The Organ Donation and Transplantation Alliance

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 the GiftedLife.org. I'm Lorystio. I'm Joey Boudreau.

I'm Sarah Bligmar. Today on the Gifted Life. We'll be learning about an organization that's celebrating 15 years of bringing hospitals, opios and transplant centers together to advance the industry. And we're going to talk about some myths about happiness.

That's about happiness. All that more right here at the GiftedLife.org. Here on the Gifted Life Podcast we are excited to welcome Carrie Hobson Pope. How are you?

Hi, how are you? Thanks so much for inviting me. Yes. Thank you for taking the time.

I'm going to talk about the Alliance. And so we were like, who knows about the Alliance? Joey, you know a little bit. We had to get some research from you.

Yeah. So a little bit of historical context. So in 2006, Tommy Thompson, the Secretary of Health and Human Services recognized the need and the gap that was there with education and basically sharing of best practices, collaborating between the donor hospitals, every day hospitals, regular hospitals, the transplant centers, those hospitals that do transplants and the OPOs, the LOPAs, the organ procurement organization. So that's where the organ donation and transplantation breakthrough collaborative was formed.

And we would go regularly at that time to different meetings and such and share so many of the best practices and educate and spawn education trainings and things like that. Where we saw so much of an uptick, so much of a sharp increase in the donations and transplants. And it was a direct result from the collaborative as we know it. And of course, that was a couple years or so.

And then as I understand and Carrie, you can certainly correct me if I'm wrong or guide me in the right direction. I've always understood the Alliance pretty much respond from that and that idea of continuing the collaboration. That's right, Joey. That was a fantastic overview.

Thank you. You're absolutely right. The Alliance emerged from the breakthrough collaborative. So this year we are fortunately celebrating our 15th anniversary and we're really honored to be serving this community for the last 15 years.

The first board meeting was actually on February 2006. So it's been a lot of change, a lot of wonderful opportunities to bring innovation to the community over those last 15 years. And yet, Joey, just to kind of build upon what you shared, I think one of the major tenets of the breakthrough collaboratives was the basic premise that every single day innovations are taking place and best practices are created across the country. So we really are building upon this all teach, all learn approach.

So as new opportunities and innovations emerge from different parts of the country, we do our best at the Alliance to make sure that it's brought to others across the nation as quickly as possible so that everyone can benefit. So you talk about the all teach, all learn. That was one thing that I can remember quite vividly. And actually, I think I misspoke about the date.

You guys started in 06, but the collaborative I think maybe could have even been a year or two earlier than that, right? You're right. Yeah, I think it started back in 04. Yeah.

So it was toward the end of the collaborative when the Alliance emerged. Right. So again, the focus then and which is still now with the Alliance, as you mentioned, all teach all learn. So we didn't really have any avenues and any way to collaborate with transplant centers or with hospitals.

So we brought just so everyone can understand kind of a bigger context. So we brought quite a bit of the critical care physicians from Louisiana that worked with the hospitals. They were part of the hospital system and then with us. And then of course, the transplant surgeons and such so that we can all be in the same place, understanding each other, basically talking to each other and helping educate why this is needed and what this is about.

And it's funny how much when you have that relationship building and that better understanding how much better every part of that process works. So you guys took that on. And then I know I've followed you guys from afar throughout the years. He, Aga, you are was of course, I don't want to miss people on her old title, but I believe like a program director, if I'm not mistaken.

She is and she's she's still working with us in a lot of different capacities. She has her own organization now, but we partner with her in many ways. So so I was always closely linked there because she's always been a close friend of mind for years. And you guys did such a great job at educating at you know, finding things that we would need from an education standpoint and the most current things and kind of filling that gap, educating training and stuff.

So can you tell us a little bit about what you guys do, what that education looks like and how it is that you can be so nimble and be able to, you know, pivot on a dime and start educating about something else like issues with COVID. Yeah, no, no, no, of course. Well, and just to clarify a little bit, the Alliance full time team is quite lean. We only have a handful of full time staff members.

So we are very dependent on professionals in the community from hospitals where donations occur to OPOs to transplant centers. And they volunteer their time to really help articulate and identify these best practices that exist. So we would not exist if it wasn't for the commitment and volunteer efforts. There's so many professionals in the donation transplantation community.

So we are grateful for them every single day. So just to clarify that a little bit, it's the Alliance team does a tremendous amount of work to create the platforms and really to help facilitate and support it. But the great innovations are coming from the professionals in the community. So what we do is we have a variety of different work groups.

