The Decision Project

And welcome to the Gift of Life Podcast, where we have conversations about organ tissue, and I don't nation remember, you can always find us at the gift of life.org. I'm Lori Steele, guys. I'm Adam Keaton, in for Joey Boudreau. In for Joey Boudreau.

Hey, and I'm Sarah Blakemore. Yes, here on the Get to Life today, lots to talk about. What's up, guys? Today we're going to be talking about the Decision Project, what is it, and how it's saving lives.

And misusing psychiatric terminology. All right, obviously lots to get to you guys ready. Oh, yeah. All right, our friends are joining us next.

Here on the Gift of Life Podcast, we are talking about the Decision Project. So Adam, Sarah, we've been trying to figure out what is it. Sounds so amazing, making life happen. You know, we love it.

We went straight to the source. So Aisha Johnson is joining us. She is the Community Outreach Manager for the Living Legacy Foundation. Hey, ma'am.

Hey, how are you guys? Good. We also have another friend to introduce you guys to a recipient, volunteer. Her name is Sonia Taylor.

Hey, Miss Sonia. Hello. Hi. So we appreciate you guys joining us.

Aisha, I'm going to start with you. We know that you presented a couple of conferences created a buzz about the Decision Project. So what is it in a gist? And then we've been, how Sonia became involved.

Well, thanks for having us here. We're very excited to be a part of the podcast. You know, it's been an awesome podcast that Louisiana Oregon procurement agency has been doing for a couple of years. Thanks, girl.

So about the decision. Of course. The Decision Project was started back in 2016 and it started off an idea where myself, a family services manager, we just sat down and thought, how can we start a different way to do outreach in our area? And we had no name.

Decision Project wasn't even thought about that time. And we just started by looking at the data because the data can never steer you wrong. And we found out by pulling our donor designation rates by zip code in a state of Maryland. We found that we have one particular area called Park Heights, which we refer to as 2125.

They had the lowest donation rates. And then we were just talking about in conversation with our hospital services manager. She said, well, we just pulled data from Unos on the wait list, by zip code. And we found out that that same zip code had the highest amount of people in the state of Maryland waiting for Oregon transplant, but the lowest amount signing themselves up to be an Oregon donor.

So that's how this started. So Sonia was brought in as one of our amazing volunteers for over 10 years, along with the small task force. And we just sat down and said, what can we do? We literally just started brainstorming, thinking of ways to go back to the grassroots way of doing education.

So that's how the decision project was born. It took about 18 months to have an official name. But that's in the nutshell. So we are basically empowering our residents to register, educate them about the importance of being an Oregonian tissue donor, and then inspiring them to share their message with their loved ones.

I love hearing how projects get off the ground. I love it. It's just an idea. I invite this friend in, this coworker, and then pay out the decision project is born.

So Sonia, we know that you're an amazing volunteer. We've heard all about you, recipient. You have another tied to donation. Talk to us about that and why you thought I need to help on this decision project.

Okay. So back in 1994, I had the, I had a coinier transplant. So leading up to a coinier transplant is my vision had declined. And I was always one who could actually see very well.

And I couldn't understand why my vision was declining so rapidly. So went to have several prognosis and the doctor came up with, told me that I had an I just order, which was called Carineatoconus. So I couldn't even think about how to spell Carineatoconus. That alone, trying to understand what Carineatoconus was.

So after I had all of these different prognosis and the doctor was telling me that there really wasn't anything that they could do for me besides me having a coinier transplant. So fast forward and to 1994, I had a coinier transplant. So I went around with my coinier transplant. I said, have you got lucky as I possibly could be?

My vision began to improve over the years. So I was happy that I was able to see. So fast forward and God says to me, okay, well, you have to go lucky. You wanted to round, but you're not threading the word about the importance of organ ion tissue donation.

So there was a decision that needed to be made. And my nephew back in 2007 was actually killed on the streets of Baltimore. So he was murdered on the street. However, what I didn't know was that he made a decision as 16 that he wanted to be an organ donor.

