Hello and welcome to the gifted life podcast where we have conversations about organ tissue and I donation I'm rice Yeah, I'm Joey Boudreau, and I'm Sally Chantry and we are so grateful that you choose to tune into the gift life really Thank you very much on today's episode There's a video going around this one's gonna inspire you right and it's a bucket list and it's tied to donation and has been seen Millions of millions of times it's something you're gonna watch again and again So we're gonna talk about that the reason behind it and the impact it has had incredible And then we're gonna talk about the many facets of you know the united network for organ sharing and our family support segment We're going to talk today with Ricardo Fernandez. He's a two-lane transplant social worker He's gonna tell us about the type of support services that are offered to potential recipients on the waiting list as well support services After someone's received a transplant so we look forward to talking with Ricky Yeah, we'll also honor a hero all that and more here on the gifted life We ask you to please share what you hear today and we try to make it as easy as possible Of course it is you can easily find us on iTunes Google play or whatever podcast app you may prefer And maybe you're on social media donate life Louisiana if you're on Facebook Twitter and Instagram We're at donate life LA a lot of what we talk about your feature here. You'll see on those sites pretty fun And you can also reach us by phone 504 648 2477 that's our hotline. We want you to call in interact with us.
What are you thinking? What do you want to know about? You can help us script our next podcast. We may even use your audio so get involved today Let's get going Joining the podcast now Mike recindo.
He is the director of communications for you knows which stands for the United Network for Oregon Sharing and you've probably heard us talk about you. No, so our presentations are here on the podcast They howl and manage the donor registry list welcome Mike. Thank you. Great.
Hey Mike in previous episodes We've talked about you know a little bit and and obviously one of your primary roles is that list You know managing the wait list that everyone talks about and knows about but clearly you guys are much more than that Can you tell us about you knows? I can recipient Michael and scientific are all equal then we we talk about the list longer so they need it our objective is to save as many lives as possible So someone who's on kidney dialysis that could secretly live on dialysis for many more years Obviously somebody who's predicted to maybe have 10 days left is going to get that organ first Even if the person who is healthier is down the list longer So it's really kind of a pool every time an organ becomes available anywhere in the u.s We run that match. That's a very sophisticated computer based algorithm. We're constantly Refining it based on feedback from the transplant community the scientists the doctors always looking to see how we Can save more lives by doing more transplants by making that system is efficient as we possibly can so ideally You know you want to have the best match for that particular donor So as he said it's not real linear sometimes you'll see patients higher on the match than others And there's so many things that go into each organ you mentioned kidney, you know and even with hearts and lungs There's a lot of different cool morbidities or demographic type things are simply geographical obstacles that go into the formula for the list And myself Mike as the she clinic officer I deal with it more on the clinical side, but I do have a lot of dealings a lot of workings with you knows Especially from the policy side So let's a little bit about how you guys are involved from the policy standpoint as policies, but when I say, you know Set the policy that's not you know staff setting the policies we have doesn't pick some of them are Professional conduct, but so we look to the experts in the community So there's always a donor voice at the table, but also the medical experts the transplant professionals who may not be medical But maybe no more about the logistics or or the different medical dimensions So all of these people contribute to months or even years of deliberation these committee members as they continue to refine it And in some cases do scientific modeling on these things and ultimately before we put it in A formal policy will go out to the public for public comment.
