The Kidney Collective: "Our Voices Need to Be Heard"

Malkia White: I had to adapt. There was I had no other choice because I wanted to live. There's a legacy that I want to leave on this earth.

LaVarne Burton: Hello, I'm LaVarne Burton.

Tamara Ruggiero: I'm Tamara Ruggiero.

Mike Spigler: And I'm Mike Spigler.

LaVarne Burton: Welcome to season two of the American Kidney Fund's Podcast, The Kidney Collective, which gives an intimate voice to the many facets of living with kidney disease.

Tamara Ruggiero: Our theme for this season is Rare Voices, Relatable Stories.

Mike Spigler: Over the next few months, we'll be talking about rare kidney diseases and explore the shared experiences that connect the entire kidney community.

LaVarne Burton: Join us for these candid conversations that offer both information and inspiration.

Tamara Ruggiero: Welcome everyone. We're really looking forward to our conversation today with Malkia White. Malkia is one of our AKF ambassadors and a member of our Rare Kidney Disease Action Network. She's here today to talk with us about her lifetime journey living with kidney disease, searching for a transplant, and in particular having IgA nephropathy. IgA nephropathy causes your immune system to produce antibodies in your kidneys, causing harmful inflammation and damaging the kidneys in the process. And over time, this damage can lead to kidney disease or kidney failure. Welcome to The Kidney Collective, Malkia.

Malkia White: Thank you very much. It's nice to be here.

Mike Spigler: Malkia, you were so very young when you were first diagnosed with IgA nephropathy. And you know, having two kids, myself and being a child that had a lot of health problems when I was little, I mean, even taking cough syrup is something that seems very daunting when you're six, right? So, you know, how do, how were you, tell us a little bit about how you were diagnosed and what that was like and you know, what symptoms you were having, and more so kind of, you know, what were you feeling if you remember at six being told you have this disease that was probably almost impossible to pronounce at the time.

Malkia White: Right. When I was diagnosed, my pediatrician noticed through a routine urine test that blood and protein was there, and she referred me to St. Louis Children's Hospital. The renal clinic physician said, You have Berger's disease, and we don't know much about it. That's the conversation I remember. I'm sure he said other things, and my parents were there to listen. And I didn't have any pain, no nothing. My mother was concerned that maybe I bumped into something or may have been violated, but there were no symptoms that I experienced whatsoever.

Mike Spigler: Do you remember kind of what you were thinking when that happened? I mean, were you able to take in kind of what it meant in in the long term, you know, for you?

Malkia White: I didn't know what it meant in the long term. And because it was the early 80s, we didn't have access to an internet. They were just encyclopedia sets and landline phones, and it never really occurred to my parents, I can't say me, to investigate medical journals to learn more about Berger's disease. I just remember trusting the doctor when he said, This is what you have, and we'll take care of you. And my hospital is world-renowned, so I was trusting.

Tamara Ruggiero: Yeah, it was such a different time back then. We didn't have these res- we didn't have the internet, obviously. We had, like you said, encyclopedias to find information, and um you trusted in your doctor to to give you the information you needed and to take care of you. And it sounds like from if I'm understanding your story correctly, it sounds like you had good medical care um throughout your childhood and your young adulthood. Is that is that correct?

Malkia White: I had excellent care from childhood up until college, those four years in college, we'll just say the Lord kept me. But yeah, excellent care, excellent health care providers. The one negative aspect of this journey was that no health care provider after I left the renal clinic at St. Louis Children's Hospital, no one said this might lead to dialysis and your need for kidney transplant. Um so as I matured, I kept calling my disease Berger's disease, not knowing that it was now being called IgA nephropathy.

Mike Spigler: You know, and now there's so much work being done with IgA nephropathy now and advancements. Uh fast forward just a little bit. I mean, at the time when you were told that you need dialysis or a transplant, did you even know kind of what those things entailed? Did you have kidney disease in your family or were you around it at all?

Malkia White: I am the rare relative. There was nobody in my family that had kidney disease. I was not aware of dialysis. I didn't even know there were two options, hemo and peritoneal. Um, all I knew is when the doctor said renal failure, that equated to death. That's all I knew. And within seconds, I said, Well, I want to live. What is it that I have to do next? So I I had no clue what was going to happen.

Tamara Ruggiero: And this happened, so when we were talking a little bit before the show, you mentioned that you had gone to your doctor because you had the flu, I think, right? And so you were diagnosed very unexpectedly with kidney failure.