So we didn't find that out until he was 21 in 2007. He became an organ donor. And after that, I said to myself, well, how do you want to keep his legacy alive? So the vision that I thought I saw after my coinier transplant in 1994 really didn't have happened until 2007 when I realized that at 16, he was smart enough to make the decision that he wanted to give somebody else a second chance.

So when he gave someone else a second chance, I had to say, well, wait a minute, now you got to talk about this. So I had to talk about how important it was for him and 16 to make a decision to say that he was going to be an organ donor. So every day now, I talk about the importance of organ ion tissue donation, knowing that I did not get to see the vision until 2007. So that's how I get involved.

So I speak on that all the time. And whenever I run across somebody that's in that two, one, two, one, five area code, I talk about the low, um, this designated recipient and donors that we have in that area. And then I talk about how important it is in that area where there's a lot of people who actually need to have a way for a life-transparent organ. Yeah.

She's one of your most powerful weapons, I'd assume, Aisha. Uh, great, great storyteller passionate. I love it. So let's talk about the decision project.

Obviously you talked about it as a code two, one, two, one, five. So what did you guys start doing? I know you said grassroots. Um, so I'm assuming baby steps right out the gate.

Tell us some of what you've been doing, what you learned from it and where you are now. Perfect. So what we did when we started that task force, we actually met with Sinai Hospital of Baltimore, which is a second level trauma center on part-height since two, one, two, and five. And we met with their population health department because we really didn't know where to begin.

And they met with us. They thought this was a great idea. So they just literally remember so yet they gave us a list of organizations to ask. Um, so what we did, we split up and everybody down the phone and started doing cold calls just to get in the room.

Um, we did that for about a year. And while we were doing small sponsorships in the community, such as giving backpacks away to young kids, um, working on the corners, giving away food through different organizations, we realized this may not be the right thing to do. So we decided to do a focus group and that started last year, you know, as a manager, I got to find ways to, you know, make it happen. And when I got a couple of folks, the amount just blew me away.

I can't believe people are offering $75,000 to do focus groups. Um, when we realized that couldn't happen, I actually have a friend. Her name is Macy Henderson. She works at the Johns Hopkins Hospital and research.

And she told me she can do it through her students at a minimal, minimal cost through a grant. And when I was approved, they hosted six focus groups and offer us. And the biggest takeaways through those focus groups were number one, a lot of people in that community felt that they're always being asked to do something like no one's coming in, um, seeing what they need as a community. Um, and I want to give you a few steps about that area.

About 50% of the residents are raised by single parents. This particular area of Baltimore City has over 2000 vacant buildings that dominate the landscape. So you can just imagine with a burnt down building next to someone's house that has, you know, nice, the next door on boarded up. Um, one third of the residents have a high school education.

Half of the residents are unemployed. Um, and they live 7,000 lower beyond the median and the regional sense. Um, so that area is very poor. They do live in a food desert meeting.

They have to either get on the bus and feed miles for the nearest grocery store. Um, so you can see right then, and they're their first party is not donation. Um, the second party is not their health. And that's something else we learned in our focus groups that that's not something they talk about.

And what was eye opening for me, one woman was in the room. Her son was being worked up to, um, for the hospital for a kidney transplant. Another woman said her cousin was waiting for a liver, but no one talks about it. It's like, yeah, my cousin needs this and no one's having a conversation.

And then that, you know, spoke to my heart. Well, what can we do to help you prevent his health? And that's when we got council support through the seven district and his name is council man, Leon Pinkett. And he has actually the council member, two, one, two, one, five, one, six, and one, seven, which all are low-down designation rates.

And he took it upon himself to have us host a block party in that area where we do a lot of preventive health, where we have blood pressure screenings, diabetes screens, um, food giveaways, a garden that is actually the park heist that we sponsor. So people can get first produce. And the one thing that we do not do, we do not talk about registering on the registry. We're just educating them about the importance of donation and having that discussion with their family.

