Disability and Progress-June 13, 2024-Eye Donation

[00:00:00] Speaker A: KPI.org. [00:00:58] Speaker B: And greetings. Thank you for joining disability and progress where we bring you insights into ideas about and discussions on disability topics. We are the longest running disability show ever. I've always wanted to say that. Thank you for joining us on June 13, 2024. Charlene Dahl is my pr research person. Hello, Charlene. [00:01:20] Speaker C: Good evening, everyone. [00:01:22] Speaker B: Erin Westendorp is my podcaster. Hello, Aaron. Ha ha. He can't talk back, so that's always good. I'm sure he'll have something to say to me via email after. And tonight, joining us have doctor Joshua Ho, who is lion's gift, who's from the lion's gift of sight. He is the medical director. And Jolie Schmidt, who is also from Lion's gift of sight and she is a director of clinical operations. And we are talking about eye donation and how does this work? Thank you for coming in. [00:01:59] Speaker A: Hi. Thank you for having us. [00:02:00] Speaker C: Yeah, thank you for having us. Happy to be here. [00:02:03] Speaker B: Hopefully I got all those credentials correctly. I want to remind people that if you want to be on my email list, you can email [email protected] that's disabilityandprogressamjasmin.com. and we will email out every week who's gonna be coming up on the show. And you can also hear our podcasts if you want, ask your smart speaker or go and look that up. Disability and progress podcasts. Or you can hear the archives for two weeks after this show. So if you missed it, you can click and hear it. And if you want, you can go on the app store and download the KFAI app to your smartphone and be able to listen that way. So all those great options. Well, Doctor Howe and Jolie, can you first start one of you? Tell me by can you give us a brief overview of what the lion's gift of sight is and its mission? [00:03:11] Speaker A: Sure. So basically, the lion's gift of sight is an ibank, and it is our mission to restore sight through idonation. So to make a long story short, a little over 60 years ago, the University of Minnesota and the Minnesota Lions partnered to create the Minnesota Lions Eye bank, which we now call the lions gift of sight. And the chair of the department of ophthalmology at the time created a plan to ask families of deceased patients at the University of Minnesota affiliated hospitals to donate their loved ones eyes, and also worked with the School of Mortuary Science to come up with a technique for recovering the donors eye tissue. At the same time, the Lions Club started putting together some financial backing for the iBank. So things are essentially run the same way today with the University of Minnesota in partnership with the Minnesota Lions Vision foundation. But now, in addition to serving donors and their families in Minnesota, we're also working in North Dakota and parts of western Wisconsin. So we are considered a full service eye bank, which means we recover tissue from donors, make sure that it's suitable and safe for transplant or research purposes. Process that tissue and distribute it to transplant surgeons or researchers around the world. [00:04:33] Speaker B: We will get more into how that process works. Thank you. Can you talk a little bit about how each one of you got involved in a lion's gift of site and, you know, what inspired you to do this type of work? [00:04:47] Speaker C: Yes. So I'm the medical director for the iBank, and the medical director has to be a cornea trained physician. So I am a cornea surgeon at the University of Minnesota. I'm an associate professor. And basically, when I first was hired here at the University of Minnesota, I was just junior faculty. The longstanding medical director for the iBank, Doctor Doofman, who was one of the most famous eye bankers in the world. He had gotten sick and had stepped down from his post, and so, fresh out of fellowship, they said, do you want to take over the iBank? And that's kind of how I got thrown into it. So I have been medical director now for ten years, and it has been an amazing experience. [00:05:29] Speaker B: And. Jolie? [00:05:30] Speaker A: Well, I actually started working in plasma donation when I was in college, and I absolutely fell in love with it, and I thought that was what I was going to be doing for the rest of my life. I started kind of making my way up in plasma donation pretty early on and was in leadership pretty early on there. But as I moved up a little bit more, I kind of got a little bit uncomfortable with the corporate feel of plasma and the for profit model, and plasma donation helps so many people, both donors and recipients. But I personally wanted to move into something with more of a nonprofit vibe, and I got really lucky because when I first started looking for something else, there was a donor coordinator role with lions gift of site open, and I've been in ibaking ever since. [00:06:18] Speaker B: Cool. So you kind of started talking about what the process was. I'd like to start out by talking about the process coming from the donation, from the donors decision to donate the. The eye to the recipient receiving the transplant. Can you talk about how that works? [00:06:41] Speaker A: Yes, definitely. So when an individual passes away, organ tissue and eye donation agencies are notified and we start looking very closely at that individual to make sure that they are eligible for donation. So if they are eligible for organ and tissue donation, the eye agency kind of takes a step back and lets organ and tissue agencies take the lead on those cases. And then we dont want families to have to go through the donation process twice. So it can be kind of strenuous and kind of draining. So we want to make sure that we are working very closely with these agencies to share information instead of having the families undergo that process twice. So well take a backseat and then share that info with those agencies. But if we are the, if the donor is only eligible for eyes, we screen their information. We look very closely at their medical history and the current circumstances surrounding their death to see if they are eligible to be a donor, either for transplant or research purposes. If they