Hello and welcome to the Gifted Life Podcast where we have conversations about organ tissue and ideonation and transplantation. You can always find us at thegiftedlife.org. I'm Lori Steele. I'm Joey Boudreau.
I'm Sarah Blake-Marne and coming up on the Gifted Life today. A fellow podcaster in kidney recipient talks about new legislation and her venture into the podcast world. And we're going to talk about and learn about micro-gressions and the harm they really do. All that more coming up on this episode of the Gifted Life.
Here on the Gifted Life Podcast we are proud to welcome back a friend Miss Monica Fox. How are you? I'm great. Thanks.
How are you? I'm the director of outreach and government relations for the National Kidney Foundation of Illinois. An amazing human. I saw her presenting at the A-MAT conference, which is the Association for Multicultural Affairs and Transplantation.
And I learned that she started a podcast of her own. I love it. The journey continues. So we've got to be fun to have her back on to kind of recap her story and her passion and what she's been working on.
So, Monica, we are so excited. Oh, thank you. I'm so excited to be back on with you guys because I have to tell you. The first thing I have to tell you is that your podcast inspired me to start a podcast.
Oh, that's amazing. So, it was so fun being on your podcast and I started listening to it and I just loved it. I mean, I'm not in general like a podcast listener, but you guys converted me. No.
And when the pan did a kid, you know, everybody had to shift virtually, you know, and quickly. And as you said, I'm the director of outreach and outreach came to us complete calls like where you're going to go. And you know, the general public needs to get this message. So I was like, well, maybe we could do a podcast.
And so came up with the idea, put it to my team and they were they loved it and got ourselves some funding. And here we are. And I think of credit to my CEO, Jackie Bishop, or did she came up with the name and I do love the name. The journey continues.
Oh, yes. Just like I love the names. I get this like. It is such an important topic.
And for many reasons, and you know, true story Monica, I've been a nurse for 25 years. I've been a chief clinic officer here at Lopa for a long time, but and I am a data guy. So I look at numbers and things and I knew it was very easy for me to, you know, it comes to the top of my head immediately. There's 90,000 people who are waiting on a lifesaving kidney, you know, but but in prep for it to have a conversation with you, I quickly looked at the numbers in America of chronic kidney disease.
And I have to say I was astounded. I'm mind blown. So is this right? 37 million adults here in the United States are suffering from chronic kidney disease.
That is right. And what many people don't know is that there are five stages of chronic kidney disease, you know, one through five. When you get to stage five, you know, it's dialysis or transplant or die, just the frank and the more studdling part of that statistic that I make sure to share anytime I'm talking to anybody is that 90% of those 37 million people don't know it. Don't know that they have one stage or another of kidney disease.
And I was one of those 90% I didn't know. I was walking around thinking I was healthy. And at the end, because what happens is kidney disease doesn't have any specific symptoms. Chronic kidney disease doesn't have any specific symptoms in the early stages.
There can't be attributed to something else. So I was suddenly diagnosed with kidney failure in 2013. I had for a couple of weeks, I had some, what I know now is shortness of breath, but I really felt, I thought I had a sign of infection because I had this cough, this mucusic cough. I didn't know that I was drowning in my own fluid.
The fluid was filling up my cavity basically and I was feeling really tired. And I eventually after, you know, sort of two weeks of that and then losing my appetite and not being able to eat my parents and my family where they looked at me and they said, you know, you're not getting any better, you need to go get treatment, you would need to go see somebody. And so when I finally went, I drove myself to the emergency room. And the last thing I recall is that my sister rode with it.
She was ready to drive me, but I was, I had actually went to work that day, went to work and I couldn't, I basically couldn't make it from my desk to the bathroom without extreme fatigue. So I left there and as I drove home, I told my dad I was going home because I wasn't feeling well and they basically decided you're going directly to the emergency room. So when I got home, my sister was waiting for me in her car and the drive went, she said, come on, I'm taking you to the ER, I said no, you have to get in with me, I can't get out too tired, you have to get in with me. And I drove to the emergency room and she put me in a wheelchair and rolled me up to registration.
I did my own registration and I woke up four days later and had my first dialysis treatment. And the only thing I remember in between that was just that my sister said to me at some point in the ER that my last day come back and she said, they say your kidneys have failed, your heart rate is erratic, and your blood pressure is low, they're going to need to put you into an induced coma, and you've got to fight ahead of you, what are you going to do? And I had a daughter in college at the time, so I said, I have a daughter who needs me, I've got to fight. And so my sister went about advocating for me, advocating that fight.
And I did what I could, I woke up in the middle of the night at ICU and I all like I see what I'm feeling and I like to hear with the machines and all I could think was, yeah, back it up a little bit, she said that I might not survive the first 24 hours. My condition was so critical. And they needed to put me on this induced coma and I said, I need to know who's going to wake me up. My cardiologist appeared, I'm out of nowhere.
