Black Boomer Besties from Brooklyn
This is what the world needs now: two free-thinking “seasoned” Black women speaking their truth and inspiring others to do the same. Shaped by 45 years of friendship that began at the prestigious Brooklyn Technical High School through the Ivy League, medical school, marriages, divorces, triumphs, parenting queer children, life-threatening illness and many many amazing adventures. Each week, besties Leslie Osei-Tutu and Angella Fraser will push against boundaries in love, culture, careers, faith, politics and out-dated assumptions about women of a certain age. Remember, you’re never too old to change your mind…or your hair! (but more on that later :-)All views are our own and do not reflect the views of our institution/company. Information provided is not intended to serve as medical advice.
Black Boomer Besties from Brooklyn
Kidney Swap
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Did you know that 13 people die every day while waiting for a life-saving kidney transplant and that someone with end stage renal disease is added to a transplant list every 14 minutes? Prepare yourself for a poignant episode of where Leslie describes her family’s personal navigation through the organ transplant process when her 20 year old son developed renal failure. As a parent, she learned invaluable lessons about the mental health journey her son had to process through, not only the tangible physical ones. As a compassionate human being, she discovered that the general public is largely unaware of how they can be of help to these patients. The Besties hope that this episode will not only be educational and enlightening, but will also serve as a clarion call to consider becoming an organ donor.
References:
Ng, Y, et al. Does Racial Disparity in Kidney Transplant Wait-Listing Persist After Accounting for Social Determinants of Health? Transplantation. 2020 July 104(7): 1445-1455
National Kidney Foundation. Kidney.org
Donate Life America. Donatelife.net
United Network for Organ Sharing (UNOS), Unos.org
Visit Black Boomer Besties from Brooklyn website for behind-the-scenes extras.
Hey Les. Hey Ange. What's cooking? Good looking? Uh, just good looking as usual. All right. Okay. Long day. You've been working a lot.
SPEAKER_01Yeah. Yeah. I'm working a lot, but I'm lucky that I love my work.
SPEAKER_03So yeah. What are you working like a surf?
SPEAKER_01Yes, I am. But it's all good. Anywho, welcome to another episode of Black Boomer Besties from Brooklyn.
SPEAKER_04Brooklyn.
SPEAKER_01That's my girl. So we're starting out this episode in a good mood, and we're always in a good mood when we see each other and we're talking to each other and chatting. And you know, but the topic this week is somewhat serious. Somewhat. It's serious. It's okay. It's okay for it to be serious. It's it's serious. Okay. However, okay. Not only is it serious, but it's gonna sound like it's a medical topic, but that's not the takeaway that I want to convey.
SPEAKER_03Okay.
SPEAKER_01What is because it's gonna be pseudo-medicine, but I really want to get across the emotional part of it and the insight that I've taken away from the whole thing. I'm gonna talk to you all this episode about kidney disease, kidney failure, dialysis, and organ transplantation. Did you all know that one in three Americans are at risk for kidney disease? And that risk comes from things like diabetes, which is the number one cause of kidney problems and kidney failure, hypertension. Some people are born with diseases or inherited diseases, or they can acquire diseases and things like that. Now, I speak about kidney disease, and what that means is that the kidneys are not working properly, but they're still filtering. But 660,000 people in this country alone live with kidney failure.
unknownWow.
SPEAKER_01And when someone is in kidney failure, that means that their kidneys cannot filter the toxins from their bodies. So that's the difference between kidney disease and then kidney failure. And for people who are in kidney failure, right now there are a hundred thousand people waiting for life-saving organs, 87% of which are kidneys. So the vast majority of people in organ failure are waiting for kidneys.
SPEAKER_0387%?
SPEAKER_01Did you say that's like 90,000 people, Ange, are waiting for kidneys. Wow. Wow. I heard a statistic that six people die an hour waiting for a kidney.
SPEAKER_03Oh my god.
SPEAKER_01It's unbelievable.
SPEAKER_03Yeah.
SPEAKER_01The numbers are so can be so massive. According to a study that I saw, it was from 2020, and I'll put the reference in our podcast notes from a journal, uh, transplantation, that African Americans are four times more likely than whites to develop end-stage renal disease, and only half as likely to receive a transplant.
SPEAKER_04Wow.
