Episode Transcript
Speaker 1 00:00:05 <inaudible>
Speaker 2 00:00:59 Good evening. Thank you for joining disability and progress, where we bring you insights to ideas about and discussions on disability topics. My name is Sam I'm the host of the show. Thanks so much for tuning in Charlene doll is my research woman. Hello, Charlene. Good evening everyone. Hey, Dr. Paul draws is in the studio with us and Dr. Draws is an assistant professor of medicine in the division of renal disease and hypertension at the university of Minnesota medical school. And he's in the studio tonight talking about the subject CKD or chronic kidney disease. Amber Washington, Howard is also with us in the studio and she's going to be telling her story from the side of somebody who's living with the disease. Good evening, Amber. Good evening. Thank you so much for joining us. All right. So can we start out by, um, Paul, can you just give us some history, a little bit about you and, um, when you went through medical training, how did you decide on the whole renal area? Why did you decide that was your thing?
Speaker 0 00:02:02 Okay. Again, thank you for having me here. Um, it's exciting to be here on a world kidney day and it is world to me, day to day. Yes. Pie day. Exactly. So, uh, I was born and raised here in the twin cities. I grew up in St. Anthony village, um, and went to, uh, school at Amherst college in Massachusetts. Um, growing up, I knew, uh, that I wanted to be a physician. I, uh, was injured often requiring stitches. Um, and I always found, uh, going to the doctor to be fascinating. And so that was, uh, the beginning of my interest in, uh, medicine. Um, and then in medical school, uh, my interest range from orthopedic surgery, um, my to internal medicine. And I quickly realized that I was interested in physiology, how the body works, uh, and specifically, uh, the kidneys, uh, the electrolyte abnormalities of volume, uh, chronic kidney disease and the different conditions that affect the kidney, uh, were all of great interest to me. So, uh, I went on and did internal medicine, uh, training nephrology fellowship, uh, at case Western reserve university in Cleveland, Ohio, uh, and moved back here to the twin cities, uh, in 2012 and had been there ever since.
Speaker 2 00:03:26 Wow. Okay. Excellent. Can you give us a little bit of a simplistic definition of what is chronic kidney disease?
Speaker 0 00:03:35 Chronic kidney disease is a decrease in function of the kidneys. The kidneys do a lot of different things from a moderate volume, and it does this by holding onto or excluding sodium, um, keeping electrolytes, uh, within normal range, things like potassium, calcium phosphorus, uh, the kidneys also, uh, excrete hormones, uh, like HIPO that tell the bone marrow to create red blood cells and they convert inactive, uh, vitamin D to active vitamin D. Um, and so the filtering component to the kidneys is what we're most familiar with. And, um, we assessed that, uh, by measuring creatinine in the blood and creatinine is, uh, produced by muscle it's excreted by the kidneys. The muscle produces it at a constant rate. And so by measuring the creatinine level and the kit in the blood, we're able to assess kidney function.
Speaker 2 00:04:38 So there's probably several things that can cause the kidneys to start malfunctioning or not working properly. But what would you say some of the top things are that would start causing CKD?
Speaker 0 00:04:54 Okay. That's a really good question. Uh, there's really top two and that would be diabetes and hypertension. And then there's a number of other things that can cause, uh, chronic kidney disease, like family history, cardiovascular disease, recurrent urinary tract infection, and then more, uh, uncommon disorders like lupus or rheumatoid arthritis. Uh, but the two main causes are diabetes and hypertension. And we know this, uh, because people who go on to dialysis, uh, we keep track of the cause of their, uh, end stage kidney disease. And about 50% of people who start dialysis, uh, in this country, uh, have diabetes as their cause. And about 30% have hypertension as their cause of end stage kidney disease.
Speaker 2 00:05:43 And the other 20% have some hodgepodge of stuff,
Speaker 0 00:05:47 Exactly family history, cardiovascular disease, kidney stones, uh, a genetic, uh, component to their kidney disease. What is,
Speaker 2 00:05:58 Um, I've heard this topic of this, um, initials thrown around what is GFR and is it something that's measured?
Speaker 0 00:06:06 So that's a good question. Uh, GFR is glomerular filtration rate, and so that's, uh, can be measured, uh, but it's cumbersome. And so we estimate, uh, GFR glomerular filtration rate, uh, based on the lab that I mentioned previously, the creatinine value. We also use, uh, gender race and age to estimate GFR. And this is how we stage kidney disease or the severity of kidney disease. So GFR normal is over 60 chronic kidney disease is less than 60 moderate to severe would be less than 30 and severe chronic kidney diseases or GFR less than 15.
Speaker 2 00:06:51 So you measure the GFR and you said that even, um, gender and even race can have different GFRs. So even if you have normal kidney function, so are you telling me that like somebody of, if I, if I, if there's a Caucasian person, an African-American person and they're the same age and they have functioning kidneys, can they have different levels of GFR then
Speaker 0 00:07:13 That's true. So if you have a individual with the same creatanine value, so that's what we measure in the blood. Uh, an older individual, uh, who's female might have a different GFR than a younger male, uh, who is African-American. Um, and so those variables go into the calculation of GFR, but the main determinant is the creatinine value in the blood.
