Donor Family Aftercare

Hello and welcome to the Gifted Life podcast where we have conversations about organ, tissue and ideonation. I'm Roy Steele. I'm Joey Boudreau. I'm Sally Gentry.

And we are so glad that you tune in to the Gifted Life lots to talk about today. We are teaming with our team members in Indiana. You know Indiana, right now? It's part of the industry.

Yeah, it's interesting. Yeah, I'm going to find out about all the innovative ways that they are reshaping their aftercare program. And guess what, Laurie? We also have some tidbits for people about writing to their loved ones recipients.

Oh, that's a good one. Yeah. You're stuck and not quite sure what to say. We're going to help you with that.

It's right here on the Gifted Life that and a whole lot more. And we hope, it's our hope that you share what you hear here on the Gifted Life. We try to make it as easy as possible for you to share. Absolutely easy.

It's easy, easy, easy. Somebody smart once said that. Yes, I did. The Joey Boudreau.

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We are excited here on the Gifted Life to have a friend join us. Really Sally Seren, which means she's our friend too, huh? Oh, absolutely. So sweet.

Portney Talada, she's the manager of Aftercare Support Services for the Indiana Donor Network. So I see why you guys are so close. Similar, right? Yes and D.

Similar services. We're in Louisiana. She's in Indiana and she joins us now. Hey Miss Courtney.

No, actually Lori, I know Courtney more than just in this role. We're both Indiana people. That's right. So who's your yes?

Oh, Louisiana now. I know, but you know, and actually I've known Courtney longer and I've known you. So when I heard a little bit, hold on Courtney, hold on. It hurts a little bit.

But she tells us such great things about you and the things that you guys are doing in Indiana. And so of course we had to invite you on because we want to know what's going on there as well. We see Sally with our families. She's part of these families.

You see the relief, the calm on their faces. And I'm just so grateful that you can do that for families in Indiana. So we know you've been at the Indiana Donor Network for 15 years. Is that what you're saying?

Correct. I'm thinking we just had a podcast and we talked about changes over the years here at LOPA. So I'm sure the same there in Indiana, huh? Yeah, absolutely.

I've seen a lot of growth. It's been wonderful. So what brought you to the Donor Network? So my journey with donation and transplantation actually begins before I was even born.

If you can believe it or not. My mom actually has a case of strep throat when she was 15 years old and that spread to her kidneys. And so she became a kidney transplant patient at a young age of actually 18. And so kind of long story short, she received two of her transplants before I was born.

So I wouldn't be alive without donation. And she received a third transplant when I was 10 and she's getting ready to celebrate 26 years of having that kidney this summer. Oh, that's amazing. Yeah, absolutely.

So donation and transplantation is near and dear to my heart for sure. Yes. Well, so what keeps you going after all these years? I know what you're just talking about your mom.

But how do you do this? I honestly, it comes from the heart. As you know, working in this community of donation and working with the families we take care of and support every day. It really has to come from the heart.

And there's not a day that I wake up that I am not excited to come to work and that I'm not anticipating who can I help today, who can I care for today and the best capacity possible. Oh, great. So I think that's really what keeps me going. You know, it's very satisfying to be able to help people in that way.

So how many people work with you to help provide these services to families? So currently we have myself and one after care support coordinator who are full time. And then we've got three other team members who are actually family services coordinators who were supporting us part time. So there are a couple of us who are kind of chipping in as kind of like it all.

It takes a village. You know, that's kind of how we feel about caring for our family. So Courtney, what I'm wondering is what do you all do that may be different that you're aware of as far as providing services to your donor families? Right.

So I don't know how different we are simply because, you know, I'm here in Indiana and kind of feel like we're just doing the we are doing the best that we know how and we're always trying to take outside the box. So there might be other OPOs within our role who are also thinking this way. I just don't know it. But what we have shifted our focus from is, you know, we do work for OPO.

So donation is central to everything that we do. However, with our donor families, it's so important to meet them where they are and to start with their needs first. So when families come to us, their problem is not. My loved one was a donor, right?

