The Kidney Collective

S2E4: "Our Voices Need to Be Heard", IgAN with Malkia White

• American Kidney Fund • Season 2 • Episode 4

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Malkia White, an AKF Ambassador and member of AKF's Rare Kidney Disease Action Network (RKDAN), joins this episode of The Kidney Collective™ to talk with our co-hosts Tamara Ruggiero and Mike Spigler about her journey living with IgA nephropathy (IgAN). Malkia shares how she was diagnosed with "Berger's disease" (what IgAN was previously called) as a child but did not understand her disease until adulthood. After learning she was in kidney failure, she did extensive research on the subject and became a vocal advocate for herself and others.

She explains how her strong will to live and to fight to survive helped her persevere through the challenges of dialysis and waiting for a kidney transplant. She also tells Tamara and Mike how she started her social media campaign #ThatGirlNeedsAKidney while leaning on her village through it all, including family, friends and members of the rare kidney disease community. She emphasizes that "this illness has no face or look to it," and someone may look like the "picture of health" when they are struggling.  

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Introduction to The Collective

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.

Introducing Malkia White

LaVarne Burton

LaVarne Burton

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.

Malkia's Diagnosis

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. Uh when I was diagnosed, uh 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 uh 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 uh to listen. And um I didn't have any pain, um, no nothing. Um my mother was concerned that maybe I bumped into something or uh may have been uh violated, um, but there were no no symptoms that I experienced whatsoever.

Mike Spigler

Do you remember kind of what you were thinking like 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 uh in the long term. And um because it was the early 80s, um 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 uh 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 uh my hospital is world-renowned, so um I 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 um from childhood up until college, those four years in college, uh we'll just say the Lord kept me. But yeah, excellent care, excellent health care providers. The one uh 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 I kept calling my disease Berger's disease, not knowing that it was now being called IgA nephropathy.

Kidney Failure and Dialysis

Mike Spigler

You know, and and now there you there's so much work being done with IgA nephropathy now and and um and advancements. Uh fast forward just a little bit. I mean, I guess, you know, when 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 we were when we were talking a little bit before the show, you were you mentioned that you had gone to your doctor because you had the flu, I think, right? And so you you were diagnosed very unexpectedly with kidney failure.

Malkia White

Yes. Um, I ended up getting the flu, like you said, and um 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 um, I was definitely in in shock, um, probably a bit traumatized. Um, 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 um loss of my kidney health. I was so busy researching chronic kidney disease, transplantation, uh 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 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, um, 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 I really loved, I was reading your blog that you did for us uh 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 uh externally being the picture of health. So it's 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?

#ThatGirlNeedsAKidney Campaign and Finding a Donor

Malkia White

Well, um, 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 my family and friends uh who I referred to as my village, and I wanted to do it in person. We had a a gathering Christmas time, and about 30 or so people um 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 I need a 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 uh personally that I need help. I 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 #ThatGirl Needs A Kidney on Facebook, 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 #That Girl Needs A Kidney just made sense. I launched it uh during uh March of 2018, so it was aligned with uh Kidney Awareness Month. I've been attending a support group at uh Medstar Georgetown Transplant Institute, and they were in-person meetings, this is pre-COVID, and many of the members, uh patients, uh 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. Um, I'm a bit tech savvy, um, but I have uh tech savvy, 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 uh my need for a kidney. Um I was actually, you know, looking for a living donor. I um ended up not finding a living donor, but um a handful of people did start the process, did not finish due to medical or personal reasons. But um the internet has such a far reach, and again, I I wanted to live, so I was willing to do um anything positive to make people aware of my health condition.

Getting the Call, Transplant Surgery and Recovery

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.

Tamara Ruggiero

No, no.

Speaker 3

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.

Malkia White

Right.

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

Advocating for and with the IgAN Community

Malkia White

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 had known to earl- that you had known earlier?

Malkia White

I wish I had known that the disease could recur. Um it was only through my uh research and want wanting to learn more about the disease that I learned that the disease could come back resurfaced. Um 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 um IgA nephropathy Foundation, I am an ambassador for that um organization. So I have a whole new set of uh 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 um 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 um because I think that's uh 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, um, because I could talk to others who knew what what this struggle was, what the the weighting and the um 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. I'm 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. Um, 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 I get to be the voice for them. Those who 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 um staff members. Um but it 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.

Research and Hope for the Future

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 uh 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 um 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, uh, 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 uh 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 uh kidney diseases or IgA nephropathy?

Malkia White

It is a silent disease. And again, I will emphasize there's no look to um rare kidney disease, chronic kidney disease, um, or IgA nephropathy. This is my own theory, but I believe that the public thinks you should look poorly or sickly, uh, 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, Blue Sky, 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.