#94 What Is Organ, Eye and Tissue Donation? – Cheryl Talley, Director of PR and Communications for the Donor Alliance

Talking with Cheryl made me more keenly aware of the ripple effect that donations have in the world. Organ, eye and tissue donations are life-saving. We talk about how she got involved with the Donor Alliance, finding donor networks in your region, how science and medicine are constantly working to improve outcomes, and what is helpful for donors and recipients to know.

Learn more at: https://www.donoralliance.org/

Transcription:

Diane Hullet: Hi, I am Diane Hallett and welcome to the Best Life Best Death podcast. Today I’m continuing this idea of third Thursday body disposition, but from kind of a different angle today. So today I’m talking about tissue and organ donation, and my guest today is Cheryl Talley of the Donor Alliance. 

Cheryl Talley: Welcome, Cheryl.

Thank you so much for having me today, Diane. 

Diane Hullet: I think this is a really, really important topic because you know, as you and I were just kind of chatting before we hit record, it’s like, I think everyone knows that there is organ and tissue donation, but we don’t know that much about it. So we may have checked the box on our driver’s license, but what does it even mean?

So let’s kind of get into that today and tell us about, you’re with the Donor Alliance, which is a very specific organization, and tell us a little bit about Donor Alliance and how you got into this 

Cheryl Talley: work. Let’s first start with how I got into this work. So thank you again for having me and having this important conversation about organ eye and tissue donation.

And you’re right, I don’t think people understand what the little heart on their license means. And so there is we’re here to dispel some of those Misinformation or misperceptions of what it is. And but also talk about our journey here and what Donor Alliance is. So my journey started with Donor Alliance about a year and a half ago.

I’ve been in marketing and communications for more than 20 years. We’ll leave it at that. And about 10 years ago, my husband suddenly passed away. Was a very tragic and sad. Day for me, and I had a group of people that surrounded me through this grief journey that I went through, and it became this realization that it was really important to help people in our community during that grief journey or helping them through whatever their trauma or struggle is.

So I really wanted to make that switch to a nonprofit and so I can support my community. And so I worked for a large social services organization here in Colorado that also served part of Wyoming as well. So I, I seem to be in the Rocky Mountain region. And I really felt like saving lives was critical to what I was doing and really helpful and helping people on the most difficult times.

And I was coming in with like, Hey, people helped me. I have some, you know, empathy towards this and I really can feel like I can help my fellow man and my, and my fellow Coloradans and Wyoming Heights. So I made that, that switch to nonprofit and then this opportunity came up with Donor Alliance. And I felt like really very close to.

The idea of saving lives, but helping people through that other part of it, which was the donor families, that journey of grief. So I deal with a lot of our donor families. So grief is a big part of their process and I can at least support them on that journey and walk alongside them. So that’s how I came to Donor Alliance and it has been as an amazing opportunity.

It’s been an amazing journey. Every day is meaningful and so from a personal standpoint, it’s been, it’s been fabulous. So interesting. 

Diane Hullet: So, and Donor Alliance serves Colorado and part of Wyoming. Much of Wyoming, but not most of Wyoming. 

Cheryl Talley: Mm-hmm. Mm-hmm. Yeah. So Donor Alliance and what, and so let’s just define some terms here.

So, What, what is Donor Alliance? Donor Alliance is an organ procurement organization. Okay. But we do more than just organs. We also procure tissue. We work with a, a, a network of people. And, and, and I’ll describe what that is. So back in 1984, the National Organ Transplant Act was passed by the US Congress.

When that happened, it. Created this, this entity called the Organ Procurement Transplant transplantation Network. Okay. And what this allowed us to do, or like, or we more commonly know, like I don’t ever say out the words, we always say O P T N, so O P T N, then. Was a network of organ procurement organizations, transplant centers, and something called unos, which is the United Network for organ sharing.

So the three entities work together to best be able to match donors to waiting recipients. And and that’s, and so then the Oregon procurement System was created. Colorado, Oregon Recovery Services was the original. And then Mile High transplant bank was more of the tissue, but those two entities merged in 1997 and became Donor Alliance.