It seemed, and he said, I'll be the one to wake you up and you'll go to your daughter's graduation. It's more alert. She graduated, I would be up. But, you know, waking up in the middle of the night in ICU, I was not ICU for two weeks.
And all you could hear was the machines, the people of the machines and the, the machine breathing for me. It just felt so out of control. No, but all I could do was look at the ceiling and pray to God, and ask God, why did you say me? And what is it that you have for me to do?
Because God wouldn't save me if he didn't have a purpose for my life. And I now realize he had to keep, he had to bring the big mouth to give me the big mouth. I think personality. I think God was his chair for three years to gain what I call a mass is in personal health, so that I could raise awareness about organ donation and kidney disease and help others who are walking this thing pass on this thing journey.
I love to watch you present you're my favorite presenters because you keep it light. Got some humor in there. But then you're so passionate, like you just tell when you're talking like I just when you told your story about how passionate you are. So when I learned about your podcast, the journey continues.
And I just went to the podcast app on my phone, typed in the journey continues and there it is the logos blue, orange, white, beautiful. And then I just started listening. It's a podcast. You want to promote kidney health and donation stories and you just let people take you on their journeys.
It's beautiful. Thank you. I love it. I enjoy it.
The stories are so powerful and stories are what people listen to and how they learn. You know, I mean, some people are about data and that motivates them. But those are few and far between. Stressed.
Are driven by the stories and the life of others and these are true stories and full disclosure here too. Again, you know, I'm a data guy, but but I am a stories guy. I mean, data tells a story in a way for me, but what drew me to organ donation were the stories and was the impact that in one person saying, yes, can give life to so many others. And and we have the same thing here.
You know, of course you were on. So you were part of our stories and you were one of the reasons that we do this to be able to deliver those stories and have people listen to that is such an impact for reaching beyond what we can even, you know, even hope for. Yeah. So and talking about storytelling, do you have a favorite episode that you have done on your podcast so far where you heard something just so impactful?
Each one gets better than the next. The very first episode is one that just holds my heart and literally holds my heart. But it's and it's the story of a mother, a donor mother and her son heart transplant is going to be. And it is absolutely amazing to witness to hear the relationship they have developed and the and the way that organ donation has allowed that mother to go on with her life and the way that she is able to stop at the most difficult times in her life where she, you know, thinks about her son and the fact that he was killed shot dead on her porch at the age of 20 years old.
When she stops and thinks about that and that thought and that memory tries to take her down, she shared that she's able to go to the Facebook page of his heart recipient or call her up and be uplifted immediately. And it so happens that the heart transplant recipient is a gospel music radio show host. So she is an amazing, amazing lady and is always full of positivity and love and that podcast was is still my favorite. And that's a good one to start with because that's the first one, you know, when you pop up and you start listening to a new podcast, at least I do start from the beginning and I'm all over the place.
I'm like, you're crying. I have organ donation, all kinds of podcast out there. But as you know, I'm sure you're finding out for us, our podcast is an educational tool. So we've had someone who was looking for information on living donation.
She found the information here, decided to donate and we were able to have that conversation. We have schools are using the information on here as a teaching tool. And then we have volunteers who are saying, you know, this is where we learn more about donation, our own pace and the comfort of our own home. So what are you hearing about your podcast?
What are the pros for it? Did you have any challenges? Because if you go back and listen to our first one, you know, even even us, it makes us cringe like, oh, that first one, we were so nervous. You know, just kind of walk us through, you know, where you are and what you're seeing.
Yeah. So we are getting great feedback from our podcast. People love it. They, they really do love the stories aspect of it.
We've sent out a survey. The most moving stories got the best, you know, mark on our survey and agreed just same way. People are using it as an educational tool to learn more themselves, to share with others, people who are considering living donation. And just like I was inspired by your podcast, many people have been inspired by ours and have started theirs.
A friend of mine who's a living donor. She's an altruistic living donor. She started a podcast called Donor Diaries. Oh, wait, we're gonna have to do that one too.
Let's see. Donor diaries? Donor diaries. And my name is Lori Lee and she's amazing and she started a podcast and she's sharing stories of living donors.
And I think that's just fantastic. There's just so much that needs to be shared and that people need to learn. But I'll say that one of our challenges is that many people are a little intimidated by the podcast platform and then I'm quite sure how to listen to it. So what we've done now is we have now started to share ours in the National Community Foundation of Illinois.
We share the journey to continue to podcast on our YouTube page to make it easier, more accessible for people who are intimidated by the podcast platform. I like that and we're using social media as well. We just want to get the word out. We're asking people to share it.