Speaker 2 00:07:43 You talk about the different stages of CKD the, before you do that, can you talk a little bit about like what the beginning signs of CKD might be?
Speaker 0 00:07:54 Sure. Um, unfortunately there are no early signs of chronic kidney disease, people with mild and even moderate chronic kidney disease are asymptomatic for the most part at later stages of CKD. So this would be moderate to severe, or the GFR typically is less than 30 normal. Again, being more than 60, uh, the signs, uh, would be fatigue, nausea, loss of appetite, difficulty sleeping, uh, and itching. Oh my wow.
Speaker 2 00:08:31 So this leads me to like, you know, when somebody gets their yearly exam, like males don't always do this, but often females do at least don't they measure something or isn't their blood drawn or urine samples taken or anything that kind of measures or can trigger this.
Speaker 0 00:08:48 So most individuals, uh, who have a condition like diabetes or hypertension will have their creatinine measured people who are on medications, where kidney function is important for dosing, the medication we'll also have labs drawn to have their kidney function assessed, uh, but normal, healthy individuals middle-aged don't necessarily need to have their creatinine measured, uh, or your analysis to look for protein or blood in the urine. And that was, would be two other markers of kidney dysfunction. So, well, the majority of patients who go to see their physician who are on medications or have diabetes or hypertension should have their kidney function assessed with both the creatinine and a urine analysis. It's not necessarily the case that everyone that goes to see their doctor for a well visit is going to have a creatinine measured in their kidney function assessed.
Speaker 2 00:09:42 Okay. So now we can talk a little bit about stages and what one should expect. Go ahead.
Speaker 0 00:09:51 So, uh, with, again, with mild chronic kidney disease and even moderate CKD, uh, it, which is the acronym, uh, there's going to be very few patients who have symptoms from their kidney disease. Um, but in the advanced stages, uh, symptoms are fatigue, nausea, loss of appetite, difficulty sleeping itching can be a symptom. And this is difficult because a lot of times people will have multiple conditions, uh, and fatigue, nausea, loss of appetite aren't necessarily specific to chronic disease.
Speaker 2 00:10:28 It could sound like a lot of things, uh, being pregnant could be one of them. Uh, so it was just interesting that, uh, you know, some of these things, it feels like that could be anything.
Speaker 0 00:10:42 And that makes it difficult to assess, especially when we're assessing a patient's in the hospital who have, again, multiple conditions, uh, liver disease is a good example that can have symptoms that crossover, uh, with chronic kidney disease.
Speaker 2 00:10:58 Paul, can you tell us how common is CKD? It sounds like, well, go ahead and I'll tell you what I've heard. So go ahead and tell us,
Speaker 0 00:11:07 So again, it's associated with diabetes and hypertension, and both of those are increasing in prevalence in the United States. Uh, so we're seeing an increasing prevalence of CKD. Uh, approximately 7% of us adults have chronic kidney disease. So that's 30 million adults in the United States. And I was just reading, uh, given that it was world kidney to, uh, disease, uh, day, uh, that nearly 800 million people worldwide have chronic kidney disease.
Speaker 2 00:11:41 Yeah. And I've heard that like a lot of people just that you can have it for a while without knowing like the beginning stages you can go through for awhile and not even know
Speaker 0 00:11:56 That's correct. So in normal individuals who have, uh, kidneys that are functioning, uh, regularly, the GFR that we talked about earlier, it starts out in the sixties to nineties will go down by about one unit per year. Um, in people with chronic kidney disease, it will vary. Um, most patients with CKD, the GFR will go down by one to five units per year. And so over 20 or 30 years, some people's CKD will go from a GFR of 55 to 35 and they may never have symptoms. Um, and so there can be a long slow course to chronic kidney disease, others, uh, if their blood pressure is poorly controlled or their diabetes is poorly controlled, uh, or they have acute kidney injury, uh, then they might have a more rapid decline in their kidney function.
Speaker 2 00:12:56 Um, is the CKD, um, uh, prevalent with all types of diabetes? Does it matter which type
Speaker 0 00:13:03 It's present in both type one and type two diabetes? Yes.
Speaker 2 00:13:09 Is there, um, a gender preference for chronic kidney disease?
Speaker 0 00:13:14 Good question. It is, uh, slightly more common in females than males.
Speaker 2 00:13:20 Is there a race preference
Speaker 0 00:13:22 That it is, uh, slightly more common in, uh, African-Americans uh, Hispanics, uh, and this might be genetic, uh, especially for African-Americans, there's a gene, uh, called <inaudible>, uh, and it is associated with chronic kidney disease and end stage renal disease in African-Americans. There might also be a socioeconomic component, uh, and a few studies have demonstrated, uh, like many conditions that, uh, low socioeconomic status is associated with increased risk for chronic kidney disease.
Speaker 2 00:14:00 Is that because it might be different than diet and exercise and what, what else
Speaker 0 00:14:05 It could be diet and exercise. There's a study from, uh, the Southeast United States, uh, from, uh, Georgia, South Carolina, North Carolina, uh, that showed that, um, much of the racial disparities, uh, associated with stroke, uh, and hypertension is associated with increased salt in the diet. Uh, so that might be part of the explanation for the disparities, uh, in chronic kidney disease as well.
Speaker 2 00:14:35 Is there a margin of age where CK scent tends to hit?