We're actually in a public comment period right now Where several of those policy changes are out there on the internet right now for the public to weigh in Once of those public comment periods are done the responsible committees and our board will take into consideration that comment Sometimes it might raise some new issues So maybe back to the drawing board other times it might be a subtle refinement for what they're doing And then it ultimately goes to the board again composed of Members of the trans community to vote on it and put it in the place And then once these things are implemented it might mean that we need to rewrite code In terms of how organs are allocated it might mean we need to reconsider how the policies are monitored and even enforced We have a member quality department that works with the different transplant hospitals in order procurement organizations on on their approaches to see if we can help things get better And share best practices and occasionally there's things that aren't going according to policies So they are also there to monitor that and if we detect an organization depending on the severity of it You know sometimes these things are accidental sometimes unfortunately Maybe they're not but it's our job to bring those to the organization's attention If it's something great we have the ability to ask them to stop doing transplants until we work it out But usually I have to peer review process so it goes to other professionals who view the incident It's even anonymized so they don't even know which hospital or procurement organization they're evaluating They're just looking at the facts and stuff and so that's kind of the policy and governance functions And we're constantly looking for new perspectives new members for those board committees and then ultimately board membership We also have regions throughout the country So several times a year we'll hold meetings in these different regions where the trans-line professionals and recipients can come together and provide feedback and talk about those type of things One of the things we're currently dealing with is how we might be able to bring more equity to how Livers are allocated throughout the country and that's been a journey that's been going from all over the country Yeah, in a picture we're hoping to go public comment on that with some proposed solutions this summer Gather the feedback from those and hopefully be able to actually have a board vote by the end of the year probably in December So we're hoping for and that's the amazing thing You know when we've talked about you know as before a lot of times we talk about it's you know Like we said the list even though obviously it's not linear But there's so much more that goes on and not just a list and not just policy You know as as Laurie's brought to my attention They've got campaigns on how to be a donor or pushing the donor registry Yeah at the same time that you guys were talking about all those policies and procedures and things you also help to educate the public And you're pretty good at it. I mean I'm referring to uh this video that's going around You knows that org slash bucket list if you haven't seen it You can also go to our facebook page donate life lisa and it's something that we recently posted But it's about the bucket list and it's this video that just draws me in each and every time because it's so well done Mike can you tell us about um tell us about the video and the reason behind that video so powerful? As an offer profit, we don't have money to buy advertising So we had planned on doing some things where maybe you could do some busboards or banners and airports and things Our objective is we wanted the public the more people become aware of us and one of our mantras is you can't trust what you don't know So we wanted people to become more likely most people directly touched by transportation know about us But there are millions of people who are potential might be more inclined to check that box at the organ and tissue donor And so that was our objective is to raise and hopefully inspire people to support So again, okay, let's do some print or transplant field in Australia and even how large this market was I had this neat idea to create base of the thousands You know millions dollars to produce typically that's not money we had and so initially his name is Damien too good He's out of Australia and so we we told him that great idea Damien. We don't have a budget Always the case right?
Yeah, he didn't have a budget either So he approached some different national and international agencies One of them got all excited about it said they would and they said they wouldn't and another one got excited and said they would and then they said they wouldn't Six nine months of that dance and we finally got to the point was darn, you know We can't get a national ad agency with those kind of resources to do this for us and Damien I were brainstorming like well Have some money set aside to do this print campaign. It's not under the thousands of millions of dollars But it's money we set aside to you know They're printing of these banners that could go up in airports and shopping malls and stuff And so we put our heads together and said okay If we can pull it off that way and in large part due to Damien two good efforts of colonists and favors and then ultimately an international ad agency called Publicies calling in some favors. We were able to get producers writers actors all these folks to either donate their resources or deep-count it So we were able to pull off this phenomenal production fraction of the cost and with amazing results But to the story itself, which is the really neat engaging point and a lot of credit to Damien for piecing it all together There are numerous stories actually around the world of these were inspired by stories in the US where we'd heard of it and particularly Damien had heard of Ordered recipients hearing that their deceased donor had had a bucket list and so in honor of their donor They were gonna take that bucket list and fulfill it What a neat story to show how the gift of life Damien being an advertising professional knew that if we just hit all the sad aspects of it people would probably tune out and turn off and knowing that Source attention span see I see that you know, we've got to do something that gets people's attention keeps them engaged for 30 or 60 seconds that we have it there And really touches their heart and very authentically everything we do is authentic. We're not making any of this stuff up Obviously we got actors involved to play the people and it's inspired by real stories We didn't try to pick a real bucket list or a verbatum But I do have a clincher story in the end that we actually are imitated life even more than we knew Get to that for the end, but it's needed for production came together one of the gentlemen on camera in the spot turns out He was just an extra but he had a double blood transfer There on that he was one of the actors in the scene where it looked like they're at a youth hostel and they're playing basketball and stuff He's on the camera with like strawberry blonde hair So he was there and the actual gentleman who plays the lead male in the role a guy who's fulfilling the bucket list Television reporter told us a story about a young lady who was being denied transplant services by her insurance company He got involved as a reporter got the insurance company to pay for it She got a transplant but that one didn't take by then he'd fallen in love with her help Raise the funds awareness got her another one You know all these little connections that just you know, frankly, I think it was divine intervention Came together in so many semi-fictional lives again based on real things if you look at the the video clips and likes of actual news stories And one of them the new folks I think covered the fact this young man one of his bucket list items was to be a race car driver And that's that's one of the news clips there But the news station put up his real bucket list the one he'd written in his own hand And I zoomed in on it and to the effect of do more fom or be better son for mom Unbeknownst to us that was the final bucket list thing that we actually Need to take that but watch it.
