Podcast – A Patient’s Perspective on Kidney Care

In this episode of Kidney Health Connections, Dr. George Hart speaks with Alex Berrios, a long-time kidney disease patient and advocate, about his journey navigating the challenges of chronic kidney disease, dialysis, and transplantation. Alex candidly discusses the physical, emotional, and logistical hurdles of managing his condition, as well as the critical role of family and community support. He also shares his ongoing efforts to secure a second kidney transplant, including participating in clinical trials and exploring innovative solutions like xenotransplantation.

As a patient support coordinator at Interwell Health, Alex discusses how he uses his lived experience to connect with and support other kidney patients. He emphasizes the importance of patient education and ensuring that patients feel heard and understood. 

Transcript:

Introduction: A patient’s journey with kidney disease

Dr. George Hart: Well, hello everyone and welcome to Kidney Health Connections, a podcast focused on important topics related to kidney-centered value-based care. On our final episode from last year, we met with my good friend Jennifer Huneycutt, who reminded us that we should focus on delivering our very best care for patients and to not forget the importance of individual patient journeys. Well, today we're going to dive even deeper into what it means to experience kidney disease and its various treatments.

Our guest today is Alex Berrios. Alex has agreed to share his story, which now covers nearly 20 years of living with kidney disease. Alex also happens to be a member of the Interwell family going back many years, and he's now working to help patients realize the benefits of value-based care.

Alex, welcome to Kidney Health Connections and thank you so much for joining us today.

 

Discovering kidney disease: Crashing into dialysis

Alex Berrios: Thank you Dr. Hart. I really do appreciate you giving me this platform.

In my 20s, we found out I was only born with one kidney. And that one kidney was—in essence was failing, and I was going to need dialysis pretty immediately. The term crashing into dialysis—I was definitely one of those candidates where I had to deal with what dialysis is and didn't have a chance to really like tour the facility, and no one gave me options at the time about dialysis, even though there's different modalities of it. And so unfortunately, I had to do it to save my life. So that's the beginning of my story is there.

I was fortunate enough, after 18 months on in-center hemodialysis, I was able to receive a living kidney donor from a lady I went to church with and happened to—she was sitting behind me in the pew, and she said I want to test for you to see if I can be a match. And after about probably three—she did it within three months of when she told me she was going to do the testing—in June of 2007, I was fortunate enough to receive my first kidney and had the opportunity to it last for 13 good years.

Unfortunately, I started having some of my levels come back kind of not great and a little on the tough side to deal with like, you know, having a GFR and having my creatinine both just not in the right place. And so, in July of 2020 my nephrologist told me, “It's time that you're going to have to start dialysis again.”

So that was July of 2020, and I did peritoneal dialysis, because at that point, in that 13 years, I did some research, and really took to it that I wanted to make sure that I had options in front of me. And I didn't—at the first time, that first go around, nobody in my team of my doctors told me that I had options at the time, back in 2007. And so in 2020, I knew I was going to at least investigate and try any different modality than I had tried previously.

So I did peritoneal dialysis for about a year. I ended up getting a bout of peritonitis because I just wasn't taking care of myself. So I was in the hospital with peritonitis, and then found out that I was allergic to vancomycin. And so that caused me to get sickly some more. And they were like, “We need to pull the PD catheter,” and that I would have to start dialysis in-center pretty immediately. So that's kind of where I was.

 

Using personal experience to support patients with kidney disease

Dr. George Hart: I mean, that's quite the story, Alex. And you have lived through just about all the variables that come into play for kidney disease. Like many of our patients, you found out late, by your own admission crashed into dialysis, had to deal with all of that transition. And, you know, you've had the highs of getting a kidney transplant, the challenges of when one fails, various modalities.

You know, I can only imagine how that colors how you communicate with the patients that you talk to today. And we're so lucky here at Interwell to have someone like you who can bring that experience and to communicate to patients and help enroll them and help them understand. Maybe you can share a little bit on what you're hearing from patients as you communicate with them and have this sort of intake process.

Alex Berrios: So I would say that the patients, when I speak with them on the telephone, they would tell me that they were feeling like they weren't being heard, or that their voices weren't being—it wasn't magnified enough for them to be able to feel like they had options with different modalities, for example.

And so I think, with the phone calls I have, and the struggles I think I hear them say, you know, I tell them a lot of times, “Yes, you know, I understand that you're dealing with this new diagnosis of dialysis, but it's not a death sentence, by any means. It is hard, and very challenging on your body, and it can do a lot of challenging things to your family dynamic and things of that nature, but it's there for a reason, and it's there to help you kind of get through your journey.”

And so I think being able to kind of share with them that I'm also on dialysis, I've had many patients tell me, “Oh, really?” when I tell them. And so it's really, I think they enjoy the fact that we're not just a company that, you know, is trying to say, “Okay, you need this program and this service.”