So we’re federally designated by population and by service areas. So geographic those two components and that we are given that mandate by the federal government. So there’s 57 OPOs in the US today. And. That is being de based on where we’re located and how many people we’re serving so we can best serve our community.

And so we work closely with the transplant centers as well as with UNOS to most efficiently match you know, the organs to the recipients. Yeah. That’s gotta be just a 

Diane Hullet: huge complex system. But essentially you’re saying that every region and every state in the US has this, has this, you can find this.

And any organization? 

Cheryl Talley: Yes. So there’s, there’s OPOs all over the nation. Like I said, there’s 57, but like, for example, a large like California is large geographically, but also large population wise. So there’s multiple OPOs, Florida, multiple opioids Texas and Depe. So population is taken into account, not only geographic area.

We have about five and a half million in Colorado and about a half million in Wyoming. And geographically it’s, it’s, we’re probably one of the largest geographic areas except for some, you know, but, but in terms of, Population, you know, comparable. 

Diane Hullet: Right, right. And I was interested to read on the website.

I think it said there’s 68% of Coloradans and 62% of Wyomings are signed up for this, which is an incredibly high 

Cheryl Talley: percentage. I thought. It is. It we’re very we, we live in a very generous. State in Colorado and a very generous state in Wyoming, we, we are in the top five, so Colorado is number leads the nation, number one and donor designation rate.

And currently, you know, we are seeing a decline in that because I just we’re, you know, I just think that in general the nation is seeing a decline. And CO and Wyoming is. Still number five. So if we’re number one and number five in the nation. So I’m very proud of the generosity of our residents in Colorado and Wyoming and their support for organ, eye and tissue donation.

And we, we just finished national Donate Life month in April, and we are out in the community talking to our community members, our industry partners, and people are, Favorable and they say, why wouldn’t somebody want to be, you know, and sign up to register to be an organi and tissue donor? Well, this, I mean, the 

Diane Hullet: interesting thing about it is, if I understand it correctly, it really, it, it, it kind of comes via a sudden death, right?

This isn’t typically a disease process that someone can then donate things, but with a sudden death, an accident, a car accident, some kind of. Is a heart attack, qualify somebody to be a donor. 

Cheryl Talley: So, so it, there is a whole multitude of things. So it’s almost like a miracle when it actually, when donation actually takes place.

So it, the circumstances have to be right because there’s only so much time that we can have that d from the decision to be an organ donor. When that is being conveyed to the family, to the time we can, recovery can be made. There’s, it’s just a limited amount of time. So first thing I like to say is just really, you know, clarify.

There’s, you know They’ll do everything in their power at the hospitals, at the EMTs to, to ensure the fact that they’re giving lifesaving support and that, you know, they’re, and, and when everything else has failed when, when death occurs. It can happen in two to different ways. A cardiac death when the heart is no longer.

Beating, and it is, it is determined that they had by the doctors that they had passed or when, from brain death, when there’s an irreversible loss of function in the brain. Those are the two types of deaths that occur. And at that point we then get notified by the hospitals that this person can meet the criteria.

And then the, then the process begins. Really, that determination is made by the hospitals on that official declaration of death. And there are regulations and standards on how those are governed. You know, like I said, it’s, it’s, it is a process. Sure, sure. It’s a miracle when it happens. Yeah. Yeah. 

Diane Hullet: I love framing it like that.

And my guess is, I mean, this is one of those things like, You know, a big part of my message is to, to say to listeners and people I work with in classes, like, have these conversations before. You need to have them because this is the kind of conversation that could be so difficult for a family in a hospital, but if they’ve talked about it in the years and the months leading up to it.

People can be more on the same page about understanding what the person who’s dying wanted, right? So that combination of what that person wanted and what the family wants, everybody being in the same boat and pulling the same direction can make this kind of a miracle occur. That gives somebody else a huge opportunity to have lifesaving intervention.

Cheryl Talley: Well, it, it, it that, I love that you brought that up, Diana. It’s, it’s such a great point to have. I think if the peop, if people have that conversation, I know it’s difficult, these are difficult conversations to have, but having those conversations knowing. The decision that your loved one would have wanted, right.