You know you can't and the comments on on facebook have been just 20 million people actually share it Not only did they like it enough. They said this is really cool. You gotta watch it Outstanding we brought hundreds of thousands of people to our landing page so they could learn more about transplantation People who are following us on facebook and that's where we're always putting out of the date content sometimes It's you know content sometimes with content from organizations like yours or other news organization But that's really oriented toward the the general public is opposed to maybe our LinkedIn or some of our communications channels are oriented for the professionals and translization You know what I measure by is folks who are in my life You don't cross donation with me, but then they send me a video like that like you have to see this That's gonna inspire you and that's when I know man We got to we reached you right and so I saw that video a couple of times because it was sent to me by folks that I had talked to About donations so man that was a really great campaign that's continuing to work If you want to see it unos.org slash bucket list or if you're a fan of donate life Louisiana it's on that facebook page, too Well, we have a hey we've got this we're coming out with it free to share it if you like or not You know, we don't require some good stuff and and we viral success were trans-mind hospitals or a procurement organizations donate life organizations throughout the country We really got behind it and shared it with with your communities and your followers and understanding that you have some folks that follow this internationally We can see it was picked up in Europe and South America and Asia, Australia, Canada It was that really truly lit up around the world Well, and another way Mike that unos is raised awareness is also honoring organ and tissue donors through your national donor memorial wall And you said recently the fallen soldiers have been recognized Yeah, so beautiful it takes you through a journey of translation literally beginning with a drop of water and the ripple effect and how that Affects so many people and one of the real moving things is there's a wall a donor wall with many names of donors Now there's been hundreds of thousands of donors, so we don't have everybody for beta But we actually put a lot of effort into identifying names from our databases that represent donors just first names But it's likely that most people that come here in honor of their loved one will probably find the corresponding name or variation of that name on our wall And every now and then we're adding more and then most recently to coincide with a Veterans Day An effort that began a number of years ago by an organ recipient who received an organ from a deceased soldier really wanted to say thanks And he worked diligently to raise the funds and work with an artist to develop a really neat sculpture That's a bigger than life soldier who's kneeling with his hands forward as if he's offering that gift of life Recognizing that we've had so many soldiers that have been that generous both in our military group in the US actually that delegated in front Longstole Holly and shermany came to the dedication we had a number of family representatives from donors, but then we also had recipients there was an ABC old here who looked at look damage based on combat and received a sound along So you were here to say thank you and hearing the stories both from the donor families and the recipients who was so dutching And it's just such a fitting home for us and there's pictures and videos and news stories and stuff on our you know Start our website where you can find information on the donor more on those associate things as well so we encourage folks We also whenever we do these things are quite a live stream of my facebook as well That's great So we have thousands of people around the world following us live and then the video still there for anybody They want to go back and watch as well What a great partner i'm gonna go back and watch that video again like as it was that good You guys are great partners for us. I mean appreciate all that you do and thanks for taking the time today Thank you, all right mike with you know, it's joining us here on the gifted life We are so excited we have an in studio guest today from Tulane Medical Center.