Malkia White: Yes. Um, I ended up getting the flu, like you said, and the doctor gave me antibiotics and took some labs, and then I ended up getting a voicemail message from her to come into the office. So that's always alarming. Went into the office and she said, You should be on dialysis right now. Your kidney function is 12%. So, I was definitely in in shock, um, probably a bit traumatized. And I just kicked it in high gear to find a nephrologist to treat me and figure out what I need to do next to to live.

Mike Spigler: Yeah. And I really wish that your case was was was rare, but that happens to so many people is they they go to the doctor and you know, in your case you actually had the flu, but a lot of people have like these flu-like symptoms, you know, where they're nauseous and cramping and feeling those things, and they go to the emergency department and they're told, you know, they have kidney failure. So how did you adapt to that? How did you kind of uh mentally make that switch to thinking about like, well, how what do I do next? I mean, how is this going to take up time from you know my job and everything else? How did you adapt to all of that?

Malkia White: I just had a strong will to live. I knew that I was not ready to die. I thought there were many milestones that I had yet to achieve. I never grieved the loss of my kidney health. I was so busy researching chronic kidney disease, transplantation, dialysis treatments, the importance of organ donation. I had to adapt. There was I had no other choice because I wanted to live. There's a legacy that I want to leave on this earth, and I did what I had to do. Fortunately, I had understanding employers. I let them know what was going on with my health, and they were very understanding. But I had the strength to work full-time, eight hours plus Monday through Friday, and go to dialysis sessions three nights a week for six hours from 9 p.m. till about three. So, you know, it was it was just this inner will to live.

Mike Spigler: Yeah. And if anyone's listening and has not been to dialysis center before, it's not the kind of place where you're taking a nice long nap between that 9 p.m. to 3 a.m. time frame with machines beeping and going off. So congratulations for you for enduring through that and moving forward and working full time. I really loved, I was reading your blog that you did for us before we we were having the interview today. And I loved, it was loved maybe not the right word, but it was very poignant what you said about being sick, but really kind of externally being the picture of health. So it's hard to convey kind of what you're going through. Can you talk a little bit about you know what that was like and and how to try to explain to people like I'm really sick and and you're seeing me kind of persevere?

Malkia White: Well, you know, I was not keeping my disease a secret, but that topic of conversation just doesn't come up normally. Um when I did learn that I was going to be on dialysis and needed to have a transplant, first I informed my family and friends who I referred to as my village, and I wanted to do it in person. We had a gathering Christmas time, and about 30 or so people came over to the house, and there was a moment that I said, Y'all, um, I have a kidney disease. I've had it since I was young. Um, this is what is happening, and I need a donor. It was important for me to let my village know in person rather than on social media because what was happening in my life was this is either I survive this or I die. This is serious, I can't keep this a secret. And because you're so dear to me, I want you to know personally that I need help. I need to survive, and I would love for you to consider being my donor, but if you can't, please share this information with someone else that you know.

Tamara Ruggiero: I think you, in addition to sharing it with your circle of people, you went broader too, right? You you took your plea for a kidney to social media, um, you know, outside of people you knew. Can you talk about that? How'd you go about that and what was that like?

Malkia White: I created, founded a hashtag #ThatGirlNeedsAKidney on Facebook. I can't remember exactly how I came up with the name, but I will say that a favorite song of mine by Stevie Wonder is That Girl. And sometimes I refer to myself as That Girl. And we know that I needed a kidney, so #ThatGirlNeedsAKidney just made sense. I launched it uh during uh March of 2018, so it was aligned with Kidney Awareness Month. I've been attending a support group at Medstar Georgetown Transplant Institute, and they were in-person meetings, this is pre-COVID, and many of the members, patients, told me, you know, go on social media, get bumper stickers, get t-shirts. They were encouraging me to with helpful hints on how to get this preemptive transplant. Social media, you know, was popular. I'm a bit tech savvy, but I have more tech savvy friends that I reached out to and said, This is what I want to do. Can you help me? And uh so that's how I ended up informing the World Wide Web about my need for a kidney. I was actually, you know, looking for a living donor. I ended up not finding a living donor, but a handful of people did start the process, did not finish due to medical or personal reasons. But the internet has such a far reach, and again, I wanted to live, so I was willing to do anything positive to make people aware of my health condition.