SPEAKER_01What are the reasons for that? You may say, like, why is that? Well, this disparity exists in every it exists in every stage of that transplant process. So from the stage of being referred for a transplant to be evaluated for it when getting placed on the waiting list and then receiving a kidney transplant. So those disparities go across every stage of these processes. Wow. Some of the self-reported patients, African American patients, self-reports that they report more discrimination, they perceive racism in the whole process. And you know that medical mistrust in our communities are a lot higher than in with their white counterparts. He started having progressive kidney problems when he was just 23 years old. And my husband and I took him for evaluations and kidney biopsies and all of this. And eventually, he was diagnosed with a disease called collapsing glomerulopathy. It's a mouthful, abbreviated CG. So here, my 22-23-year-old son is diagnosed with this incurable idiopathic disease. And we're faced with what are we going to do right now? He was put on very high dose steroids to try to calm down this progression of the disease. But at this point, what CG does, it actually interferes with the, I'm trying not to be technical, but the Bowman's capsule on a cellular level in the kidneys.
SPEAKER_03Okay, now say that a different way.
SPEAKER_01So the filtration system of the kidney is whack.
SPEAKER_03Okay.
SPEAKER_02I just had to laugh at myself just now. It ain't acting right. Okay, got it.
SPEAKER_01You know, it's not the situation, you know, where if you go to a urologist because you have trouble peeing or something, and that's like a plumbing issue or whatever, Omari's is actually in the cellular level of the kidney itself. So he required dialysis starting when he was 26 years old. And as it turned out, he was on dialysis for six years. What I want to say right now is though, that when Omari was first diagnosed with CG, what I immediately forced myself to do is stop being a doctor and try to switch into the role of a parent only. Right, right. And I did this for Omari, but I also have to admit that I selfishly did it for myself because I was really afraid.
SPEAKER_04Yeah. Oh yes.
SPEAKER_00I was, as you can imagine, I almost lost him several years ago in the car accident.
SPEAKER_04Yeah.
SPEAKER_01And I remember praying to God that, you know, just let him live and I'll accept him and love him, of course, in any way that he comes back, you know.
SPEAKER_03I remember, I remember that prayer.
SPEAKER_01I'll take him anyway, you know.
SPEAKER_03Yeah, yeah.
SPEAKER_01So when this came, I didn't want to be a doctor anymore because I gotta admit I was afraid.
SPEAKER_04Yeah.
SPEAKER_01CG is not curable, it can be deadly. I didn't want to know those things. So I stopped reading about it completely.
unknownWow.
SPEAKER_01And being the internist that he is and the cerebral guy, he would contact the NIH, uh, National Institute of Health and find out was like release the hounds.
SPEAKER_03This goes hard. He goes so hard when he's trying to solve something.
SPEAKER_01He went all in, but he's not thinking that this is our son. This is not just, you know. Right, right. A case. So he is like contacting the NIH, like, what studies are going on, and what you know, clinical trials are there going on, and this and reading and then telling me all of these things. And I I want to say, I don't want to hear this.
SPEAKER_04Yeah, yeah.
SPEAKER_01All I want to hear is that this is gonna end in rainbows and unicorns if we just keep doing the right thing. And while he was on dialysis, we tried so many things. You know, this was when in our desperation, we banded it all together as a family. We tried social media. Remember, we did that campaign, Omari needs a kidney. I still have the t-shirt. I we, you know, we made up a bunch of t-shirts, we made a Facebook page, we put out telephone numbers, we put up signs. My husband and I took Omari to many transplant centers around in Philadelphia, in New Jersey, in New York, you know, try to try to get him listed to get a can uh a kidney.
SPEAKER_03And I know that there were, you know, the family was trying to offer kidneys, you know, our kidneys to be donated as well.
SPEAKER_02Yeah.
SPEAKER_01And and we tried so many things, but as it turned out, though, that Omari really was not a good candidate at that time for kidney transplant.
SPEAKER_03Yeah, I know when I went through the process of being evaluated, I'd gotten pretty far along. And then they they kind of stopped me because they said that, you know, Omari's really not showing signs of being ready to have um his transplant. And so they they put a pause on it. Yeah, that was that was difficult because I knew that he was struggling. So how old is he now?
SPEAKER_01At this point, Omari is 26.
