Eye Donation for Research

Hello, and welcome to the Get to Life podcast, where we have conversations about organ tissue and eye donation. I'm Royce Deel. I'm Joey Woodrow. I'm Sally Gentry.

We have a power-packed podcast for you. That was a tongue twister. Well, that is you today, guys. But today we're going to focus on research, research aspect of donation.

Yeah, we talk about donation for transplantation, but when transplant is not an option, donation for research is often a great alternative that has potential to save even more lives. My goodness, the advancements that have been made in research is just phenomenal. And along with that information, we're going to tackle the unrealistic expectations people have of grief. Okay, lots to get to today.

We'll fill you in all that and much more here on the Get to Life. We know that you're listening. We thank you. We want your friends to listen to.

You can find us almost anywhere, Laurie. You can find us on Apple Podcast, Google Play or whatever your favorite podcast app, maybe. I should have gone, whoo, that's great. We love that you can find us anywhere.

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It is our goal to spur those healthy conversations about organ tissue and ideonation. You are part of our team. You can make a difference. So hang on to your hats.

We got lots to get to. Guys, have a new friend to introduce you to Cindy Reed. She joins us now from the Iowa Lions I-Banc case. Cindy, we appreciate you joining us here on the Get to Life.

We like to spur those healthy conversations about organ tissue and ideonation. And we thought a great topic would be to turn into the research and the hope that lies there. So on earlier episode, we talked about organs and tissues for research. Now we want to focus on your specialty.

And that would be I-SPR-Research. Not only do you know it professionally, but you have a personal tie there. So we appreciate you joining us. Before we start, Cindy, Joey, let's talk about when it comes to research, those organs and tissues for transplant.

That's our number one main goal. All right. So of course, we want to fulfill that family's wishes and that person's wishes if they've chosen to donate. We tried to facilitate transplantation and saving lives.

But of course, there's that whole other realm, that whole other aspect of donation that we could choose to go through the research route. As we mentioned in an earlier episode, you know, research is truly an investment in the future. Certainly, we try to save as many lives as possible and enhance as many lives through organ tissue and ideonation through transplant. But certainly research is one of those routes that we try to pursue.

All right. And so anyway, it comes to ideonation. Is that along the same lines as organs and tissues? What Joey just mentioned?

Absolutely. There's a tremendous need for donated eye tissue in this country. In fact, the need far outstrips the tissue that we're able to collect for a variety of reasons. In these last couple years, it's been a little bit of a worry because the funding for research from the federal government in particular has been scaled back severely.

I understand too that you do have a personal tie to eye donation research. Could you tell us a little bit more about that? Absolutely. And actually, this job at the I will Eye and Eye Bank turned into my dream job because of it.

So in 1992, my little brother died of brain cancer and the hospice nurse offered us the chance to donate his eyes. And so we did. And when I came to work at the Eye Bank in 2004, my mother sent me the letter that she had received thanking her for that donation. And it was at that point in time that I discovered that my brother's eyes were donated for research.

And the Eye Bank had been providing tissue to the researchers at the Institute for Vision Research for, I don't know, a long time, 20, 30 years by then. And so the primary project that they were collecting research donated eye for was for glaucoma and immaculate degeneration and genetic eye diseases. And let me just tell you, research is sort of the long game. Transplant is pretty immediate, not for the patient, but from donor to transplant.

It usually happens within about a week or so. But research is a long game and you've got to be patient. And one of the first projects, research projects I participated in here at the Eye Bank was looking for folks in Iowa that might have a genetic defect called Labors Congenital Amorosis. And so we worked with the Iowa Lions to scour their communities because they were looking for folks that were either born blind or went blind before school age.

That's the hallmark of this disease. And the University of Iowa had developed a genetic test to try to figure out which gene was missing. And how they were at that time, they were looking for folks to see if the test worked and developed it. So fast forward then, another 10, 12 years.

And today our researchers here and our clinicians are participating in a clinical trial that takes a gene correction inserted into a virus because what do viruses do? They replicate, right? So the gene correction is in the virus and that's inserted into the eye. And they've actually restored sight to people that were either blind before they went to school or were born blind.

