Helping People with Kidney Failure Live Fuller Lives

Dr. Dugan Maddux, a nephrologist, and Sam Trevino, who is living with kidney failure, talk about living with chronic kidney disease (CKD), prevention efforts, and about new technology that is allowing more people with kidney failure to live fuller lives by doing their own dialysis at home.

Dr. Dugan Maddux is currently Vice President for Kidney Disease Initiatives at Fresenius Medical Care North America (FMCNA). She graduated from Vanderbilt University and attended medical school at the University of North Carolina. She stayed in Chapel Hill for Internal Medicine residency and Nephrology fellowship and subsequently joined the Danville Urologic Clinic in Danville, Virginia for 18 years of private practice in nephrology. While in nephrology practice she worked with her husband, Frank Maddux, to develop a nephrology-focused Electronic Health Record.  During her tenure at FMCNA, Dr. Maddux has participated in clinical innovation projects related to CKD population management in pre-dialysis late stage CKD and during the transition to dialysis start. Other areas of focus and expertise include support for home therapies and kidney disease supportive and palliative care.

Sam Trevino is a former dialysis patient of 17 years, transplant recipient, and now a patient advocate/motivational speaker. Sam’s upbeat attitude and humor enabled him to develop “Urine Inspiration”, a presentation aimed at educating everyone about living a full life in the face of medical challenges.Sam’s mission is to help patients, patient’s families, and medical staff learn how to communicate and understand each other’s different perspectives, as they navigate through various signs and symptoms, treatment options, and the possibilities of living a full life with CKD.

Transcript

Neal Howard: Hello and welcome to Health Professional Radio. I’m your host Neal Howard here on the program, glad that you could join us once again our guests today are Dr. Dugan Maddux, a nephrologist and Mr. Sam Trevino and they’re both joining us on the program today to talk about living with CKD or chronic kidney disease, some prevention efforts and about how some new technology is allowing more people with kidney failure to live fuller lives by doing their own dialysis at home. Welcome to the program both Dr. Dugan Maddux and Sam Trevino, how have you both been?

Dr. Dugan Maddux: Great, thank you.

Sam Trevino: Great, thank you.

Neal: Well I mentioned that you’re on a nephrologist.

Dr Maddux: Yeah. So Neal a nephrologist is an internal medicine doctor who spent some time specializing in kidney disease. So we take care of patients who have kidney disease, kidney transplants, high blood pressure or who need dialysis.

Neal: Okay. And is that what you went into initially when you pursued medicine or did something happen personally in your life to steer you in that direction?

Dr Maddux: That’s a great question because chronic kidney disease is a disease that really impacts people’s lives. But for me, I actually was very interested in chronic kidney disease care early on so I did that early on, in part because it provided a great opportunity to work with people and to take care of people over a long period of time with a chronic disease.

Neal: Chronic, meaning ongoing, always going to be with you. Is there a type of kidney disease that is treated and you’re fine and now you can go on about your life without any dialysis, any medicines or any special treatment once you’ve been cured?

Dr Maddux: Yes, so that’s a great question because there is a type of acute kidney injury where people can have a kidney problem that’s transient and it doesn’t stay with them a long time. Although sometimes people who have taken the injury can be at higher risk for having chronic kidney disease later on but that is a distinction from people with chronic kidney disease like Sam where they will live with it all of their lives.

Neal: Sam, when were you diagnosed with your kidney problems?

Sam: Well I was 19 years old and somewhere around 1993 when I was diagnosed with my kidney failure.

Neal: What were you doing? What were the symptoms? Was everything going fine or were you feeling kind of sick or you knew there was a problem over a period of time or was it a sudden onset of symptoms?

Sam: That’s a great question because kidney disease is a silent disease. It comes on and doesn’t show many symptoms so I was a 19 year old college soccer player doing well, thriving, had the most beautiful girlfriend in the world, all the friends you could ask for and all of a sudden I started to become nauseous everyday, throwing up four or five times a day. My skin was itchy and burning. I was weak with anemia where I would fall asleep everywhere, fall asleep in class, even at the wheel sometimes.

Neal: What about your cognitive skills? I mean obviously you’re sick and you can’t focus but were there distinctions in how you were thinking? Were you having trouble focusing above and beyond just being tired?

