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Health care executive and patient advocate Aja Best discusses her article, “How early CKD diagnosis can save lives: a transplant survivor’s journey.” She shares her harrowing personal experience with a delayed diagnosis of IgA nephropathy during pregnancy, which led to a challenging path through dialysis and ultimately to a life-saving kidney transplant. Aja highlights the often-silent progression of chronic kidney disease (CKD), a growing global health crisis, and points to critical gaps in the health care system that prevent timely intervention. The conversation explores the importance of early screening, proactive and coordinated care, the potential of technology and predictive analytics to improve patient outcomes, and the power of patient advocacy. Aja passionately calls for systemic changes and greater awareness to ensure others don’t face the same missed opportunities she did. The key takeaway is: Early CKD detection through routine screening and a more integrated, patient-centered health care approach can significantly alter disease progression, improve lives, and reduce the burden of this widespread condition.

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast. Today we welcome Aja Best. She’s a health care executive and patient advocate. Today’s KevinMD article is “How early chronic kidney disease diagnosis can save lives? A transplant survivor’s journey.” Aja, welcome to the show.

Aja Best: Thank you, Kevin.

Kevin Pho: Thank you so much. All right, so let’s briefly share your story and what led you to write your KevinMD article.

Aja Best: Currently, I’m a health care strategy consultant and a kidney patient advocate with a deep focus on equitable care and digital innovation. My work spans technical program management experience and value-based care, particularly in kidney disease, where I’m trying to help scale solutions that improve patient access and provider efficiency.

I’m also a transplant recipient, which is great. I was very lucky to have had that experience, and that lived experience has really shaped my advocacy work. I’ve worked with organizations like the National Kidney Foundation, where I currently serve on the Patient Advocacy Committee. I also work with the American Kidney Fund and other organizations to really advance education and early detection. I use platforms like KevinMD and other panel appearances to share stories that empower patients and really try to push for system-level change.

I was diagnosed in 2018 with IgAN through some scary post-pregnancy tests. I received a notification that I had proteinuria, or elevated protein in my urine, meaning it’s not filtering correctly. A biopsy indicated IgAN. After that, there was no real guidance or knowledge of how serious the condition was or what to do next. I crashed onto dialysis, which, for people who don’t know, crashing happens to a significant number of kidney disease patients. It means going into dialysis without knowing that it’s needed and without a proper plan in place: modality selection, things like that.

After being on dialysis for two years, I really took action, advocated for myself, and found a living non-related donor, which is incredible. I was on the transplant list but received a living donor, which is preferred. Living donor kidneys usually last longer, for people who don’t know. I received that surgery in November 2020, so this November will be five years. I’m very grateful, but we still have a lot of work to do. So, that’s what really drives my advocacy work and what led me to share my story and help other patients.

Kevin Pho: All right. In your story, you highlighted some systemic failures regarding that whole transplant experience. Tell us about that story.

Aja Best: When I was first diagnosed, it was post-biopsy. But the early warning signs came through an OB-GYN, right? I was learning about a disease that affects another organ through a provider for whom that’s not necessarily under their umbrella.

That wasn’t necessarily my OB-GYN’s primary concern because I was with child, right? They were focused on delivering the baby safely if I chose to continue with the pregnancy, which they advised me not to. I continued with the pregnancy and have a healthy nine-year-old. But I think the glaring gap for me was the coordination, or lack thereof, between an OB-GYN and a nephrologist. The complications that come with a pregnant person realizing after the fact that they have kidney disease are probably really hard to navigate, and there was no real coordination effort there. It was really a linear approach I saw from the providers.

It wasn’t really treated as urgently. I know our health care system is limited, but I didn’t really know what to do next or how extreme my circumstances were and how bad it was for my health. It was also very terrifying. The communication didn’t really seem patient-accessible. You have to use Google a lot to understand these terms that the clinicians are using because it seemed very clinician-language-heavy.

Kevin Pho: Now, did you also have another primary care physician who could oversee this, or was it just the OB who led you to see the nephrologist?

Aja Best: It was the OB who led me to see the nephrologist. There was no PCP incorporated, and I think if I wanted that type of oversight, that home base of a PCP managing me holistically, I probably would’ve had to do that on my own because it wasn’t something that was initiated by either provider at the time.

Kevin Pho: Tell us about your article in terms of the things that you advocate for to prevent a similar situation from happening to others.

Aja Best: The article was really personal. What inspired me was how long it took me to get diagnosed, the fact that I crashed into dialysis, and that I didn’t understand how serious it was until it was too late. It was a very terrifying, traumatizing experience.