That's amazing. I mean, it's truly a miracle. But it's a long game. It didn't happen when we found our first person that was positive for this missing gene.

But you have to be patient, but the results are incredible. You're also an RN and you have a PhD. Were you actively in nursing prior to this? Or have you been a professor?

Or what got you into the research? I mean, I know that your brother certainly had a big role to play for that. It's sort of a funny story. So I was a nursing director in a community hospital for about 30 years.

And then I had a blast. Then I got a divorce and decided to go back to school and get a PhD. And actually I got a doctorate in theology as well because I was interested and had full intentions of moving to a university in Missouri and teaching and doing research. That's what I wanted to do.

And then you know how the universe arranges things sometimes. And I met this guy. Here we are 14 years later. And I feel firmly rooted in Iowa.

So after I got out of school, I didn't want to go back to my old job as a nursing director. And so looking around, someone who had been an intern under me had his name attached to a job for a director at the I-Bank. And I didn't really know what an I-Bank was at that time. But I called him up and threw my hat in the ring and here I am.

Wow. That's a great story. I think I made a pretty good pick from what we're hearing, Miss Cindy. When it comes to the I-A-Lions I-Bank, do you have researchers in-house?

Or how does that work there? Oh my goodness. This is so exciting. So up until about three or four years ago, we provided research to the Institute of Vision Research.

And my boss did a few of his own research projects which we participated in, really dealing with looking at how to make transplants better. Then we got a new faculty at Dr. Greiner and he wanted to do all sorts of other research. It actually on a personal level, it drives Dr.

Greiner crazy when he does a transplant. And for some reason it doesn't work. Perfect cornea, perfect patient, perfect surgery, perfect recovery. And all of a sudden, the cornea goes cloudy, bam.

And that actually happens in this country about 5% of the time. So it's awful for everybody. It's awful for the patient. It's awful for the doctor.

And we feel sort of the sense here at the I-Bank of personal responsibility, like what went wrong here? And up until Dr. Greiner's research, we really didn't have a way to figure that out. So he came to the I-Bank and set up a research lab.

And he started looking at how are these cells functioning? How can we measure if they're functioning or not? Because right now we look at them and they look great. But it's just like with people.

A lot of people look great, but they don't really function very well. Yeah, you're right. Sally says yes, okay. So it's the same with these cells.

They can look really great, but we can't really tell if they're functioning or not. And so Dr. Greiner got a grateful patient who had exactly the experience that I just described, donated some money, and he bought this incredible machine called a seahorse. And so we've been doing research with a seahorse that now have developed all of the measures to tell whether the cornea works or not.

And we're moving forward that and trying to figure out right now what we have to do is take a piece of the cornea to figure that out. So we're working on trying to translate that so we don't have to take a piece of cornea because, you know, a surgeon can't transplant a cornea if we take a piece of it. That's not going to work. So we're still bridging that gap, but it's allowed us to look at a variety of things, and especially our number one concern at this point in time is diabetes.

Because so many people in this country are diabetic. So many of our donors now are diabetic. And we have figured out that there are issues when somebody's a diabetic, no matter what, if they're on insulin, they're at risk to have difficulty. Not everybody does.

Some things go very smoothly, but they're at a higher risk because of the diabetes. And so we're looking at ways to make those cells as healthy as possible before they're transplanted. And then also once they're transplanted into a recipient and have restorged diet, how can we keep them healthy despite the diabetes? Yeah.

So those are some of the things we're looking at now. And it's really, it's very, very exciting. Well, and we love listening to you. Tell us these stories because we can hear the passion and we were preparing for this interview.

You said, you know, heroes, they're heroes and you have a personal tie. So we know that you must celebrate every advancement that comes your way. Absolutely. And you know the one we're getting ready to celebrate, my family.

And the other thing is that my mother, when she died three years ago, she was also an eye donor for research. So we have a very strong family tie. We're going to, there's a run walk coming up in Iowa here in a couple weeks. And our family is walking and we've got our t-shirts and we're all set to go.

