Cornea Transplant Surgeons & Corneal Transplant Recipients

0:00 Hi, it's Doctor Robert Siker. Thanks for tuning into Episode #23 of The Doctor Podcast Show. Today I'm going to be discussing a topic that's very near and dear to my heart, and that is the topic of corneal transplantation. As you may know from my other episodes, I'm an ophthalmologist. I specialize in cornea and also specialize in corneal transplants. The history of corneal transplants is very interesting. In the early 1900s, there were a group of eye surgeons who realized you could transplant the cornea for one person who dies and donates their eye and donates their cornea into another person who has a cornea problem.

0:41 There were many people who had either injuries to their corneas or had infections of their corneas or sometimes genetic disorders of the corneas who needed new corneas. The big problem was there was no way to find a corneal donor because there was no organization that did that. In the mid 1940s. There was a famous eye surgeon, R Townley Payton, here in New York City who had a great idea that instead of surgeons hunting for donor corneas, he would create what's called an eye bank. An eye bank is an organization that collects eyes and corneas from people who die and pass away, donate their eyes, donate other organs, and then those corneas can be given to surgeons who have a patient in need of a corneal transplant.

1:29 So the first eye bank in the entire world was created by Doctor Peyton with the help of some influential wealthy friends that he had in media and in politics. This eventually led to the creation of many other ibanks around the country. There are about 100 ibanks now which supply corneas to people who need corneal transplants. And in about 1961, there was created the Ibank Association of America, which basically helps all the eye banks around the country to get tissue. These eye banks now cooperate with each other.

2:07 So if you need a cornea in New York and there is not one available, we can have one from California that that comes here. When I first started doing corneal transplants many years ago, we were unable to store corneas. They only lasted 24 to 48 hours. So most of my corneal transplant surgeries were done as emergencies at night or on weekends. I would call the patient say we've got a cornea come into the operating room quick. Fortunately about 2025 years ago there was invented a solution that would allow us to store corneas for approximately A5 to six day period.

2:47 So corneal transplant surgery is now no longer an emergency usually unless it's due to some trauma or some other acute episode. So currently we can schedule corneal transplants for patients, which makes it much better for the patient and the family. So today I invited some guests to join us on the Doctor podcast show who were involved in corneal transplants in various ways. And I'd like to introduce my my guest to my right here is Doctor Himani Goyal. Dr. Goyal is the Chair of the Medical Advisory Board of the New York I Bank or the The Ibank for Site Restoration.

3:29 It's known Doctor Goyal makes policy for the ibank. There's a committee of other doctors such as myself and through her leadership, we make great policies which allow us to provide great corneas for patients in need of that doctor. Goyal is also a clinical assistant professor of ophthalmology at the NYU Langone Medical Center and also at the NYU Grossman School of Medicine here in New York City. And she's also the Chief of Ophthalmology at the Bellevue Hospital, which is the largest municipal hospital in New York City and one of the largest hospitals actually in the country.

4:07 So thanks for coming. Today. We also have Mr. John Papanak, who's been very nice to come today. Mr. Papanak has had corneal transplant surgery in the past. He's a recipient and he's going to be telling us some information about his experiences. With that, we also have Eduardo Gonzalez. Thanks very much for coming, Eduardo, today. We appreciate it. Eduardo's also a corneal transplant recipient and he's also on the I Bank's Leadership Council, volunteering and helping with the I Bank. So that'll be great.

4:42 And we also have Maria Chalco here to my left, who's the communications manager for the I Bank for Sight Restoration in New York and we'll be speaking with her as well. So Hermania, I'd like to start with you. Could you tell me about corneal transplants? What kind of patients need corneal transplants and for what sorts of conditions? Yeah, thank you so much for that lovely introduction. It's really nice to be here with this group. But as you alluded to already in the explanation, corneal transplants are when you know, when you look at the eye, you see the colored part of the eye, you see the white part of the eye.

5:20 The cornea is actually the clear cover over that clear, that colored part of the eye. It's the first surface that helps us to focus the light as it enters the eye. And any loss of that clarity or its perfect shape will either distort your vision or blur your vision. And so any disease processes that can affect the cornea in that way could potentially benefit from having a transplantation. Corneal transplants have come a long way even. Yeah, since I've been in practice. It's really amazing to hear your history about it too.