Welcome ricky for nindiz Hey ricky good afternoon. Thank you for having me Yeah, he's a clinical social worker been doing it for a while so veteran in his ranks and he's gonna help us learn today Yes, indeed so ricky, you know, we had talked a little bit earlier about what type of support services are offered Which mind expanding on that a little bit and sharing that information? Sure, there are support services offered for both pre and post transplant recipients One of them is of course the availability of patients or families to fundraise and our agencies at a system with the process where they will guide them Give them ideas given the tools needed to go back into the communities and plan festivities or recreational activities That could help benefit and raise money for both pre and post transplant expenses I never really even thought about that as an aspect take the sound so naive, but I see fun razor efforts I see it throughout the community and of course being in the industry, you know, I always think oh great, you know But it never really dawned on me that that would be one of the aspects of you guys job in helping, you know facilitate those events Transplant social workers and financial counselors work steadily with three agencies and assist families with the fundraising process One is strictly designed to help pediatric families and their children is called the children's organ transplant association or coda Another that was one of those is called help hope live and yet another one for notes It's called the national foundation for transplants. These are professionals that will guide loved ones or other caregivers within a family To focus on these efforts and the communities that with church groups things like that So along with that then when somebody does get listed and they're there in the hospital waiting for that organ Do you go in then and speak with the families or is there a psychological that's done first?
The process is our social workers do see every patient of family that comes into the hospital They also see them through our patient clinics and that was called a psychosocial evaluation Psychological or even psychiatric follow-up is done on a referral basis They're either referred or recommended by the transplant social workers the already transplant coordinators or the physicians and For psychosocial completed where we look at things like appropriate caregiving appropriate motor transportation being not just Medicaid or public transfer but having some access to private transportation in the event that Opposian is called with organ offer in the middle of the night or holiday or our weekend or if they called in with a critical lab value That requires immediate attention. We also look at substance abuse or mental health concerns Which could all be barriers to meeting the post-care demands of taking care of the new organ And this goes for both liver pancreas and kidneys, which is what we do at Tulane The other centers that will also do hearts and lungs and small intestine small bouts So do you then do like one-on-one counseling with the recipient and their families or is it more of a group setting that people can share what's worked For them or what's not work for them Some transplant centers do offer support groups for people who have similar issues or interests or could be the bringing community speakers from the outside who may be an expert in their area for the most part most friends that center to focus on individual patient and the family concerns The social group would again assess what those barriers may be and then we will refer out to either a psychiatrist or psychiatry if needed If more of a medication evaluation is needed the importance of them maintaining the medical regimen is life or death Like some people that have high blood pressure medicine, you know They may skip a moth and you know skip from here and there if they came make ends meet in other areas But with transplant it is so important that they can't skip one single dose So you guys job in that is so vital in keeping them healthy, you know and being able to take care of themselves One of the things we do is call a telephone pre-screen and my colleague and I will assess all patients to see if they're if they're on dialysis If they're not on dialysis, we check for heightened weight to make sure they may be in my criteria But let's think we check to see if they have a caregiver access to transportation We're kind of looking for red flags before the entire process begins to know what to look for and address once they come to clinic and get a more formal Assessment when it comes to the education class, which all patients and caregivers are required to attend Yeah, so what don't you do you a lot? I deal with the volunteers too You talked about helping with those fundraisers efforts getting them out in the community give the information that they need So kind of what's the success rate or what do you base on that? How is that going when it comes to doing that in our community?
When I get the feedback is uh, nation why because I'm on a million list with coda because I do pediatric transplant as well The parents are just so grateful and many are saying that if they're one for coda that they don't know if they would have made it Because many times one of the parents may have to step away from their job either on short-term disability or resign or together To meet their needs other now. I wouldn't say critically ill but chronically ill child That demand I don't take away from being able to meet their employment and career demands So coda even though all these fundraising efforts are not geared to take the place of the income But it releases the stressors of the added hardship. Yeah, that comes with the expenses of transplant I guess you kind of introduced them to the transplant world what's out there links resources partners Which is what we try to do on this podcast as well. That's kind of what you feel.