Speaker 0 00:14:40 Yeah, the data showed that, uh, while overall 7% of us adults have chronic kidney disease, uh, those over the age of 65, that's 35% of, uh, individuals have chronic kidney disease. And so aging and chronic kidney disease go hand in hand again, normal individuals will have a decline in their kidney function. And so it's only natural that, uh, with age, uh, some people's declining kidney function will be more rapid, uh, and that prevalence of chronic kidney disease is greater, uh, in an older population,
Speaker 2 00:15:20 Obviously it can hit quite young,
Speaker 0 00:15:22 Correct? Correct. And some of the diseases, uh, that can cause chronic kidney disease at a younger age include inherited conditions, uh, recurrent urinary tract infections, uh, and then some of the less common diseases like lupus, uh, that I mentioned earlier.
Speaker 2 00:15:44 Um, so I suppose this doesn't really have anything to do with it, but it has the word kidney in it. Do kidney stones have anything to do with it?
Speaker 0 00:15:53 They do. And kidney stones can cause obstruction. They can cause damage. They can cause inflammation. Uh, and, uh, people who have kidney stones are at increased risk for chronic kidney disease.
Speaker 2 00:16:06 And would they be worried about their, um, GFR? Should they be, should they be,
Speaker 0 00:16:13 They should. And, uh, there are things that people can do, uh, to avoid or recurrent kidney stones. And that includes, uh, some medication. So people who have kidney stones should go to see a nephrologist, a kidney doctor, um, but also increased fluid intake. So increased intake of water can dilute out some of those factors that cause, uh, kidney stones.
Speaker 2 00:16:41 Wow. So can you reverse a CKD or Kenny reader verse any of the damage that it does?
Speaker 0 00:16:50 So not all people, not all patients who have chronic kidney disease will have a progressive course. Some people do recover. Unfortunately we don't have, uh, any treatments that are known to reverse chronic kidney disease. We do have some treatments that are known to slow the progression of the disease and this includes treatment of diabetes. And so patients who have diabetes, uh, should target, uh, their A1C. So this is a measure of, uh, control of diabetes, uh, to the range recommended by their physician. This can reduce risk for diabetic retinopathy CA so that's diabetes complications in the eyes and diabetic nephropathy. So that's diabetes complications in the kidneys. There are some specific medications for high blood pressure like angiotensin converting, enzyme inhibitors and ARBs angiotensin receptor blockers that can slow progression of kidney disease, especially in people who have diabetes and kidney disease patients with CKD should avoid N said, so these are medications like ibuprofen, Aleve, Advil, Motrin, and why is that they can directly damage the kidneys they're associated with increased blood pressure. So both of those, uh, are, can accelerate declining kidney function. Tylenol acetaminophen is not in that category and is okay for, uh, patients with CKD.
Speaker 2 00:18:29 So it makes me wonder, should all of us support,
Speaker 0 00:18:33 Not necessarily not everyone has to cater to your hypertension and some, for some people, especially folks with joint pain, uh, and CEDS are very effective at treating the pain. I see.
Speaker 2 00:18:47 Um, w I'm going to just, uh, jump a little bit here. Um, I want to introduce, um, Amber Washington, Howard. Good evening, Amber. Good evening. I want to thank you. Amber was the one who brought this topic to our attention on disability, on progress. And we, you know, we always like to hear, well, we love to hear when people listen, but we love to hear people's comments and suggestions. And she brought this as, um, somebody who is living with the disease. And so Amber, I'm wondering if you can tell us your story and how, when you first discovered you were getting sick,
Speaker 3 00:19:26 He didn't know I was getting sick. I didn't first discover that has CKD till 2014. I actually had an infection I had, what's called an abscess. And I went in for them to take a look at it and treat it. And I came back home and I was getting progressively sicker and sicker. So when I went back, they took a deeper look and that's when they found out I was already in stage three.
Speaker 2 00:19:54 So Dr. Draws, what does stage three usually mean?
Speaker 0 00:19:58 So stage three would be ranged from mild to moderate chronic kidney disease. And so that's a GFR ranging from 30 to 60. Um, and, uh, you know, Amber's story is very familiar to kidney doctors. Folks who have, uh, infections, uh, are at risk for chronic kidney disease, from the inflammation and then, uh, antibiotics, uh, which are, uh, very fortunate to have, uh, 200 years ago, 150 years ago, if you got pneumonia or if you had an abscess, it's not likely that you'd survive because we didn't have antibiotics, but unfortunately, most antibiotics are, uh, potentially damaging to the kidneys and can be associated with acute kidney injury. And some people who have acute kidney injury don't recover and end up having chronic kidney disease.
Speaker 2 00:20:53 Oh, okay. So Amber, what was your response when you heard this, did you understand what they were telling you? Did you, I mean, were you, did you have any family history of CKD? What was your original response?
Speaker 3 00:21:09 Yes, I did understand what they were telling me, unfortunately, um, it is prevalent African-American women, so my mother also did have CKD and she passed away from it. So it was very frightening of course, and very scary, but I was aware of what they were telling me.
Speaker 2 00:21:26 And so what did you do, I mean, short of having some horrible thoughts and emotions, I'm sure. What was your feeling of like what you would do next?