5:55 But so those conditions can include something that happens over time, like something that can cause the cornea to get swollen. It loses its clarity if you get an injury and it heals, but then the cornea doesn't heal clearly or loses its perfect shape. Those are conditions that we can schedule a surgery, get get the cornea transplanted and then in acute situations if you have an infection that's threatening the cornea that needs to be replaced or a trauma. So really, those four major things come to mind.

6:29 Right. I also have some patients who have genetic diseases like Fuchs dystrophy, which is a common condition where the cornea kind of ages prematurely and they eventually need corneal exactly transplants as well and certain types of infections, for example, herpes simplex virus infections. So I brought today a model of the eyeball. This is about 10 times the size of an actual human eyeball. The cornea is the front of the eye, it's the window of the eye and the eye is the window to the soul as we know.

7:00 So normally the cornea is crystal clear, it's totally transparent. So it's like looking through a clear window pane and it focuses the light that comes into the eye. When a cornea is damaged or injured or has an infection, it becomes like looking through frosted glass window pane like in your bathroom you you can see light through it, but you can make out any images and that's basically where where patients need corneal transplant. What what is the most common condition that you do corneal transplants for Himani?

7:37 So that has also evolved since the beginning, right when I was in training we were doing really only full thickness transplants and we did it for any disease of the cornea that needed to be fixed. We do full thickness corneas for conditions like keratoconus, we would do it for Fuchs, the swelling of the eye, any of these dystrophies for trauma, for infection. Now we can actually take the cornea into different layers and transplant different layers. And so that's really changed the game and the surgery a lot.

8:11 And so for us, the most common that I perform now is called an endothelial keratoplasty, which is where we replace the inner layer of the cornea. And for for some of the most common reasons, right when we, we do cataract surgery a lot, there's patients who can lose that and they'll feel that inner layer, the health of that inner layer from prolonged surgery or from even from trauma or anything like that. And so we're replacing that layer and that's probably the most common. And then I would say secondly it's it's probably scar related from from trauma or from infection.

8:45 Right. So when I was originally trained, we we only did the full thickness corneal transplants, which is very technically demanding because you have to take out the entire cornea and then put in a new cornea. And then we basically sew the new cornea into the old cornea with a very fine stitch made out of nylon. It's called Teno nylon, which is thinner than one of your hairs. And this is all done under a microscope with about 10 to 15 power magnification. Yes, when I first started doing transplants, my patients would have to be a red bed rest for a few days.

9:21 They'd stay in the hospital for about 5 or 6 days. Now it's become outpatient surgery. Patients go home the same day. What kind of anesthesia do you usually use for your corneal transplants? Well, if it's going to be a full thickness corneal transplant, we're still doing general anesthesia. It's the safest for the patient because like like you said it's it's you know it's the eye is fully open, you know it's usually contained organ and once you take there's no pressure. So really it's something that you time is of the essence.

9:54 You want to be able to get that chamber reformed so the contents of the eye stay where they need to be. So for full thickness corneas, I do general anesthesia as well, make sure the patient's calm, everything is relaxed. But for when it comes to partial cornea transplants, we actually still have the integrity of the eye where. So we can do those under monitored anesthesia with a little bit of local anesthesia. Right. So the eye is numb, patient doesn't feel anything exactly, and there's an anesthesiologist present.

10:21 Makes the patient kind of happy and relaxed and mellow. And those surgeries can take about 45 minutes to an hour, sometimes even half an hour if everything goes very well and smoothly. So that allows for a quicker recovery for the patient. The patient's able to get back to their normal activities much quicker, which is pretty amazing. Just to give the audience an idea, the corneal transplants are actually the most common transplant done in the USA and the world. They're about 50,000 corneal transplants done annually in the USA.

10:55 That's about 1000 a week and that's split up amongst about 100 eye banks. Compare that to other transplants, there are only about 25,000 kidney transplants done annually in the USA and maybe about 10 or 5000 liver transplants, heart transplants and lung transplants. So corneal transplant aren't isn't as exciting as a heart transplant or liver transplant, but there's actually much more than done. One of the thing I want to ask you the the cornea is very immunologically different than the entire rest of the body, which is incredible.

11:33 So if you have a kidney or heart or liver or lung transplant, you need to be an immunosuppressive drugs the rest of your life. Otherwise your body rejects this foreign organ. But tell us why with a corneal transplant, you don't need to be immunosuppressed after the surgery? So the eye is a very privileged organ. It's a part of our body, but it's actually external, like one of the most external organs. There is a direct blood supply, but as you get to the cornea, it actually becomes an indirect blood supply.