In fact, currently we have some team, we have another one that's kicking off later this afternoon. So I guess we have 18 now. And these different work groups really identify opportunities based on some needs that exist. So some that started long ago were dedicated to a whole series of live programs.

And these are all delivered virtually. So essentially they're webinars and we call it our live advancement series. And these webinars are set up so that we can identify some key topics, whatever those key topics are. And they might be donation focused or they might be transplantation focused.

And then we have a variety of other innovation focused topics and brain death topics. And we really work with these work groups to identify what those key issues are. So they bring them to us and we get them on the calendar typically a year in advance. But if there's an emerging issue, we do that much faster so that we can bring it to the community quickly.

So we have a variety of these programs. They're all set up on demand as well. So there's available to the community, of course, people that we work with, as you all know, don't necessarily have time at two o'clock on a Tuesday afternoon. So we need to make sure that it's available for them, you know, anytime today, day or night that they need it.

And that's really kind of the way we've approached a lot of our learning programs. We want to make sure that they are accessible. We want to make sure that they're scalable. We want to make sure that they're relevant for the needs that are out there today.

So we have a webinar series. We have another program that we call the Conversation Series. And it's really structured differently where we present key topics and then we want the discussion to take place because that collaboration is where real opportunities emerge. So we make sure that that conversation takes place through panels and Q&A and sometimes just through breakout sessions.

And again, this is all delivered virtually so that, um, so that people across the nation can participate. And then beyond that, we have a significant event every year, typically it's face to face. It's not going to be face to face this year and it wasn't last year, but it's one of our large events and we're really dedicated to bringing in a collection of frankly, really impressive speakers that participate and that really share some of the current trends in the community. So that event's called the National Dohner Management Summit.

We're having that this year. And then we also have the National Critical Issues Forum, which we have every other year. So Joe, we mentioned COVID. So I guess I'm curious, um, I know it's four.

So you guys have the opportunity to do that social distancing, but what issues came up with COVID, um, that you've heard about, that you had to get training on and maybe push out those webinars because that's a topic that I feel we're going to be talking about for quite some time. Yeah, I think you're right. Unfortunately, you know, COVID brought a lot of different challenges to our community, obviously working with COVID infected donors and the community is working toward, um, working with donations and sharing best practices in that capacity. We're certainly working with our workforce too.

I mean, the reality is the healthcare community is exhausted right now and there's an enormous amount of pressure on our team members. So we've been working from that capacity too. It's also affected a lot of just labor structure. So we've been, you know, developing a lot of collaborations so that we can have those conversations with leaders so that teams can be more nimble.

Telehealth is an important, important topic at this point. So we've held a lot of different topics that are specific to infectious disease and transplantation, but also working within this environment of COVID that we all have to deal with now. So the Alliance is all about sharing information so that we can increase the donations and transplantations in this country. Tell us how y'all measure that impact, the impact that you have on this field.

Yeah, that's a great question. It's such an important question right now. To your point, we really look at the Alliance as being a real catalyst, if you will, for igniting some of those advancements. So as new opportunities emerge, DCD, for instance, we have had a tremendous amount of a lot of programs dedicated to DCD and we will continue to in the future.

And as we've seen from a lot of the UNO's data, those numbers just continue to increase, increase, so while of course the results are due to the education that's taking place, there are so many other factors that are included, but we're just incredibly happy to be a part of the successful program that exists in the United States related to donation and transplantation and still recognizing that we need to improve it every single day. So that's where we're really focused as well. So I was fortunate enough to take part in Alliance. I was asked to speak, and I can't even remember at this point because it was probably seven, eight years ago, but I was one of the speakers on a previous program that you had and it's always such relevant topics.

We have quite a bit of our staff that we continuously encourage to make sure that they're staying up on these things because we get so ingrained into our own focus. And so we lose sight sometimes of the other big aspects, big things, big initiatives that are going on industry-wide. So that's really one of the neat things that it allows us to at the same time while we're learning about sometimes exactly something that might immediately impact us. And then the next week it might be something that's just a real cool, innovative idea that you see that kind of benefits on the back end or somewhere else.

Can you tell us a little bit about what the latest that the Alliance is doing as far as initiatives and things? I know you guys, if I'm not mistaken, have gotten into kind of a mentorship type program or something along those lines. Yeah, we have. We have.

And you bring up such a good point, Joey, too. There are so many important critical topics to really help move the needle right now. So we're dedicated to so many different topics, whether it's diversity, equity, inclusion, or as I mentioned, organ allocation changes that are taking place right now or other topics related to DCDs. There are so many topics and we're continuing to provide those out there.