are, then we approach the family to talk to them about I donation. If the family decides to move forward with eye donation, then we complete a medical and social questionnaire with them. And that questionnaire varies in length depending on if the person is eligible for transplant or research donation. The transplant one is much longer. It takes about 20 minutes. The research one takes about five to ten minutes. At that point, we coordinate the recovery of the donor's tissue and send our specially trained technician out to complete the recovery. The recovery technician brings the donor's tissue back to our facility in St. Paul, where if it's a research tissue, our research team works to find the best possible researcher to work with that donor's tissue. If it is a transplant tissue, a couple things start to happen. Our lab scientists look very closely at that donor's tissue to determine what type of surgeries the tissue might be suitable for. So they do that by evaluating the donor's tissue under a microscope. Very similar equipment, very similar to what you would if you were having your own eyes evaluated, if you were going to the eye doctor. We also have a team of medical director designees on staff who look very closely at the donors medical records. Again, they do a much deeper dive into that donor's medical history to determine whether or not that person is medically suitable to be a donor. So once all of that evaluation is completed and that donor is released to be a transplant donor, then our allocation specialist find a surgery that is suitable for that donor's tissue. So they find a surgeon and a recipient that is the best possible home for that donor's tissue. And, Josh, do you want to take it? [00:09:39] Speaker C: Yeah. So then I can chime in here. So then after that, they process the tissue. So a lot of the tissue is prepared and made patient ready at the eye bank. It saves the surgeon some time in the OR, and then the tissue is distributed to the surgeon, and the surgeon transplants tissue. And we're very fortunate in cornea transplantation at least, that the tissue is good for two weeks in cold storage. So in refrigerator, you can stay for two weeks. So we have the luxury to schedule ahead of time and kind of plan for surgery. And usually the corneas arrive at the surgery center a day before the surgery, and then we work around the patient's schedule. Something like Oregon, where sometimes it's an emergency and you hear, like, there's a heart available, you're rushing to the hospital. [00:10:14] Speaker B: They have a very limited time. [00:10:16] Speaker C: Exactly. Cornea. We have the luxury of scheduling at the patient and the surgeon's convenience. And so it's a very nice process. And, in fact, the technology that allowed us to do that, which is the corneal preservation media that allows us to store corneas for two weeks, was actually invented here at University of Minnesota. [00:10:34] Speaker B: Wow. [00:10:34] Speaker C: In Minnesota. [00:10:36] Speaker B: It's kind of amazing how much stuff is invented at the U here. [00:10:40] Speaker C: Yeah, yeah. Honey crisp apples. Yeah, that's right. [00:10:42] Speaker B: That's right. One of my favorites, Harrelson's. What makes tissue, like, safe and high quality? If I were to say that's a good, high quality tissue, what makes it a high quality tissue for an eye? [00:10:56] Speaker C: Yeah. The number one criteria that we care about for the donor corneal tissue is the number of cells on the back of the cornea. The back of everyone's cornea has a population of cells called endothelial cells. And these endothelial cells preserve the clarity of the cornea by pumping water out of your cornea. Without these cells, the cornea will swell up and eventually scar over and opacify, and these cells do not regenerate themselves. So what you're born with is all you ever get. And as you age, you lose some. As you get surgeries on your eyes, cataract glaucoma surgeries, you lose some trauma to your eye, you lose some. And so a lot of people run out of cells, or if they have scarring of their cornea and they need the cornea replaced, they need a cornea that has healthy cells. And so the good quality corneas have a lot of these cells because those are the only cells you get with that cornea. And so there's criteria for a bare minimum number of cells that you need for transplantation. But the more cells, the better usually the younger the donor, the more cells are there. But older donors can also have lots of cells, especially if they're older donors that have never had cataract surgery or any other eye surgery. They can have plenty of cells. And then obviously we don't want to see scars or any opacities on the cornea. So, nice and clear and lots of cells. That means it's a good cornea. [00:12:09] Speaker B: Is there like a number of cells that you'd say, like, I'm just curious. [00:12:14] Speaker C: Yeah. So bare minimum, it has to have 2000 cells per centimeter squared on the back of the cornea. And they can actually count the number of cells on the back of the cornea under microscopy. [00:12:24] Speaker A: Wow. [00:12:26] Speaker B: So go ahead. Sure. [00:12:28] Speaker A: There's also a very specific set of criteria that we follow for every single one of our donors to ensure that they're safe for transplant. In order to ensure recipient safety as well, we're accredited by the IBank association of America and registered with the Food and Drug Administration. And each one has a specific set of medical standards and required guidance for our transplant donors. So there's some serology testing, some blood testing that we have to run on every single one of our donors to make sure that from a safety perspective, they are okay to be transplanted. And certain medical conditions that are, that we have to stay away from to make sure that we're not passing anything along to the recipient as well. Right. [00:13:16] Speaker B: You talk a little bit about the cells, but I'm curious, like, can you share statistics, like how many, about the need for eye donation? Like how many people? Is there a lot of people on the waitlist? [00:13:33] Speaker C: Yeah. So fortunately, in the United States, actually, we don't really have a wait list. We actually have an abundance