Speaker 3 00:21:39 Just trying to see if I could slow it down as much as possible, trying to change my diet, trying to exercise, uh, they said weight loss, changing your diet, staying on top of your blood pressure meds and just trying to slow it down as much as I possibly could.
Speaker 2 00:21:56 Dr. Dross, how common is this? Two habits slowed down when people are actually really trying to take control of their lives like this,
Speaker 0 00:22:05 Right. And again, uh, Amber, it's great to have you here and great to hear, uh, you know, your side of the story. Um, and fortunately, you know, we do have some medications, treatment of diabetes, uh, specific medications for hypertension, for chronic kidney disease, uh, exercise, diet, uh, can be, uh, effective for reducing the risk for cardiovascular disease. Unfortunately, we don't have much that you can do for the CKD itself. Um, but reducing risks for cardiovascular disease is very important for patients with chronic kidney disease, because CKD is associated with increased risk for things like heart attack stroke and heart failure.
Speaker 2 00:22:53 So the heart's kind of that secondary thing that could have trouble if you have CKD.
Speaker 0 00:22:58 Exactly. Um, there are, uh, there is some evidence that a low protein diet, uh, can slow progression of chronic kidney disease, especially for people who have protein in their urine. Um, so we recommend that folks, uh, have a moderate intake of protein, uh, not the, uh, sausage for breakfast, ham sandwich for lunch and steak for dinner. That is the typical
Speaker 2 00:23:27 No Atkins diet. Huh. Uh, so, uh, you know, we kind of talked about how you can go for a while sometimes and not know, but feels like it's an Amber state now, which I want to get into she's now on dialysis. So she has kind of gone in five years from what seems like zero to five almost it's I guess. Um, it is her case feels like it's not usual. Yes.
Speaker 0 00:23:58 Again, the, the trajectory of kidney function in people with CKD varies a lot. Um, and you know, some folks who have difficulty controlling their diabetes or get admitted, uh, for other conditions like heart failure or a heart attack or pneumonia, and are exposed to potential kidney toxins, like the antibiotics. And again, I want to stress that antibiotics are critical in treating infection. And so I don't want folks to avoid antibiotics just to avoid kidney damage. Uh, but, uh, if the patients are hospitalized or had poorly controlled diabetes, they're more likely to progress. And so the course of CKD can vary. And it's also, uh, to comment on, uh, something you mentioned earlier in that, uh, patients don't necessarily know that they have chronic kidney disease, uh, even patients whose doctors have documented in the chart that they do have chronic kidney disease. The majority of them are unaware. And part of this is because it doesn't cause symptoms. It doesn't have, uh, the bang of a diagnosis like cancer or a heart attack. Um, and a lot of patients have multiple comorbidities. So they have diabetes, hypertension, they've had a heart attack, um, and CKD is just another thing on their problem list. And they may be less aware of that than the other conditions.
Speaker 2 00:25:30 So if you have CKD, you should definitely have a nephrologist that you're seeing
Speaker 0 00:25:35 If you have moderate to severe CKD. Yes, that's true. There's a given the large number of patients who have CKD in this country, those with mild CKD, especially stage three a, so this would be a GFR of 45 to 60 most, if not all primary care providers are comfortable taking care of those patients.
Speaker 2 00:25:57 Let's talk about dialysis. Um, Dr. Ross, can you kind of give us an idea of how dialysis works?
Speaker 0 00:26:06 Sure. Uh, and you know, we're very fortunate as a kidney doctors, nephrologists to have dialysis. It's one of the only treatments for, uh, end organ, uh, failure, uh, that exists in, in medicine today. And so dialysis is, uh, replaces some of the function of the kidney, mostly the filtering, uh, there's a few types of dialysis. The most common is haemodialysis. And so that would be, uh, blood dialysis, there's peritoneal dialysis. Uh, this is where a dialysis catheters inserted in the abdomen.
Speaker 2 00:26:46 I actually knew somebody who used to do that. He wasn't on it for very long. He said too much,
Speaker 0 00:26:51 Right. Some people tolerate it, uh, others don't. Um, and so dialysis is technically, uh, the filtering, uh, of a substance down its concentration gradient across a membrane. And so with haemodialysis the membrane, uh, is the filter that's been produced. Um, and we, uh, take the blood out using either a catheter that's inserted in a large vein typically, and then neck, uh, we run the blood through the dialysis machine, through the filter, uh, with dialysate. So this would be clean solution on the other side of the filter, the toxins move from the blood, into the dialysis, some substances, uh, move from the dialysis into the blood. And then we return the blood, uh, through the catheter or, uh, what is, uh, constructed as a fistula or a graft, uh, which allows us to do dialysis because we need very high blood flow rates, uh, in order to do dialysis in an efficient manner.
Speaker 2 00:27:58 And this is the own person's blood, right? Correct. So it's cleaning it basically and taking everything out and returning it
Speaker 0 00:28:07 Exactly. It's, uh, removing the toxins that the kidneys would have removed, um, maintaining balance of things like potassium. We are also able to pull off fluid if a patients come in volume overloaded, and this can be associated with elevated blood pressures. So treatment of high blood pressure and a dialysis patient, uh, can be, uh, effectively achieved, uh, with removal of volume with dialysis.