That's a positive thing. That's often the very positive that they hold on to after the death of a loved one. Their problem, first or foremost, is my loved one died and that's where we need to start. So we have kind of shifted our focus from not only donation, but first of all, providing grief support, first and foremost and saying, you know, what do you need at this time?

How can we help connect you with resources in your area that will help you move through this grief journey along with then secondary donation education because they go hand in hand. It's just it's important to know where you should start with a family and not necessarily just start with donation right off the bat. We're also letting families control the amount of support and the level of support that they receive from our team. So it typically was a standard, you know, 13 month aftercare support program.

However, now we're shifting our focus to letting families tell us what they need. So for example, do they want to receive detailed recipient information? This is something that we've always shared with them automatically. Well, recently it came up during our donor family council meeting that maybe families are not ready right at the time frame that we send it.

You know, there's what is it about four weeks? It's a magical number. So maybe they want to wait and they want to receive it six months from now or maybe they don't want it at all. So we're letting families kind of control little aspects right now, which are actually big aspects of their aftercare journey with us because we shouldn't dictate what they get in the way of support and resources from our team.

They should be able to have that control. So when you're talking about the letter, now this is your initial letter after. Okay. Okay.

So, you know, we're still sharing with them, of course, which organs were recovered and you know, because they have a right to know that and we want to make sure that they are educated and they know the outcome of their loved ones donation. Is that my letter or is that your staff informed them by phone or? It's actually by phone. So that's the thing that I take care of by phone.

Okay. So when we do that, we're calling them to introduce the aftercare program to introduce our team so that way when they start receiving information from us in the mail, it's not a surprise and they already know to kind of expect it, right? So I'm calling and introducing myself really checking in on them is the most important thing and then sharing with them the final outcome of their loved ones donation. So which organs, which tissues were they able to donate?

Then along with that, I'm sharing with them the age by decade of the recipient as well as the gender of the recipient. And then at that point, I'm asking them, do you want to receive additional information about these recipients such as their marital status, what hobbies do they have? Do they have children, those kinds of things? And most families often, however, we have had a few families who say, no, I'm not ready for that information just yet.

So we're respectful of that decision. Do you actually do any face to face or group work or anything like that? So not yet, but I just got my license and social work. So now after my maternity leave, I'm planning on being able to offer those.

So right now, though, we're able to connect them with resources in their area and we use something that's called a next of Ken Geo map. It's something that's really pretty cool and innovative. This Geo map is a website that works with all of our data within the organization. So our organ team is able to look and see how many organs have been able to be recovered year to date so far.

So I thought, how can aftercare use this as a tool to our advantage? So what we do is it actually takes all of our next-up-kin addresses and puts them into literally a map of the United States so we can see where they are located and serves a couple different purposes. So this way then, if we had a family, for example, in Louisiana who wanted to connect with an OPO or who wanted to receive grief support, then I could connect them with Sally and say, although your loved one was a donor in Indiana, you are actually closer to my colleague Sally Gentry. And I would love to connect you with their OPO for different advocate opportunities or different resources in your area.

Yeah. And so then if someone from Indiana calls and they say, hey, I would like to be connected with a grief support group for maybe a widow or widower and I live in South Bend, Indiana. And we actually have all of our grief support resources populated into the database as well. So I can look and see location proximity-wise, which grief support resources that maybe fit that specificity and need are closest to that donor family.

And I can connect them that way. Courtney, I think you are being pretty modest about what you guys are doing that's different from other OPOs. Obviously, I know that you are only located in one and part of one OPO, but clearly doing the geo-mapping and personalizing the app that care like you guys are doing. That's very cutting edge for the industry from everything else that we've seen.

So I applaud you on that. We were always looking for keepsakes and things for the donor families in that immediate time where there's experiencing the most acute grief for a couple reasons. One, give them something of comfort, but two, they can have something in memory of the fact that they were able to give life. I've heard about you guys doing something that was a little different called the Reds of Compassion.