Cause that's what for me, when something happens to that loved one and living like you see, it's coming on site to give the opportunity to give life. They're not thinking about all of that. They're thinking about who was taking care of me and my time of need. And with all the mistrust that is going on with the healthcare system, particularly with the Johns Hopkins hospital that kept coming up over and over again, if we think we can help dispel this mistrust that maybe they can go ahead and start trusting other healthcare institution.

And I like that a different approach. I like that you're using the data and the stats. And then you bring in someone like Sonia, um, who shares and has walked the walk, um, who's talked to talk with a lot of these folks and maybe getting them to start sharing their story. So Sonia, have you taken part in some of these events and what's your thought process about the decision project?

Um, so actually the one of the things that we started after my nephew passed away was a foundation where we actually do different events in the community to kind of talk about the importance of organ, iron tissue donation, especially for the younger African Americans. Because we realized that one of the things is that there's such a myth about organ, iron tissue donation that happens, especially in the African American community that we're trying to dispel so that people understand that we need to be more involved in saving lives and making sure that we make the right decision. So I enjoyed the decision project project because we get to do various different things, um, to get out into the community so that we are able to, one, increase the knowledge and the awareness of organ, iron tissue donation and to dispel so many myths about when you are in a tragedy that your life won't be saved because you think that because you're organ, don't they check your license and say, Oh, we're not going to save you. So we need to get that out and let them understand that you want to keep living on and on and on and on.

And so every time that Jordan has saved seven lives, I say that those people have gotten a second chance and they get to live on. So why not play it forward? So how are you doing is paying it forward so that people understand that lives and folks will keep living on and your family member have just, you can even imagine, especially for me, because since 1994, if that family hadn't said guys to organ, iron tissue donation, then my vision wouldn't be what the way it is right now. I would still not be able to see like I can see today.

So I try to make sure that people understand that piece. I love it. I enjoy the decision project. Yeah, it's interesting.

The myths that you guys brought up were miles apart, but, um, these saying myths are things that we're battling here too. Um, and education is key. So we love the new approach that you guys are going with. Yeah.

Hi, I, I had a question for you actually, um, being that she said, the, this project was, you know, data driven, and you guys looked at specific data in specific areas, but you're not directly addressing, uh, registrations in these community events. How, how do you guys go about measuring success of the program itself? That's a very good question. When we started, we thought it was going to be data like, Oh, this is easy data.

Let's look at the numbers every year and see where we're going from there. But when we got into that community was much more than that. So how we're measuring it right now, and we do have registrations at some events, but we're just not focused on that right now. We're measuring on our legal conversations and these relationships we're building, um, inside that community.

And when we did the second set of focus group, that's when we actually saw the fruition when they were mentioning live and legacy and trusting us more than they were trusting their hospitals. And that made, and I was like, okay, like they heard of us, you know, and, and eventually, and I'm going to be honest here, the data isn't ready for us right now. We're, and I'm cursing to tell you, it's a lot of data scrubbing to go on with these registries and the DMV pushing in numbers and until that gets cleaned up, I'm really not going to see a true sense of our designation rate, but we have seen an increase at Sinai Hospital designated donors come in in the last year alone. So, um, seeing an increase.

Yeah. Yeah. Yeah. I think you can look at the, um, just, uh, as anecdotal evidence, like you said, just, um, the conversations that you have with people day to day when you're in the community and you can kind of, I think maybe see a change in the tide, you know, the way they speak about, uh, organ and tissue and non-dination when you have those conversations and they're out in the open.

So now that started back in, uh, 2016, 2019, now, um, you kind of sound like us. We're going to go out. We're going to try. We're going to learn from it and we're going to adjust on the way.

So maybe top three lessons, Aisha, uh, that you've learned, um, doing this, things that, um, you think work that others maybe could try, um, that you've learned from, from this process. Yeah. The first thing I learned is, um, maybe for us to think about who we're partnering with, well, you know, our transplant center, it's one of the best transplant centers in the world, but also it has a bad reputation from back in the day, you know, with the whole Henrietta left story that, you know, our residents haven't forgotten at all. So that came up a lot.

