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The DNA’s podcast series, Let’s Talk About Kidneys, provides education dedicated to exploring the journey of those living with chronic kidney disease. We’re here to inspire meaningful conversations and to help people living with CKD gain a better understanding of their disease.
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Melanie:
Dr. Jaya Grande joined Dallas Nephrology Associates in 2020. She is board certified in internal medicine and nephrology. She serves as the director of DNA’s PKD Center of Excellence program. She currently sees patients at our Irving and Las Colinas office locations. Dr. Grande helps patients with various kidney disorders, including PKD, kidney stones, chronic kidney disease, protein and urine, electro-like issues, and uncontrolled hypertension, among other problems. Dallas Nephrology Associates is a designated PKD Center of Excellence, one and only two in Texas. Welcome to the Let’s Talk About Kidneys podcast series on PKD centers of excellence and polycystic kidney disease. Welcome, Dr. Gandhi. What is polycystic kidney disease?
01:11
Dr. Grandhi:
So, polycystic kidney disease is a genetic condition where patients develop cysts in their kidneys, and gradually, over a period of time, these cysts grow in size and cause a gradual decline in kidney function. It can cause multiple complications, like gradual decline in kidney function, patients ending up on dialysis. Sometimes they are at a high risk of developing kidney stones, kidney infections, cyst infections and complications in other organs, it’s kind of like actually a multi system disease.
01:49
Melanie:
What is a PKD center of excellence, and why is it important for PKD patients?
01:55
Dr. Grandhi:
So, a PKD center of excellence is a designation given to a healthcare facility who provide comprehensive care to patients with polycystic kidney disease. This designation is given by PKD Foundation
02:10
to centers which provide comprehensive care to patients who have polycystic kidney disease. It is by a team-based approach that patients are taken care of at these centers. They have nephrologists who are very familiar and have a deep understanding of the disease and are able to manage PKD patients. They, they see a high volume of PKD patients. They work in as a team with the help of dietitians who help the patients change their lifestyle, so that that can slow down the progression of underlying chronic kidney disease from polycystic kidney disease. They also have access to other specialists, because, as I said, it’s not just confined to the kidneys, it’s a multi-system disease. So, if a patient needs other specialists, these centers have access to those specialists. They also have a very active research department, so they are able to refer patients to clinical trials with a lot of like new medications that are coming out and patients will be able to participate in these trials even before they’re widely available.
03:24
Melanie:
How are PKD centers of excellence different from a general nephrologist?
03:27
Dr. Grandhi:
So, a general nephrologist, they manage all kind of kidney conditions, right? At PKD center of excellence, these nephrologists have a deep understanding of the condition, they’re able to
diagnose the patients correctly, they’re able to
do a risk stratification, that means to see which patients are going to progress rapidly versus some patients who can have their kidney function stable for many, many years, they’re able to offer disease modifying agents to these patients, they are comfortable offering these medications to the patients. Patients have a very close follow up with the these nephrologists. They also get referred to different specialists as needed, and you know, they get referred to genetic counselors if a patient is planning like family, and they want to know what is the risk of the kids having this condition, so because it’s a multi system complex disease, you know, I think at a center of excellence they get like a treatment in a team-based approach. All this translates to earlier diagnosis of complications, best treatment and follow up at these centers. They are able to work with other specialists and genetic counselors and dietitians to make some lifestyle changes, all of which is actually. That they have a better understanding of the condition, and they’re able to do whatever is needed, or whatever patients can do to slow down this progression of chronic kidney disease from polycystic kidney disease.
05:13
Melanie:
So, what can a patient expect at their first visit with a center of excellence?
05:19
Dr. Grandhi:
So, when you come to a center of excellence, like at DNA, which is one of the center of excellence in Texas. It’s a, you will have a very long and comprehensive visit. The team, it will start with having a thorough history. We find out about how the patients were diagnosed with polycystic kidney disease, any previous testing that they have done, like blood test, urine test, imaging testing that was previously done. What symptoms do they have? What is the family history? What is the inheritance pattern that has been running in the family? If any of them ended up on dialysis, if they had any of the family members had any other complications after that. We order blood test, urine test as a baseline to assess their kidney function, and then we do imaging tests like a CT scan or an MRI of the abdomen to look at the kidney size, what we call as a total kidney volume. It is, we use some clinical tools called Mayo Clinic classification, imaging classification, and looking at the CT scan and MRI, we can see where you are right now. Are you one of those rapid progressers, or are you one of those who is going to progress with regards to your chronic kidney disease, slowly we also use genetic testing to see what type of mutation that they are having. We have other risk tools like Pro PKD score that we also use to assess your risk factors if you are a rapid progresser. So what this helps is, is a better understanding for the patient. At the end of the appointment, they’re able to know more about polycystic kidney disease, what the risk factor is right now, at what level is their kidney function right now, how is their kidney function going to look like five years from now, 10 years from now, so that they can plan better. I always believe that, you know, when patients are able to understand their disease better, their outcome is also going to be better. At the same time, based on their symptoms and other complications, you know, we sometimes refer them to other specialists, and we always try to refer them to our dietitian, so that they can make some lifestyle changes that will help them in long term.