of corneas. I think in the US, people are very generous and many people donate their eyes, and also many more people are eligible to donate their eyes than they are eligible to donate organ. For instance, cancer is not a rule out for donating your eyes, even though for most organs it is. And many people die from cancer. And so we tend to have more donors for eye than organ. And every person who dies has two eyes to donate. Right? [00:14:02] Speaker B: Right. [00:14:03] Speaker C: So we tend to have more eyes than we use. For instance, last year in 2023, there was total 69,000 donors, which was a total of 130,000 plus eyes that were donated. Not all of them were ruled in, but in the US, 51,000 were transplanted. So we have an excess of corneas and actually we export corneas. [00:14:25] Speaker B: I was just going to ask if you could do that. [00:14:28] Speaker C: Yeah. So we exported 27,000 corneas to the rest of the world. Now the rest of the world does not have enough corneas. Globally, there's a huge deficiency of corneas. It's estimated about for every 70 patients who need a donor cornea, only one patient will actually get a donor cornea. [00:14:46] Speaker A: Oh, wow. [00:14:47] Speaker C: And there's statistics that says 53% of countries around the world have no access to cornea. And this is disproportionately affecting third world countries or the underserved and sort of underprivileged populations around the world. And so there is definitely a big issue with shortage of donor corneas around the world. In fact, only 25 countries around the world can actually meet their own domestic needs based on their own donors in their country. The US happens to have more than enough, though. [00:15:15] Speaker A: Wow. I heard a story recently. We have one particular surgeon that we work with, and he takes a medical missions trip to Honduras regularly. And while there isn't an official waitlist in really any country, but there isn't an official waitlist in Honduras. They have a notebook. It's just a regular college ruled notebook that they keep and that is where they keep their waitlist. So every time he goes to Honduras, he has to sort through this notebook that they keep there to determine, help him determine who is going to get a cornea transplant when he visits this country. [00:15:54] Speaker B: That's really awesome that they do that even. I'm sure it's tricky transporting the eye tissue and making sure it stays good for that time. [00:16:08] Speaker C: Yeah. The key is maintaining the temperature at around four degrees. You have a little window, two to five degrees, but it has to stay cold. You can't let it get warm, otherwise the cornea is no good. And so you have to be able to fly, get through customs, et cetera, all within a certain time frame that you know the ice is going to stay cold. Otherwise, if it warms too much, you get quarantined or you get stuck in customs for some reason, the tissue can go bad. [00:16:31] Speaker A: Aw. We have some really cool cooler systems. [00:16:36] Speaker C: That can maintain the temperatures for like 72 hours. [00:16:40] Speaker B: Oh, awesome. [00:16:40] Speaker A: We found one up to 96 now. [00:16:42] Speaker B: Oh, cool. I'm wondering, like the, when you hear about an eye bank, like, you think about the whole eye eye donation. So how many parts of the eye can be used to transplant? Is it just the corneas? [00:17:06] Speaker A: Not necessarily. So. Corneas are the most commonly transplanted part of the eye, but you can also transplant the sclera which is the hard white part at the back of the eye. [00:17:18] Speaker B: Okay. [00:17:20] Speaker C: Yeah. And aside from transplantation, so there's the cornea, which is the clear central window of the cornea. You can also transplant stem cells from the eye, which live where the white part of the eye meets the clear part of the eye. That's called the limbus. And then, like Jolie said, you can transplant the white of the eye, which is called the sclera. And that's usually a patch for reinforcement of holes in the eye. But beyond that, we often recover entire globes for research, because, actually, the number one, two, and three cause of blindness in the US is macular degeneration, glaucoma, and diabetes. [00:17:54] Speaker B: Right. [00:17:54] Speaker C: And those have nothing to do with the cornea, but there's a lot of interest in fighting blindness and curing these diseases that affect blindness. And a lot of that research is done in the retina or in the trabecular meshwork, which is damaged in glaucoma. And so researchers are asking for whole globes that have these parts of the eye intact for research. And so we do often recover whole globes for the purpose of research. [00:18:18] Speaker B: So what would make a person eligible to donate their eye for research, but not for an actual recipient to use that tissue? [00:18:31] Speaker A: There are several things. So, surprisingly, there are not a lot of things compared to organ and tissues that can rule you out to be a donor. And we always tell people when they reach out to us, like, don't rule yourself out, because a lot of people will say, oh, I have terrible eyesight. I couldn't possibly be a donor. That's not necessarily true. There are things like dementia, for example, Parkinson's, multiple sclerosis. Those types of conditions will rule you out for transplant, but you are still able to be a donor for research purposes. Those are kind of the big ones. The only things that are really going to defer you from being a donor overall are going to be conditions. Viral conditions, like hepatitis B, hepatitis C, HIV AIDS, prion diseases, such as koroitsviliakov disease, etcetera. [00:19:35] Speaker B: And because we're assuming that those are carried forth with those tissues. [00:19:40] Speaker A: Yep. Those types of conditions are things that, out of an absolute abundance of caution, we do not want to expose our recovery technicians, too. [00:19:51] Speaker C: Yeah. So it's for the safety of the IBank staff and the researchers. And then, obviously, you wouldn't transplant those because of concern that you could transmit those viral infections to the recipient. And there has been documented cases of transmission of hepatitis B, rabies, and something called