And we didn't think about that when their researchers were talking to the community, you know, so that, okay, that's in the face a little hard, but that didn't stop me from working with the hospital because we all need to work together to help build that trust. This transportation can happen without that hospital and it can't happen without the OPO either. So that was a lesson that we learned in the second lesson that we learned from that is that we just need to listen. Um, we need to let them voice their, you know, their concern.

I know last summer when we did our second block party in the area, one of, you know, activist in a neighborhood was upset that the councilman didn't let him know that this was happening. And, you know, and I'm like, well, maybe we couldn't have went to a meeting in the community to say that we're playing this block party. Do you want to be a part of it rather just thrown the block party in their area? Um, so we'll work on that.

And also too, what is important that social media and the younger crowd, um, that came up a lot. So, you know, my PR team, Allison Coleman, she has all these great ideas on what we can do in that area to highlight transplant recipients and donor families. So she's, you know, throughout an ideal and beautification, like maybe let's put up a mural, um, because they said that they would love to see their city look pretty, you know, and, and then also to one of my goals is having a safe zone for that area where we were told their teenagers are already planning their funerals because their mind said they're not going to get, they're going to get shot and killed or murdered. Um, so create a safe space where, you know, they can come and play and have fun.

And that's not a blue sky of mine, but, um, what I'm happy about our CEO, Charles Alexander, he is now making the decision project and organizational goal. And that's important for us and my team, because we've been in the, you know, boots on the ground for the last three years and now that our senior leadership team is actually taking this serious, not saying they never had, but they're realizing it's a need when trying to get the data. Most of our donors are coming from a seven mile radius in that area. So it's something that is important.

And we got to, you know, look at it enough and the way to help those people, because at the end of the day, we are going to be asking them and their families and donors. This tool can sound so resourceful because, you know, we even say here, there's two steps to registering, registering and then telling your family about it. Sonia, did your family know how to have these conversations? Well, see, that was the issue.

No one knew that he was a donor until that tragedy happened. Um, his mother wasn't even aware. So she really had to start, she really struggled with the fact that he had designated himself to be a organ donor. But at the time, she was, you know, her youngest son had just got killed.

So she was struggling with the fact that now I have to make the decision to agree with what he said he wanted to do when he got his license at 16. Because now he's 21. And she has, she struggled with that at the time of his death to make the decision to actually honor his wishes. It was hard for her at that moment.

And the reason it was hard for her at that moment is because he never said anything to anyone. He didn't even mention it to anyone. And the problem that we had at that time was because he was so young and now she had to say, Oh, which organ do I have to donate for him? Because now he said he wanted to do your organ donor.

Now, which ones do I actually assign and say he can have? How do we do that? So because I was a recipient, I was able to help her get through that process, which was hard at the time. Not only was I able to help her, there was the staff at Live and Legacy Foundation.

That was extremely helpful during that time to help walk her through that process. So it's important that when you say yes, you want to be an organ donor, that you share that with your family members. I wanted to ask about, since we're talking about the conversation, and I think this is certainly not a local problem. This is a universal problem with donation and end of life decisions in general.

I used to do having a couple of quick tips. Maybe you could give our listeners about how do they initiate that conversation? Because it seems that there's never a good time to talk about death. And you know, what our wishes would be and people are obviously uncomfortable talking about that.

So there are a couple of quick things that maybe you could say scenarios or something in which some might get to initiate that conversation with their loved ones. Absolutely. And we all know sitting and having a conversation that everyone's conversation is going to be different and unique to them. And just like what Sonya said, that they didn't know.

So again, emotions were running high at the hospital, very stressed. So ways that you can bring this up if you're having a difficult time with end of life conversations, there are a lot of movies out there that deal with death, tragic accidents. So probably after watching a movie, you know, turn to your loved one sister, daughter, husband, friend, and just talk about, well, if this was to happen to me, here are my wishes. Do I want to be an organ donor?

