Donor Family Care Network

Hello and welcome to the Gift of Life podcast where we have conversations about organ tissue and eye donation and transplantation. You can always find us guys at thegiftedlife.org. I'm Roy Steele. I'm Joey Boudreau.

And I'm Lisa LaRette West. Whoa. Totally different name. Yes.

Yes. Of course, as you may notice, we have a new guest host for the Mental Health segment. Sarah has moved on and taken on new endeavors and is supporting families in many different ways now. So we certainly wish her all the luck.

Of course, we're happy to have Lisa and this is such a comfortable transition for Lisa because of your background, of course. Yes. I've been a licensed clinical social worker and have been in healthcare for all of my career, supporting families now for close to 30 years, starting at Transplant Hospital in Houston, Texas where I supported folks who were waiting for heart transplants and lung transplants. And now have sort of come full circle and I'm on the opposite end supporting families who are grieving and those that are giving the gift of life.

Well, we are lucky to have you. Thanks for saying yes to having a seat at the mic. Appreciate it. Appreciate it.

All right. Coming up on this episode of the gift of life today. Hear how one donor family is connecting donor families across the nation for added support. And then we're going to talk about tips on how to think before you speak and the good that can come from that.

I feel like I'm attacked right now, Lisa. Lots coming up on this episode of the gifted life guys. Hang on. Here on the gifted life podcast, we are excited to introduce you to our new friends, Larry and Vivian Lefferts.

How are you guys? Great. Good morning. We are so excited to have you on the gifted life and we love love the passion that you guys have.

We love what you're working on and we love your why. Can you tell us a little bit about why you're in our donation world and what you've been working on? We lost our son 22 year old son, John, due to an aortic dissection in 2004. And through that loss and the gifts that John was able to share, it's really inspired us to share our story with others.

We want to inspire others to register to be donors so that their families might experience the hope that comes out of donors and the blessings we have received from that. You mentioned that he was 22 years old and of course, as I understand that was around 17 years ago, there's so much change that's happened in the OPO world as far as donor family support is concerned, but there's never enough. There's always a gap. So of course, you guys took it upon yourselves to co found the donor family care network.

Tell us a little bit about that. Well, for a very long time, close to 17 years, probably, we have felt there's a need for donor families to have a national connection and a national voice to support the work that the OPOs already do at the regional level. So we were looking for a place for donor families to find comfort and healing for their grief journey. So with some other donor parents and supporters, we built the donor family care network, which is a virtual community founded by donor families for donor families.

I think one of the things that makes this so special and important is because your family and friends who've been touched by it, but in a very different way, you share a connection with other families that have lost a loved one in a way that we cannot, even though it's we passionate and we want to help, we can only help to a certain level till then you connect with people who've been through a very similar situation. It's just a different kind of help. I think that when a person has a loss, they gravitate towards people that have a similar loss in order to learn from them. And we've always felt that our son died of an aortic aneurysm, but there's all kinds of other as we all know ways that people pass away.

And we want to build this out where we have discussion forms for those that host of the ones that are fortunately a case of murder or suicide or losing a spouse or losing a child losing a sibling. All of those can be separate areas. Very, very far with thinking of you guys. So what was that jump on stage, I guess, so to speak, that you guys that kind of made you realize, hey, look, this is something we need to do.

I think early on in this was going back to 2004 and five, we kind of felt that in a negative way that we kind of felt that there was the wonderful angel singing organ donor side of it, but then what about tissues? And the way John passed away, he could not be an organ donor. He was, however, a tissue donor. And he is his donation touched 37 lives.

And we just felt that we, one of the things we could do besides helping families is elevate the concept of the, the beauty of the need for tissue donation. And I think focusing on tissue and all is a good thing. They don't always tend to fall in the spotlight. And so those gifts are precious as well.

And those families need support as well. And I think things have come a long way in 17 years, because we really push for tissue donor families to reach out to their recipients, knowing that you don't often get a response, but we actually got a response from a staff sergeant in the Marines who had his knee rebuilt by John's knee. Oh, that's amazing. That's beautiful.

And that's the only one we've heard of, but that was a pretty awesome one to hear from. Yeah. That's actually good sense. But we know that that happened.

Did you guys have the donation talks? Like did you know that he was a registered donor? Were you guys registered donors? What was that like in your family all those years ago?

In my wallet, I have a donation card signed in April of 1980. Wow. And the witness was video sign. My, my, my soon to be bride and that's a lot of that.