Tamara Ruggiero: Yeah. And so you were in the middle of this search for a living donor, and then I assume you got the call that a kidney was available from a deceased donor. Is that is that what happened? And talk to us about what that was like when you got that phone call.

Malkia White: When I got the call, it was about 4 a.m. It's a couple of days after Thanksgiving, I was eating Thanksgiving leftovers at around two o'clock in the morning and watching Netflix. So I think I ended up going to sleep in between 2:30 and 3 a.m. And uh my phone rang. And anybody that knows me knows that I have these phone rules. So don't call me after 10 p.m. And most certainly don't call me at 4. So the phone rings, and I said, I don't know who this is, but I'm going to sleep. I just, you know, I've only been asleep for an hour. I'm still tired. I'm not answering this. A few minutes later, the phone rings again. And I had this same conversation. I'm not answering this. And as soon as the phone stopped ringing, I said, you know what? That could be the transplant center. And I said, Well, they'll call my mom. So that's what they did. They called um my mom and my dad. And my parents came downstairs to my bedroom and said, This is this is your transplant coordinator. Talk to her now. So she says to me, We have a kidney for you. Can you be here at um 5:30? And I was like, uh, I can be there at 5. So I already had my uh to go bag packed. I'd had that uh prepared for what three plus years. And um the hospital is uh less than 40 minutes from the house, and at 4 a.m., there's no traffic. So we were there uh before 5:30, and I was um in surgery, I believe, by 10 a.m.

Mike Spigler: There must have been quite a change of perspective from like a middle of the night kind of phone call rage of who's calling me to getting the call you've been waiting for for three years.

Tamara Ruggiero: When you woke up from surgery, was the transplant successful immediately? Were you was the kidney immediately making urine, or what was that like when you woke up?

Malkia White: Actually, I was transplanted twice. That's what the um doctors told me. They put the kidney in, had to take the kidney out because a vascular surgeon had to repair something. After that repair, they put the transplanted kidney in, and everything seemed to be fine. The next morning, of course, they tried to get you to walk, and that was horrible. Um, there was this tiny little nurse trying to help me out of bed and onto a scale. All was good, however, um I ended up being discharged uh after a ten-day stay. I did get a blood clot while I was there at the hospital and that had to be removed. There was one day that I was totally nauseous with, you know, staples there at your abdomen. The pain is uh just indescribable. I wouldn't want anybody to experience that. So ten days was longer than what the literature said when I was researching about uh surgery, and my road to recovery was eventful. I actually had to come back to the hospital right before the new year. I had a a leakage from the stent, and that had to be repaired, and I had a nephrostomy tube attached to me for another seven months, and uh in July of 2022 uh I was actually able to pee on my own. It was trying. Um the journey never seems to end. Um, I've had other procedures since transplant. I will report that today my transplanted kidney function is great, and I am feeling wonderful.

Mike Spigler: Malkia, you know, there's probably some some people listening to this podcast right now that have just been diagnosed, or the loved ones just been diagnosed with IGA nephropathy, and AKF has a lot of information on its website. We have a campaign a step ahead of IgA nephropathy, and uh you can go to that page and find out links to some of our partners like the IGA Nephropathy Foundation, they have a registry. And um, but you know, for someone that that is new to this diagnosis and and you know, for everything that you've been through, what have you learned about IgA nephropathy that you wish you that you had known earlier?

Malkia White: I wish I had known that the disease could recur. Um it was only through my research and wanting to learn more about the disease that I learned that the disease could come back resurfaced. So that was quite a surprise.

Mike Spigler: Have you met other people with IgA nephropathy?

Malkia White: I have met others with IgA nephropathy. The IgA nephropathy Foundation, I am an ambassador for that organization. So I have a whole new set of family members. Um, but I didn't meet anyone with IgA nephropathy until actually an employee of that foundation found me on Instagram and she DM'd me. And that's how I became connected with the foundation. So up until I wasn't, you know, I was in my 40s when I actually met another patient with the disease.

Tamara Ruggiero: What was it like to, because I think that's such a common experience when you're living with a rare disease like IgA nephropathy, you're not necessarily connecting with other people who have the same condition. What was it like to finally connect with someone who had that shared experience?

Malkia White: It was amazing, actually. Finding the foundation was a relief, really, because I could talk to others who knew what what this struggle was, what the the weighting and some of the symptoms that I did experience was fatigue and leg cramps, night sweats. It was just a good feeling to connect with a whole new population where it was safe to discuss what was going on with our bodies, discussing our journeys. And I learned, you know, that about some of the complications of the disease that I never experienced. It was just a nice feeling to connect with others that, you know, I could talk to, love on, you know, hug on, and be encouraged by them and their stories.