Do I not want to be an organ donor? Do I want to stay on the ventilator? Do I think of all kinds of scenarios in the hospital? I'm out of family gathering.

Actually, I live in legacy. We do a community outresemination every year and want to sit around how to have conversations about end of life and what you do and ordination around the dinner table. So we reenact that into an entire scenario out. And I think you can do it if you see something on the news, you can have a conversation about death in itself.

And we actually offer community grief resources for the public and the legacy. So to give you tips and different ways to talk about donation, and then you can visit our website, www.decisionproject.org and look at how to discuss your end of my wishes with loved ones. And it gives you a lot of tips and a lot of scenarios on how to have those difficult conversations. Yeah, I looked at the website and it is a really great resource for those, for those decisions and conversations.

So ladies, it's been an honor, a pleasure. Thank you for all that you do. The decision project guys. Check it out on the gifted life podcast.

We're taking a moment for mental health. Sarah, what are we going to talk about today? Okay. So today, guys, what we're going to talk about is misusing psychiatric terminology.

So that sounds a little crazy. Yeah. So really what it is is psychiatric terminology that's misused today, that most would be things like bipolar, depression, traumatized, or my favorite triggered. Oh, we all say that.

Yes. And look, we all do it. And I am definitely, I have done this before where I'll joke about things that, quote, trigger me that aren't. So really what the conversation today is going to be about is how over using these psychiatric terms and over using these clinical psychological terms can actually devalue and create an unequal experience between people who actually have gone through clinical depression or have experienced a severe trauma and have PTSD from that.

Going back to triggered. Can we, can you explain what that actually is? Because I hear that we're throwing all around a lot with our young people, everything. Right.

Oh, I was feeling so triggered. So it's kind of a commonplace slang word almost. So can you talk about a little bit about what triggered is? Right.

So when we're talking in a clinical perspective, what trigger actually means is something that, say, for instance, you've gone through a trauma, so you've gone through a car wreck that was really traumatizing to you. You might have had some physical, mental, emotional, negative impacts from it. Being triggered in the future might mean that your body is kicking in response to danger that's not happening because of what you've gone through in the past. So like a physiological response.

It's a physiological and emotional response to something that's not actually happening right there. But since you've gone through something similar, it kicks it in and it gives you that adrenaline and that fight or flight response to some things. So really, and again, I've done it. I joke about it too sometimes, but really this is just about being a little bit more mindful of the fact that some people do go through these things.

And if we throw these terms around too much, it can devalue what people have gone through and what they're experiencing and working through. I kind of kick myself because in our circles, like, oh, it's going to be anxiety. Right. And it's like, stop.

Just shouldn't have said that. Right. Stress and anxiety are two different things. And I think a lot of people equate anxiety and stress.

But if you've talked to someone or spoken to someone who actually is clinical anxiety, it's not something that is just stress. It's physical. That's a great point because a full on anxiety attack a lot of times for the first time it happens to a person, they think they're having a heart attack. It feels actually like a heart attack.

It does. And so they seek treatment into the emergency room thinking that they're dying. They're having an heart attack. Right.

And look, none of us are perfect. And I think it's an example of our society today. We're a lot more open and honest about mental health now, which is good. But we just have to be a little bit more mindful about using these terms that are clinical and they're real.

And for some people, they are debilitating. So something that triggers you, you know, if you like spilled coffee and stuff, and you're not, you're just upset and embarrassed. I just try to be cool because that's the new in term. You know, we work with some college kids and they have a different language.

Although I know Adam, you're thinking, you're just as young as these college kids, right? So I feel it, right? Yeah. But, you know, just a different language.

So I think they may have good intentions. Right. It could be using it in the right way. That's right.

And I think a little bit of slang goes into that too. And what's open and what the conversations are. And again, we are a lot more open and conversing a lot more about mental health. It's just about being a little bit more mindful and, you know, saying what you mean and meaning what you say.

So be more mindful tip of the day. All right. Thanks, Miss Sarah. You want us to cover a topic info at thegiftedlife.org.