Sam: I was having some issues with the toxins building up that we know as it be urine. But the toxins build up, they do create a little bit of a fog, if you will, and I had some issues in my college classes. I had to go out of the way to make sure that I was learning, reading out loud to myself and just constantly repeating information so I could pretty much beat it into my head.

Neal: Doctor is that across the board as far as what Sam is describing? That fog, is that something that’s going to happen to a person who’s in chronic kidney failure and does it happen in acute cases as well?

Dr Maddux: Yes. So that’s why Sam and I are really here from preventive kidney care today because awareness about being at risk for CKD is really important. So the symptoms that Sam is talking about occur really late in the disease. So that disease is silent and people who have CKD may not even have a clue they have it. So that’s why screening is really important because we want to try to help people before they start having these symptoms. So there are some good treatments early on, before symptoms happen that can slow progression of the disease so that some people may never experience the things that Sam experienced. I mean also if we’re following people, then before they get really really sick with some of these symptoms, we can start other treatments like talk about a kidney transplant, start a dialysis, talk about the options for dialysis therapies. So these symptoms do happen and I think what he described is pretty typical for people who are at the time, they need some renal replacement therapy like dialysis or a transplant but have not started that treatment yet. But hopefully, we can actually intervene and help people before it gets to where they have a lot of symptoms and are not feeling well.

Neal: Doctor, Sam was 19 thriving in college – who is at risk? And I mean he was 19, is that being a silent killer, does it start in the teens, early adulthood or can it happen say in a 60 year old man just suddenly?

Dr Maddux: Yeah. So there are many things that cause chronic kidney disease and some people do have issues early. Like Sam, they’re pretty healthy otherwise but develop a kidney problem. But the more common thing in the United States are older people. People who have had diabetes or high blood pressure for some number of years and then the chronic kidney disease occurs more gradually and also over the age of 60, everybody over the age of 60 should be screened for CKD because you’re at higher risk as you get older.

Neal: And obviously diet, exercise, lifestyle plays a large factor in I guess prevention and in control. But is there a genetic factor involved or is this just a shotgun type of disease that’s going to affect who it’s going to affect and not really any specifics?

Dr Maddux: There are some people who are more risk for kidney disease because of some genetic factors. But again in the United States, the most common cause of kidney disease is related to diabetes and high blood pressure and cardiovascular disease. So exactly what you’re saying about diet and exercise is really important for protecting your kidneys.

Neal: Now March is Kidney Awareness Month. Sam, I understand that you’ve you’ve started an initiative, an awareness effort. Talk about this if you would.

Sam: Well I just want people to know that there are plenty of options out there for treatment of kidney disease. Home dialysis really being one of the best next to transplant. And we’re here to tell people that they can take control of their lives and live a normal life with kidney disease.

Neal: Now are you employing home dialysis as a management tactic now Sam?

Sam: Actually I’m transplanted now and things are going well. Hopefully, I will not have to deal with that in the future but if people have extra questions and need extra information, they can go to freseniuskidneycare.com and they can take a quiz and figure out what’s the best option and the best method of maintaining their health is.

Neal: Dr. Maddux, when a person undergoes a transplant, is dialysis out of the picture for the rest of their life? Is that a possibility even with a transplant and does home dialysis, is that something that a patient can actually do on their own with little or no supervision? And once they do that, will they prevent a transplant?

Dr Maddux: Yes. So no, we expect people like Sam may require different treatments at different times in their lives. So while you have a functioning kidney transplant, you don’t need dialysis but dialysis is always an option before a kidney transplant or if a kidney transplant fails. So there’s a lot of information about treatment online and people can really empower themselves and get a lot of control by talking to their care provider or going online and freseniuskidneycare.com has great amount of information about learning about kidney transplant and learning a lot about home dialysis which gives patients a lot of independence.

Neal: Well I thank you both for joining us here on the program today Dr. Dugan Maddox and Sam Trevino. It’s been a pleasure, thank you both.

Dr Maddux: Thank you.

Sam: Thank you.

Neal: You’ve been listening to Health Professional Radio, I’m your host Neal Howard. Transcripts and audio of this program are available at hpr.fm and healthprofessionalradio.com.au

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