But what we've done in the last several years is we launched a mentor program. And we started, frankly, with the transplant community first. And immediately there was a lot of interest for it. So we kind of kept an eye on that to see where the interest was.

And we were asked to extend into the OPO community. So we did that in the second year. And there was a tremendous amount of interest. And now we have really invested, frankly, quite a bit into this mentor program.

And these mentor-ment team matches are basically, let's say, an OPO professional, might be an OPO coordinator or someone else in the organization that is matched with another OPO leader in a different part of the country. So the idea is they can really stay, help each other, really help develop professionally, and also talk about some of these emerging issues, whether it be DEI or DCD or organization or anything, whatever the need is for that mentee at that point in time. And I'm really happy to say we have had in those last few years more than 500 people across the nation participate in this mentor program. So and this is free to the community.

So Danna Fenton leads these efforts and she puts a tremendous amount of time into ensuring that we have a system that assists with this, but ensuring that we have the right mentor-mentee match. And at the end of the day, it's the work for the mentor and the mentee. So again, it's those volunteers for our community that are really making the difference. But some of the results, some of the testimonials that we've received from some of the mentors have really emphasized the fact that it's really helped them in their career.

I can tell you, even from my own personal perspective, I was a recovery coordinator back in the early 2000s and got into leadership management, I believe in 2008 or so. And at the time, the director that I reported to, she left very shortly after, like within a couple months of me becoming the manager. And I had no immediate guidance right there. And of course, I had Kelly, you know, ran my CEO, who's got the whole company to worry about.

And I kind of, that was a void. And I didn't have, and at the time, we didn't have, of course, now I have a hundred of my colleagues that I know, now that I can reach out to when I've got issues with, I knew one, you know, really not hardly anyone. And so if I'm going back, you know, 13 years to know how much it would have been very valuable to me, I can see 500 people later, how much impact it's having on the industry as a whole. I applaud you guys for seeing that gap.

And then for pushing that forward, like you guys did and kind of cultivating a culture that was accepting of it, you know, because I know, again, it's not that easy to ask for help sometimes. And for you guys to be able to do that is really commendable. Well, it's exciting. And what we're really excited about too is there was interest in community to be matched with someone in a different part of the continuum.

So for instance, an OPO professional that might be interested in being matched with a transplant professional. And I think there's a lot of power in that too, because they can understand the pressures and the systems that exist in different aspects of the donation and transplantation field. So I'm really excited about some of those changes that will be coming out based on that mentorship program. It seems like a no-brainer.

And so I'm like, man, could you have somebody said something back in 2006? Where would we be? Right? Something.

So what is, I was like to ask people, their background, where you're in a donation field, like you sound so passionate about making life happen. And so where does your passion come from? Oh, I'm so happy. Yes.

No. And actually, I don't come from a donation field. I actually worked for a long time in education. I worked in the university environment, so I did a lot of work in research and instruction and service.

And those are the three tenants, frankly, that have guided my professional path. I did make this change. If you're interested in some personal experiences, my brother-in-law had a heart transplant in the Rochester, New York, and it lived for five very successful years afterwards. And then about three years ago, my minister actually had kidney transplant.

And actually didn't live for much longer after that. But through those personal experiences, I got very involved in the donation transplantation field. And really wanted to take a lot of the background that I had in higher education and in professional education and bring it to this community. So I feel really honored to be able to do that today.

One thing that I'm frankly really passionate about, too, working at the Alliance is really elevating the quality of the educational delivery. So the work that we're doing right now, of course, rolling things out in a virtual environment, it can be challenging. But there are some key best practices that exist. We want to be the best of the best.

We want to reach our professionals at a time and place and in a way that works best for them. So I really enjoyed it. And I am very passionate about this community, but also about creating the right experience for people so that it's easy and accessible. We have incredible team of people at the Alliance, Corey Bryant, who has done so much work for us to really listen to what people need and create delivery mechanisms.

So that's delivering the way that's helpful for them. Nice. And where do we find all this great information? You're going to look at it, yes, sir.

Yeah, just go to our website. It's at organdonationalliance.org. And again, this is material that's focused on professionals in the community, not for the public, per se, or patients, per se, but certainly for professionals in the community at organdonationalliance.org. And all of that information is currently listed there.

Perfect. So today, explaining the history, I know we were all excited. Let me get to learn a little bit more and especially highlight our partners that bring so much to what we do. So we appreciate you.

Well, great. Well, thanks again to you all and for being one of our professional partners. All right. We're taking a moment for mental health.