07:57
Melanie:
Yeah, sounds very individualized plan for each patient. Exactly, how does a PKD center of excellence contribute to research? I know you mentioned that earlier.
08:04
Yes, so one of the main ways the center of excellence contribute to research is they is by participating in clinical trials. Okay, so we always looking at new medications to slow down this progression of chronic kidney disease, or sometimes medications which are actually hopefully will be able to halt it completely, where the cysts are not going to grow in size as time progresses, so that the decline in kidney function can be slowed down. So, because we have a large volume of PKD patients, and we follow them closely. These centers of excellence are excellent centers for clinical trials. We are very lucky that DNA has a very active research department, and we have active clinical trials, which are going to start this summer at DNA.
08:59
Melanie:
Great. How can patients that maybe are not in the DNA area, how can they find other PKD centers of excellence?
09:06
Sure, so they could go to their PKD Foundation website, go to their search tool button, and put in, like, a center of excellence. They can put in a zip code where they’re living, and it will give them a list of the center of excellence or partner clinics, which are closest to their home, and then they can pick and choose to go to these centers. You know, if they are very far away,
they can still get treatment with their nephrologist, but maybe get evaluated at the center of excellence, like one time, you know, just so that they can be evaluated. It’s almost like getting a second opinion, and they know that they are getting the right care.
09:50
So, what does the future look like for PKD treatment?
09:54
Dr. Grandhi
Historically, PKD treatment, we have concentrated on maintaining adequate hydration, low. Bring the salt intake in the diet, maintaining a good weight, avoiding any over-the-counter pain medications like NSAIDs, which can hurt the kidneys, keeping your blood pressure under excellent control. The blood pressure goals for PKD patients is actually lower than general population. They have to discuss with their nephrologist it again depends on other, if they have other medical conditions, what stage of chronic kidney disease they’re in, but in general, if they are younger patients, they don’t have many other medical conditions, you know, the blood pressure goals are generally lower than general population, so this is like a basic treatment for all PKD patients, but now we are moving more towards disease-modifying treatment. One of the medications that we’ve been using for the last few years is Tolpapton, which is shown to reduce the cyst from growing bigger, helps to slow down the decline in kidney function, and actually may help to delay dialysis by a few years, depending on when you got started on the medication, and we have a few new clinical trials, which are getting started, where they are looking at actually halting this disease. It’s not just slowing down the progression, but altogether halting it, so that these cysts don’t grow at all. Remember, this is still investigational, it’s not into treatment, this is not standard of care, but there is a definite hope for all our PKD patients, and I’m really hoping that this becomes successful.
11:40
Melanie:
Great, what advice would you give someone newly diagnosed?
11:44
Dr. Grandhi:
So, for someone who is newly diagnosed with polycystic kidney disease, I would recommend don’t panic. First thing you know, it is quite overwhelming when you are first told that you have polycystic kidney disease. So, go to a center of excellence if possible. Otherwise, definitely you would need to see a nephrologist who is comfortable managing PKD patients, get blood test done, urine test done, get a baseline CT scan, or an MRI of the abdomen to look at the total kidney volume. Discuss with your nephrologist, what is your risk of developing end-stage renal disease in the next five years, 10 years, 20 years. Are you someone who is eligible for these new clinical trials that are coming on board? Talk to them if they can refer you to a genetic counselor if you are planning a family near future, and then ask them if you are somebody who can qualify for this medicine, like Tolvaptan. Not all patients qualify for this medication. It depends on if you’re a rapid progresser or not, and if there’s any other conditions that you have. How your liver enzymes are looking, you need a very close monitoring when you’re on this medication. There are some pros, cons, complications with this medication. So it is very individualized, whether you qualify for this medicine or not. So you have to talk to your nephrologist about it. Talk to them if they have access to these clinical trials, if they can. If you are somebody who would qualify for the clinical trials, which are coming in the pipeline, register yourself on the PKD Foundation website. You get a lot of information as a patient about polycystic kidney disease, about new clinical trials that are coming down the pipeline at DNA. We are lucky we actually maintain our own registry, in addition to encouraging our patients to enroll themselves into the PKD registry website. Also, so going to the PKD website would be how the patient would register for that. Yes, yes, they go to the PKD Foundation website, the register themselves. There is a health survey form that they have to fill out, which goes into detail about their symptoms, their family history, and all that. And they keep updating this form as time goes by. This all this information is extremely confidential, and they use it mostly for research purposes, and it is a national registry all over the country. Anyone who is above the age of 18 years and who are within United States, they can go to the website and register themselves. And there’s a lot of education on that website. Absolutely, 100% they have podcasts, they have handouts, a lot of information by dietitians, also on polycystic kidney disease.