Where they have made that decision. It, it, it gives so much comfort to the families, but there’s a sense of hope that we are honoring their wishes, their decision. Right. And I, I. And it is a decision, right? It is a, it is like a living will. It’s a, it’s a prime directive. So you are honoring their decision, not just like a whim, right?

It is right, because with, 

Diane Hullet: without knowing that they wanted that, I think I, a lot of us would’ve a hard time making that decision. It would feel like, well, maybe that’s disrespectful to what they have in mind, but if we know they want it, then we can really stand in it. 

Cheryl Talley: Yeah. And I know we’ve, and we’ve got.

Data to back that up. People come to us and say, I was so happy that I had that conversation with my loved one, or when they got their driver’s license and they showed me their ID with their heart on it. They were so proud of the heart on their, on their license and that decision and what that decision meant.

So not only do I really want everyone to have that hard conversation, but really make the decision Knowing the facts and to know that everybody should register, but be comfortable with what it is. And you know, it is saying that you’re saying yes to donation means that you’re saying, at the time of my death, I am going to give lifesaving gifts of organs and tissue to save and heal lives.

And that is the decision that they are making and it is an opportunity. For another family to not have, not have the same grief and so and, and, and be able to be returned to their loved ones and their families and live a fuller life or to be a child that’s able to grow up go to college, you know, have that a future.

And the ripple effect and of that is immeasurable. 

Diane Hullet: It’s immeasurable. And of course we hear stories about people having contacts with their donors of, you know, the recipient donor families. I, I’m sure there are processes and regulations about how that can happen, but so 

Cheryl Talley: moving. It’s moving. It’s moving to witness, it’s moving to be part of an organization that gets to see this every day.

It’s such a privilege and an honor, you know, and there’s, there are donor families that may not feel comfortable knowing the, the recipients and which is so nice about being an advocate for life for our organization. There are sometimes donor families that wanted to hear from their recipients, but the recipients may not have reached out to them or their recipients who’ve wanted to know their donor families, and they have not heard from them.

When they come together as advocates for life supporting organ eye and tissue donation, they find a network of people that, that, that understand each other and so they become like, Hey, I may not know who my donor family is, but I will be. You’re, you know, your recipient or I will be your, your donor family because they, they connect and on some level that they, that they share that.

And I’ve, I’ve, I’ve seen it. I’ve seen the reunions. I mean, it’s an amazing thing. We had a wonderful story that happened last year where one of our Donor families reached out to one of our recipients based on a marketing campaign that we had done, shine a Light, and he had a, a picture, I shine my light for my angel donor.

The donor family saw that and said, this man needs to see and needs to meet his family. And he delivered a build a bear. With the heartbeat inside so she can hear the heartbeat of her daughter. And the, I mean, I just, I get a little weepy about it, but because it’s such a wonderful story, but that just shows you the impact.

Now they’re surrogate families and there’s a, a whole new level of hope and cur and, and, and, and just an encouragement for, you know, the impact of that life-saving decision. Yeah. Yeah. I, 

Diane Hullet: that’s, so moving g give us like, You know, sort of the high level, like how’s the process work? And I’m sure it varies from state to state.

And I even have international listeners, so you know, I’ll be curious what people’s responses in terms of what, how does this work in Australia or Great Britain or wherever people are listening. But what’s the high level sort of. How you do this in the 

Cheryl Talley: us. Okay. Well, wonderful. And just to go back a bit to say that, you know, we live in the United States, which leads the world in our donation sys our, our our transplantation system.

We were number one last year for the like, I don’t know how many years in a row, but 42,000 lifesaving transplants were performed in 2022. Some of them were, were like, You know, a portion of it came from living donation, but the majority came from people who made that decision when they die to just to provide that lifesaving gift.

So when the process of organ donation typically occurs when. After all lifesaving efforts have been exhausted from then death is declared. At that point, the patient, if they meet the criteria, the hospital will contact Donor Alliance. Then Donor Alliance will work with the hospital and work with the family to ensure that their, their cared through, through the whole process and that they’re, they’re informed.

