like implantation and dialysis are for people who are either have, or, are well on their way to losing all of their kidney function. Your kidneys are considered a, a vital organ. Right. And what vital organ means is you can’t live without it. And you know, mammals don’t live without their kidneys. Yeah. For very long. And so we have to replace this function. Right. And, and, you know, dialysis is one way we do it and that’s another discussion, but for the transplant. We can replace the function and often get them back to normal function. Okay. With a single kidney. However, when I say it’s not a cure. Yeah. What I mean by that is that, you know, I think of a cure, as, you know, for example, you have a urinary tract infection and you don’t have any anatomical abnormalities, you just got infected. We give you some antibiotics, you take ’em goes away.

Bri (12:04):

It’s like la-ti-da, like it never existed.

Dr. Corpier (12:06):

Right. With trans kidney failure, you don’t get that luxury. Right?

Bri (12:13):

Yeah. Your life will look a little bit different and maybe we talked about some of those different elements and the factors that are gonna be at play. What are some of the most common misconceptions? It sounds like you kind of touched on a few of them, but, you know, is there anything else that comes to mind?

Dr. Corpier (12:27):

Well, I, I think with chronic kidney disease in general there can be a miscon that, you know, oh, well, well I’m taking care of myself, so that could never happen to me that they must have done something, you know, to get that disease, to get that right. And you know, and, and again, my patient Tiffany is, is a kind of the Supreme example of a person who was young and the picture of health who developed a, you know, what’s admittedly in the big scheme of things, a rare condition, but in the kidney world, it’s not that rare. But it’s not something that you bring on yourself. And for a large number of our patients most, this is a consequence of sometimes, you know, blood pressure, diabetes, things that they, or other diseases that come, unfortunately like a media strike.

Bri (13:33):

Well, and from what I understand, you know, once the conversation does start about transplantation at some point that they may be given several packets to be able to start mailing out and to start that, that search for the right donor, what expectations would you set with patients talked about living donors. So clearly there’s, you know, options there as well.

Dr. Corpier (13:55):

What we try to say is or what I, what I do say is, so the first expectation, I guess I should say more clearly is, is I explain to them that there’s a process here and that this is a, there’s a process to follow and that follow, and that process begins with an application. And so you apply to one of the obras and then they do a, an evaluation process. I personally have always chosen to view the application process and the evaluation process, as, as identifying anything, that’s gonna be a barrier to your success, right? It’s not, it’s not like, oh, we’re trying to keep you from getting transplant or, or to screen you out. That’s not what it’s about. It’s about trying to identify anything that could trip you up and then can we deal with it in advance?

Dr. Corpier (14:44):

Yeah. And make your transplant, hopefully one transplant that lasts you forever and that so I make, make sure they understand that, that they’re going to go through an evaluation. It’s gonna have involve some number of testing and the tests vary depending on their other medical conditions. They’re gonna need a bunch of people they’re gonna have to do. They’re gonna meet transplant surgeons transplant in front dietician, social worker. They’re gonna go through more education that that’s gonna be the process. It’s gonna all be presented to a committee that will then make a decision. The decision’s gonna be yes. List you for transplant. Wait a minute. We miss something here that we need to look into before we, before we, of you for transplant and on rare occasion, the answer’s gonna be no. And, and that they are entitled to an explanation for the no. And that they also can apply to another program if they get a no.

Bri (15:47):

Okay.

Dr. Corpier (15:47):

And then we can go over. Why they got that? No. If they believe they have friends and family members. Or some people it’s church members. I mean, there are all kinds of stories. Yeah. For, for how people come in contact with a person who ultimately donates a kidney to them that that person will apply. And that person will go through their own separate, confidential assessment. And then once if they are, if they are compatible then they, you know, and everything’s clear, then they can schedule a transplant

Bri (16:27):

Moving forward. Well, you touched on this. What is the relationship like? Or maybe what are the differences, but between nephrologists and transplant surgeons.