12:06 So what we it's what we call a vascular. One of the reasons why we need to get a donor match for all the other transplants is because it's supplied by the blood and the blood needs to be compatible so that you don't reject the tissue. And for corneas, we are very lucky and we call it a privilege because we don't have to do donor matching because it doesn't have a direct normally does not have a direct blood supply. And so that is the reason why we can get away with, we actually use eye drops, it's a topical instead of a systemic immunosuppressive, we use topical eye drops, It can reject you know as there is a healing process sometimes, sometimes blood vessels will grow in that area in an effort to heal, but it is much less than any other organ.

12:58 And then as we get into the partial corneal transplants, the necessity for that immunosuppression is even less and that's a huge benefit because of the side effects of immunosuppression in itself. And also for the patient to be compliant with having to do drops every day, it's actually really nice. One of the other thing that's really nice about evolving into doing partial corneal transplants is that when we do a full thickness, we are actually trying to manually recreate a perfect shape, which takes a whole lot of practice.

13:32 And the nice thing about a partial transplant is that we actually have, we leave whatever perfect anatomy is there behind to use as our scaffold and it makes our surgeries that much better and it makes the vision that much better. It's actually, you know, it's it's been a great evolution to be a part of. Yeah, it's been great. So now we used to do full corneal transplants. We now do something called D SEC DSEK, which is an abbreviation and DMEC, DMEK corneal transplants, which are this partial thickness which allows for a much quicker recovery for the patient.

14:11 Tell as as the chair of the Medical Advisory Board, tell us what the eye bank does to analyze donor corneas to make sure that they're good and appropriate and proper so that the patient receiving the cornea knows that they're getting a good cornea. And by the way, you work with Patricia Dahl, who I want to mention is not here today. Patricia's been the Executive Director and CEO of the I Bank for Sight restoration in New York City since the year 2023. Years went by quick and she's done an incredible outstanding job making this the the leading I bank in the world, I believe and she deserves a lot of credit.

14:51 I also want to thank Noel Mick for helping me set up this panel today. She's done a lot of work to get everybody together. So a shout out to Pat and Noel for really helping us with this, but tell us what's done in the eye bank when the eye bank receives a donation? How do we figure out that this corn is indeed good for transplantation? Yeah. So there's a whole lot that goes into it. We take you know, patient history at the time of procurement to make sure that this is a healthy tissue. And then once it is procured, there's a battery of laboratory tests that are taken and the tissue is analyzed for how healthy the tissue is in it's in and of itself.

15:32 So the cell counts of each layer, the clear zone, all those different parameters and we also it's it's an that is also a process that evolves depending on what diseases are prevalent, what can be transferred from a donor to a live patient. So we make sure that the tissue is clean in that sense free of disease that can be transmitted from one to the other and that it's a healthy tissue. And that's not something that we come up with by ourselves. You know, as a medical Advisory Board, there is an entire Eye Bank Association of America that collectively collects this data.

16:07 And over time we actually change what those requirements are. I'll give you an example like during COVID, we actually had to ask, you know, when the pandemic occurred and COVID was a deadly disease, it, it was something that we needed to make sure was not going to be transmitted. And then you know now that we have reached a different point with that, it's it's actually the the parameters change or the protocols change. So it's a pretty intense process. Right. And there are many technicians working in the eye bank doing all these tests on the cornea and careful analysis to make sure that it's a perfect cornea for transplantation.

16:45 Exactly. And one of the concerns my patients have that I'm asked frequently is how do I know this cornea doesn't have some contagious disease or virus. Tell us what the eye bank does to make sure that we don't transmit any diseases from a donor to the recipient. So we do, we do serologies on the patient, right, to make sure that blood tests exactly blood tests obviously history. So if there's something that's there that is transmittable, it's not even going to be offered as a donor tissue. If we don't know, we will process the tissue, but we will await the serologies or the blood tests to come back to make that final decision.

17:24 I'm not sure. Do you need more details than that? No, I think that that really establishes that we do an incredible amount of testing to make sure this cornea is safe. It's extremely rare these days to transmit any kind of disease from a corneal transplant because all all this careful testing. And the other thing that's actually really important is that the tissue is followed like even after it's transplanted, we do a culture on the residual tissue. We call it the tissue rim that gets sent for culture just in case nothing was detected before.

18:00 And we follow our patients and then we are actually required to send in six month follow-ups on all of our patients if anything happens. And later on that could have possibly been related to the tissue, whether it's an infection that develops or something that happens, a failure or graft failure, we call it if the tissue gets rejected. So any adverse event is actually reported. So we can go back and see if there's anything that needs to be changed in these parameters or the testing protocols. Right.