At that point, the. The candidate will be determined whether they are a candidate for donation, for organ, eye, and tissue. And then the matching will begin with through that, that process that I was describing through unos and through the transplant centers that we we’re working together to make.

You know, through the matching system to make sure that people are matched based on their size, their blood type, their tissue type, their, all these criteria are brought into the, so then is that 

Diane Hullet: across state lines then? So like Eyes in Colorado, might be in Kansas or 

Cheryl Talley: something. So it is, so geographic is a huge factor in it as well.

So you have limited amount of time for certain organs. So you ge you can’t shift something over abroad if it’s not gonna, you know you only have 46 hours, right? Yeah. So it, ge geography is, is a, is a huge factor in it as well. There like tissue and eyes have a longer ability you so they can, may, they like tissue can be managed anywhere and it’s not like, as, as timely organs is a little bit more timely, you know, between four to six hours for heart and lung more for kidney and for liver.

And then you know, so then the, there’s a, the, the clock really does start. And then. Once those tissues, I mean the organs are matched, then, then they start getting shipped. Sometimes it can go on a plane, sometimes it’ll go in a, in a, in an ambulance sometimes, you know, so there’s, they, the matching begins and and then, you know, obviously it goes to the transplant centers that have accepted it and it’s matched with the family.

And then the transplant will proceed. So, 

Diane Hullet: wow. Incredible. So if you’re a risk. Recipient, you’re kind of on a waiting list and you might literally get a phone call that says your heart’s on the way. Mm-hmm. And you just instantly prep for surgery. 

Cheryl Talley: We, we hear about this from a lot of our recipients and the, the story of, of getting the go time and having the go bag and being ready to go at any moment.

You know, there’s a wait list for kidneys, which is the most needed of all organs in terms of volume. I mean, there’s the wait list currently in Colorado is nearly 1500. More than a thousand are waiting for kidneys. So that’s the number one most needed organ. So you don’t know, and they can wait up to five, six years depending on what region they’re in.

And so they, they’re always on call. Heart, lung, same. Very similar. Typically, a lot of times they’re in the hospital waiting. So there is a everyone has, again, a different story depending on, you know, what their level of, of, you know, how they’re, how they’re doing and what their, what their healthcare levels are.

So I had such 

Diane Hullet: a, such a weight and watch game. Wow. I, I, my heart goes out to people who’ve been in that situation. So you know, what do you think is important to understand as a donor and as a recipient? 

Cheryl Talley: As a, as a donor. I think what’s important to understand when you register as a donor and you’re considering signing up to be a registered donor, the most important things to, to understand about organ tissue donation is simply that it’s lifesaving, right?

The impact that you have with your gift of life is, I keep, I, like I said before, is immeasurable. One donor can save. Up to eight lives through organ donation and save and heal up to 75 sometimes more through tissue donation. And and obviously restoring site is not lifesaving, but it is life restoring, right?

There is a, there is a, a quality of life activities that can be resumed joining your family in a different way. I mean, these are all impactful in, in, in, into quality of life. I, I just think that as people have to understand, right here in Colorado, 1500 people are waiting for a life-saving transplant in Colorado today.

That could be your neighbor, it can be your, your, your vet. It could be your, the person you work you see at the grocery store. You don’t know, and you don’t know the people who have been impacted by donation. I mean, again, it, it’s, it could be your, your. Friend next door, it could be anybody. And we are all in this community together supporting one another.

And if there’s a way to help that next person, you know, even during their most difficult time, it is such a heroic decision. Such a generous gift. And we, we can’t thank the generous donors and their families enough for that. I 

Diane Hullet: love that. I love really connecting the donor to lifesaving, like those two words.

Really putting those together I think is really powerful and gives real meaning behind the heart On your license. Mm-hmm. Your driver’s license. Yeah. What about for recipients? What’s important for them to know 

Cheryl Talley: you? I think with recipients is understanding that there is someone who just lost a loved one and they have that.

They had that second chance of life, you know, and they’re, I, I think for recipients, they, they, they already recognized the gift of life because they were very close to that. As well, right? So there is a fine line between you know, where they were, they, at any moment they could be that other, that other story.