Speaker 2 00:28:37 How long does dialysis usually take?
Speaker 0 00:28:39 So dialysis is typically done, uh, three times a week, uh, and on average, about three and a half to four and a half hours per session, there are options for daily dialysis, and this can either be done in the human dialysis center. Uh, and so this would be their daily, uh, and that's typically nocturnal. So the patients will come in at night and the dialysis will run overnight. And some patients are able to do dialysis in the home, uh, where they, uh, and, uh, uh, family members, spouse, significant other, uh, hooked them up to the dialysis machine, monitor the treatment, uh, and they're able to do dialysis in their home.
Speaker 2 00:29:23 So is it more wearing on them to do that? Is it harder to do daily dialysis or dialysis in the home?
Speaker 0 00:29:32 Not necessarily the home dialysis, uh, patients, uh, do quite well. Um, and there's some evidence that they may have even fewer symptoms, uh, than patients who get dialysis three times a week.
Speaker 2 00:29:46 Is it cheaper?
Speaker 0 00:29:48 You know, I, that's a good question. I don't know the answer to that, but dialysis itself is very expensive on average, uh, dialysis patients incur upwards of $70,000 in healthcare costs a year. Wow.
Speaker 2 00:30:06 So Amber, yeah. Talk about your journey with dialysis.
Speaker 3 00:30:10 In my experience, dialysis is the harder part of me having kidney disease. Um, I'm doing hemo dialysis. So I go in the center through my blood and I do it three times a week, three hours, and trying to clean everything and pull it out in that amount of time is really weighing on my body. Um, I thought when I first started that I would be able to still do dialysis and go to work and keep my life pretty much the same, but unfortunately I wasn't able to keep doing both and I had to stop working and it's just a really tiring effect on me.
Speaker 2 00:30:46 Dr. Draws is that common.
Speaker 0 00:30:48 I was just going to say that this is a very common experience for some patients it's, uh, in, in the experience varies for dialysis patients. Many patients have the same experience than Amber does where they, they don't feel well because of the kidney disease. And then dialysis itself can be a shock to the system. Sometimes dialysis patients will feel worse after dialysis than they do on the day that they need dialysis in the morning, because there's a lot of shifts that go on with a three or a four hour dialysis. And so we remove toxins, we pull fluid, we do the functions that the kidneys do in normal individuals, 24 hours a day, seven days a week, but we're only doing that 12 hours a week. Uh, and so the electrolyte shifts, the removal of toxins. The fluid shifts can cause some patients to have significant fatigue. Um, and some patients have difficulty with cramping on dialysis, uh, and, uh, but others do okay with it and are able to continue working. And so the experience with dialysis very significantly, uh, by the ambers, uh, experiences, not, uh, outside of what we expect,
Speaker 2 00:32:14 Amber, was there something that made you decide to do hemo dialysis as opposed, or even to try daily or at home dialysis?
Speaker 3 00:32:25 I would say mainly the catheter. When I first started dialysis, I had a catheter in my chest. It was not comfortable. All you can't take showers had to wrap it with plastic whenever I was in the bathtub. And it just really, wasn't a good for me. So I decided to rather go ahead and do the hemo dialysis. Also, I have a son at home and I really don't want him to be exposed or seeing me going on dialysis is not a great site. So it's a catheter in the chest, a common place to put that doctor.
Speaker 0 00:32:55 It is, uh, we, uh, when we place a catheter for dialysis, uh, it needs to be in a large vein. And so the two main options are the internal jugular vein in the neck and the femoral vein in the groin. Um, and we prefer the neck, uh, as it's, uh, less likely to get infected. Um, and unfortunately most patients start dialysis with a catheter. Um, in part, this is because of the asymptomatic nature of chronic kidney disease and people don't seek care until later, uh, with when they have severe CKD. Um, and it's preferable if people are going to do hemo dialysis, that they start with a fistula or a graft, and this is a connection between an artery and vein typically in the forearm, uh, that allows for haemodialysis to be done, uh, without a catheter and fistulas and grafts are associated with reduced hospitalization, reduced infection, uh, and, uh, actually improved mortality. So, Amber, it sounds like you've moved on from a catheter to a fistula or graft.
Speaker 3 00:34:12 Yes. I now have a fistula. Um, it's still a little difficult just because I have narrow women in it, so I have to go back every eight months or so, and they put a balloon and they open it up. Oh, wow. Is that common
Speaker 0 00:34:27 Again? That that's common as well? Uh, it sounds like Amber, uh, is, uh, the typical dialysis patients. Uh, but congratulations on moving on from a catheter to, uh, uh, fistula graft. Uh, unfortunately they don't last forever. Uh, you have a narrowing fibrosis, uh, and, uh, this can be both where the fistula is created or it can be more centrally located closer to the heart, uh, and that will make it so that the fistula graft is not as efficient for dialysis. Uh, some of the early signs can be that there's bleeding longer after dialysis than we'd expect. Uh, the nurses will have to hold pressure. Um, and fortunately we do have some interventions that are effective, but many patients have to move from one fistula to then to another, to another, um, over the course of their dialysis experience.