I really wanted to bridge my story with the broader clinician gaps that I saw personally, and then also later on professionally, because I worked in the kidney care space for a value-based care company. I was seeing the gaps in the kidney care systems. It wasn’t really about blaming providers; it was about urging early screenings, clear communication, and real coordination. I felt it was a way to start a conversation that clinicians could actually hear from a patient who actually experienced it.

Kevin Pho: Now, what would you have liked to see differently in your ideal situation? In a perfect world, what would you have liked to see happen?

Aja Best: I think I would’ve liked to know how extreme the circumstances were in a prognosis, because at the time I was really just getting disseminated information like: “OK, you have chronic kidney disease, and you may need dialysis.” I didn’t know what those terms were.

I needed to know: What is the prognosis? What are my options? What is dialysis? What are the modalities? I needed some type of explanation that would give me a holistic view of the options and also how that affects one’s life. I wanted to hear things like: “We need to potentially try to slow your disease progression so that you can get things in order prior to going on dialysis.” Was dialysis always the path I needed to take, or was there an opportunity for me to slow disease progression to the point where I wouldn’t need RRT (renal replacement therapy)? What does CKD stage three mean in terms of the whole picture going to ESRD (end-stage renal disease)? How fast was my disease progressing or declining?

So, I needed a bigger picture, more understanding of options, communication about the prognosis, and really how it impacts everyday life.

Kevin Pho: Now give us a sense of the type of practice settings that you saw. Did you live in a rural area? Was it in a city with access to academic medical centers? Just give us a sense of the type of practice settings that you saw.

Aja Best: I was living in New York City at the time. These were huge practices. Again, they were really great providers. I think the gap was just the communication. I had a lot of access.

I was very fortunate. I didn’t live in a rural setting. My daughter was born at Mount Sinai, so six weeks after she was born, I was back at that hospital getting a biopsy, in between breastfeeding. Even with that incredible amount of access, I still didn’t really grasp the full picture of what I needed to do or to take action immediately. I really think it was an unintentional disconnect between me and the providers.

Kevin Pho: It sounded like even though you saw the nephrologist, they spoke to you in terminology that you still had to research yourself and Google.

Aja Best: Yes, absolutely. And maybe a lesser-informed patient wouldn’t do those things. Or someone who’s not interested in learning might think, “Oh, if something was serious, they would do something.” That’s the approach that we sometimes take: no news is good news. So, being scared and terrified, especially as a new mom, I felt I needed to be way more proactive and understand what these things actually mean.

Kevin Pho: Now, was there anyone who could guide you in terms of this journey? Like you said, there was no playbook, and you had to do a lot of the research yourself. Was there no one to guide you from the health care setting through this diagnosis?

Aja Best: No, not really. Everything was very reactive. My OB was focused on: “How are you doing?” I was managing, making sure that I didn’t have postpartum complications. I was managing all these things with motherhood. I was working—all of it. The holistic approach for the mother was not focused on kidney disease.

There are so many resources out there, some of which I participate in. There’s an NKF Peers program where you work with peers who have been in this situation and help guide a newer patient through this and navigate the systems. There’s an American Kidney Fund coach program that’s also something I’m a part of. So, there are resources to alleviate the burden on providers so that they can focus on their visits, and patient-centricity can lean on these nonprofit organizations.

Kevin Pho: In your article, you talk about some solutions that could break down some of these silos. Talk about some of the paths forward.

Aja Best: I think it’s patient-accessible language, better care coordination, and really listening to patients. Maybe we’re not clinicians, but oftentimes we can sense when something is wrong with our bodies. It’s about helping the patient participate in their care.

Machine learning technologies have come so far, so we should leverage them. This means taking technology and using it to detect patients early if they have kidney disease, leveraging risk stratification models and machine learning to target people who may be at risk, especially in our underserved communities.

Kevin Pho: What are some of the ways that we could screen for kidney disease?

Aja Best: Not to be a clinician, and I’ll leave it to you all, but a simple UACR (urine albumin-to-creatinine ratio), right? A urine test for proteinuria is an early sign of potential kidney disease. I’m not sure of the stats; I rely on my personal nephrologist’s understanding, but he says that eight times out of ten, it’s going to be something with kidney disease, whether it’s reversible or not. That’s a flag. So I think that’s probably a basic way to move forward.

And then looking at patients and listening to them, because sometimes it’s not textbook. Sometimes symptoms are atypical, so, really listening to them and relying on our providers to use their expertise and paint that picture. Patient-centricity is key.