18:30 And we also have relatively frequent meetings with the medical Advisory Board where all the eye surgeons come together and talk about their experiences and does anybody, has anybody had any unusual experiences and there's tremendous amount of feedback loop that occurs so that we make the process better and better exactly. So I want to speak to you, John, as you're a corneal transplant recipient. And can you tell us when you first noticed the problem with your vision? Well. Sure, I go, it goes way back I was, I was a young man in New York City.

19:08 I'm, I've just had my 72nd birthday. So we're talking about 42 years ago. I was 30 years old and I had, I had been nearsighted since I was a a young kid and wore, wore glasses and I was starting my career in New York City. I was a sports writer for a big magazine called Sports Illustrated. Way before they started employing artificial intelligence to write their stories. They had human beings actually writing them. I was one of them and I I I like many people At that time. I wanted to try wearing contact lenses.

19:44 So I went to my ophthalmologist and had a a contact lens specialist recommended to me and I went to see that person and when he took the measurements for contact lenses and these again, this was the time when before soft lenses they were hard rigid plastic lenses. And he did the measurements on my eye and said for the first time. I had never heard this before that you you seem to have a little bit of kerataconis. I didn't know what that was. It was explained to me that this is when the surface of the cornea, the curvature, is no longer perfect, no longer spherical, like a beautiful.

20:27 Beach ball or soccer ball, but starts to look more like a football. It's not a perfect sphere, so that the fitting of a contact lens, which was generally perfectly spherical, became a a problem. But nonetheless they fitted me with hard lenses. I I took the time to get accustomed to them and wore them for two or three years without too much difficulty. But after about two or three years I started to get a lot of irritation and I would have to take the lenses out and wash them and clean them and use drops.

21:03 And it became more and more of a nuisance to me and started to interfere with my job, which involved a lot of traveling and renting automobiles and driving in the mountains. And you know, one day I was driving in in the mountains in California, and my eye, one of my eyes was bothering me so badly that I really couldn't continue driving and I couldn't pull off the road. It was a real bad situation. And I resolved then to figure out what what needed to be done. And the answer ultimately became, you need to have a corneal transplant and all that you just explained.

21:44 Dr. Saget was explained to me. I went ahead and had the first eye done. A year later, the second eye done. And you know, at that time the recovery period was pretty long. It was, it was, it was almost, perhaps a year for each eye. While the transplant was healing enough so that I could

22:09 ultimately be fitted with new lenses. I still couldn't use spectacles, but by this time I guess they had some gas permeable lenses that I could use. And so I used gas permeable lenses in both eyes and I did fine for some years and over, you know, over the course of maybe 20 or 25 years. I I also then had radial keratotomy, some reshaping of the corneas that had already been transplanted done so that so that I would be more easily tolerate the glasses and ultimately what the lenses. But what I really wanted was to be able to jettison the lenses and go back to wearing spectacles.

22:57 And ultimately I was able to come get back my glasses. But then the results of that of those transplants in 1981 and 82 were so great that 35 years later I came back to do it all again because as I found out like when you get a new set of tires on your car and you drive 50,000 or 30,000 miles, you wear down the treads. So I think it was kind of the situation where those corneas, as successful as they were, got a little worn down and a little scarred and were then again affecting my vision. So I went back and had a a second, I think it was a full thickness transplant in my first eye and this was all in about 2015 or 16 full thickness transplant in my right eye and it went fine.

23:51 The left eye. A short time later and we had, I think we did an epithelial partial transplant, and it took a few adjustments to get that right. But I'm sitting here now. My vision most recently was corrected with my glasses to 2020 on a good day, 20-30 on a bad day. I can do everything I want to do. I'm not hindered in the slightest, and I'm a tremendous beneficiary of all the brilliance and all the genius of the of the technology and of the organizations of the eye bank and all the procedures that have made this possible.

24:35 I'm living proof of how effective it is and I I give my thanks to everybody who's ever involved in all of that work that I have almost perfect vision today. Wow, that's that's an incredible story. And during the times when you were having this vision problems, was that interfering with your career and lifestyle? And activities, I mean, you know, I mean one of the one of the motivations to to find out if I needed a new transplant was not so much my work but but it was my play. So I like to play golf and I was finding that I would hit the ball and not be able to see it very well so.