We'd love to hear from you. In every episode of the gifted life podcast, we honor a hero in this particular segment. We're going to do things a little different. We actually have a recipient and a donation volunteer, Sonia Taylor, who is going to be sharing her story about a hero named Jordan Taylor Brown.

Well, Mr. Jordan Taylor Brown was my nephew. He was a basketball star. He loved sports.

He loved his family. He was a joy in our lives. When he walked in the room, he had this magnificent smile that would light up the whole room. But what he loved most was his family.

He loved his family. He loved to play sports. Jordan, what can I say? Jordan was he was a great kid.

It was sad that his life was taken at 21 years old because even though they took him at 21 years old and he's not here with us, he still remains that hero and our family because he was smart enough and 16 to say, I am going to help someone. And he was able to help people through his death and he continues to help folks through his legacy. So Jordan was my sister's baby. He was the baby of my sister's three boys.

And whenever you need him to do anything, he was there just before he passed away. Jordan would take care of these seniors in our neighborhood. He would take the seniors to dialysis to make sure that they were getting their treatment. So he was a kind of young man that wanted to get back and he's still giving back to his death.

So not only is he a hero to seven other families. He remains out hero and we're going to keep his death, because he's going from here on out. So now we have the gifted life podcast. We'd like to just pause and say a sincere thank you to Jordan Taylor Brown for giving the gift of life.

And our question and answer segment today. This is a good one because the kids like to talk about this one too. And maybe some adults, when you have a kidney transplant, do they take the old kidney out or does it stay? Adam?

Well, I think the short answer is no, they do not take the old kidney out. Really? You're John the floor. Yes.

Okay. Why? I typically the disease kidney stays in the body. I think because the procedure to take it out and take it off the vascular supply, the blood supply to close that would be more of a risk than leaving the kidney in.

So actually implant the kidney into a lower part of the abdomen, the very lowest portion of the abdomen and connected to the blood supply there because the disease kidney is connected to blood supply at a really crucial level. It's a really major important blood vessels. And they rather not go in and cut on those blood vessels if they don't have to. So it's more dangerous.

So they place the kidney somewhere else than in the kidney. Correct. Modern medicine. So they just tie in a little bit lower.

I had no idea. That's a recipient. You said I have three. Yeah.

Was not working, but I have three. They're like a super. Yeah. Bad of honor.

Yeah. So usually you have to not working because both your kidneys have failed, which is why you need the transplant. All right. Good question.

Maybe you have a question for us info at the gifted life.org. You can also give us a call 5046483477. We'd love to hear from you. And that'll do it for this episode of the gifted life.

Our friends Aisha and Sonia, how great were they? Talking about the decision project. If you haven't checked it out, please do. It's just another way of making life happen.

And then you got to love that. Adam, thanks for being here on the gifted life. We hope you enjoy it. Thanks for having me.

It's been a great experience. Yeah. We'll have to call them back on there. I love it.

All right, guys, the gift at life.org. That's where you can find all of our episodes. We asked that you help us make life happen by spreading this information, help people find us. Yeah.

And listen on our website or anywhere you listen to your podcast, whether it's Apple, Google or Spotify. And please leave us a five star rating and subscribe because it really helps other people find us. If you're on social media, please like our Facebook page is the gifted life podcast and follow us on Twitter and Instagram. And that's at gifted life pod.

Please do it. We know you're out there on social media. We'd love if you start following us and helping us make life happen. Hopefully we've inspired you to sign up to be an organ tissue and I don't or you can do that really quickly at register me.org.

And if nothing else, we hope that you go out and do something you wouldn't normally do to help us make life happen. We're a team and we'll talk to you next time. This is a production of Loba, or the Louisiana Organ Procurement Agency. The gifted life is hosted by Lori Steele, Joey Boudreau and Sarah Blakemore, our executive producer is Kirsten Heis.

Producer Isha Long Caraway. Intern is Rebecca Rannam and we are recorded, engineered and mixed in our Covington, Louisiana studio by Troy Perez.