Can you tell me a little bit about how that started and what that's about? That's where we began our Threats of Compassion program in 2010, I believe. And it actually came to us from an idea that one of our organ coordinators had as he came from one of the Wisconsin OPOs. So I can't take credit for Threats of Compassion being our program.

And we simply took that idea and adapted it to what our program needs would be here in Indiana. And so when we began, our goal was originally to have 300 comfort shaws created by volunteers who either did or did not have a connection to donation. And so they would either crochet these comfort shaws. And we would give them to our organ donor families while they were in the hospital with their loved ones.

And the whole idea is that hospitals can sometimes be cold and there's not a lot of color. And we just wanted to be able to give them something that was colorful and they could wrap around themselves. They could also take it then with them after the donation and be reminded of that time with their loved ones. So now we actually have about 1500 shaws on hand.

So you can imagine our programs have grown so much. Original goal was 300 and now we've got 1500 and we are giving them to our organ donor families while we're in the hospital with them. And then we're also offering to send them to our tissue donor families. So it's important to us that we treat and we care for all donor families in the same capacity.

So donation is donation. And to us that means organ donation is donation but then also those families who have the intent and who are not able to become donor families for whatever reason, so if it's a medical reason or circumstantial reason, those kinds of things. We still want to support them. So threads has grown in a capacity that I could have never anticipated which is really cool.

I'm sitting here, I'm listening and you're so calm and for those of you who don't know me my mind is a mile a minute so is my mouth most times but that's how I feel talking to Sally. I'm like, oh me down. We always say there's a special person for each job like me and Indiana found it, Louisiana found it on the right track. She didn't pay me Courtney either.

I'm a slob blushing here. There you go. And then obviously we love what you guys are doing in Indiana and Joey was talking before about some race cars and things like that. And I said, what about that?

Yeah, well so being an avid sports guy. They don't know that around here of course. As I stayed up till one o'clock in the morning this morning watching basketball. But this weekend I was watching recently I was watching a Talladega and I saw one of the cars there was a Donate Life and it was in Alabama, Donate Life Alabama car.

And on it saw a bunch of handprints and it reminded me of a presentation that I saw one of your colleagues there, Steve Johnson. You have one of our previous AOPO conferences about the Driven to Save Lives initiative where you guys are honoring heroes and of course even some of those who are waiting. Can you tell us a little bit about that? Save Lives is also kind of like we were just talking about the rest of Compassion.

It has grown in capacity that our organization probably could have never anticipated which is so wonderful. So Driven to Save Lives was actually born out of Justin Wilson who was an Indy car driver. And he became a donor at Pocono when he was an accident in August of 2015. At the time his brother, Stephen Wilson lived in Indiana was also an Indy car driver.

And he thought I've got to do something to honor my brother's legacy. And so our organization was in contact with Stephen and through our partnership with him Driven to Save Lives has grown in magnitude. Not only in Indiana, as you know Indiana is known for racing and Indy car especially right here the 500. It's the month of May so we are gearing up for that here in Indianapolis.

But we wanted it to be something that was known across the United States and could be really taken to any speedway and any racing and any capacity. So is it dirt track racing, were they racing midget cars or is it Indy car or is it NASCAR or is it all different levels of racing. And so our organization being here in Indiana has really been embraced by the Indianapolis Motor Speed with open arms to promote donation. And it's something that we can all kind of get behind because who wouldn't want to save a life if they had the opportunity.

Nice. We like that and of course we watch the headlines as well and we always get excited when we see the donate life emblem, the handprints we all know what it means and we love the partnerships as well here in Louisiana. We love our partnerships too and we know that it takes us far. So you told us a lot of information.

I'm sure there's lots more to get to. We hope that you're going to come back and join us here on the gift of life. Heard you saying maternity leave earlier. So good luck with that baby.

Thank you very much. I appreciate it. There you go. We want to tell folks how to find you how to find more of what it is that you do.