SPEAKER_03And how what does dialysis mean? Like how often and for how long? Because I think that when you think about a 26-year-old and going to dialysis as frequently and for as long, it really puts into context what his life was like.
SPEAKER_01And it makes me sad that you asked that question in that way because I realize now that Ang, I was so clueless. I was in close communication with the dialysis centers, and they would just call us up and say he didn't show up. Omari needed to have dialysis three times a week for about four plus hours each session. And I would essentially just beg him, like, why don't you just do it like it's a job? Why don't you just go? It's just 12 hours a week. You know, just do your dialysis. It's like, do you want to die? Are you trying to kill yourself? And here I am, like throwing the medicine part about it. Like, are you depressed? Are you suicidal? Do you need therapy? We can get you therapy. We can, you know what I mean? It's I had no idea until talking to him that it's okay, Larson.
SPEAKER_00Like a 26-year-old person, he's always the youngest person there. Yeah, he's sitting there with people who are 70 and 80 years old who've lost limbs from diet from diabetes. You know, he's in a relationship and his skin looks different, yeah, his energy level is different.
SPEAKER_01So here I am accusing Omari of not having insight into his illness. And I'm the one that doesn't have insight. Yeah, I didn't even have a clue.
SPEAKER_02Yeah.
SPEAKER_01The other type of dialysis is peritoneal dialysis, and that's the one where filtering is done overnight at your house. But then when I offered it to him here in New Jersey, he said that he did not want to do it at home, and I didn't understand it. It didn't make sense to me. And you know what he told me? I mean, you know what he told me, but he told me that he did not want to do peritoneal dialysis at home because he didn't want home to remind him of being sick. Oh God. And then the light bulb went on for me.
SPEAKER_03Yeah. Listen, nobody gave you a manual for any part of parenting, much less this this very difficult. You all you can do is the best you can do. And when you know better, you do better. You know what I mean? When you know better, you do better.
SPEAKER_01Yeah. But eventually Omari became more mature.
SPEAKER_03Listen, I you know I have I don't know if it's a maturity thing, Les. I think that um No, what do you mean? Well, I just, you know, we all experience the perspective that you have is very different than the person who's going through the problem. As parents, we often think that we are central to the issues and problems and hardships that our children have, but they are actually the ones going through it. And I don't know that it was a maturity thing really for Omari. I think that he reached the point where he was ready. He was ready to kind of deal with the reality of what was happening to his body. Yeah. You know, that's that's what I think. I suppose you're right. Yeah. And maybe that is maturity, but I just I just think sometimes his parents, when we see say maturity, we use it like as a as a as a whip, as a kind of buzzword. Yeah, you know, like, yeah, they were immature, and but then they grew up and started acting like adults. Exactly. So, you know, I have to jump in and protect my my nephew. Of course.
SPEAKER_01So the whole thing is easier for me to discuss now because I'm somewhat on the other side of it. What Omari eventually did was got a kidney through a living donor kidney swap. Now, as you know, the whole thing is easier for me to discuss now because we're somewhat on the other side of it. Omari did, in fact, get a kidney a year ago. He received he received a kidney from a living donor where he participated in a six-person kidney swap where there were three donors and three recipients.
SPEAKER_02Who was one of the donors? I was one of the kidney donors. Wow, amazing. I gave up my right kidney, and I gotta tell you, I'd do it again.
SPEAKER_01Um, it was such a, I won't say it was an easy process because the testing took about five months. All the testing that I had to do to make sure that I was eligible to donate. And Omari was not a match for my kidney. So I donated to someone else and then some other person, a beautiful young, 40-year-old mother of four.
SPEAKER_04Wow.
SPEAKER_01Donated her kidney to Omari. And thank God that he's doing well.
SPEAKER_03Did she have anyone who why did she donate to yeah?
SPEAKER_01So she donated because her father-in-law needed a kidney, and she was not a match for him, so someone else donated to him.
SPEAKER_03Wow, like you, like what you did for her.
SPEAKER_01But the person that her that gave it to her father-in-law actually was just an they call an altruistic donor. So she had no one that she knew needed a kidney. She just knew she has two, doesn't need two, and I'm giving one up. Wow. What an angel, a beautiful person. I mean, who thinks that?
SPEAKER_03You know, yeah, there's still so much beauty in the world. We gotta remember that.