And you know, probably, actually, that's not unique at this, I think. There's probably half a dozen of us who have families who have been donors. So, I mean, we really get it. The advancement that my family is getting ready to celebrate actually come out of Utah.

We had a researcher here working on macular degeneration who moved to Utah about, oh, I don't know, five or six years ago, maybe some time ago. He's really close to making a breakthrough to actually not macular degeneration. And in my family, it runs in my family. My mom's got it, my grandma had it for like 25 years.

And so I can see this train coming. Is this genetic then? It is genetic. But you know what, the thing about macular degeneration is a lot of people have the genetic predisposition, which means their genes are ripe for developing the disease.

But they don't all develop the disease. They don't all develop the disease. And one of the things that Dr. Hegeman figured out is that the same pathway in your body that starts macular degeneration also starts aortic aneurysms and cardiac disease.

That is something. We need to figure out. Yeah, that's amazing. The breakthroughs that you guys are finding out there.

We talk a lot here about not ruling yourself out. You know, because a lot of people think, well, I've got diabetes and you mentioned it earlier. I've got this or that. Or cancer, as in your brother's case.

We talk about the fact that even with cancer, you can still donate. You can still save a life. You can still invest in the future and possibly save lives in the future through research. Absolutely.

Can you talk a little bit about the number of recoveries and opportunities that are out there, even with hospice or people with terminal illnesses? You know, here's the thing. It's there is an opportunity every day and people should not rule themselves out. I mean, I've had people come up to me and say, oh, I wear glasses.

You know, nobody's going to want my eyes. And it's like, oh, no, no, no, no. You don't understand. And then I get to explain.

But there's always the opportunity for research. And the thing is, there are so many efforts going on around the country. And the difficulty with research is it's sort of a domino effect. Because when researchers aren't funded to the level that they need to be funded at, or the project aren't funded at all, then they can't help reimburse eye banks for the expense to go out and actually recover the donated tissue.

So it's sort of an uphill battle that we face. And actually last year, even though we had all but the three smallest eye banks in the country participate in research donations, and 26 of us actually recovered more donated tissue than we had previously, we were overall, we were down by about 19%, which is not the way we want to see it go. Because our country counts on these research advancements for its health. I mean, we're lagging behind in the U.S.

with our ability to advance and that's related to funding. And that's related to people's awareness about, yes, I can help. Yes, I can donate. Yes, I can be a part of the long game and a part of somebody's success in the future.

And it doesn't matter what your disease is. It doesn't matter how old you are. I mean, we have an infant program now. We live, we office close to a university hospital.

And unfortunately, some pregnancies don't result in a live baby. And it's a tragic situation, but those parents have the opportunity to donate that child's eyes. And there have been phenomenal strides made in glaucoma because of that program, because of understanding developmentally, how things are happening in the eyes, because we know what part glaucoma impacts, and we know how the disease looks and what it does. And we sort of know how it develops, but knowing more about how the eye develops is a huge advancement in understanding how glaucoma takes hold and creates blindness.

And it is the number one cause of blindness in the world. And we're learning more because of heroes. You mentioned it earlier. Here on the Gifted Life, we like to honor our heroes.

We do that every episode. We know you mentioned your brother. We want you to say his name and tell us something you remember about him to help us get to know him, if you will. Oh my goodness.

Ricky, Ricky Robert Reed, he was a musician. He had a passion for music that caused him to get a paper route when he was 10 years old. So he could buy a first guitar because I thought it was foolish. And he left high school and joined a band and got his degree later and was a musician in Minneapolis when the tragedy struck.

The hilarious thing we remember about Ricky's funeral was he had been in the Minneapolis music scene for, I don't know, about 10 years or so, maybe a little bit longer. And all of a sudden, we're in little tiny Des Moines, Iowa, right? In a very modest middle class, working class neighborhood, and all of a sudden this bus pulls up and folks get out of this bus and they've got, this is 1992. So they've got piercings, they're in black leather, they've got orange hair, they've got chains like from the nose to the ear.

I mean, all this stuff, right? And, you know, my mother's like, what? What? And it was folks from the Minneapolis music scene that had come down to come to his funeral.