25:12 You're hitting it too far. Well, yeah, I mean, the worst part was to hit a. Perfect shot right down the. Middle And the people you're playing with go, oh, what a beautiful shot. And you're going, I wish. You know, it's bad enough when you hit it in the trees, you don't know where it is, but when you miss the beautiful shot, that's kind of, that's kind of depressing. So that sort of hastened the idea to see if I could clear out these corneas and and start all over again. And then once that happened, I I ended up giving up golf and now I'm AI like to say I'm a born again jazz saxophone player and I use my eyes a lot, but more than that I use my brain and my ears, so they all work pretty well.

25:47 I actually brought a sax. Well, just kidding. I don't wanna put you on the spot. Another time. But one thing that you mentioned that's interesting about having to have a repeat corneal transplant, when we do corneal transplants, it puts a lot of stress on the cornea. So it's not like the cornea you were born with and they can last ten, 20-30 years. I have patients who still have the the same cornea, but sometimes after 20 or 30 years, the cells in the transplanted cornea kind of give out. They age prematurely.

26:19 But the good news is with corneal transplants is we can repeat the surgery with a very, very high success rate again. So I've had patients where I've had to do repeat transplants 20 or 30 years later. In fact, I saw a patient this morning where I did his original corneal transplants when he was 15 years old, a teenager. He had an unusual disorder of the corneas and I had to repeat one of his transplants last year, 30 years later. So his cornea also lasted about 30 years. But again, that can be repeated and that's actually easier and safer to do than repeating like a heart transplant or other organ transplant.

27:02 So the cornea is an amazing organ and you're you're great. I'm a lucky guy. Yeah, you're you're a very lucky guy. So, Maria, I want to speak to you a little bit. You're the communications manager for the I Bank for Sight Restoration in New York City. Can you tell us what you do in your in your role? Sure. I've been the communications manager for for a little while now. I've been there at the I Bank for six years and I've held sort of several different positions at the I Bank. One of them was to be a hospital and community liaison.

27:38 So we do a lot of work at the I Bank to educate the hospital staff who support the donation process and we do a lot of public education to raise awareness about the donor registry, the importance of signing up to be a donor, the benefits of corneal transplantation. So my role as the communications manager is kind of twofold. I supervise those hospital and community liaison to educate our hospital staff and who work with the community to raise awareness. And then I also work with our communications team to raise awareness just more generally among New Yorkers about the the donor registry and the benefits of of eye donation.

28:13 Right. So if someone wants to donate their corneas when they pass away or die, or let's say if somebody dies and passes away and the family wants to donate their corneas or their eyes or other organs, how do they go about that in in New York specifically? It's similar in other states, but tell us the process here. Sure. Well, the the best thing that someone can do if they want to be an eye donor is sign up on the New York State Donate Life Registry to be an eye organ and tissue donor is. There a website for that.

28:43 Absolutely, you can do it at the DMV, but you can sign up on our website at the Eye Bank I donation.org. So you can go right online and sign up. So that indicates your wishes to be a donor and that is a legal consent to be a donor. So that's the best way to indicate that that's what your wish is. And that goes on your driver's license, right? If you do it at the DMV, it does, but the donor registry is actually a database. So if you have indicated your wishes at the DMV, that heart will be on your license.

29:11 But if you've indicated your wishes elsewhere, the heart might not be on your license. So the license itself is not the registry. I see. So that's the best thing to do is to sign up and then to share with your family that you do wish to be a donor. It's important that you let people know what your wishes are so that they're aware, right? If you pass away in a hospital setting, we receive a notification at the I Bank where we can look up on the donor registry to see if that person who has passed away what had indicated those wishes.

29:38 So you mentioned your liaison would hospital, so hospitals actually contact you when when somebody passes away and they let you know and then you investigate that and and see if they're a donor. That's right. So we receive a notification from the hospital every time an individual passes away within our service area. And the first thing we do is we check that donor registry to see if that person indicated through the registry that they wish to be a donor. We also evaluate them for medical suitability.

30:05 We look into the medical chart and see whether or not that patients have candidate for donation and if they are a candidate for donation, we'll reach out to the family. So we reach out to the family to let them know that their loved ones on the registry and they're medically suitable. Or we reach out to the family to let them know that their loved one is medically suitable and they're not on the registry. But then it's up to the family to make that decision on their loved one's behalf. And there's a legal order of priority in New York for who can make a donation on their loved one's behalf.