14:47
Melanie:
So, can you kind of walk us through a real-life example of a patient that you know has PKD?
14:53
Dr. Grandhi:
Sure, I’ll give you one of my patients. She’s a 32 year old female. She was referred. To me, for polycystic kidney disease, she underwent a CT scan for some other reason, but incidentally they found that both her kidneys were enlarged and they were numerous in both the kidneys. So that’s when the primary care doctor suspected polycystic kidney disease and sent her over to me. Well, first time I saw her, she was in total panic. She had read everything about polycystic kidney disease, chronic kidney disease, dialysis, transplantation, everything online before she had come to me. So I went over all the testing that she had done before the blood test, urine test, the CT scan. Her kidney function by the time she had come to me was still very good. It was very strong. Her blood pressure was a little bit elevated, and I discussed the importance of following low sodium diet, having a healthy lifestyle. We adjusted her blood pressure medications, got her blood pressure under very good control. She wanted to undergo genetic testing, so we did order a genetic testing, and you know, which confirmed that she had polycystic kidney disease. Her CT scan showed that she was one of these rapid progressers, so she did qualify for the medication Tolvaptan. I had discussed with her about the pros, cons, complications, the need for monitoring of liver enzymes, while on this medication, she wanted to give everything that she could. You know, a lot of my polycystic kidney disease patients are like that. They’re all young patients, they would, you know, they don’t want to end up on dialysis, right? So she did everything in
her power, you know, to do, she started taking the Tolvaptan medication. She has been doing fabulous. We just titrated the dose of the medication to the tolerable dose that she could take. She comes for her appointments regularly. She is a very, very well-informed patient. She knows she has this condition, which is going to be lifelong, but she still works full time. She travels, you know, she knows how her kidney function is going to be like 10 years down the line, 20 years down the line. So I think it’s she always tells me I’m not as overwhelmed as I was when I came and saw you the first time, I think if I have to tell anybody else with polycystic kidney disease, I would advise them don’t try to fix everything on day one, it’s a process they have to, this is something that they need a close follow up with a nephrologist over many decades.
17:41
Thank you, Dr. Grande, for your participation today. And we all love your patients, and love your stories, and love you on the podcast. Thank you so much for having me, Melanie. Thank you for joining us. And thanks to Dr. Grande for enhancing our patients and their families’ understanding of what PKD Center of Excellence is, and how it improves patients’ lives with PKD.
18:02
A diagnosis like polycystic kidney disease can feel overwhelming. There are more resources, advancements, and support systems available than ever before. PKD centers of excellence are helping raise the standard of care, bringing together expertise, research, and compassion to support patients at every stage. If you’re looking to learn more, connect with a community, join the registry, or stay up to date on the latest in PKD research and advocacy. We encourage you to visit the PKD Foundation website if you’re in North Texas and seeking specialized care. Dallas Nephrology Associates is one of two PKD centers of excellence across Texas. Thanks again for joining us today. To learn more, check out our other podcast episodes, or call 214358 2300 to schedule a consultation.
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Thank you for joining us today. For information about Dallas Nephrology Associates, please visit our website at D N E P h.com. If you found our information helpful, feel free to share it with others who may also be affected by chronic kidney disease.
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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.
20:00
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 podcast and on the website are provided simply as a service. DNA does not recommend, approve, or endorse any of the content on the link sites. The content provided on this website and in the podcast 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 reference in the podcast is substitute for contacting a healthcare professional.