prion. Disease, Creutzfeld Jakob disease with transplant of cornea. And so we follow these guidelines to, to protect our patients. [00:20:18] Speaker B: So we just, I mean, recently got out of a pandemic. How did that affect idonation and the recipient of idonations? [00:20:31] Speaker A: We saw a huge impact right away, especially in the way that we are handling our incoming potential donor referrals. We had to treat individuals, specifically individuals who had pneumonia, completely differently out of an abundance of caution, and rule them out for donation when normally having pneumonia wouldn't really be an issue. So we immediately saw a large increase in our number of donor referrals. And on top of that, we were learning new things about Covid-19 nonstop. So our criteria was changing every few days. So there were a lot of variations in the number of eligible donors and in the number of donor tissues that were able to be ultimately released for transplant after being medically reviewed. Also, right at the beginning of the pandemic, elective surgeries weren't really being allowed to be performed. So we saw a decrease in the number of transplants that were being done as well. So we were kind of constantly monitoring the number of donor tissues that we are working with. So we didn't want to be bringing in donor tissues that we weren't going to be able to find a home for. So there were a lot of considerations to take place right at the beginning of the pandemic. [00:21:55] Speaker C: Yeah, so, yeah, like Jolie said, you know, in the beginning of the pandemic, we just didn't know anything. And so we were afraid that, you know, if we took donor tissue from someone who had Covid diagnosed and you transplanted that cornea, the patient, the recipient would get Covid and potentially have their life threatened. And so that's not something we want to do. But we didn't know anything about COVID at the time when it first came out. And so we were just, like, ruling out everybody with, like, an unknown fever. [00:22:18] Speaker B: Caught, which would be everyone practically. [00:22:21] Speaker C: You were sick at the time of death, and we didn't know why. You know, we were like, it could have been Covid. Don't get that corner right. You know, someone with a. Concerning x ray, don't get that. And so we lost, it's estimated four to 14% of donor referrals at that time were just ruled out. [00:22:35] Speaker B: Wow. [00:22:35] Speaker C: They were also, then when COVID testing came out, you know, that became a thing. We were checking it in post mortem donors. So after the donor had died, these tests weren't validated for testing in patients after death, but they were using it, and that was ruling out another 5% of patients, because we were finding that a lot of these patients were dying with. With COVID and they weren't eligible as donors. But then, as you know, we started understanding more vaccines started coming out. We started being less concerned about COVID Also. The strains started becoming less lethal. You know, as we got to Delta and Omnicron and all these other things, those strains became less lethal. So there was a lot less concern about, you know, even if you transmitted the disease, it wouldn't be life threatening, etcetera. And so the criteria started to relax, and then it had less and less of an impact on our donor pool and the supply of donor tissue. And, in fact, I'm shameless plug here, but the University of Minnesota in our lab, was actually the first to report in the world that Covid could directly infect the cornea if you inoculated the virus directly into the cornea. So we were the first to show that there was a concern with transmission of the virus through the cornea transplant. However, we also found that the inoculum that you require is very high, and most patients can never get that much viral load into their cornea, even if they have really bad disease in their lung. And so it became less and less of a concern over time. And so nowadays, we don't rule out too many for Covid. [00:24:05] Speaker B: What are some of the common misconceptions about eye donations that you would like to tell people about? [00:24:15] Speaker A: Yeah, so I think I mentioned this a little bit already, but one of the biggest ones is that people with bad eyesight can't be donors. That is definitely not true. People with bad eyesight, the things that cause their bad eyesight, typically don't affect the cornea. So they definitely can be donors, and they can have perfectly healthy cornea tissue that could restore sight in another individual. People who have had lasik or other eye surgeries or eye issues like macular degeneration or cataracts can most definitely be donors. The manner of their death may not affect their ability to be a donor as well. People with cancer who cannot be organ donors or donate other types of tissues most definitely can be I donors. And if they are not eligible for transplant, there is a very good chance that they can still be eligible to be a research donor. [00:25:19] Speaker C: Yeah. So, like Jolie said, I think a lot of people assume, like, if they wear glasses, if they've had cataract surgery, if they're glaucoma, macular degeneration, diabetes in their eyes, they can't be donors. But actually, all those people are fine donors because the cornea's usually not affected in those cases. And from a research standpoint, we want those donors to donate their eyes because, you know, someone who has macular degeneration, someone who has glaucoma, someone who's even gone blind from those diseases, their eyes are actually very valuable for finding a cure for that disease because people want to study the real disease state in human eyes. [00:25:52] Speaker A: Right. [00:25:53] Speaker C: And so that's a huge opportunity to provide something to the cure as someone who has suffered and then can donate their eyes at the end of life. I think also that, like Jolie said, people think, like, if I have cancer, I can't donate it. Stroke, heart attacks, all these people can donate. And so eyes can almost always be donated, unless for certain infectious diseases like HIV, hepatitis, et cetera, those are rule outs. But almost every other condition, they can be done, they can still be donors at the time of