So I think recipients are grateful. They, they, they share their gratefulness with us. And knowing that there’s a, there’s a family behind them that gave, made that decision for them, I think is really important. And I think that recipients Actually, they, they, they kind of lead the charge in supporting the donor families as well as, you know, being an advocate for life because they know both sides of that coin and they understand it and their families understand it.

I think that a lot of the recipient families who are also caretakers are so thankful for that decision. I, I, I think they’re probably watching their loved one. They’re probably more connected to the donor families than the re even the recipients are, cuz they’ve, they witnessed, you know, watching their loved ones as they were just not thriving.

And then to see that, that transition, I, and we talk to our transplant hospitals and they’ll talk about how. Somebody who’s profoundly sick, but after a transplant, it’s amazing how they recover so quickly. Like you can see the, you know, the color back in their faces and they’re, they’re, they’re, they’re just doing so well.

And it is an amazing miracle to, to watch as well. So healthcare is changing and, and innovations are happening every day making their life, you know, more livable. So, And I think that’s also an important part of, you know, about the recipients that their, their quality of life is, is improved so dramatically.

Diane Hullet: Yeah, I, I love, I’m, I’m struck by what you said early on too about the ripple effect, right? Mm-hmm. So it’s the effect on the person who’s received the organ, but then that ripple effect of families and friends and everybody who knew them, and, and you see it through, partly through social media, right? I think that’s really connected us all.

I mean, it’s got it’s pros and cons, believe me. But you know, you see on Facebook these amazing connections of people reaching out and the ripple effect of their story being shared. And those stories are so powerful. And I, I’m struck too by this idea that it’s a miracle that when it does all come together, it’s a miracle.

It isn’t like just because you have this hard on your driver’s license, it means it’s going to happen. That’s right. It’s like we all have the possibility of being a hero and a lifesaving person for another being, depending on what happens in our 

Cheryl Talley: death. It is a miracle, you know, and, you know, we’ve had some great milestones.

You know, we, we always talk about the numbers in, in the milestones and the, and you know, eight lives are saved through one, one donor. We reached a milestone in 2022 that is just remarkable that there were 1 million transplants in the United States that since the beginning of transplants in 1954, there is 1 million.

We hit the 1000000th mark and the last six were here in Colorado. Wow. Pretty amazing. That’s an 

Diane Hullet: amazing milestone in 1954. That’s kind of when this, when technology in the medical world got to the point where they could try these things. 

Cheryl Talley: Well, you know, there was, there was actually earlier attempts at it like I think as far back as 1902, but 1954 was the most first successful kidney transplant, I think it was at the Brigham in Boston.

And then here in Colorado again, we have a rich history of donation. We had a donation. I mean Dr. Staal here at University Hospital performed the first liver transplant. And there was all these protocols that he brought in to the conversation about anti-rejection, so these protocols and the, and the mo and, and really advances in technology and advances in medicine allowed for these the anti-rejection for the organs to be transplanted.

So we’ve seen so much change over the past, you know, Four decades. It’s, it’s, it’s amazing to, to witness it. And every day there’s innovation and technology is changing, allowing the organs to survive for more than four to six hours, or, you know, and so allowing that. That geographic circle to widen.

So it’s allowing for more transplants to more people who are more profoundly sick. So that is the continued evolution of the, of organ transplant. And the, the, the whole system is, we’re seeing so much innovation. It’s coming out of United States, coming out of other places in the world, but really, you know, United States always seems to lead this.

So and being able to, You know, donate hearts, lungs, kidneys, pancreas, small intestines also bones, skin, tendons, heart valves, veins, you know, and of course the corneas. And I am I have a little connection to this in that right before I started with Donor Alliance, I was having a little bit of a health scare.

I went to my doctor, turned out that, you know, I needed a valve replacement. I have a bovine valve. So we didn’t use you know, a a deceased donor, but I. I understand that a heart valve saved my life and, and that is a, is, is a tissue that saved my life. So I think that people don’t even realize the importance of the, you know, what the tissue has and this, and, and that’s, talk about the ripple effect that’s even If you start talking about one donor saving or healing, 75 lives.