Oh, no, no. So, yeah, we think we think they loved him just as much as we did. Well, we thank you for sharing that. We thank you for what Ricky has given because he helped with some of these advancements.

He was so excited to talk about today and share with us. So we appreciate you. Obviously, it sounds like you're doing a great job where you are. And I'm really excited to talk to you more about what is it that you do?

How can they learn more? Well, they can go to www.iowa.iowa.lyanspluralibank.org, and there's tons of information there, especially even if folks don't, obviously, if you're going to our website, you're not quite a donor just yet. And so you can also financially donate to our research efforts or to your local I-Banks research efforts. If you're listening to this on the West Coast, there's a ton of activity going on there, East Coast, and really in just about every state, there's research going on and there's people in need of funding.

You can also go to the National I-Banking site, the I-Bank Association of America, and that is www.restoresight.org. So, R-E-S-T-O-R-E S-I-G-H-T.org. And they have a lot of information as well. Perfect.

Cindy Reed, it was a pleasure. Thank you so much, you guys. That's fun. Call me again.

Yes, thank you. All right, guys. So I was sick a couple episodes back, missed some episodes. You guys did great without me, but you started something new.

Did we supposed to vote? No, let's go vote. I see that. No, that's it.

I know. So you tried something new, it worked great feedback from it, and that is when we feature Sally and what she does best. Give her a hard time here on the podcast, but she is our mental health professional, right? Of course, she's got the entire alphabet behind the last name.

Amen. But Sally is a mental health professional. That's right. So we're going to put your talents to use, right?

So today we're focusing on unrealistic expectations of grief. You're going to kind of walk us through that. Hold on hands. Yeah.

Well, and you know, we're just going to kind of talk about this because I'm sure you all have been to funeral services where families are standing by the casket. And different family members or just friends, relatives, whatever come up and we'll say different things to you. And it's almost like you're just trying to make me feel better. And no matter what you say, I don't feel better about this.

And you know, some of the, and I did write down some of the things that families had told me and said that, you know, they'll hear people say, well, you know, you're going to get over this. It's just going to be a short period of time and you'll be feeling better. Well, that's not a good thing to say. It really puts people in an awkward position because they're not sure how to respond to that.

Sometimes people say, you know, grief does just, it declines, it's steady decline two, three months. You're going to feel better about this too. And you know, from talking with donor families, you all know that grief never goes away. It certainly becomes less intense.

Emotions are not quite as raw. But it just never goes away. And I'm not so sure we ever want it to go away. It does keep us a little bit more in tune, I think, with our feelings and how we felt and continue to feel about the person that is no longer with us.

I know too that it says some people say, well, you know, when your grief is resolved, it just won't come up again. Well, you know, Laurie, that's not true. You found that over time with your mom. It does come up.

And I'm sure if your dad also, and it does make a difference. Yeah. And you know, I'm listening to you and I'm cringing here because I may say some of those things because of my experience, I get anxious in those settings and don't know what to say when it's when it's my turn. I normally don't have trouble talking, but in those situations, I have a hard time.

So yeah, I'm listening. I'm learning. And another thing that you will hear people say that, well, if I mean, my husband is to see, so if your son or daughter has died, oh, I know exactly how you feel. And you will hear people say that.

Oh, yes, I know exactly. Well, we all have feelings that are different from one another. They're similar types. No, right.

They're not the same. And I think one thing that a co-worker said to me the other day was very important. She said, you know, I had a friend that came up to me and said, I'm just so tired of people saying I'm sorry for your loss. And she said, it's like, don't say that because you can't be sorry for something you have not created or caused.

And I think we just don't know what to say because me. Yeah, I get stuck with like that's the only thing that comes into my head because I don't have clear thinking because I am so anxious and so I got to work on that for me. And you know, I think what a really good phrase is, I know this must be a very difficult time for you. Is there anything I can do to help?

They can be just that simple because what else can you do? I mean, this has already happened for the person. This is going to be an experience they will have to go through, but maybe there's one little thing you can do that can help them out. So the one thing I've been trying to do, but I've been to a couple of services for friends, but I love when folks share good memories of my mom.