Speaker 3 00:35:27 Amber, how did this affect being a mom? How did you deal with this with your son? It's a little difficult because he's 11, as much as you try to explain it, he still doesn't get it totally in for, he really knows their mom's sick. And it's hard because you're trying to tell him I can't do this today, or I don't feel up to this or I'm tired and it's not what he's used to or what he expects.
Speaker 2 00:35:55 Right. Um, what kind of things do you do for work arounds?
Speaker 3 00:36:03 Uh, are you just for like working around the house,
Speaker 2 00:36:05 Getting around, like being more tired or how do you deal with, you know, trying to keep your life as normal as possible?
Speaker 3 00:36:16 My biggest thing and trying to keep my life as normal as possible, we try to stay as optimistic as I can try to focus on little things to do around the house every day. Um, I've started my own kidney page called love your beans on Facebook, where I talked to other people with these symptoms and try to find a common nature with other people and just having a joy within myself still,
Speaker 2 00:36:45 I'd like to talk about, um, kidney transplantation and Dr. Does, can you speak to that at all as far as how that works?
Speaker 0 00:36:56 Sure. Uh, and you know, we're fortunate here at the university of Minnesota to have, uh, an outstanding kidney transplant program, uh, transplant, uh, physicians do an extra year of training. Uh, and in that year they learn about, uh, eligibility for transplant eligibility, for people donating a kidney, uh, the immunosuppression that's required for transplant and then the complications after. And so kidney transplantation is actually the preferred treatment, uh, for those who have end-stage kidney disease, it's associated with improved, uh, outcomes. Uh, obviously don't need to be going to dialysis three days a week or six days a week. I don't need to do peritoneal dialysis. Patients need to be able to tolerate and survive the surgery itself. Uh, it's, uh, not a major surgery, but, uh, not a minor surgery. Um, and so the first thing is to assess whether or not patients are fit enough well enough. Um, obviously they have advanced chronic kidney disease, but we, uh, the transplant nephrologist will assess for cardiovascular disease, heart disease, um, and other conditions that affect, uh, surgical outcomes.
Speaker 2 00:38:20 And so you have to be quote a match right there, right?
Speaker 0 00:38:24 So the, uh, kidney will come either from, uh, of family member, an acquaintance, uh, a spouse, uh, or, uh, we do get kidneys, uh, from a deceased donor. So, uh, patients who have have a car accident, uh, have a brain death, uh, their kidneys, uh, would be eligible for donation and the match, uh, looks at both the donor characteristics and the patient characteristics and, and whether or not, uh, the immune system from the recipient, uh, will, uh, attack the donor kidney, uh, despite having the immunosuppression. And so there's a certain matches, a blood type, uh, is an example where, uh, it's an absolute contra-indication others, uh, whether it's just an immune, uh, intolerance where there's not a match, uh, where some are acceptable, but it's, it has to do with the immune system, uh, and blood type, uh, and the, the recipient, uh, immune system, recognizing the donor kidney, uh, and rejecting it.
Speaker 2 00:39:41 And just so people are aware, it's my understanding is, I mean, it's, it's, people are very capable of living with one kidney.
Speaker 0 00:39:49 That's true. Uh, so you
Speaker 2 00:39:50 Wouldn't have to die to give a kidney. Nope.
Speaker 0 00:39:53 And so that's referred to as a living donation, um, and uh, many people do that every day. Uh, both because they know someone within stage kidney disease, or just for altruistic reasons. Um, and there have been many long chains they're referred to as of, uh, kidney transplants where, uh, individuals donate, uh, to recipients that they don't know. And so people can donate a kidney. Uh, it does not, it there's a slight, very slight increased risk for kidney disease, hypertension, uh, but it's in the range of 0.2% to 0.5%, uh, or about that. So not a significant increase risk. And so if anybody out there is thinking about donating a kidney, I'd encourage them to contact a transplant center on near them and really to encourage people when they're signing up for their, uh, driver's license to put down that you're willing to be a donor, uh, and volunteer to be a donor, uh, is I think people have probably heard, uh, God doesn't need your kidneys on your organs. Uh, you can leave them here for someone who does.
Speaker 2 00:41:12 It's very interesting to me. My understanding is for in Europe, you have to opt out in order to not donate being an organ donor here, you have to opt in. Why is that?
Speaker 0 00:41:25 I wasn't aware that, uh, there was an opt out policy in Europe was familiar. That is an opt in here. Uh, I think it's, um, you know, legal issues, uh, the culture here, uh, has driven that, um, I don't know of any reason medically why that would have to be, I think it's purely just a legal, uh, issue and that's how the laws have been written. Um, I think I would advocate for an opt-out policy if politicians or voters asked me, but, uh, uh, I think that would be a good thing,
Speaker 2 00:42:03 Amber, I presume you're on the transplant list of people waiting.
Speaker 3 00:42:08 Yes. I'm on the transplant list here in Minnesota, as well as Iowa. The list is three to five years long. Um, so that's also another tedious part you're kind of waiting for this phone call and hoping it comes before something drastic happens.
Speaker 2 00:42:24 Can you only get on the list when you're on end stage?
Speaker 3 00:42:28 I don't believe that it's only when you're in end stage, no doctor dries.