Great story. Yeah. We've been supporters of donations forever, but we're not one of those families that had that bellwether conversation with our, with our child about donation. We just knew when he passed away that it would be something that he would want.

And as Serendipity happens or divine intervention, when we were cleaning out his apartment, we actually found a bumper sticker and supportive organ tissue donation. Walk us through the, I know it's virtual, the donor fair family care network. So tell people where to go if they want to jump in, just figure out what it's all about. And then kind of walk us through the process of I'm a new donor family member and I'm looking for this type of support.

How does that work? The website, donorfamilychair.org. And one of the first page pages is our mission and our vision. And our mission is to honor all organ tissue donors by providing compassionate care and support to every donor family.

And our vision is to have a world where every organ tissue donor family has a place to turn for care, compassion, support, and love along their journey. There's no better way for us to learn how to navigate something and having somebody that walked that path. And this is at the crux of what the donor family care network is all about. We want to be that sounding board of that place to go for donor families that just need to reach out to somebody.

It's really amazing work that you guys have done. I have a couple points here. So one of our family support services coordinators is also a donor family member. She lost her son as well.

And she and I have been close ever since, you know, for the 20 years that I've been with Lopa. And whenever, you know, if it does come up whenever they find out that she's a donor mom, it's amazing how that conversation goes. And sometimes, you know, again, that peer to peer support is just something that can't be replaced, you know, to know that you guys are going through very similar grief journeys. And I really love what you guys are doing.

I talked about how far with thinking you guys are talking about even certain groups within the donor family group. You talked about the homicide and people who have passed through suicide and different things. Because the grief journeys are similar in a lot of ways, but of course they might have some specifics that would, you know, from a support standpoint. That is also amazing.

And then third, and I'll leave, you know, of course I'll have a question with this, but they're so so we focus here and I know every OPO is different with their family support. Our family support in general is around 18 months and it depends on families how long they may need support beyond that. But I know it's it is time limiting for most OPOs. So for you guys to be able to provide this, you know, essentially as long as they want going is just it's really amazing.

So I'm curious, you know, is there like certain timeframes that you guys are seeing families that are, you know, looking into the donor family care network or is that, you know, or is it pretty much all over the board? I would say it's all over the board. We're so new. It's not like we've had a site for 15 years.

So we are so new, but we we cover the range from people that lost them one for 17 years as long as John and some that are very recent. We have members in California. We have members in West Virginia. I mean, we try to, we, Larry and I reach out to every single donor family we have on Facebook and that's with them.

So really the circumstances are so different. So the timing, some can be brand new. And I like about that. It's a really safe place.

They can, you know, we also have a Facebook page. They can go in and look around and be part of it. And if they're not ready to put themselves out there yet, they can do that without people questioning and know what happened, you know, what happened to your loved one. And so it's a really safe place for them.

Timing is very unique for every grieving person, even in a family, you know, with, with you guys as spouses and losing your son, your grieving may have been different. I think we see that a lot of times in family. So having this for people to come in at any time is great. We had a volunteer that we worked with.

She had received a liver transplant when she was like 12 and it took her donor family 30 years and they finally did reach out. They started with letter writing and then eventually met. So you know, it can be, I tell families, you know, you may not hear right away from your donor family or your recipients, but at some point you may because everybody is just on a different timeline when it comes to grief. Absolutely.

And I think because we see so much on Facebook, it makes people hopeful. And they don't care anything. So I think it's really important that we explain, you don't know their situation. That's the best thing I've heard is you don't know the situation of the recipient and the recipient's family and where they are and where they were when that happens.

So if it's meant to be, it's meant to be and you just have to be patient. Right. But I'll tell you, they're all very grateful, haven't worked with them. They're grateful, but sometimes just so overwhelmingly grateful, they don't know what to say and it can be uncomfortable.

But it does not mean that they're not appreciative and grateful of their gifts. Absolutely. So I want to say the address again, donorfamilycare.org. I know you mentioned that you're fairly new, but you sound so passionate.

Like, I love that. Like you're making me excited for this journey that you guys are on. What reinvigorates you is it when people join in just saying, I'm here, I just want to listen. Or what is it that makes you say this was the right move for us.

I think one clear example of that is we knew a woman that was on the donate life load whose son was murdered and I came to realize, you know, our grief is ongoing, but the initial grief shock happened in and around the year after John died. But with their son being murdered, every time was in the paper, the trial, the every time that person appeals their sentence and all that, that poor family is reliving that, that horror again, because it's right back out there in the papers. And this woman is a very strong woman. And we connected her with somebody else that was, you know, that was fresh into just starting the court cases.