30:34 So when we reach out to families, we have two different kinds of conversations. One is to let the family know that this was their loved one's wish and they have provided a legal consent for donation and we support the family through that process. The other conversation is to let them know their loved one is medically suitable to donate. And now they have that decision to make as a family about whether they think that's what their loved one would have wanted. And we have trained family support coordinators who work with the family through that process on the day the donation takes place.

31:02 How is the? This gets a little technical, but how is the eye obtained from somebody who passes away in the hospital? Who removes the eye and how does it get to you? So we call them recoveries. Every eye donor recovery happens either in a hospital morgue, in an operating room or in a Funeral Home. And it depends on the nature of the donation and the family's wishes where that donation takes place. The donation is always handled by an A trained eye bank recovery technician, so it's our own staff member who then travels to the location where the donor is to perform that recovery in a sterile setting and with respect for the donor.

31:44 Right when I was an ophthalmology resident training, one of my things that we did was actually to do the recovery of eyes of people who donated their eyes and then we would have that delivered to the eye bank. Right. So, yeah, So our technicians then recover that tissue. They bring it back to our ocular laboratory on Wall Street where it's then evaluated, you know, under a microscope, the kinds of things Doctor Goyal was talking about to determine in our laboratory whether or not that tissue is suitable for transplantation.

32:14 And then we'll also prepare it for the different kinds of surgeries. So we were talking about, you know, different layers of the cornea can be transplanted. So we will prepare that tissue for our surgeons, maybe a full thickness cornea, but it might also be prepared in a thinner layer for whatever the transplant surgery is that's been scheduled. Right. One of the things you mentioned about donation that we don't have to do any tissue typing of any type because the cornea is a special type of tissue.

32:40 We don't have to worry about rejection usually. What about comparing ages? In other words, if somebody's 20 years old and they need a corneal transplant, what's the highest age of a donor that you would want to transplant into a 20 year old? That's it. It's interesting. I don't know that I have a cut off because I'm generally paying attention to the health of the tissue, right? I think on the on the flip side, a a young cornea is not fully developed and so that can be technically difficult to transplant, but as long as the tissue is healthy, it doesn't really matter the age of the donor.

33:17 Right. So the the message is we now can look at the cells of the cornea and see if the cornea is healthy. If the cornea is healthy and has healthy looking cells under a microscope, we can transplant into almost any age group. In the old days, when I first started doing transplants, we didn't have these technologically advanced tests to do. So we would sort of have a rule that we didn't want to go more than 10 years above the age of the recipient. So if somebody was 30, we would use the cornea up to 40 years of age.

33:48 Because if you have a 20 year old and you transplant a 70 year old cornea into them, by the time that person is 50, the donor cornea is about 100. So, but now with with modern technology, age doesn't matter as much. Yeah, and also sex doesn't matter. We can transplant a female cornea into a male and and vice versa, and it doesn't seem to make any difference. Exactly. I mean, with this technology we actually can do cell counts on healthy live tissue. So we can see how little cells we actually need to have a healthy like cornea for our lifetime, our lifespan.

34:25 So yeah, I mean the technology has helped us in many ways. Amazing. Yeah, definitely expanded our range and and has made more use of the tissues, more efficiency, less wastage. Right. So I want to get to you, Eduardo, Tell us about your story, how you first realize you're having vision problems and and what led to your corneal transplants. Well, thank you for having us today. So I think it happened. I want to say I was in history class, so I was 15 years old. This was 2010. I remember sitting in the classroom and I couldn't see the board very well.

35:02 And it happened after I'd sneezed and I kind of rubbed my right eye, and I realized that I couldn't really see all that well. So I'm like, OK, well, surely something's probably in my eye. So I got some tissues. And I noticed that I couldn't see as well from my left eye. So I ignored it. Like every young teen, I thought it would go away, right? Lo and behold, a couple of months later, I couldn't see very well again. So I'm like, I wonder what's going on. So at one point I started to second guess what was really going on.

35:33 I thought someone was moving my desk at the end of the day and I was getting further from the board. Sure enough, I eventually told my parents when and we got glasses. I think my general ophthalmologist at the time, we got glasses, but I don't think really they got to what was actually going on. And six months later I kind of mentioned like, hey, I'm not really seeing as one. He's like, well, you just got your glasses. It's pretty odd that six months later, you know, the prescription would change at your age.

36:05 So, you know, I, you know, we got a new prescription, new glasses. Six months later, surely this is gonna work, you know? And about six months later, again, I wasn't seeing all that well again. So at this point, we decided to, you know, see a specialist. And I decided to see a couple people. But I finally saw someone who I thought could help me, and that was Doctor Zaidman at Westchester Medical. So he diagnosed me with keratoconus, and I had keratoconus in both my eyes. But peculiarly speaking, my right eye was not as bad as my left eye.