Yes, we are, Sarah. What do you have on store today for us? Happy, happy, happy. We are talking about happiness.

Well, maybe not. We're talking about the myths of happiness. So there's lots of those like saying that they're right about like how to be happy, all these like, you know, kind of like money doesn't bring you happiness. Yes, it does.

It buys a boat. Well, that's actually one of my point. It is actually a myth about happiness that money will bring you happiness. Actually, there's tons of research and literature and I've actually talked about this on our podcast that money won't bring you happiness.

The cap kind of they have is that $85,000 a year. Once you reach that, everything after that is not going to make you happier. Once you're comfortable and you have your basic needs met and you can buy like one or two things for yourself here and there and you don't have to worry about buying food. Really the rest of the money is not going to make you happy.

We see that. We see rich people who are not happy in their lives. So it's true. That's why reality TV shows are such a hit.

It's a bunch of rich people who are who pretend to be. Yes. That's exactly right. Yes.

But another myth, you're only happy if you're always happy. Yeah. Not true. I mean, I can't always be happy.

I try to always be happy though. But I get it sometimes it's like, well, I think that's the point. Yes, I'm not always happy. Sure.

But I think that's the point is that don't put all this pressure on yourself that you have to define your life as I'm happy only if I'm always happy. And so when you have bad moments when you're in the dumps a little bit, your world crumbles because oh gosh, now I'm not a happy person because I'm having a bad day. Yes. I was one of our interviews on this podcast and he said I just thought I'd put this show on for others because I was going through this and he said to allow myself to just breathe and be real.

You recognize your suffering, recognize your pain and know that you don't have to be happy every single day of your life to be living a happy life and to have a lot to be thankful for and grateful for. I think that's it though. The thankful and grateful part is it enables me to almost be happy all the time. I'm not just saying this as a front or anything.

I constantly reground myself. Because to me bad things happen to me. And they happen to you. Sure.

And for me, I always go to, well, this might seem terrible to me. And I think about people who are going through much that are personally connected with me that are going through much worse things or I've had worse trials and tribulations than I have. And it kind of regrounds me to, well, so this isn't bad so I can stay happy. And I guess maybe I try to be happy too often, you know, and maybe that is the case.

I don't, I'll try to do it, you know, in my mind. It's not too much. But I like, I try to be happy all the time because like, but I think that's, I think that's great. I think, but the point is that everybody has their own experiences of what makes them happy.

And so for you, I think like pushing yourself to be grateful and remind yourself that, you know, you have so much to be thankful for that brings you happiness and joy and peace probably in your life. Some people, nothing bad has ever quote unquote happened to them and they still suffer with anxiety and depression and they don't feel happy. So don't put pressure on yourself that the only time you can be happy is when good things are happening, another myth, waiting for things to get better to find your happiness. There's so much that each individual goes through and I think putting less pressure on yourself to fulfill what happy quote unquote is, I think can cause a lot of stress.

So just know that each person finds happiness the way that they find happiness. You find joy and peace and what brings you joy and peace. And then really, and so being grateful for you, that's that and you should keep going. For other people, it could be different things.

We talked earlier about connecting outside of ourselves. So knowing that you're not alone, that if you are going through a hard time, that there's others who are going through a hard time too, you know, we talk about how much that makes you feel better when you know you're not alone and then you'll find your happiness. You'll find what brings you joy. I think during the pandemic, you know, a lot of people had to take a hard look at that and I was just fine.

I was like, Oh, my little babies. Or if I say like, I was like, check, check, check, okay, I'm happy. Yes. I don't need to be out.

I don't need to be out of the need to be all here and make up. Thank goodness. That was like, right. And fun things like that.

So yeah, like just kind of simplify a lot of things. Yeah. But when we're going through crisis, I mean, that's another myth is when life is normal again, I'll be happy again. But know that look for it now.

Don't wait for other things outside of yourself to be better or to be normal for you to find your happiness. You can always find happiness in any circumstance. You don't need to wait for the storm to pass. You can sometimes dance in the rain.

That's even reading. No, but you know, that's the thing. I kind of live by that. And me always actually talk about that.

So, so you get caught up so much in waiting to be happy when something happens. Right? And instead of just, like I said, I'm almost 48 years old at this point. So most of my life, I know it's amazing.

My hair. You just said that on the air. I know we have confidence. You know, I am almost 48.

And I realize that most of my life is probably over. And when you come to that realization, like it just allows you to enjoy the journey so much more. Like, you know, don't waste a day. There's no point.