So it's always good to share ideas. Fellow podcast, PostMam. The great thing about podcast for me is that it's a learning experience for me as well. So every time we come into record and we have these industry experts or we have these families, the story that we haven't heard like inspires me a little bit and then pumps me full of new information, current information that I can take out into the community, which is where I do most of my work, which as you said, with COVID, like we're kind of getting back out in the community, but we're still not fully there yet.
And I so miss it Monica. Me too. Me too. I'm just going to talk a little bit this summer and did a few community health bears and things that were outside and it was so fun.
And even our volunteers were just excited to get back out there. Yeah. So I pray that things will continue to get better, continue to improve so that we can get back to normal in airports. Right.
Right. And then in the meantime, we'll continue our podcasting here and talking with our friends, which is a great thing. Well, Miss Monica, we appreciate the visit and checking in. Like I said, I saw you at a conference.
I'm sure I'll see you at a conference what a couple of weeks seems like you're always invited to be one of the speakers, which is pretty proud of you for that and the work that you have done. Thank you so much. Thank you. Well, I'm proud of you guys and I'm so glad that I had the experience to be on this podcast in 2019 and then again today.
But listen, let me just give you a quick update about. So when I was on before, we were talking about the new universal present medication bill myself and Dr. Cooper, Matthew Cooper and that bill has since passed. Yes.
The education bill passed. Yes. Yes. And I was actually awarded from NCA and Kia D'Yux the Kidney Advocacy Award for all the work I do for that campaign.
So I'm pretty proud of that and just so proud that that legislation passed because we're going to make such a difference with trans- Think about the people impacted. And just just just so for those that didn't listen to that, please go back and listen, of course. One 10. One 10 episode one 10 and essentially historically immunosuppressants were only paid, of course, Medicare and Medicaid pays for dialysis and then pays for kitty transplants because it's less expensive and a better way of life with a kitty transplant.
The immunosuppressants were only paid for three years if I remember correctly. Correct. So three years. And then of course, oftentimes people would become non-compliant for, you know, if they didn't have the means and then they would end up having to get back on dialysis.
So it's such an important bill that was passed and you did such a great job with that. I can't come in you enough. Good job Monica. We'll go.
She can be pretty persuasive. We love it. Guys, check out her podcast. It's called The Journey Continues, a podcast by the National Kidney Foundation of Illinois.
Enjoy the visit, Megan. Thank you so much. Thank you. On the gifted life, we take a moment for mental health.
Yes, Sarah. What do we have today? Okay. So today we are going to talk about the detrimental effects of microaggressions.
So as our society is becoming a lot more socially conscious and we are doing so much research right now on the effects of racism, systemically and also going into depth on what a microagression is and how those are just as important. So first, I thought what we could do is just explain what a microagression is. Right. So essentially it's an indirect, subtle or unintentional discriminatory act against members of marginalized groups.
So in this context, we are going to be talking mostly about racially marginalized groups. So an example of that would be if a security officer follows a random black man in a store because he doesn't trust him or if a teacher tells a Latino student, oh, you speak English so well, even though they've been born and raised in an English speaking community. So it's these subtle things that happen that aren't overtly violent, but they're still incredibly harmful to marginalized groups. And I studied a little bit about it just because we talked about the training here at Lopa, that leadership put into place so that you understand and can recognize better and how that impacts people who hear it because sometimes you hear it so much, you don't think much of it until you sit down and really think about it.
And listen to people. I think that's the most important part of this is leading with a listening ear and wanting to understand. So that's what we're trying to do here is I'll be better about that. So how is it negatively affecting marginalized groups, microaggressions?
So we have a lot of research that there are psychological and physical detriments to this. So low self-esteem, increased levels of stress, anxiety, depression, even suicidal thoughts of people who experience microaggressions. They're also more likely to feel sadness, anger, and hopelessness. Some physical things, they experience stomach aches, headaches, sleep problems, even high blood pressure.
And people who are the victims of microaggressions also use alcohol and tobacco more often. So these are psychological and physical ailments that are directly related and linked to these microaggressions. Real. Yeah, I can see it.
It's real. And it's something that we can't shy away from talking about anymore, I think. So if you are a person who has experienced microaggressions, what are some coping mechanisms? So the first one I want to talk about is that you need to be able to connect and find a supportive group with your family and friends, a lot of people who are in your racial cultural group, who you can rely on, who you can go and find a safe place to discuss these things with.
This could be anything from using humor and joking about the microaggressions with your loved ones who you trust as formal as going to a mentoring program with people in this cultural racial group that you can really rely on for guidance on how to react to this, how to process it, how to cope with it. Another strategy is to use micro affirmations. So essentially it's the opposite of a microagression. And this is where people of color consciously affirm each other's value, integrity, and their shared humanity.
Be a good human. Yes. Yeah. And turn it from a microaggression to a micro affirmation.
It's really powerful within your group. Your coping mechanism is what we call a resisting coping mechanism. And that's combating it. So if somebody says something to you that's microaggression, combat it.