36:38 One eye was particularly bad, and it when we first went into the room, he told me He's like just giving you an estimate of your eyesight. And I'm like an estimate of my eyesight. So he said, you don't see a lot with your left eye. Your right eye is OK, but your left eye, you're not seeing a whole lot. And it's getting worse. It's like he asked me, hey, in a couple of years you might need a coronary transplant. So I'm about 15. I'm trying to translate this to my mother who doesn't speak a lot of English and she's trying to wrap her head around that I possibly am gonna go blind.

37:14 So she's she's there's a lot to take in. The next day I was at a dodgeball competition and school was just getting just ramping up for me, so he told me about the options. I got some hard contact lenses. They took some time to get used to, but they helped a little bit and as the next couple of years progress I started seeing less and less and it was particularly challenging cuz no one knew about it. I decided to keep it to myself so no one in school really knew about it. But I started to learn I wasn't good at certain things.

37:50 It's kind of hard to play certain sports if you can't see all that well. I learned. So I was not the first one to get picked for baseball because I couldn't really see the ball. So I ran track and field cuz it's a lot easier to run in a circle when you can't see very well than it is to catch a ball. And I eventually got to like my senior year, and eventually I wasn't seeing all that well and it was towards the end of my senior year. And I remember that I'll never forget this day. So I walked into the lab and I'm sitting there and my ophthalmologist, he sat me down.

38:25 And whenever I talk about this, I'm like, no one ever remembers all the letters that your ophthalmologist will show you, but you remember one. You always remember the Big E biggie is the only one. Everybody remembers. The first one there. I remember I'd sat down and I went to see and I can no longer see the biggie anymore. And I think that's when it really hit me that I wasn't able to see it as much. And I remember, like, hearing my mom, like, hysterically crying because, you know, my doctor's telling me like, hey, like, Ed is now legally blind out of his left eye.

38:59 His right eye is not bad, but it's not great. And he's now legally blind. So, you know, we're gonna have to talk about, like, you know, a couple options about we know what's gonna happen. So I was, you know, I didn't know it at the time, but there was a lot of wonderful people working behind the scenes to help my situation. And I would later meet them, and some of them are in this room. So there's a lot of great people working at the I Bank to work behind the scenes with the hospital, with my surgeon to help procure the cornea that would then help, you know, me restore my sight.

39:34 So I did my first year, first semester in college, we kind of prepared for my surgery. And then it basically happened two weeks after my my first year at RPI. I went to Rensselaer and I remember, you know, it was a, it was a pretty monumental feeling because we're talking about the surgery. We're talking about what could happen. My parents are there and, you know, we had a great team doctor. Zimon did a fabulous job. I remember we got the surgery done and I remember waking up the next day and it was a little painful to say the least.

40:09 The recovery definitely took a couple. I was definitely at the hospital, I think like a couple of days. And then I remember for that summer, the rest of my summer, was, you know, a lot of frequent visions with Doctor Zaidman. But you know eventually about 6 to 8 months later recovery is going well. He actually performed LASIK on me afterwards. And it it the best way I could tell anybody is when you get out of the shower and it's like fog and you can't see anything and and you wipe away the layers and you can finally see that's what it felt like.

40:42 It felt like I could see again and then you just wiped away everything and you know he was telling me about all the things and it was almost like re teaching myself how to see cuz I had new depth perception I want to say and I would constantly miss things, little things, but I would actually miss things because for so long I think my body found ways to accommodate for my lack of depth perception when I was in high school that it was almost like site therapy. That's an incredible story. So the fog just kind of lifted and you're able to see better, correct?

41:17 Yeah. The depth perception is interesting because you need two eyes to get depth perception to allow you to judge distances. And when the vision in one eye is severely reduced, you lose that. So sometimes you're pouring tea and into a cup or coffee and you miss the cup. It's more difficult to park your car and and things like that. So that that's an amazing story. Yeah, I understand you're also a saxophone player, yeah? I was a sax. I was a saxophone player in high school. I played jazz coincidentally, and I thought Charlie Parker was great.

41:53 His music is fantastic. Yeah, I played the saxophone in high school, but talking about things that I could do pre and post operation. So it wasn't until after the operation I realized how abnormal not seeing was and I realized that all the challenges I had to go through weren't something that most people actually went through, and I remember vaguely. So I did pretty well in school, at least well enough to go to university and not make my parents worry too much. But I remember not being able to seal that well.