I've been fortunate to be able to be with Interwell now five years, almost five years now, it'll be in October for me. And the teams I've been a part of, between enrollment and now with member support, they've all, both teams have been so supportive of seeing me succeed and giving me the opportunity to look at my work schedule and know that when I have tough days of dialysis—because they do happen—that I'm able to pivot and kind of, you know, make my schedule accordingly. So that's been a blessing, so much, to what Interwell has been able to do for me while I work and do dialysis while I wait for that next kidney.

 

Balancing dialysis, work, and family life

Dr. George Hart: I think it would be helpful for everybody here to get a real sense of how you balance all this. I know you dialyzed before you actually came and did our podcast today. So what does a typical day look like?

Alex Berrios: So a typical day for me, on dialysis days, are Monday, Wednesdays and Fridays. I usually get up about 4:45 in the morning and drive. Luckily, my clinic is only about 10 minutes away at this early in the morning, so I'm able to get there pretty quickly. And so I dialyze, my chair time is at like 5:15 in the morning, and I run about three hours and 30 minutes, is how long my treatment is. So I'm done about you know, 8:45, 9 o’clock or so on my dialysis days.

And I've been fortunate enough with Interwell, with my schedule, to be able to kind of get some rest before I start my shift. So on my dialysis days, I work, I'm fortunately able to work about five and a half hours; I work about lunchtime from noon to about 5:30. And then on my non-dialysis days, Tuesdays and Thursdays, I work a full eight-hour day, with breaks and lunches and all that.

And so it's been a really good balance of being able to adjust my schedule. When I have tough times, my managers have been super supportive, and understand and give me that opportunity to take that early break, to not have to come right from dialysis right to work, that I get a couple of hours of food or rest whenever I see fit at that time before I start the shift.

 

Managing peritoneal dialysis and parenthood

Dr. George Hart: So, Alex, how does that compare to when you were performing your own peritoneal dialysis? Maybe walk this audience through practically what does that look like?

Alex Berrios: So doing my peritoneal dialysis, in the beginning, I was doing what we call the manuals and I was able to take the break in between to stop for a few minutes and do what I needed to do.

Toward the end of my time with PD, I was able to do it on what they call a cycler and do it at nighttime. So I'd have to be asleep by like 8:30, or in the bed by 8 or 8:30, to run nine solid hours consistently.

Dr. George Hart: So, Alex, when you did CAPD, or chronic ambulatory peritoneal dialysis, what you were really saying is that you had to stop several times during the course of the day, create sterile technique, do your exchange, go back. And then the cycling, you were free during the day, and then connected yourself at night. How'd you sleep?

Alex Berrios: I did not. Using the cycler for me was such a challenge, and unfortunately, my young, my son at the time was only like, was he seven? Six or seven. And so, I had to make sure that when I did the cycler, that I had to be up in time to bring him to school. So that was always a struggle. I'd have to be, you know, to run nine hours, I had to sometimes be in my bed ready to connect myself by like 7:30, so that the next morning I’m done on the machine, off of it, to bring him to school.

Dr. George Hart: So the job of being a dad didn't stop, did it?

Alex Berrios: Correct, correct, exactly. It was tough.

The role of value-based care in supporting patients with kidney disease

Dr. George Hart: So, Alex, you have a unique vantage point. I mean, value-based care is all about, you know, how can we put our arms around patients and help them navigate this journey and improve the patient experience while keeping them out of the hospital. What are some of the things that you feel like we're getting right with this transition into value-based care?

Alex Berrios: So I would say Interwell is definitely doing a wonderful job with really making sure and talking to the clinicians and the nurses we have, and the other staff members—our social workers, and our nurses, and dietitians—those things are wonderful. That's definitely a big win. And the fact that patients are always looking at food; food has been a big conversation starter, because they don't know what to eat. And so having our dietitians, that's definitely great, and that's something that I think we can continue to do.

 

The importance of family and community in kidney care

Dr. George Hart: Obviously this journey is very impactful for you, but not just you. You've had a wife, you have a partner today, you have children. Can you shed some light on the journey that your family has gone through with trying to support you through all this?

Alex Berrios: Thank you, George. Definitely. My family has been such a rock for me. So, to give you a little background, I have a partner. We've been together almost 10 years now after my divorce. I have two kiddos; I have a 14-year-old daughter and my son.

So they've been a wonderful support, and a phone call away if I'm having a tough time. Like I drive myself to dialysis, but if in the event I have a really bad, you know, cramping session or my blood pressure decides to drop and I can't get in the car to drive home, she's able to be available to pick me up pretty quickly.

My family has been, like I said, such a rock—my day-to-day family that I live with, but also my family of origin, like my mother and my dad. They live in different places—one lives in Connecticut, the other lives in Atlanta, Georgia—but they are very supportive as well, from afar, and then are able to visit when, you know, on a notice, if Tamira can't do something in that moment. I've had my father drive up from Georgia, not very far from where I am in Louisville.