So, you know, we don't know what happened after connecting them, but I'm sure that knowing this person that they are going to help that family through this. So once they join your page, what's the journey that they go on? They can participate as much as they like. They can communicate as much as they like or not.

Do you guys hold training sessions or anything like that? Like walk us through what's happening now and then your vision moving forward. And as we said, this was fairly new. Well, anyone can look at the front page and some of the things that are on there, but there's a membership only section and donor families, as you know, have already given so much membership is totally free for donor family.

And we say a donor family is anyone related by blood or by love to a deceased or living donor because we know that every people have had that, those people right beside them, they may not be of blood relative, but they're there. But also we recognize that there are people that offer donations, but for some medical reason, you love when can't donate and we call those a donor in spirit. And they're also a donor family. So like Larry says, donation lies in the act of offering.

Oh, that's beautiful. You guys are such a neat couple. Can we talk about these last 17 years and then your relationship and then you guys teaming up to do this amazing project that will help so many people not only in your home state, but across the country? I'll tell you real quick and then Larry, I'm sure we'll elaborate.

We owned our own company. So we have the ability if we were able to go speak or go somewhere. We could do that, but we also were right there with each other all the time and we felt like we were never both in a pocket the same time so we could help each other out. So we didn't, we were really with each other 24 seven.

We have a daughter that was way at school and that happened, but I always look at it as we wound up being a three-legged table. When one of us was faltering, the other two would hold the other person up and that's kind of been our saving grace with dealing with it. But truly, once we realized the benefits of donation and what donation meant, it really just became our passion and the day that John passed away, Vivian, we were sitting in the hospital cafeteria trying to figure out which direction was up. But two things Vivian said were she really felt truly like her heart was broken.

And then how are people going to, how are people going to be able to meet John? How are they going to meet John? And over the next few months, it just kind of gelled into this is the way we can introduce John to people. You folks can't meet John, but we can introduce you to him and tell you all about him through talking and talking about the network and talking about everything we do with donation.

So it just really gelled. And like Vivian said, we owned our own company, it's a fireworks company. So busy in the summer, but then we were able to go out and make presentations to groups about John and about donation and the importance of signing up to be a donor. It's the last thing, it's not only for your recipients, obviously your recipients are blessed beyond their very blessed, your recipients are blessed obviously.

But the real hidden benefits, I think that's what I didn't anymore, but I think a hidden benefit is the blessings and the gifts against a donor family. It gives that donor family, gave us something positive to latch onto when we feel like we couldn't latch onto anything. You guys sound so special. I'd love to see you in action, but I'm out in the community.

I work with our volunteers, donor family members, recipients. I love to see them, they just light up when they're talking about their loved ones or their gift of life. What is it that you think when you guys team up together, you go out and you tell John's story? What is it that you think resonates with the people that you're talking to?

What works? I guess I think we have this hope that something good comes out of something absolutely horrible, something good came out of it. We've been able to speak all over the country about that and share it with people. Other donor families know so often when you meet another donor family, it's like the world kind of disappears and you zone in on talking to each other and sharing what might be the same, what might not be the same.

But I think that's it. There's like this hope that you can help somebody else find them knowing about John and how donation has helped us. You really never know what's going to happen with a connection. We were in Pasadena for the Rose Parade and went with some friends disconnected from donation to old college buddies and we went to their church with them.

The church said, why are you here? I'm not a shy one at all. So I stood up and said we were Rose Parade and we lost our son and we promote organ tissue donations so please sign up. Afterwards, a woman came directly over to us and long story short, she had lost the son and her son was married and she couldn't find out about the donation, about what he did.

She didn't know what to do so we connected her with some people with the OPO in Northern California and she found out some information but it has grown so close to her so deeply in love with her. She is now a main volunteer for the OPO in LA and we see her every year when she's decorated with flow. So and she's reaching out to others. Vivian mentioned one of our donor family care network members is from California.

She lost her son in Chicago and really didn't feel connected with the gift of hope in Chicago because of the distance and doesn't know anybody at one legacy so we've connected the two of them and they're going to get together. So you just never know what connections, what they're going to lead to. I love it. Donorfamilycare.org, it's a free resource for all donor families across the country.

Larry Vivian, thank you for sharing John's story with us and for folks across the country and we'll get to learn a little more about John and our heroes coming up right here. Can I add something else? Sure. A couple of short poems.