SPEAKER_01So, as a family, we're really happy, we're really blessed and thankful. And I said that I needed to talk to the public about this issue for us with our family, but not just that, about kidney donation in general, because it's doable. I gotta tell you, when I've told people that I've donated a kidney, they don't even know that you can live with one kidney and live well. I don't anticipate being sick. I don't anticipate being sick. In fact, the kidney center where I received my kidney, uh where I donated my kidney, they said that people who are donate donors actually take better care of themselves knowing that they have one kidney, so they fare better than others. Wow. Mm-mm-mm.
SPEAKER_03You say the only one that you have. Only one that they have, yeah, yeah.
SPEAKER_01So I don't take any medications that that would adversely affect the kidney. I stay hydrated, I could exercise, and yeah, yeah. And Omari's doing well.
SPEAKER_03He looks amazing, by the way. He knows that. He looks amazing. His color is is back, and there's a pep in his step, and you know, he's standing up straight, all of those things. I mean energetic, yeah. Yeah, yeah.
SPEAKER_01So I have a few asks, actually. This podcast with uh episode is not just about me telling my sad and now happy story. There's really a few things that you all can do to help out in this effort. Remember, people are dying waiting for kidneys and waiting for organs. Did you know that one person can save up to eight lives through organ donations? You can heal more than 75 lives through tissue donation. And you can restore sight to two people through eye donation. I mean, just think about that. Changing people's lives through donations when you no longer need them. Remember that sign? You probably have seen that sign on bumper stickers where people say, Don't take your organs to heaven. Lord knows we need them here.
SPEAKER_03Yeah. And that is that really primarily done through having the fact that you're an organ donor on your driver's license? Is that yeah, yeah.
SPEAKER_01So you're you're you're like a plant with this. So so here's my question to you all. Have you checked the box or told your family members that you want to be a donor? Because only 49% of people do that. I did. I did too. I did too.
SPEAKER_02They'll open me up and say, wait a minute, she only has one kidney to give. She's cheating us.
SPEAKER_01You you paid it forward, so but really, only 49 people uh percent of people, and some people don't even think about that, you know. But I want you all to think about that. Please. You know, there's this there was a a movement that right now people need to opt in for organ donation. And some people are saying that it would be better if people had to opt out.
SPEAKER_03Yeah, because why think about that.
SPEAKER_01Yeah, think about that.
SPEAKER_03Yeah, that would set things right in the world.
SPEAKER_01Well, you know, you gotta think about body autonomy, then is uh religious um considerations and things. So isn't that the thing?
SPEAKER_03Isn't that the opting out part of it where people can make well right?
SPEAKER_01But if you don't opt out, then your organs would go to someone, and that might not be your wish. What if you're not aware of it?
SPEAKER_03We just need a campaign. That's all.
SPEAKER_01We need a campaign, exactly. Let's let's change from Omari needs a kidney to we need people to give kidneys.
SPEAKER_02Right.
SPEAKER_01Give up one. The other thing, the other thing, and this is this is real, and I've been through it, so I know that it's doable. Consider living donation. Because when people are put on the transplant list, they're actually being listed for deceased donor kidneys. And the average wait time is like Omari, he was on dialysis for six years before he was given a living donor, uh, a kidney from a living donor. So consider a living donation. If you know of someone who wants to donate because you're in failure, there are so many centers that even if you're not a match, you can go through a kidney swap like I did. And the last thing that I'll say about organ failure, organ donation is careful and be vigilant with your own health. You know, um in Omari's case, and in so many cases, there's not a lot people can do to stave off kidney failure if that's the case. But diabetes can be controlled in many cases. In Omari's case, he if he had been a little more insightful with his illness, he could have put off kidney failure sooner than he did. So those are the things that I would want people to take away from just hearing about my story.
SPEAKER_03Well, again, Les, appreciate you recounting and bringing up a lot of very painful memories. I think it's one of those things that, um, like you've talked about before, that you put aside and you think, oh, life is so wonderful. And to have been reminded that you had gone through, and of course, Omari's the center, but you also had your own devastating pain around what was happening with with your with your son. And I just really appreciate you sharing it and allowing those feelings to come back up and going out to help others, as you do, as you do. So should we call this one a rap?
SPEAKER_01I I think it is. Well, thank you again for listening to another episode of Black Boomer Besties from Brooklyn.