So I try to bring that up either text or email following or something like that. I say, I didn't know I do care. I just couldn't tell you that at that time. On occasion, you will hear people say, well, just be brave.

Keep a stiff upper lip. And when I hear people say those things, I'm thinking, I know you mean well, but that's not a good thing either. Just ask, what can I do to help you? Hopefully that will be some help for folks.

Yeah, I like this segment. You guys, A plus. Don't do it again without me. I'll go over it with something.

I'm getting more to come on the next episode of The Get to Life with Sally. Let me talk about these types of issues that are families. We're talking about. Yeah, all right, we're done.

On The Get to Life podcast, we honor a hero. Today, that hero is Matthew Manning. Matthew Manning was a beautiful person inside and out. Matt was very close to his family and collected many lifelong friends.

Growing up, he was the youngest of four children, three older sisters who loved a door, protected, and spoiled him. As an adult, Matt was an enthusiastic outdoorsman, enjoyed hunting, camping, and playing golf. His need for speed, passion was fulfilled by racing four wheelers and motorcycles. A skilled handyman he could build and fix anything.

Matt enjoyed volunteering for youth wrestling camps. In a written tribute to Matt, his co-workers from Oakdale, Iowa Medical Classification Center recalled his memorable gifts to them. Quote, "'Gis of your knowledge, your fist bump and brace, and the gift of the smiles you left all over the place." His wife, Katie, lovingly remembers his unique marriage proposal and will never forget the look on his face when he first saw her on their wedding day. Because of Matt's genuine and caring personality, it was no surprise to his family that he was a registered donor.

Always giving the best of himself to others, his loving parents and grandparents understood the impact of his final gifts through cornea and tissue donation. To see Matthew and learn more about heroes from our partners in Iowa, visit IowaLionsIBank.org. And at this time we pause and say thank you to Matthew for the gift of life. And our question and answer segment today here on The Gift of Life.

This comes to us from our Facebook page. We love when folks interact with us. The question is, how can I go about finding out information on my daughter's organ so they have saved anyone's life? It will be four years this June and our grief is finally at a stage that we can talk about things and would love some information.

Joey, do we have an expert on hand that could possibly cover that topic? We do. Have to be Sally. Question for you, Sally.

Alrighty. Well, yes, we can certainly help you with this information you're looking for. If you would, please email us at familyservices at lopa.org. Or you can give us a call at 504-837-3355 and ask for family services.

And one of us will be able to help you with this request. Alright, there you have it. I was at a presentation and folks were asking, they were so many years out and they thought that the opportunity was over to be able to reach out because they didn't do it immediately. Not the case, right?

No, no. At any point in time, if the family decides, you know, I've waited a long time to get there. I've waited a number of years because I just could not do it sooner. We'll be glad to research so we can find out for you.

That also applies to families whose loved one was a tissue donor. Many times we can get lots of information from the tissue bank and we can let them know how many folks, you know, their lives have been not only saved but improved and enhanced through tissue donation. Incredible process. Great question.

Thank you for reaching out. Maybe you have a question or topic you want us to cover? info at lopa.org. That'll do it for episode 83 of The Get To Life.

Learned a lot, huh? We did. Yes. We want to first thank Cindy Reed out of the Iowa Alliance Eye Bank for sharing that.

It's such great information about eye research and how that preserves an opportunity that might not otherwise be there for those donors. And it was really good for her to share with us about her other Ricky. A great story. Yeah.

I love how she lit up there. I like that. Alright, so thanks to Cindy and all our partners across the country for working with us. Just read information about organ tissue and eye donation.

Now 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. Maybe this inspires you to sign up to be a donor. You can do that at register me.org.

Alright, we'll talk soon. This is a production of the Louisiana Organ Procurement Agency, Lopa. The Gifted Life is hosted by Lori Steele, Joey Boudreau, and Sally Gentry. Our producers are Kirsten Hines and Shalom Caraway.

We are recorded, engineered, and mixed in our Metery Louisiana Studio by Troy Perez.