So Indianadonornetwork.org, Indianadonornetwork.org and there's a tab there for folks to find what you're doing right? Correct. It's underneath of the donor family section. So easy to remember, Indianadonornetwork.org.org.

It has been a pleasure. Thank you very much. I appreciate it. We'll get to life's mental health minute.

This episode we talk about writing to recipients. So something we know a lot of you can relate to. Yes, and of course we've got our very own family services guru here with us. Who's that?

Sally. Sally. Sally. She's going to tell us all about it.

Well, you know, Joey, that's one of the questions that we get quite often when we're talking with donor families. They say, well, I don't know what to say. I want to write to them. I've not heard from the recipients, but you know, write to them and what am I going to say?

Yeah, what do I say? Yeah, that's it. And you know, many times for all of us, it's very difficult to write something about someone that the other person has no idea except what they help save their life. And that's quite a feat for many folks.

Okay. So one of the things that we tell people is share information about your loved one, just like you would with say your next door neighbor. What are their interests? What are their hobbies?

What did they like to do in their spare time? Were they married? Did they have children? What did they do?

Or you all do together as a family? And that's really just kind of a newsy sort of way of sharing information about your loved one. Sometimes it depends on when we send the mail out to the transplant centers because I want you all to know when you're thinking about writing that we don't have direct communication with the recipients. The first letter does have to go through the transplant center.

And then many times that opens up the door where you all can communicate back and forth with the recipient and or their families too. But I think it's a very difficult first step for many folks because they're just not quite sure what if I'm saying something I shouldn't be saying to the recipient. But then on the reverse side of that, we also get the question from recipients, what if we're saying something to the donor family that's going to cause them more grief, if you will? And we tell them the same thing.

You know, just speak from the heart, share a little bit of information about yourself. Don't do a lot of self-disclosure to begin with because if the time comes that you're actually able to meet one another, then you can share much more information and it will be more like your extended family. So that's what our recommendation is. If you have a problem knowing what to say or how to say it, please contact us.

You can go to familyservices at lopa.org. We'll be glad to help you through this process. I think that that can be very beneficial. It seems like that's very beneficial matter of fact for families to be able to share this information.

That's not a quick question because I've been asked many times. Is there any censorship or anything because it changes hands? They send it to you as family services and they goes through the transplant coordinators and social workers there at the transplant centers. Is there any censorship that takes place there or limitations or how's that work?

Well, when we receive a letter from a donor family, what we do is we just quickly look at over just for content. We do not edit anything. In 18 years, maybe once or twice, there's been some language that might have been not quite appropriate, but most of the time people are very sensitive and respectful when they're writing. But that being said, if they want to include their name, address, email address, phone numbers, whatever they're comfortable doing, they certainly may do so.

But there comes the button. When it goes to the transplant centers or to other agencies outside of the state, we can not guarantee that they will not edit the correspondence because many places, they're more concerned about confidentiality. So they do not share the name or address or any kind of contact information. So people should be aware of that and we do let them know when we speak with them on the phone about writing.

And we've seen some just reading cards that were short. We've seen letters written that were pages long. And then we also see families that come away wearing all the same color because that's the love one's color, the recipient wears it. It's neat kind of what you discover about certain people through this process.

That's pretty neat. Loba.org, I love that we have resources available because when we get asked out in the community, we can send in their one stop shop. So Loba.org, there's a family services tab. So writing to a recipient, writing to a donor family, you'll find all those resources there.

So good one. All right, we're coming to gift in life. As we do in every episode, we honor a hero. Today we're honoring a hero from the Indiana donor network.

And his name is Chris Curry. This story comes to us from Chris's family. Losing a love one is difficult, but it's comforting to know that Chris lives on. Giving the gift of life is the greatest act of love and selflessness that any person can give to another.

It was around four in the morning when we gathered at the emergency room. The hallways of the ER were desolate. It was later moved to the ICU when we sat in the waiting room, while doctors ran tests searching for brain activity. Round one, the following afternoon, Dr.

walked into the ICU room with 25 of our closest friends and family surrounding his bedside. The news wasn't good. The brother, son, uncle, father, friend that we all love so much was gone. Our family gathered in a hallway where we decided to donate his organs.