death. [00:26:27] Speaker B: So I feel like things have changed so much. You know, my, you know, I guess was probably 1516 years ago, my mother died, and I tried to get her eyes donated, and she died of complications from a stroke. And they said no. But I feel like if you don't talk to the right people, you may not get the right answer or, you know, they didn't really provide a reason why. [00:26:57] Speaker C: Yeah. [00:26:57] Speaker B: Have things changed a great deal in the last 15 years? [00:27:01] Speaker C: I think there's a lot more understanding of eye donation as being slightly different from organ donation because people would say, like, oh, if you had a stroke, you can't be an organ donor because you didn't have blood flow in your body to your vital organs. And so those organs are no good for donation. But the eyes don't need blood. The cornea is clear, and it's avascular, so there's no blood vessels to the eye. So even if the patient had no blood flow, all the organs have failed. The corneas are still okay for transplantation. And again, when I talk about research, if there's disease in the eye, that's still useful for researchers. So it's important to recognize the difference between organ donors and eye donors. And I think that's becoming more obvious for hospitals and medical examiner offices that deal with donor referrals. And that's helped that process. [00:27:57] Speaker B: How does the lion's gift of sight support the families of donors during the donation process? [00:28:05] Speaker A: During the donation process, our donor coordinators are. They're trained to provide as much education and empathy during those initial phone calls. As they possibly can. Informed consent is so important, and understanding that the family is dealing with such a difficult time and going through so much is. It's such an incredibly important thing that the donor coordinators need to understand. And no matter how busy we are in terms of dealing with the referrals, we need to keep in mind that when a person is grieving, it is so hard to absorb information. And we need to be empathetic, and we need to know that it is our job to provide support and make sure that the family knows exactly what we are talking about and knows exactly what they are consenting to in that moment. And after the donation, we have a variety of aftercare that we do with the families, and we send out a commemorative certificate, and we try to send that out as quickly, quickly as possible so that the family can choose to display it at a service if they wish to. Further along down the line, we send out an outcome letter that explains where that donor's tissue went to, whether that be transplant or research or both. And it also invites them to call us if they have any kind of questions. And they do. They call us quite frequently, really, with questions and asking follow up information about what exactly their donors, their loved one's tissue went to and what exactly their gift provided. Facilitating the writing of letters is another form of aftercare that we provide, and it gives the donor families the opportunity to potentially tell the recipient about their loved ones or the researcher about their loved ones. And we also do an annual program to honor our donors. And this is one of the things that, as an ibanker, I am the most proud of. And I know that we have Jodi Altenhofen. She is our community services liaison, and she is the one who organizes this program every year. She does such an incredible job at putting together this program, and it is such a gorgeous event. And this program's sole purpose is to honor the donor. It's not a fundraising event, it's not anything else. It's just to honor the donor and give the families a space to learn a little bit more about what exactly their gift has done. Give them the space to kind of grieve and heal in a way. And it's just. It's a beautiful program. [00:31:08] Speaker B: What, I presume that there is some margin of rejection for donation. So how has technology advanced to help that? What are the statistics for rejection, if any, for eyes? [00:31:24] Speaker C: Yeah. So for corneal transplantation, it is. It's the most successful cornea type of transplant done in all of medicine. And the first transplant solid organ transplant done in medicine was cornea. The cornea, fortunately, is avascular, meaning there's no blood vessels that normally go to the cornea, and so there's lower risk of rejection, but there is still risk of rejection. An average full thickness corneal transplant has, in its lifetime, about a 20% rate of rejection. It can be reduced with topical steroid eye drops. And so advances in sort of the medications have helped reduce the risk of transplantation rejection. But what has done more than anything is actually advances in transplantation technique. So nowadays, instead of transplanting the entire cornea, we typically transplant just the layer of the cornea that is diseased. And if you just do partial thickness corneal transplants, the rate of rejection can be reduced to 0.2% or less. [00:32:18] Speaker A: Oh, wow. [00:32:20] Speaker C: Selective transplantation of just the diseased portion of the cornea, not transplanting the healthy parts of the cornea, has reduced the rates of rejection significantly. [00:32:30] Speaker B: I do also realize that transplanting organs to somebody, they tend to need rejection drugs for the rest of their lives. How does this crossover with eye transplant? [00:32:46] Speaker C: For typical corneal transplants, you do not need to take anti rejection or medications orally, but we do have them on steroid eye drops, which are anti rejection eye drops for the eye. The eye drops are obviously much better tolerated without a lot of the side effects that the pills have. But usually for cornea, because there's no blood vessels that go to the cornea. We call the cornea immune privileged, meaning the immune system doesn't typically see the cornea, and so it is much less likely to reject and does not require systemic use of immunosuppression. [00:33:18] Speaker B: I presume there are people who would like to be anonymous, both the giver and receiver, but. So what steps do you take to do that? But also, can they know about each other if they want to? [00:33:35] Speaker