Speaker 0 00:42:33 So you can get on the list, uh, when your GFR falls below 20. Um,
Speaker 2 00:42:39 Well, isn't that kind of like that? Well,
Speaker 0 00:42:42 Not necessarily. So a lot of people with a GFR of 18 won't have symptoms, um, and, uh, with the GFR less than 20, uh, some individuals will have two, three years where before they need dialysis. And so, uh, they're not necessarily the same, the average GFR. So the glomerular filtration rate when people start dialysis is between five and 10. Uh, and so a GFR of 15 or 19 or 20 doesn't necessarily mean that, uh, patients need, uh, what we call renal replacement therapy, either perinatal dialysis, hemo dialysis, or a transplant.
Speaker 2 00:43:24 Amber, how long have you been on the list?
Speaker 3 00:43:26 I've been on the list here for two years and I've been on a list in Iowa for about eight months. Wow.
Speaker 2 00:43:32 Okay. I'd like to talk just a little bit about, more about, um, transplant. Cause I think that just so vital and important. And can you tell people how to do, how to get on the list to be able to donate an organ again, Dr. Dresser?
Speaker 0 00:43:51 So, uh, if you're interested in donating an organ, uh, you should contact a transplant center and we have, uh, had been County, uh, and, uh, the university of Minnesota here in the twin cities. Um, and, uh, if you're listening elsewhere, uh, you can look online. Um, most major universities will have a transplant center. If you call, uh, the kidney transplant, uh, clinic, uh, you can be evaluated, uh, as a donor, uh, this involves blood tests to make sure that your kidneys are functioning well, uh, and other health screening, uh, to make sure that you don't have other conditions like high blood pressure, uh, diabetes, cardiovascular disease. Um, but it's a laudable thought. Uh, and again, very other than this surgery, which is a, um, a moderate surgery, um, the donating a kidney doesn't necessarily significantly increase your risk for chronic kidney disease, um, hypertension or other, uh, conditions related to kidney function,
Speaker 3 00:45:03 Can a person resume normal life activities once they donate. And once they get a kidney,
Speaker 0 00:45:09 They can, uh, both. So donors, uh, the recovery in the hospital from surgery, uh, is, uh, a few days, uh, and then, uh, home probably from work for a week or two, uh, and resuming normal activities within a month with some limitations. Uh, but after six months, three to six months, a full return of activities after donating a kidney, kidney recipients, uh, similar, uh, three to four days in the hospital. Uh, and then a few weeks to a couple of months of, uh, recovery and rehab. Uh, and then, uh, fortunately, uh, they have near normal activity, uh, with almost no restrictions, um, and no longer have to worry about, uh, haemodialysis or peritoneal dialysis. So again, transplant, uh, kidney transplant is the preferred treatment for, uh, end stage kidney disease.
Speaker 3 00:46:12 How does someone know where they are on the list?
Speaker 0 00:46:17 So, uh, again, I'm not a transplant on nephrologist, uh, but, uh, the, if you are on the list or enlisted an active, uh, that would be with communication with the transplant center, the transplant coordinators, um, and, uh, they would have that information. And then once, uh, you've accrued time on the wait list or have a significant, uh, time on dialysis and then are on the transplant list, uh, when an organ comes up and you're near the top of the list, uh, the you'll get called in, uh, and, uh, hopefully the cross-match will be acceptable, uh, and the transplant can go forward.
Speaker 3 00:47:00 Amber, have you ever been called in, but the match wasn't a match? No, I haven't been called in as of yet. I've only been on the list about two years here. And then to add on I'm old positive, which is, uh, a hard, uh, match did they've told me really Dr. Drives, would that be okay?
Speaker 0 00:47:17 Uh, it has to do with the, uh, potential donors in the donor pool and the organs that someone who has an old positive blood type, uh, is able to accept. Um, and the, the wait time does vary by blood type, um, and by center. Um, so what did they tell you your expected, wait, time would be here three to five years. Three to five years. Okay.
Speaker 2 00:47:40 So I'm all positive. And so I thought that was like a really common blood type. And so that would be common to easy to have somebody donate and whatnot.
Speaker 0 00:47:53 Well, it, it, it depends on the type of, uh, blood type that you are, but it also depends on the type of, uh, organs that you can receive. And so not all blood types can receive, uh, uh, organs from folks with different blood types, um, and the availability of organs differs. And so that it really goes to what organs can go, uh, in which direction, uh, and the availability of organs with that blood type.
Speaker 2 00:48:20 So now it's just a matter of Amber holding on until she gets a match. Exactly. So one thing that I've, uh, I'm curious about is which came first organ transplant or dialysis, and when did those things happen?
Speaker 0 00:48:36 So that's a good question. I don't know when the first kidney transplant was, but it may be that they came about around the same time dialysis, uh, was, uh, first introduced medically, uh, in the late 1960s, early 1970s. Um, and, uh, has come quite a long way since, um, and we now have, uh, about 500,000 patients or more, uh, with end stage kidney disease, uh, in the country and over 400,000 patients, uh, on dialysis, on hemo dialysis in the United States. Uh, so it's been around for almost 45, 50 years.
Speaker 2 00:49:21 So I just recently read that, uh, they're being able to now safely grow organs in pigs, um, because they've been able to deal with the antigen or whatever it was that was causing problems between pigs and humans. And so I'm wondering, presumably this should lessen that horrible weight that people are going to have to do that.