It definitely takes a village—and it's been, I've been blessed. I've been very blessed to have what I have, and I know I'm always appreciative and sharing with them that I don't know if I could do this by myself. And it takes villages is so true.

 

Overcoming barriers to a second kidney transplant

Dr. George Hart: I think it's really important for this audience to hear what you just said, and gain that understanding that it's just not you that goes through this, that everybody's impacted. And we need to make sure that as we help you or other individuals go through this, that we don't neglect the impact on family, and that we figure out what their needs are, and help support them as well.

You're waiting for a transplant. You're on several lists. You, like many who've had a previous failed transplant, have some implications of that in terms of sensitivity and such. Help everybody understand what you've had to do now to try and position yourself to get another kidney and what some of the obstacles are that you're facing.

Alex Berrios: So I would definitely say, in the five years from when my kidney failed in 2020, up until current, the way it is now, I knew that transplant was going to be a little bit more difficult for me because I have, like you mentioned, have these antibodies that are creating that much trouble to get me a new, second kidney. And so I have had to go through different hoops, and talking to these different centers, because unfortunately, where I live, there's not a protocol that helps with desensitization here locally for me. So I have to travel different places.

So I'm listed currently with three different centers, soon to be four: listed with the University of Kentucky, University of Cincinnati, and NYU in New York City, Langone Health. And so I've been working with all three of those centers periodically through the course of the last couple of years in a variety of ways.

And just recently, I'm looking at a fourth center in Chicago, on the south side. So I've been looking at them—that's kind of in a period right now where I'm waiting to get my case looked at through the committee, similar to the other three places I've been listed with. But it is not easy because it's on my dime to have to go to these other centers that are far away.

So I was in New York City in February of this year, was able to meet with the team there, Dr. Robert Montgomery, and some folks there. And he had stated to me that I would be a very good candidate for xenotransplantation. And that's where we're at right now.

 

Living with a kidney transplant: “I felt most like myself”

Dr. George Hart: So, Alex, let me get this straight, and let me try and frame this a little bit for our audience here. You have, at your own expense, traveled to four different transplant centers, one of which is at least a day's drive away in New York, spent your own money trying to pursue this, took six months of uprooting yourself, displacing yourself, and all that comes with that, in pursuit of another kidney transplant. It begs the question, and we didn't really get into this earlier, you must have felt tremendously better when you had a kidney.

Alex Berrios: I would say that 1,000%, George. Yeah, I would say I felt most like myself. I felt like I could kind of take on the world, and work, and kind of give back. I was able to hike, I was able to do the runs and the walks that some of the organizations had been doing.

I’ve been able to kind of work my way in learning about what is out there for patients. I try to be an advocate, the best advocate I can be. And I've done stuff—everything from learning about wearable, you know, innovation and wearable devices of dialysis; I've done stuff with the FDA where I've talked about medication regiment and the right drug, right time, right patient, and was able to do that. So I was able to do a lot of things and found in my pain of this disease my passion to advocate for patients.

 

Xenotransplantation: A new hope for patients with kidney disease

Dr. George Hart: I want to go back to this xenotransplant piece for a second because, as you know, and much of our audience has heard in the past, there's this huge waiting list. There's this discrepancy between the donor pool that's out there and the number of people that need an organ, and xenotransplantation offers yet another way to kind of close that gap.

And for anybody in the audience who doesn't really understand what a xenotransplant is, that would be receiving a kidney transplant from another species. And in this case, we're talking about specifically gene edited pig kidneys. And you know, New York is on the forefront of that, as are some other institutions. And only a small number of people have actually received these transplants to date.

 

The importance of listening to patients and families

Dr. George Hart: I think people would leave today's conversation with an increased empathy for what you and others have gone through and appreciate you sharing your story. Anything else? This is your chance to have a last parting shot to our audience today. Anything you'd like for them to leave with as they go forth?

Alex Berrios: I would say: listen to your patients, and also listen—something, George, you mentioned is—to the families too. I think sometimes as a patient you get so inundated with so much information thrown at you, that sometimes those caregivers and those families need just as much as their voice heard for their loved one. So I think it's very important to make sure that there is a—it takes a village, I mentioned that earlier—for families. And if you're fortunate enough to have a family to help you, please, you know, the clinicians and the docs and stuff, please listen to those patients. Listen to those families, please, and the patients, because it will go a long way in really giving a clear understanding as to what they're going through and what can be said.

 

Closing thoughts: Understanding what it’s like living with kidney disease

Dr. George Hart: Alex, I can't tell you how much I appreciate you joining us today and sharing your experience with kidney disease. We really don't hear enough about what it's like living with kidney disease and I think you gave us a really good insight into what you've been dealing with and what many of our other patients are dealing with as they sort out how their life intersects with kidney disease.

Listeners, I hope you've enjoyed hearing from Alex today. Please join us for more conversations on the future of kidney care by subscribing to Kidney Health Connections and visiting our website at interwellhealth.com.