A: Yeah. So everything is entirely anonymous and confidential at all times. So on the donor side of things, when a person becomes a donor, we apply something called the ISBT 128, which is a global numbering standard for numbered and identified medical products of human origin. So essentially, donors and their tissues are assigned unique numbers, and that allows for everything to be traced, just in case, for example, something goes horribly wrong. And we need to be able to track down a donor tissue that wound up being transplanted in Pakistan to make sure that we need to be able to find where that came from, because something, there was an infection and something was horrible. But it keeps that donors identity safe and confidential at all times when it comes to following up with the recipients if for some reason, the donor family wants to reach out to a recipient, or vice versa, that has to remain confidential as well. Sometimes when they want to connect, instead of facilitating a meeting, we can facilitate the writing of letters. [00:35:02] Speaker B: Ah, gotcha. So they don't really get to do that for protection, I'm sure, on both ends. [00:35:11] Speaker A: Yeah. And it does happen. It has happened a couple times in the past, but both. It's rare. It's very, very rare. And if they want to try to facilitate that, we have contact information on our website for our community services liaison. So the letter writing begins, and both parties have to ultimately agree for that connection to happen. But usually how it works out is one party writes a letter, and we make sure that anonymously, the other party receives it. [00:35:56] Speaker B: And do you have any good, excuse me, stories or testimonials that you could share in regards to donors or people donating? [00:36:05] Speaker C: Yeah. As a corneal surgeon, I see it a lot, and it's amazing and very touching. I always think of this one young little girl who I did a transplant on, born with a genetic disorder that caused her corneas to fail early in life. And somewhere around age three, she started to have severe light sensitivity, pain, blurry vision, and she basically lived in her dark room and would not go outside, could not go outside. Even when she came to clinic, she would have a thick blanket over her head. We just could not get her to take the blanket off of her head because of how light sensitive she was. And honestly, even to examine her eye. We had to sedate her in the operating room just to even see what was going on with her eye. And we ultimately did corneal transplants in both of her eyes. And she recovered beautifully, started to live like a normal kid, you know, and her dream was to be a youtuber. Now, every time she comes to clinic, she's recording everything, and she's just so much more of a normal kid. Now, I have another patient and an elderly lady who we did coronal transplant on. And I remember post op day one when we took off her patch, she was just, like, looking around, just amazed. And she turns to me and she's just shocked. And she said, doctor, I cannot believe how young you look. And then she turns the other way and looks at her husband and then is shocked again, and she says, I cannot believe how old you look. And it was just a really, oh, that's funny, touching moment. You know, a lot of these patients after the transplant, and they start to see. It's always, like, little things that they pick up on first, you know, they start fussing with their hair. They notice, like, oh, like, I haven't shaved as clean as I used to shave when I could see. It's little things that they notice. And then as their vision slowly improves through the weeks and months, you know, they start talking about hobbies. They're starting to pick up again, they're going fishing again, and they always get really happy when they start being able to drive. You know, peak satisfaction is when someone can play golf or see their golf ball or nowadays it's pickleball. When they can play pickleball again, they're just super happy. And so you see this a lot. Just as they recover vision and they start to recover function and sort of start to live life the way they used to live, it's very meaningful. [00:38:26] Speaker A: I've been really fortunate because I started out in donor coordination and kind of progressed to the role that I'm in now. So I've worked with, directly with donor families, and now I'm, I oversee the coordinators and also oversee the allocation side of things. So I work both with donor families and with recipients and surgeons now. So I get both sides of it and. [00:38:56] Speaker B: Right. [00:38:58] Speaker A: It's fascinating and also kind of bittersweet in a way because we're dealing with death and grief every single day, but at the same time, when you're dealing with donor families, you see as hard as it is, you also see an element of hope and peace that it brings. [00:39:24] Speaker B: Right. [00:39:24] Speaker A: And I don't want to share any specific stories because I haven't been given permission to. And it's such a difficult topic to talk about, and I don't want to cry on radio, but it's just, it helps people, in a way to just bring them a little bit of closure in a really difficult time in their lives. [00:39:52] Speaker B: Yeah, I can imagine. So how long does it take for full vision or as much as they're going to get to come back from when they have the surgery done? [00:40:04] Speaker C: Yeah. With a corneal transplant, it varies based on the type of surgery. So if they get a full thickness corneal transplant, it can take six to nine months or even more. We usually, we usually tell patients it can take six to nine months because they get the transplant and the stitches have to stay in for almost up until six months. And then we start to take out the stitches. And then after the stitches are all out, they get fit for glasses or contact lenses. So it takes quite a while. Now, partial thickness corneal transplant surgeries, which involve much fewer stitches, much smaller incisions the vision can recover within four to six weeks, and so it can be a very dramatic, very rapid improvement in vision in those. Those patients really feel the impact. [00:40:44] Speaker B: Right. So it's interesting because you think about how they