Say that makes me feel very uncomfortable. And I don't know. And I don't like the way that you just said that. And that makes me feel this way.
And the why. Yes. And the why. So don't be afraid to communicate it that that is not okay with you and draw a boundary with that person.
Maybe the first time that person hears the other side. And if you don't say the why because it could be someone could be intending on having a micro affirmation in their mind. And it might be heard as a microaggression. Right.
As you said there as examples, I can see how even that could be potentially seen depending on who you are taking a certain way. So I think explaining why this is how it feels to me. Yes. And if you are somebody who gets that feedback, listen, don't get defensive and sensitive.
Just listen in here because that's we want to make sure that we are being supportive and we're helping each other. The last coping mechanism is what we're going to call a self-protective coping mechanism. So this is when we come into that self care. So take care of yourself, affirm yourself, give yourself affirmations, but also go a step further and read about the powerful, prominent people in your racial group who are successful, who lead the way in making positive change for your people and see how affirmative and how positive your group is and how impactful that could be for you.
It's going to make you feel less self-conscious. It's going to make you want to be empowered to go be the best person you can be. Like it. Good tips.
You have a topic you'd like us to cover? Email us at info at the gifted life. That'll work. And our question and answer segment.
What is the most needed organ? Take it away, Joey. Well, what we see most often is that there's the highest need for kidneys. Over 90,000 people right now of the 100,000, six that are waiting for a life saving organ, over 90,000 are waiting for a kidney, which is astounding.
But it's simply a drop in the bucket when you consider the amount of people who actually have kidney disease and ultimately will need a kidney at some point. The CDC, according to the National Kidney Foundation, the CDC data states that there are about 37 million adults here in the United States alone who have chronic kidney disease. Many of them don't even know it. So what that amounts to is it's basically about one out of every seven people adults that you run into have chronic kidney disease.
So some of these obviously are varying in degrees of severity. So some of them may have a much lower urine output and they don't even know about it. They might have hypertension and diabetes, which are the two biggest risk factors for it, but then they don't really recognize that they have kidney function issue. But what I'm here today to do is encourage you, encourage anyone who's got, especially those who have hypertension, high blood pressure and diabetes.
If you've got any issues with urinating or any issues with your urine output, please follow up with your primary care physician because you may also be one in the same number. So it's astounding. It's unfortunately, it's only getting worse, you know, and people are starting at least the CDC and from our standpoint, starting to recognize it a little more, pay more attention, but still it's not getting the attention it deserves. All right, your part guys.
If you have a question, you can give us a call, 504-648-3477. In every episode of the Give the Life podcast, we honor a hero. Today's hero is Terry Allen Coach-Burd. And we learn about him from his family.
He was a devoted and cherished son, husband, father, father, brother, friend, teacher, and coach. Loretta, his wife, was his soulmate and the love of his life. He was devoted to her and his family and sickness and in health. He touched the lives of so many people, both adults and children, as a teacher and coach at Bogaloo's in middle school and Bogaloo's in high school for 32 years.
He had a way of listening and influencing people, children and adults alike. That is rare in today's world. One can only hope that he can continue to touch as many lives in his death. Allen always wanted to donate his organs upon his death in order to help someone in need.
He gave above and beyond what was expected of him, especially when it concerns students, athletes, or family. It was all about the children. He read his Bible every day and was proud to be a child of God. There is no doubt that he is in heaven praising God with the angels, probably trying to start a baseball football team.
And now we pause and say thank you to Allen for the gift of life. And that is going to do it for episode 174 of the gift of life. Thanks for listening guys. And remember, you can register anytime as an organ tissue and eye donor at registerme.org.
Yeah, thanks to Monica Fox for not only coming onto the podcast twice, not once but twice. And then starting her own podcast because of us, of course. But really for doing her part in changing legislation that have an impact on millions who are waiting, ultimately who are currently waiting and will be waiting for a life-saving kidney. Oh yeah, totally changed the game.
A passionate recipient. You can hear it. I like that. The best place to find us guys is at our website, thegiftedlife.org.
You can listen to any of our episodes on our website or wherever you like to listen, whether it's Google, Spotify, or Apple. If it is, Apple, go ahead and leave us a five-star rating and subscribe so that others can find us. On social media, you can find us on our Facebook page, the GiftedLife podcast, on Twitter and Instagram at GiftedLifePod. We appreciate you visiting us there as well.
And we do hope that you go out and do something you would normally do to help us make life happen. Thanks guys. This is a production of Loba, or the Louisiana Organ Procurement Agency. The GiftedLife is hosted by Lori Steele, Joey Buudrow, and Sarah Blakemore.
Our executive producer is Kirsten Heins, producer Isha Long-Caraway. Intern is Rebecca Rannam, and we are recorded, engineered, and mixed in our Covington, Louisiana studio by Troy Perez.