Dr. Corpier (16:37):

So they’re just two completely different specialties. We’re a sub-specialty of internal medicine and they are a sub-specialty of surgery. And so our role is in, in managing the patients before the, their transplant, throughout the spectrum of their, of their time with kidney disease and then co-manage in the hospital and then manage them medically after the transplant really for the duration. So we’re, we’re doing the medical stuff. I mean, if you have, if you have a, if you have a wound complication, if you have other kinds of surgical complications, the surgeons are gonna be, are gonna be dealing with those problems. They are having good, having good Sur surgeons is, is of course the foundation. You need to have a really good operation to start with,

Bri (17:35):

Well, in following that line around complications, from what I understand, some transplants can last for decades, the rest of your life. Some can fail within one to two years. Tiffany’s for example, who we spoke with failed within eight years, others can fail within that first week. What are your thoughts around the reasons as to why?

Dr. Corpier (17:56):

So the early failures are most often, I mean, in this era that we’re in and for, and for decades, really, most often they’re technical. They are that there was some problem usually at, with the surgery at the level of the blood vessel. Usually there are occasional early failures that are from previously unidentified cloting disorders that were not technical, but, but the patients, blood system had an abnormality that wasn’t detected. Mm. Most, very often these are screened for ahead of time. And so, so you don’t have very many of them. But but these are the two most common reasons. Now in the early days of transplant, it was from another cause completely. It was something called hyperacute rejection, which basically doesn’t happen anymore in America. And when you look at failures, you know, in the first couple of years, then sometimes those are related to rejection or recurrence of the original disease. Mm that’s. The thing, acute rejection is part of it. But the medications that we use now are phenomenally successful in suppressing that response. And that goes back to making sure you take the medicines. Right. You know? Absolutely. As I tell patients, they hardly ever work in the body.

Dr. Corpier (19:44):

You need a sense of humor to do this job.

Bri (19:49):

And I’m sure the question comes up then too. Can chronic kidney disease still come back within my transplant?

Dr. Corpier (19:56):

Oh yeah. And depending on what caused it in the first place it can, it can come back. And so for example, you know, I know I keep saying diabetes, but the reason is because diabetes is so common. I mean, close to half of the people on dialysis, you know, have diabetic kidney disease, you know, somewhere in the 40 to 50% range. So it’s very, very common. Yes. Diabetes can come back, but usually that is, you know, a, a 10 year, maybe eight or 10 years down the road. That’s not usually in the first couple of years. But there are some diseases with funny names like focal segment on Glo sclerosis and MEO proliferative Gleer nephritis. And as examples that can return in the, there are some diseases like polycystic kidney disease, which is the most common congenital cause of endstage renal disease. I mean, this doesn’t come back in a transplant. Because this was, this is an abnormality of the organ. And we, you put an organ in from a non polycystic person. We always do. It doesn’t come back.

Bri (21:13):

Gotcha.

Dr. Corpier (21:15):

Really depends. We have to, we set patient expectations about that too, as well. Like, do you have a thing that has, because there are different rates of recurrence and so depending. So, so the more you know, about what caused the patient’s kidney disease, the more you can kind of set expectations for the patient, but also for the physicians that what you’re looking for. Yeah. Afterwards,

Bri (21:38):

Well, and one of the other episodes, we talk a lot about what it looks like post transplant and the relationship between patient and physician being able to work together. Overall. It’s a, sounds like there’s a lot of information because there are so many conversations you hinted at just how many people make up your village of, of support. There’s a lot of information and records that need to be kept up. Yes. That’s a TA you’ve mentioned homework, I think even specifically. So it sounds like being able to track all that, what do you recommend to patients for being able keep all of this together and to keep up with it?

Dr. Corpier (22:10):

The, the number one thing that, that, that I care about is their medication list. Like, it’s just, you know, this is just incredible, you know, like a chef, you know, if you ever watch top chef and the ones that get turned, the ones that have to leave, what you see ’em is packing up the or knife, right. They have their tools of the trade. And in terms of keeping your transplant, this is your, this is your toolbox. And so knowing your medications, having a, having a list of them like that’s the big thing. And the, the patients, you know, we don’t the patients except those that really want to, and they’re usually like engineers, okay. Who wanna know like every number, you know, you don’t have to know every number. I have to know the number, but you don’t have to know all the numbers. I mean, you can, you know, we try to teach them, this is where your kidney function is. This is your creatinine. This is what your, this is what your red cell, we te there’s certain pieces of the information, because it can be overwhelming. And the whole concept here is that between the doctor patient relationship between the staff patient relationship is that, is that you reduce anxiety so that people can learn and can, will approach you when they have questions and you get much better results that way.