Mike Spigler: Well, but just as you have benefited from from, I think, getting that reciprocation from them, someone that's lived it, you are doing so much to help others as well. I mean, you've participated in our Kidney Action Summits, which is when we go to Capitol Hill and talk to legislators about policies and bills that would benefit the kidney community. You've participated in our Rare Kidney Disease Action Network. So that's a group of ambassadors that have a rare kidney disease. Participated in our Unknown Causes of Kidney Disease Summit because that's kind of all tied together, is important things that we're doing. You know, why do you think it's important to do that? Why do you think it's important to speak up on behalf of the rare disease community?

Malkia White: It's so very important to speak up for the rare disease community because our voices need to be heard. Those who are not aware of these kind of advocacy opportunities, I get to be the voice for them. Those who are not physically able to travel to Capitol Hill and share their stories. It's just an opportunity to let policymakers know that this disease has no cure. Patients are in a life and death situation. And it's a story of survival. I you know share statistics with the policymakers or their staff members. Um but it's just an opportunity to let folks know that this illness has no face or look to it. You to look like the picture of health, but you have no idea that the patient might be struggling with low blood pressure, high blood pressure, dizziness, leg cramps, a variety of symptoms, including anxiety and depression. And I also make it a point to ask the people that I'm speaking with, are you a registered donor? Because you have an opportunity to encourage folks and to save save someone's life.

Tamara Ruggiero: It's great that you never miss an opportunity to ask people that question because, like you said, it's a life-saving opportunity for people. In the last couple of years, there's been a lot of progress made regarding uh development of therapies for IgA nephropathy. How closely have you been following the research and and can you speak a little bit about your hopes for the future in terms of treatments for IgA nephropathy?

Malkia White: Although I did receive a transplant, I am still active learning everything I can about kidney disease and especially IgAN. Um so, yes, I'm keeping up with the treatments that have been approved for IgAN patients. I just wish, you know, that was available in the 80s, but I'm so very glad that they they are available now. What I hope for is a cure. That would be wonderful to have a cure for this disease. Again, although I was encouraged, very encouraged, along my journey and still encouraged, this is a difficult disease to to live with. But I've had the help of again my village and medical providers, especially a therapist. I look forward to great things in the future for IgAN patients.

Mike Spigler: So, and I think for those that we can put put this in the show notes too. If anyone's looking for what new innovations are coming out, we have a great innovations page on our website. So as new therapies come out for IgA nephropathy or otherwise, we'll you'll be the first to hear it on that website. So we'll add that to the show notes as well. Malkia, as we are about to wrap here, you know, someone has found this podcast and they're listening. And um, what's the one kind of takeaway that you wish people understood about kidney diseases or rare kidney diseases or IgA nephropathy?

Malkia White: It is a silent disease. And again, I will emphasize there's no look to rare kidney disease, chronic kidney disease, or IgA nephropathy. This is my own theory, but I believe that the public thinks you should look poorly or sickly, like you're on the brink of death when you have this disease. And that's not the case. I look like the picture of health, but my kidney function was 8%, and and continued to decrease. Don't look for the illness. Just ask how the person is doing, how they're dealing with the illness, how they're processing. Kind words and encouragement and hopeful statements go a long way on this journey.

Tamara Ruggiero: Well, Malkia, we can't thank you enough for being here with us on the Kidney Collective. Um, it's been a great conversation, and I know that um everybody who's watching and listening is really going to benefit from hearing your words of wisdom and learning about your story. So thank you.

Malkia White: Thank you very much.

Tamara Ruggiero: We'd like to thank Vertex Pharmaceuticals, sponsor of AKF's A Step Ahead of IGAN campaign, for supporting this episode. To explore the topics we discussed in this episode, go to the episode show notes on your podcast listening platform, or go to kidneyfund.org /podcast. If you haven't already, be sure to subscribe or follow the kidney collective wherever you get your podcasts, and leave us a like or review to help us reach more members of the kidney community.

Mike Spigler: You can also follow AKF on all major social media platforms, including Facebook, Instagram, TikTok, BlueSky, LinkedIn, YouTube, Twitter/X, or whatever comes next. Join us next time. Remember that even in the toughest moments, there's hope ahead, and The Kidney Collective and AKF are here for you now.