regain their vision and that they're very excited, but I hope that, you know, us on the other side, always hope that there's somebody there to tell them if things do reject that this is not the end of the world, even though it's a very big disappointment that there are certainly ways to do, although not everything, most things that they used to do after, you know, they pick up. [00:41:15] Speaker C: Absolutely. And we have a very robust, at least at the University of Minnesota, we have a very robust low vision service, low vision service, which works, you know, with. With functional tricks and things to sort of live a fulfilling life, even. Even if vision is not restored or not back to what it was before. And many diseases we deal with, honestly, we don't have cures for many corneal diseases. We are fortunate that corneal transplant can fix most things, but things like diabetes, diabetic retinopathy, macular degeneration, glaucoma, honestly, there's usually no cure when you lose vision from those. [00:41:55] Speaker B: What kind of. How do you guys raise awareness of your program? [00:42:02] Speaker A: We have a few different initiatives that we focus on. Every April is Donate Life Month, which doesn't just focus on eye donation, it also focuses on organ and tissue donation. And we work very closely with Donate Life America to raise awareness for donation as a whole during that month. It's very busy. We are partner relations. Teams are constantly out at events during those months. November is idonation Month, which is very idonation focused and once again, incredibly, incredibly busy for our teams. And we're out doing educational events at hospitals and medical examiners and throughout the University of Minnesota. We have several educational events throughout the university during that time as well. And then our education team is working on increasing awareness all throughout the year as well, trying to find informational events for the general public and working very closely with the Minnesota Lions. We are the lions gift of sight. The Minnesota Lions are a huge part of what we do to spread awareness. The Minnesota Lions Visitor foundation, we couldn't operate without them and without the help that they provide us. So we're constantly working with Lions clubs and attending club events to help spread awareness. We have a new initiative that we recently put out called Lions Save lives to help spread awareness of donation through that. So it's. Yeah, the lions are incredibly, incredibly important to us and a huge supporter of our mission. [00:43:58] Speaker B: In general, what are some obstacles or challenges that the organization faces in promoting or facilitating eye donation? [00:44:09] Speaker A: You know, a big one is eye donation in general is something that just isn't really talked about. [00:44:19] Speaker B: Right. [00:44:20] Speaker A: People don't know that it exists, and people don't know that you can donate your eyes. There's also donation in general in communities of color in particular. There's a lot of mistrust in the medical community, and it's very well deserved mistrust that dates back several years. And so what we have been trying to focus on in the last few years at Lion's gift of sight is starting some general outreach within communities of color to try to focus on education and breaking down some of that mystery. Trust and education is kind of our starting point there because it is, it's not our job to waltz into communities and say, you need to. You need to register to be a donor. You need to be a donor. That's not our place. It's our place to provide education and try to earn back some of the trust that has been broken down in the medical community and allow people to make decisions for themselves. [00:45:41] Speaker B: I'm wondering, guys, how the listeners can get involved with lion's gift of sight, either by volunteering, donating, or advocating for eye donation. How can they do this? [00:45:54] Speaker A: Well, you know, we typically don't have people who just do general volunteering. There's not a lot of opportunities for that in our organization, but we do have some special events where there are those opportunities. So what we always recommend for people is to reach out to our community services liaison, Jodi Aldenhofen, whose information can be found on our website under our staff page, which our website is lionsgift of Sight. Oh, gosh. What is our website? Lionsgiftofsight umn.edu. there we go. Got it. [00:46:30] Speaker B: You can do that one more time. [00:46:32] Speaker A: Lionsgiftofsight umn.edu. but you know, really, the absolute biggest thing that you can do is to register to be a donor and to talk to your family about donation and make sure that your loved ones know your wishes to be a donor. And just general advocacy for donation, for eye donation, and making sure everybody knows that it exists and that's what you want to do. [00:47:04] Speaker C: I think there are opportunities to also volunteer with the Minnesota Lions Vision foundation, not directly at the Ibank itself, but through the Vision Foundation. I think there's opportunities to collect glasses for people or participate in vision screenings at the state fair or things like that. So there are other volunteer opportunities not specifically related to the IBank. The Minnesota Lions Vision foundation really is the bedrock of the iBank and really provides funding for the iBank and also a lot of the research that we're doing at the university really funded by the Minnesota Lions Vision foundation. Even what I mentioned about the research about COVID that was done related to corneal transplantation, all funded by Minnesota Lions Vision foundation. So getting involved with that is also a great way to help eye donation in the state overall as well. [00:47:52] Speaker B: And I guess, what message would you like to convey to our listeners about the importance of an impact of I donation? [00:48:03] Speaker C: My biggest thing about eye donation is that it can be more far reaching than you think. You can impact people in many, many ways. Not only just the ability to restore sight in someone who has a corneal disease, but the potential to drive research that can find cures for other blinding diseases like