I just came across this online and it kind of speaks to what we do. It's by Brené Brown. One day you will tell your story of how you overcame what you went through and it will become someone else's survival guide. The donor family care network is a survival guide.

And then the other one, we often, we find friends sometimes don't want to talk about John. They want to bring him up because it's going to upset us and that's not the case. And this other is an author I've known but I have read it several to several, many times. The mention of my loved one's name may bring tears to my eyes but it never fails to bring music to my ears.

If you are really my friend, let me hear the beautiful music of his name. It's as soon as my broken heart and sings to my soul. Oh, that's beautiful. So I think those two really explain what the donor family care network is all about.

We have a host of information on there. You can go there and find membership directories and lists of other OPOs and book recommendations. And we really want this to grow if you're a donor family or loved one. Whatever your definition, if you're a donor family, please reach out and join this and give us strength.

We really want this donor family care network to be a support for donor families. And we are one of our taglines as we are the voice of America's donor families. I love it. Thank you for doing that.

Thank you for teaming up to offer this free resource guys. We are a nonprofit. We have nonprofit status. So we're always looking for sponsorships and outside, even things outside of the Oregon and Tissue Donation and Transportation field because the sponsors we get are what allow us to offer this free to donor families.

And actually for the second year in a row, and remember, we've not been around very long, we earned a platinum nonprofit seal of transparency from DinesStar. So on the front page of our website, not the members only, but the very front page, there's a button that says make a donation or someone could, if they're with an organization that wants to talk to you about a little more than just a donation, maybe a sponsorship, they could always contact us through the contact button on the page. Because the more sponsors we have, the more donor families we can reach. We want to connect to an advocate for donor families.

Donorfamilycare.org. Check it out. Here on the Gifted Life Podcast, it is time to take a moment for mental health. Let's kick off our first moment for mental health with Lisa here.

What you got, Lisa? Well, something I think that I definitely need to work on and continue to work on and many people do. It's learning to think before you speak. Oh, I felt that.

And look, but not just in our personal life and in our professional life. And it's skills that we can learn. Before you say something, there are five things that you should stop and ask yourself. Is what you're going to say necessary?

Is it helpful? Is it the truth? Is it inspiring? And is it kind?

Now that's a lot to remember, but basically you just stop and ask yourself, do I really need to say this? It's sort of learning to put our brain into gear before we put our mouth into motion. I have a joke over here. Some of the people that have been working with me for a long time with the Joey Paws for years because it's a lot of difficult things that are presented, right?

And we're trying to help navigate difficult situations. And so I always pause before, and so on the other hand, the phone, they say, is this a Joey Paws or did I lose you? But it's good to have a little bit of framework for, normally I do try to, in general, think of, for the most part, those type of things. It's good to have that framework there like that.

Yeah. And we deal with so many different personalities when you started talking, I started thinking about my children and the imprint that I'm leaving on them. So I do the same thing like at Paws and like, I want to be constructive. I don't want to leave them with her feelings or anyone, you know, for them.

That's really nice. And especially depending on the topic, sometimes my mind just starts running and I think of all these things and I want to say them, but sometimes it's not necessary for me to say everything that I'm thinking. So when we practice this and we learn to do this, it does help build stronger relationships and we have more meaningful conversations. So it helps us unlock opportunities.

And if you've ever been in a work situation where you've said something and you wish you could, you know, rewind that like we can do in this podcast, unfortunately we can't do that in real life. And so you might have missed an opportunity for something because you said something you shouldn't have. You can't put the toothpaste back in the tube. That's right.

Yeah. It also reduces regret because a lot of times, you know, I'll say something and the minute it comes out, I wish I hadn't said it. And then I feel bad and it causes regret. Like you said, you don't want to leave your children with hurt feelings.

And sometimes it's not about what we say. It's about what we didn't say that we should have said. It can lift spirits, you know, when you invest in your speech, sometimes it can help lift people's spirits. It also helps us become very conscious and we learn how we are reacting to things.

Over time, it will strengthen our observation skills. We learn to be more in tune and carefully observe every detail of everything going on around us. Yeah. I think I need to slow down because I'm always like fast, like we have to fix this fast because there's so many tasks on our plate.

I know, especially for you, Joey too, and you, Lisa, that we try to get all these things handled but taking a breath or taking a pause. That sounds like a good thing to do. It also creates wellness because studies show that clear and organized thought processes is one of the first steps in ensuring overall wellness of your heart and your mind. So it's something we need to learn to do.