Bri (23:36):

I keep notes in my phone. I use the notepad in my phone somewhat religiously. There are so many to do lists and things like that that are included there. So I can imagine in some cases it’s just dropping information in, in something like that.

Bri (23:52):

I was gonna say, you know, are there recommended, you know, methods for that, but also it sounds like it’s really important to have an understanding of your baselines. That’s something that I’ve heard you talk about a couple of times being able to know where you’re resting, what resting heart rate and some of those baselines to understand where, where changes are. So you understand what tools to apply best.

Dr. Corpier (24:15):

Yeah. I think that, for example, you know, because people travel so much. Yeah. You know, and you know, or because like for our patients, you know, they may end up seeing multiple different subspecialists depending on what’s going on. You know, it’s good for them to know, or if they have to show up in an ER somewhere it’s, it’s, it’s good for them to know. Okay. You know, I know my creatinine, which is still to this day’s tests that we use most to track kidney function. I know what Myat has been and what it ranges in. So this is not unusual for me and anything that is a little bit not normal. It’s good for patients to know, like, like if they’re anemic, but they’re sort of stable at a certain range, you know, it’s good for them to know kind of these, just few things so that if they like I said, if they come in contact with other providers.

Dr. Corpier (25:26):

You know, or maybe doesn’t get alarmed, you know, that the patient can say it used to happen a lot with the white blood cell count. Like the people on steroids, their white blood cell count tends to run higher. And so then they would get into this whole thing sometimes with other physicians sending them in all kinds of places, you know, or their anemic and things like that, that, you know, that we’ve been following and have an understanding of why that is encouraged to keep records.

Dr. Corpier (25:54):

You know, we, you know, we encourage them to know some things, but again, you know, most, everybody would really like to just go through their life and not have to think about these things every single day. And I think that for people with chronic kidney disease, because it, because transplant’s not a cure, you know, we’re trying to find some middle ground for them, you know where, I mean, the purpose of your life is not to be a patient. The purpose of your life is whatever it is that you want your life to be. And then we, you know, we need to keep this thing going over here. And so, so, so I mean, that’s the way I look at it.

Bri (26:39):

Well, and I think, you know, a fantastic theme for us to wrap this episode on is that preparation and being able to be in tune with yourself in tune with your body and because everyone’s levels are gonna be acceptable for, for different things. And so being able to just keep track of that as much as you can, incredibly important. Thank you so much. I think these are fantastic insights. I know I learned some things, so that way I can make sure that for me and those around me are informed. Thanks for tuning in today. Learn more about Dallas nephrology associates@wwwdotdf.com. That’s D N E P h.com. And if you found the inform valuable, be sure to share with those also impacted by chronic kidney disease.

Disclaimer

Dallas Nephrology Associates’ (DNA) podcast series, Let’s Talk About Kidneys, is provided for general information purposes only and does not replace the need to talk with a healthcare professional about your unique situation, care and options. Our goal is to provide you with as much information as possible so you can be as informed as possible. Reference to any specific product, service, entity or organization does not constitute an endorsement or recommendation by DNA. The views expressed by guests are their own and their appearance on the program does not imply an endorsement of them or any entity or organization they represent. The views and opinions expressed by DNA employees, contractors or guests are their own and do not necessarily reflect the views of DNA or any of its representatives. Some of the resources identified in the podcast are links to other websites. These other websites may have differing privacy policies from those of DNA.  Please be aware that the Internet sites available through these links and the material that you may find there are not under the control of DNA. DNA shall have no responsibility for the accuracy, legality or content of the external site or subsequent links. Contact the external site for answers to questions regarding its content. The resources included or referenced in the podcasts and on the website are provided simply as a service.  DNA does not recommend, approve, or endorse any of the content at the linked site(s).  The content provided on this website and in the podcasts is not medical advice and should not be used to evaluate, diagnose, treat, or correct any medical condition. The content is solely intended to educate users regarding chronic kidney disease, end-stage renal disease (“ESRD”), end-stage kidney disease (“ESKD”) and related conditions, and ESRD/ESKD treatment options.  None of the information provided on this website or referenced in the podcasts is a substitute for contacting a healthcare professional.