Yes, absolutely And also though make it feel that first call will decrease so much anxiety and anguish for the family that it is almost like that Volunteer or post on the other line becomes like a family member that guide them to the entire process So somebody out there is listening and they want more information kind of where do you send them or is there a site or is there a phone number? If they wanted to reach out and maybe get more information learn more about what you talked about There's so many resources out there like for people like who want to return the work this ticket to work this Louisiana We have services so I try to assess what the exact needs are and what are their long-term goals because basically they're having new outcome in life where They they still come to the doctor regularly and having labs completed But hopefully they're offered that is is their quality of life has just improved so much and for liver transplant Just having a replacement liver no longer always feeling sick feeling like they have all-term mental status all that is corrected in time And you provide a lot of comfort sounds like yeah, good job. We try to yeah This information will be available on our website at lopa.org go to the family services tab and then you'll see support resources Well, we appreciate you coming in joining us in the podcast studio the podcast world ricky fernandez with Tulane medical center Medical social worker helping us learn here on the gifted line At this point in the podcast we do want to honor a hero and the story today is about one of those heroes who inspired you Knoses bucket list video that hero is christina chester a family found a life-changing list shortly after their 21-year-old daughter was tragically killed Kristina chesterman was riding her bicycle when she was struck by a drunk driver She died as a result of the accident Kristina's parents were cleaning out her apartment when they opened her makeup bag and found the bucket list Some of the things in the bucket list were be in four places at once go to venice learn to play chess Beat someone at chess Save someone's life that fifth one saving someone's life pretty powerful Kristina was pursuing her childhood dream of becoming a nurse She wasn't able to fulfill that dream, but through her death. She was able to save five lives Kristina was an organ donor and a heart liver kidneys and pancreas went to the people who needed them and kept them alive Susan v.
Arrow saw Kristina's story on facebook and was putting the pieces together She was the person saved by Kristina's heart After connecting with Kristina's mother on facebook Susan promised to help the family cross the items off of the bucket list As people found out about Kristina and Susan's amazing story hundreds of strangers offered to help cross off things on Kristina's bucket list Strangers have visited places Kristina would have wanted to visit Just like Susan two other families that were saved by Kristina's organs contacted the family after reading their story Many others have said Kristina's amazing story has inspired them become organ donors And you can see more about this story. You can see Kristina's picture You can see her bucket list will put a link at lopa.org Podcast and now we pause say thank you to Kristina for the gift of life And our question and answer segment today. We received this email at info at lopa.org I was just diagnosed with an inflammatory disease and wonder if I need to remove myself in the donor registry I don't want to pass this ailment on to anyone else. Joe.
No, please don't remove yourself from the registry As I've said before not only with inflammatory diseases like such as sarcoidosis or rheumatoid arthritis or just my no-larthritis It's very similar to other disease processes that yes, it may rule out one organ You know, even if you've got diabetes it may rule out the pancreas Yes, but there are still many other lives that can be saved through organ issue and eye donation So we'll evaluate when that time should come most of the time You will still be able to save many lives and enhance the lives of many others All right, there you have it. You want more or you want us to answer a specific question info at lopa.org or you can give us a call at 504-648-3477 always would love to hear from you Guys we have wrapped up yet another episode of the gifted life episode 51 in the books There you go. I know somebody was gonna have to say it. It's like just rolls off the tongue guys We had some pretty special guests in today.
We did we want to first thank Mike Prasendo We're not only explaining the many layers of you knows But also for their continued community outreach efforts that have clearly reached so many people and we thank ricki franandis for sharing his perspective from the transplant center side On what it means for transplant recipients. We just love our partners where you learn every podcast I mean hope you take what you learn and you spread it in your community That's how it works Thanks everyone for listening and we want to remind you that you can register as an organ eye and tissue donor anytime at register me.org now Go out and do something you don't normally do to help us make life happen Yes, this is a production of the Louisiana organ procurement agency or lopa gifted life is hosted by lory steel, noi buidro and sally gentry Our producers are Kirsten hines and shalon caraway. We are recorded engineered and mixed in our metery Louisiana studio by Troy Pores You