Speaker 0 00:49:49 That's a good question. There's a lot of research in this area, um, with, uh, I believe it's called Xeno transplantation and, uh, it's early. Um, but the ability to grow, develop organs, uh, in, uh, other animals, pigs has been one of the, uh, most studied, uh, is on the horizon. Uh, I wouldn't say that it's going to be here in the next five or 10 years, uh, but someday hopefully, uh, the critical organ shortage that we experience, uh, with kidneys livers heart, um, may be solved by that type of technology.
Speaker 2 00:50:32 What about STEM cells? Are we doing anything with them and can they be successful in any type of transplantation?
Speaker 0 00:50:41 Another good question. I think, uh, that's another area of research, uh, that is promising, uh, there's, uh, STEM cell research, where we take the scaffold of a kidney, uh, and introduce STEM cells and the hormones and you, that causes, uh, what looks like a kidney to form. Uh, and there are cells that have a function of cells in the kidney, uh, but, uh, we're not to the point where that's the solution, uh, for chronic kidney disease. There's other, uh, research on STEM cells for, uh, treating patients with chronic kidney disease, acute kidney injury. But again, uh, that research is early, uh, and I don't see it moving into, uh, clinical practice anytime in the next five years.
Speaker 2 00:51:38 So Amber and Dr. Draws, I want each of you to tell me when you hear, if somebody was talking and you heard they had just been diagnosed with CKD, or they have just discovered they've been diagnosed per CKD, what would be each of your advice for them?
Speaker 3 00:51:57 I would tell them to try to take one day at a time. I know it's going to feel overwhelming and almost to the point is if you can do it, but just keep up your optimism. No, dude, you have great people. It's great support systems out there for people with CKD and just try to keep your faith and hopes up.
Speaker 0 00:52:17 I agree. I think there's a lot of resources out there for people who've just been diagnosed with kidney disease. The national kidney disease education program has some very good information, the national kidney foundation, um, you know, talking with your primary provider, talking with your kidney doctor, uh, getting your questions answered, uh, I think would be the advice that I have for patients
Speaker 2 00:52:42 And what would be a good way for somebody to find, I mean, a good nephrologist.
Speaker 0 00:52:49 Well, we think we have a few good nephrologists at the university of Minnesota. Uh, so you can call the nephrology clinic, uh, at the university of Minnesota. Uh, but, uh, I'm familiar with a number of nephrologists, uh, at Hennepin and in the community. Um, many of whom trained at the university of Minnesota. Um, and so we're fortunate here in the twin cities to have a lot of great nephrology.
Speaker 2 00:53:13 Do you have a website or something that we can give them?
Speaker 0 00:53:16 We do have a website. Uh, if you look for a university of Minnesota on nephrology, uh, it'll up
Speaker 2 00:53:27 Amber, what's your, can people look at your Facebook page? Yes,
Speaker 3 00:53:31 I have a whole Facebook page dedicated to it. It's called love your beans. And anybody is public. Even if you don't have kidney disease, if you want to just share on any disease or disability that you have, I'm open to having anybody come on and write or post
Speaker 2 00:53:49 Dr. Jazz briefly, any studies people can get involved with. And if so, how
Speaker 0 00:53:56 So? Uh, we're uh, studying chronic kidney disease at the university of Minnesota. I've got a, uh, PhD student Lama Gazi. Who's looking at, uh, health disparities as it relates to chronic kidney disease, uh, disparities in prevalence of CKD and patterns of care. Uh, Dan Murphy is a, uh, nephrology fellow in training. Uh, he's studying acute kidney injury in patients outside the hospital. Uh, our new, uh, division directors actually been there about a year now is studying some rare kidney disorders like IGA, nephropathy, lupus, nephropathy, uh, and in our endocrinology division, Luisa care, Maury, uh, and Betsy SciQuest are studying diabetes and chronic kidney disease.
Speaker 2 00:54:46 People can go to get involved with this. Yes,
Speaker 0 00:54:48 People can go to, uh, the department of medicine, uh, webpage, uh, to the endocrinology webpage at the university of Minnesota and, uh, the nephrology and hypertension, uh, webpage at the university of Minnesota.
Speaker 2 00:55:04 Thank you both for being on. I really appreciate it. This has been a fascinating show, so I hope many people listen. And if you have any questions, uh, where can they go?
Speaker 0 00:55:16 So, uh, again, the questions about chronic kidney disease, the national kidney disease education program, the national kidney foundation, both have outstanding resources, uh, for patients and providers. Thank you very much. Both of you. Thank you, Brian.
Speaker 2 00:55:31 Good night. This has been disability and progress. The views expressed on the show are not necessarily those of cafe or its board of directors. My name is Sam. I've been the host of the show. Thank you so much for tuning in. We've been speaking with Dr. Paul draws, Dr. Draws. Isn't an assistant professor of medicine in the division of renal disease and hypertension at the university of Minnesota medical school. He was talking about CKD or chronic kidney disease. We also had Amber Washington, Howard, who was a person living with the disease in the studio. This is Kathy I 90.3, FM Minneapolis, and kfa.org. If you'd like to be on my email list, you can email me at disability and progress at Sam, jasmine.com. Thanks so much for listening as always.
Speaker 3 00:56:17 Yeah.