And there are things we can actually do that help us with this. You can filter, observe, use simple language and practice. And they say, they say there's something called mind gem and playing games, playing games like chess or bridge or some of those games that make you think can help your train your brain to do this. It exercises the mind.

We also need to learn when we make a mistake and accept that and apologize. And consider our afterthought. So you have this conversation. Maybe you didn't stop and think enough.

You need to consider that and kind of review that so you can learn to next time. So you know, you get a good person. Yeah. Pause.

Go back to those first five questions. Is it necessary? Is it helpful? Is it true?

Is it going to be inspiring and is it going to be kind? And I think if we all learn to do that and work on that, you know, we'll all just have a more peaceful and happy life. Yeah. It takes some practice for some.

I'm making a list. All right. Thanks, Lisa. You have a topic you like us to cover here at the gift of life.

All you have to do is email us info at the gift of life. Don't work. In our question and answer segment, our question here goes to you, Lori. So how can I reach out to my heroes recipient?

I love that. I love that people are thinking about that. I get that question a lot out in the community. So basically you're listening outside of Louisiana.

You can contact your organ procurement organization, your OPOs. We like to call it in contact the transplant center of your recipient and want to contact your donor family. And how it happens here at LOPA is such a great process. First of all, if you have a pen and a paper, you can write this down info at LOPA.org or family services at LOPA.org.

We have some special people who are putting some special positions to help connect these families. They even have tools to help you write, which is a lot of people, they say that kind of stops them because how do you say thank you for this gift of life? So it's all on there. You can do it at your own time.

You can do it at two in the morning. You can do it 11 o'clock at night, whatever you'd like. It could be a simple card. It could be a letter you can express what you'd like.

And then our people here at LOPAOPA walk you through and they hold your hand and it's such a beautiful process. It is. And having worked with recipients, I can tell you that there's never been one that wasn't just so overwhelmingly grateful for that gift. And you know, if you struggle with the words, thank you can be enough.

And so that's okay. And it's usually quite appreciated. And then from donor family and recipients, just having that letter means so much. And when we go out in the community, they read those stories, they share parts of those stories and it's a big part of their journey.

So we appreciate the question. That's the info. Maybe you have a question for us. You can give us a call.

504. 648. 347. 777.

In every episode of the gifted life, we honor a hero. Today's hero is John Lefferts and you'll be learning more about him from his mom Vivian. Our son, John Alexander Lefferts was born in November 1981 in Central Illinois. I remember having such a feeling of hope for what he could accomplish as he would be a high school graduate in 2000, the start of a new millennium.

Little did I know just what his accomplishments would be. John passed away in 2004 just shy of his 23rd birthday as a victim of an undetected aortic aneurysm. So quickly, John was gone because accomplishments have lived on as a donor who has helped 37 years. Including two-quarter recipients in Missouri and a staff sergeant who's me was rebuilt with John's donation.

John's accomplishments truly live on. Now we'll pause and say thank you to John for the gift of life. And that is going to do it for episode 183 of the gifted life. Thanks for listening guys.

Remember you can register as an organ, eye, and tissue donor anytime. Register me.org. Very special thanks to Larry and Vivian Lefferts for coming on, sharing John with us. Great call.

And of course, they joined the girl minds that you may have heard in a previous episode, 31, and essentially become a power couples in the donation world, right? You know, the things that they're doing, making life happen. It's just really amazing. These two power teams team together and they're impacting donor families across the country.

What a gift to everyone. The best place to find us guys is at our website, thegiftedlife.org. We ask that you share it. And listen here and find the links on Apple Podcast, Google Podcast, Spotify, iHeartRadio, or wherever you listen to podcast.

If you listen on Apple Podcast, we ask that you please leave us a five-star rating. It helps others find the podcast. On social, you can like our Facebook page, the Gifted Life Podcast. You can also follow us on both Twitter and Instagram at GiftedLifePod.

Thanks for listening, guys. We hope that you go out and do something you would normally do to help us make life happen. We're 1Dictine. This is a production of the Louisiana Organ Procurement Agency, or LOPA.

The Gifted Life is hosted by Lori Steele and Joey Boudreau. Our executive producer is Kirsten Heins. Producer is Shalom Caraway. Intern is Rebecca Rannem.

And we are recorded, engineered, and mixed in our Covington, Louisiana Studio by Troy Perez.