macular degeneration, glaucoma. And these can just transform the field and potentially be beneficial to people all across the globe and also to later generations, your children, grandchildren who may also face issues with their eyes. Your donation can have this lasting impact even way, way down the years. [00:48:44] Speaker A: And from the perspective of a donor and a donor family, it can bring an element of peace and healing during a really difficult moment of grief and pain in your family's life. Yeah. And the need for eye donation is so great. So learn more and register to be a donor. Talk to your family if you have any questions. [00:49:14] Speaker B: Is there an age where you're too old to get an eye donation? [00:49:19] Speaker C: No. Our ibank actually doesn't have an upper limit on research tissue for donating, for research tissue for transplantation. We do have an upper age limit. [00:49:30] Speaker A: Yeah. To be a transplant donor, the upper age limit is 80, which is actually higher than most eye banks in the country. Most eye banks are a little bit lower than that. For sclera tissue, you can donate up to the age of 100, however. [00:49:46] Speaker B: Wow. Cool. [00:49:48] Speaker A: Yeah. [00:49:49] Speaker B: But what about receiving. [00:49:51] Speaker C: For receiving a transplant, there's no upper age limit, as long as we think that you could benefit from it and you are healthy enough to undergo anesthesia for surgery. So some of our really elderly patients, sometimes they're. [00:50:05] Speaker B: That can get a little tricky. Yeah. [00:50:07] Speaker C: The risk of surgery is outweighed by the benefit. But technically, if you were a very healthy 10 zero year old patient and you could benefit from coronary transplantation, you could still, still get the surgery. [00:50:19] Speaker B: I'm curious to know how you see things are changing so fast with the medical community, especially in the presence of AI. How do you see AI affecting this type of work? [00:50:35] Speaker C: Yeah, there's a lot of interest in AI research to help improve how we screen donor corneas, how we decide whether donor cornea is good quality for transplantation. Also, people are using AI to be able to screen eye diseases, do mass screening of patients through an automated fashion. And so AI is being applied in many ways in the field of ophthalmology. Our iBank, actually funded by Minnesota Alliance Vision foundation, is actually developing software that is sort of smart software to help determine the quality of donor corneas before it goes out to surgeons. So we have a better way to determine which are the best corneas that will give the best outcomes for patients. [00:51:22] Speaker B: Anything that is on the horizon that you know is just ready to unroll that you think that will make things easier for you. [00:51:32] Speaker C: So this is not something necessarily specific to Minnesota, but nationwide, there's a lot of companies that are working on what are called endothelial cell injections. And so I told you, the most important part of the cornea is the cells on the back of the cornea. [00:51:44] Speaker B: Right? [00:51:44] Speaker C: Right. And 40%, I think, of all transplants done in the US are actually to replace those cells. And there is technology now that you can grow these cells in the lab, and you can grow a lot of these cells from just a single donor cornea, and then these cells can be injected in the eye, and it treats diseases of the endothelium. And so there's in clinical trials, currently at least three clinical trials, studies ongoing, to test the efficacy of injecting cells. And this could help solve some of that donor cornea shortage around the globe. If we can just simply culture out a lot of cells from a few donor corneas and then inject the cells into people's eyes instead of doing traditional corneal transplants. [00:52:29] Speaker B: All right, I have to ask, do you think we'll ever be at a point that you can ever transplant an entire eye? [00:52:39] Speaker C: Yeah, interestingly enough, there was an entire eye transplant. [00:52:42] Speaker B: You had to know it was gonna go there. [00:52:43] Speaker A: Yeah, it just happened. [00:52:45] Speaker C: So it has happened in New York. The eye is working. It moves, but it doesn't see. So it's more of a cosmetic procedure at this point, because you can connect the eye to the blood vessel and stuff. But what is really hard is connecting the eye to your brain. That is something that technology is still working on. There is another avenue that is being pursued, I think, a company in California where they are implanting brain chips that can communicate with a camera, you wear on your glasses, and the camera will send a signal directly to your brain, the part of your brain that processes images. And so it bypasses the need for an eye, basically, because it basically connects the camera directly to your brain. And we're excited to see where it goes. I think the technology is still in the beginning stages, but we do know that you can take a camera and connect it to a chip implanted into the eye. And patients can see. Patients who have no vision before can see, but they have to still have an eye. But in planting a chip in the brain, you can actually help people who have no eyes at all still be able to see. [00:53:49] Speaker B: Okay, another show coming up. Thank you guys very much for being on. I really appreciate it. [00:53:56] Speaker A: Thank you for having us. [00:53:57] Speaker C: Thank you for having us. This was really fun. [00:53:59] Speaker B: Thank you. And this has been disability and progress. The views expressed on the show is not necessarily those of KFAI or its board of directors, but they are of us. My name is Sam. I'm the host of this show. Charlene Dahl is my research pr person. Erin Westentorp is my podcaster. This week we were speaking with doctor Joshua Ho, who is from Lion's gift of site medical director, and Jolie Schmidt, who is Lion's gift of sight director of clinical operations. And we were talking about eye donation and how it works. If you want to suggest a show topic, you can email [email protected] or just keep listening. We hope to bring you plenty of stuff in the future. Thanks so much for listening. Goodbye.org.