You know, we're on this because it feels like a shark. It feels like just a couple, you know, two or three years ago that I was in my teens to me. And so to be able to, it feels like it's too. You were happy to confirm that's not the case.

According to my colored hair, it is. So, but my point being is just, you know, it makes you enjoy the day, even though I know, you know, a year or so, this is going to make my life hopefully a little easier or this is going to happen to make it. But whatever that is, it's all about just enjoying that day and looking for the little pieces of that day that bring you the happiness. Yep.

And, you know, that makes me think I've heard from a lot of people that, you know, when something tragic happens in their life, if they have a moment of something that makes them laugh or happy, they immediately get this like flood of guilt and shame for feeling happiness when they're supposed to be going through the worst times of their lives. I think to your point, just live in it. Whatever is happening, just live in it. Allow yourself to be happy.

I think that's one of the ways we can be happy is knowing that you deserve to be happy. Don't worry. Yeah. I was an older term.

Not as day of myself. I like that. Maybe you have a topic you'd like Sarah to cover, email us info at thegiftedlife.org. And our question and answer segment, Joey, we have one for you.

Who regulates OPOs in the United States? Oh, wow. That's a big topic and a hot topic these days because it is somewhat possibly going to change at least been some of the things that have been funneled my way as of right now. So HRSA, Health Resource and Services Administration is a branch of the Department of Health and Human Services, HHS, basically the government, the arm of the government that oversees all of healthcare, right?

So HRSA is an offshoot of that. And they regulate the whole recovery and transplant process through OPT and the organ procurement and transplant network. We know OPT and better as the contract agency that owns the contract right now, UNOS, United Network of Organ Sharing. So that's how that ties in.

So this all came about from NODA, the National Organ Transplant Act in 1984 because at the time there was no really regulatory body. So I'd spoken about that in a previous podcast. Now, that kind of started the formation of the OPOs. We had a couple OPOs, Organ Procurement Organization before, but really not hardly any.

So that kind of put some regulation in the list and started forming basically this whole OPT and Organ Procurement Transplant Network that we now follow kind of as our guide in our rules, policies and such. That's mouthful. Yes, it is. We did a really good job with the acronyms too.

I'm glad you did that too to walk us through. There's HRSA, HHS, a lot to know. You know CMS. I've heard of CMS.

How are they involved? Oh, yeah. Can't forget CMS. So CMS, of course, is Center for our Medicare and Medicaid Services.

And they are the ones responsible for conducting reviews and site surveys for all the OPOs and the transplant centers because ultimately they play a big part in the funding. Good to know. If you have a question, give us a call. 504-648-3477.

In every episode of the Gifted Life, we honor a hero. Today, we honor Ivana Butler. And we learn about Ivana from her family. Realization is starting to kick in, that we have to say goodbye to a close friend, trying to ignore what took place, but the truth is staring in my face.

We were all just laughing around, but when this happened, I could not stop begging for your life. It's not going to be the same. Now I'm looking at a picture of your fighting hands. I know you had to go, but it doesn't make it any less painful.

I didn't know you as long as everyone else, but you still became my little sister. I just hope you know when you took your last breath, your big row, going to miss you. Love your big bro, Chris. Ivana was a three-year honor graduate of Connections Academy.

She'd obtained a full scholarship to any state university in the U.S. Also, she was a talented artist and a certified genius. And now we pause and say thank you to Ivana for the gift of life. And that is episode 168 of the Gifted Life.

Thanks so much for listening, guys. And remember, if you're not registered as an organ tissue and idoner, you can do so anytime. We hope that you do. RegisterMe.org.

Thanks to Carrie Hopson, Pope, for coming in and sharing with us with initiatives and everything going on with the Alliance. And it's just amazing when you think about this that since their existence, they've helped organization rates increase by 55% from over 8,000 to over 12,000 in that timeframe. So great job by the Alliance. It's always nice to have them in our corner to help with all those initiatives and those education pieces that we're so desperately needing.

Yeah, good work, guys. The best place to find us on 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, iHeartRadio or Apple. If you do listen on Apple, please leave us five star ratings so that others can find us.

And did you know we're on Facebook? The Gifted Life Podcast. Give us a like there. Follow us.

And you can also follow us on Twitter and Instagram at GiftedLifePod. Thanks for joining us, guys. We hope that you continue to do so and help share this podcast. But our main ask is that you go out and do something you would normally do to help us make life happen.

Bye-bye. 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 Heins, producer Ishelan Caraway. Intern is Rebecca Rannam, and we are recorded, engineered and mixed in our Covington, Louisiana studio by Troy Perez.