We felt it important for Chris to live on in the lives of others. We wanted to give other families a chance to keep their loved one, but they would not have to feel the pain we were experiencing. It was in Chris's giving spirit that he, unbeknownst to us, had already registered as an organan tissue donor with a BMV. Anyone that ever met or knew Chris that his smile was infectious, his smile could shine a light in a dark room.

He was hardworking and had a vision and talent for interior and interior design. He was a member of the Indianapolis Downtown Optimus Club and played the Easter Bunny every year for the clubs and the Child Project. He was so excited that he and his girlfriend would be a complete family and would be giving her daughter a sibling. His son is now a 10 months old and is a spitting image of his dad.

Being such a big kid himself, Chris thought the world of his children. When we heard that there was a match for Chris's liver, it held a special place in his mom's heart as her grandfather had passed away from liver cancer. Hearing that the transplant was successful brought tears and comfort to our family, knowing that Chris was living on through someone else. From the beginning of this new journey, Indiana Dona Network showed our family the utmost care, compassion and guidance with each and every step in decision that needed to be made.

We were kept informed throughout the entire process. Never having been down this road before, there were many questions and concerns and Indiana Dona Network answered them all honestly and compassionately and cared for Chris as though he were a member of their own family. Losing a love one is difficult, but it's comforting to know that Chris lives on. Giving the gift of life is the greatest act of love and selflessness that any person can give to another.

Although Chris was taken from us tragically, he was still able to pass on the love he had for others after he was gone. And now we pause to say thank you to Chris for the gift of life. In our question and answer segment today, we always love to hear from you. This one came via email, info at Lobotautawork.

Yes, we like hearing from folks. And this question is in 1992, I registered to be a donor, I think. And also my driver's license shows me as a donor. Do I need to do anything else to assure that any and all viable organs are used at the time of my death?

Well, first of all, thank you. Thank you for wanting to say yes. Thank you for wanting to help save lives. So if your driver's license shows that you have that pretty red heart, I'm assuming you're in Louisiana, other states do differently than you are a donor.

But our most important thing that we talk about is to have that conversation with your family, your next lifkins. That's right. That's something where to happen to you. They need to know what your decision would be when it comes to donation.

So be secure in the fact that you are on the registry, that you will save lives, but know that we're going to need that family support. So it'll be a 10 second conversation. It could be over dinner. However, you want folks talking?

Absolutely. So we appreciate the question. Maybe you have a question. You want us to expand on something info at lopa.org.

Or you can always give us a call. That number is 504648347. And that'll do it for episode 85, guys. What a world when we learn from Indiana.

It was good to hear from my longtime friend, Courtney Toulata from Indiana Donor Network. There are some interesting things that they're doing for their donor families. And guys, we're in the middle of summer. Look us up on our website, lopa.org.

On our events calendar, we've got tons of events still going on. Even though it's summer, we like to see you guys out there. We've got the SFS coming up. Yeah, and we love that because we get to meet so many people and then so many more people join the registry after learning the facts.

It's just that simple. And then you guys know about this special episode coming up? I think it's just a little bit. Oh, man.

What are you doing? What is that? It's a little bit different than you're used to hearing, but I think you're going to like it. Yeah, I think so.

So you're going to have to stay tuned for that. I think you're going to have to stay tuned for that. I think that you're going to have to be the best out of your life. I'm going to have to stay tuned for that.

Thank you. Thank you guys. Thank you. For this episode of the Gifted Life Day today, you listening right there, we want you to go out and do something that you don't normally do to help us make life happen.

You can do it. You're part of the team. And man, we appreciate you listening right guys. I'll start with you.

Biggiftitlife.org. Thank you so much. We'll talk to you next time. This is a production of the Louisiana Organ for Human Agency for Lopa.

Gifted Life is hosted by Lori Steele, Joey Boudreau and Sally Gentry. I Troy Perez.