So we had 1900 plus last year in our region. That’s 144,000, you know, graphs that were able to go out into the community to help somebody walk, help somebody see. Help somebody, you know, heal from a burn help someone with, with with an, a heart injury or like restoring their veins or something that really does return them to a quality of life and returning them to their family.

Diane Hullet: I’m really glad you brought up the smaller things too, Cheryl. Cuz it reminds me, I, I had an a c l issue with a shattered tibia and almost needed a cadaver a c l. Right. And that was, that was a possibility. I didn’t end up getting one, but I. When you start talking about those even smaller kind of uses of tissue, you know, here’s two of us that have been affected by that.

It’s, it’s quite incredible. Mm-hmm. I, I’m struck by how much the Donor Alliance does, because you, you’re both I is it your job to both. Help to coordinate the systems within Colorado and parts of Wyoming, and also to put this education out, which is just a whole other like department, 

Cheryl Talley: right? Oh, absolutely.

Like you 

Diane Hullet: said, over 60 events in the month of April. Just, just talking about this and putting the word out, and I also love that when you talk about it, you say every time. Organ eye tissue because I think we get in this, the lay people like myself get kind of into this like organ donation, but it’s these other things as well that are critically 

Cheryl Talley: important.

I, I thank you for saying that and emphasizing it. It is critically important and it, and it is li i, i, I was part of the, the push to include lifesaving and life healing in our mission. So our mission is to save and heal lives through organ, eye and tissue donation, organ and tissue donation. And I also use the word healing, not only to talk about how tissue can heal, but the We support our donor families, so we’re allowing, helping them as they heal so that there’s a healing on both sides of that, of that process.

But going back to the, to the Donor Awareness Council, that was formed back in 2000 level 11, and that was a nonprofit coalition to really educate and inspire people around registering to be a donor. So. You meet one o p o, you meet one o p o. We happen to also manage the registry here in Colorado.

So my job is to go out and educate and inspire people about the registry and to saying yes to donation and what that means. And we work closely with schools, our, our our driver’s license offices and with other community partners to raise awareness and educate others about donation. And we have a couple of.

First well one first, one second. So, Colorado became the first Donate Life community state in the nation. And what that means that they have made a commitment to education and inspiration around donation for organi, donation for organizing tissue donation. The city of Aurora, which is a very multicultural, I think there’s 161 languages spoken in Aurora.

I mean, this is amazing. I didn’t know there was 161 languages, but apparently they are all spoken in Aurora. We have partnered with them to be the second donate life, city and community in the nation. So what they have said is we are making a commitment to educate and inspire our residents to learn and understand and to re register to be an organi and tissue donor.

That is 

Diane Hullet: just fantastic. Well, Cheryl, I think you, I think you’d have a fantastic job and I think you do a fantastic job at your job, and I appreciate this conversation so much. I, I hope we’ve both given people information, but also the inspiration to see why this matters. 

Cheryl Talley: I. I hope so. You know, I know that I, I ask everyone to learn on donor alliance.org.

Find out, get the facts. Know that anyone, no matter their age, no matter their health status, can register to be an organi and tissue donor. We leave the medical decisions up to the medical professionals, but everyone can register no matter what their health status is either. So if they have, you know, any of those things that were rule outs in the past.

We can work beyond that, like hepatitis those kinds of things. So we ask everyone to get the facts, you know, learn about it@donoralliance.org and register to be an organ, eye and tissue donor so you can help one day when you know, when you no longer need them, you can help somebody else in their most darkest time.

Thanks so 

Diane Hullet: much, Cheryl. You again, she just said the website. You can find out more about the work that Cheryl does and all the good people involved with it at say it again. Donor 

Cheryl Talley: alliance.org. 

Diane Hullet: Great. And you can find out more about the work I do at Best Life. Best death.com. Thanks so much for listening, and thanks for being a guest, Cheryl.

Cheryl Talley: Thank you.

Diane Hullet

Diane Hullet

End of Life Doula, Podcaster, and founder of Best Life Best Death.