Kevin Pho: Now, what about other patients who may find themselves in your situation? Perhaps they’re pregnant, they have protein in their urine. What kind of advice do you have for patients in order to better advocate for themselves?

Aja Best: Ask questions early and often. Participate in your care. Lean on your providers. No question is a dumb question. Communicate your symptoms thoroughly. Really try to understand what’s being presented to you. If you don’t understand, dive deep and follow up.

When I say lean on your providers, they are the experts. Sometimes there may be a gap in understanding. Lean on them; they’ll help you fill in that understanding because they have the information. So, really advocate for yourself in those spaces, do your checkups—you have to—and follow your provider’s instructions.

Because as my mom always said: “You’re either going to take vitamins, or you’re going to take medication.” So you have the power to be as preventative as possible. Hydrate and sunscreen are what I live by as well. We have to be good patients too.

Kevin Pho: Now, what about the role of second opinions? Did you run your story by other nephrologists or clinicians before ultimately going through a kidney transplant? What’s the role of second opinions from your viewpoint as a patient advocate?

Aja Best: I never really had any second opinions for myself personally, just because I would always do the research upfront regarding who is the best for this. For instance, when I was picking a transplant center, I looked at who does the most living transplants successfully in San Diego. So, I picked Sharp because they do the most living, versus Scripps, which does the most if you’re on a transplant list. People go there for deceased donors.

So second opinions didn’t really play that much for me because I’m always looking for the best upfront. However, I do think that it’s important to get a second opinion, especially if you’re not feeling heard or you’re not completely understanding and you don’t necessarily vibe with that clinician. It’s no offense to the clinician or anything like that; it may just not be a connection, and you don’t feel comfortable. So I think it’s important to find a clinician, whether it’s the first one or after multiple visits, where you can feel comfortable advocating for yourself, asking questions, and feel like you’re getting answers in a way that you understand.

Kevin Pho: So when you were researching transplant programs, you mentioned that you did research in terms of which programs did the most living donors. How did you know to do that? Were there patient forums that told you to search with those parameters? Tell us a little bit about that search process.

Aja Best: I knew that I wanted a living donor, and at the time, my brother was a match, and we were coordinating all of our care across the country. He was living in Charleston; I was living in New York, but I knew I wanted to end up back in San Diego. I coordinated everything with my work to move there, and I needed the support of my family back home in San Diego. So, since I knew I was going to do a living donor transplant, I thought, OK, which one does the most living donor transplants now?

Ultimately, my brother as my donor didn’t work out. It was actually a terrible story; I won’t bore you with the details, but my original transplant that was scheduled was declined the night before due to some clinical oversights, and I’m sure there’s some complexity to coordinating care across the country, labs, and things like that. So because of that, I went on to dialysis three weeks after that intended surgery.

At that point, I was looking at maybe listing with another center because I might have to go onto a list and get a deceased donor. I didn’t know anything about that. I just knew I wanted the best of the best care because after getting that diagnosis, which was such a surprise, I had become hypervigilant and really scared of everything. I was always looking for what’s the best care. So I figured, why not look at, OK, what’s the best transplant center? How do I know that? Well, which one does the best living donor transplants? Because that’s what I was intending.

Kevin Pho: We’re talking to Aja Best. She’s a health care executive and patient advocate. Today’s KevinMD article is “How early chronic kidney disease diagnosis can save lives? A transplant survivor’s journey.” Aja, let’s end with some takeaway messages that you want to leave with the KevinMD audience.

Aja Best: Early detection is possible. My story is preventable. Early detection and early screenings can save lives and preserve the quality of life for individuals. My story, I think, is a clear example of what can happen when early warning signs are missed or not caught early enough.

We can also see what’s possible with early intervention. Patients are not passive recipients of care or individuals to whom information is just disseminated; they should be considered partners in their care. When patients are empowered to ask questions, trust their instincts, and lean on their providers, they become active participants in their own health, which could lead to better clinical outcomes, medication adherence, et cetera.

When providers take the time to educate and engage with their patients, it creates this foundation of earlier diagnoses and stronger outcomes, and potentially fewer people crashing onto dialysis or avoiding RRT in general. I feel that with that, and the power of a story, we can change the trajectory of CKD one informed conversation at a time—in a PCP visit, a nephrology visit, or sometimes another type of provider’s visit. Any provider can catch CKD.

Kevin Pho: Aja, thank you so much for sharing your story, time, and insight, and thanks again for coming on the show.