42:29 So what I would do is at home I would read the textbook pretty close to my face as and I would read it twice. So I developed pretty good memory. But I did that. So if I was called on in class, I didn't see the board and have to. I didn't have to read it but that also. I also got pretty bad migraines from reading that, but I realized that wasn't something that was normal. And then I realized that not being good at sports required hand eye coordination. I realized that wasn't normal either, and progressively I learned a lot of other things.

43:03 But there were things that I'd love to do that I felt like towards the end of me, seeing I couldn't do as well as driving was one of them. I always loved driving and to this day what I do is a couple of friends and I, we will fly to a different place, we'll rent a car and then we'll have a road trip there. And we do this every year, and I strongly feel like I wouldn't be able to do that if I wasn't able to see. Right now, you're also on the leadership council of the I Bank for Site Restoration in New York City.

43:34 Can you tell us about that, what you do with. Yeah. Of course. So I think I was introduced to the I bank a few years after the operation. Somebody reached out and it was actually. Maria. It was me. Yeah, she. Reached out to me asking if I would share my story, and at that point I said yeah, of course. So, you know, we got together. It was during the pandemic we got together over Zoom. Yeah, yeah. Right. That's. I just want to interrupt. The eye bank was running during the pandemic, still providing corneas for people who needed them.

44:05 Thanks again to Pat Doll, who worked through the pandemic and made sure the eye bank was continuing to run even those through those times. Yeah. So tell us about that. Yeah, we, we got introduced, we did a video. You know, I met the team over Zoom. I wouldn't meet them until a little bit later. But you know, we met. We talked a little bit about what, you know, what happened, and I shared my story and eventually I started going to more events at the I bank. I wanted to be involved. I think I felt like I almost had an obligation to tell people my story and just to relate to one another a little bit better.

44:41 Because every time I share my story, there's almost always somebody in the room that will say I know so and so that either had a transplant of some sort of cornea, if not something else. So it touches a lot of lives. So I felt like it was almost like my obligation because the gift of sight is something I will never take for granted. So in sharing the story, I actually realized that a lot of my family actually has keratoconus, and I had two other relatives that also had a cornea transplant. But I actually realized that there's probably at least half a dozen individuals in my family who are currently working towards finding how it's severe.

45:25 It is in their circumstances to see if a coordinate transplant is viable. But I actually developed a closer relationship with some of my family members because a lot of us didn't. I guess a lot of us were going through it, but a lot of us never talked about it to one another. Right, so both of you mentioned keratoconus. If people want to look that up, it's spelled KERA T0C 0NU S This is a condition of the cornea where instead of it being smooth and round, it becomes football shaped as you mentioned John, and then the light doesn't get focused.

45:57 In my practice where I see a lot of keratoconus patients, I would say about 10 or 20% of them have a family history of a sibling or a parent or cousin or somebody, but about 80% have no history at all. What what about you, Hermani? What do you find with your keratoconus patients? I mean, I think it's like so amazing to hear you go through this process and tell us about it because this is the thing about keratoconus or or children who go through things that are not abnormal. Children don't know and like to them if it's something that they've been going through, like they have no comparison of what things used to be.

46:34 Like for you. You were 30 years old and like you had great vision and then you realized, right. But for Eduardo, he was so young that he didn't even realize until after the fact. And so with Karatoconus is why it's so important with with any disease but eye disease, it's to get it checked, to get screened. That's why we do vision checks in schools, make sure because the children won't know and we pick it up. And then and a lot of times the parents are very surprised too, because they're like, oh, but my child never complained about anything.

47:03 How could this be? And so it's it's very important to raise that awareness. I'm really glad that you're sharing that part of your story because also with Keratoconus, we have come to a point where if we catch it early enough, we can maybe avoid coronal transplantation all together, right? And so that is a huge part of the goals is prevention. And yes, it does run in families. So being able to screen for it and once you find out, you always say get your brother in here, get your sister, you know, if it's an adult like your children, like growing up.

47:40 Just to be able to have that on our radar so that you know if we get get them early enough, we can cross link. We can strengthen the cornea before it even reaches a point where it's it's gotten thin enough to to lose its strength and then become so distorted that we need to replace that. Yeah, great point. I think keratoconus is one of the most common conditions that lead to corneal transplantation. And there is a procedure called collagen crosslinking, which kind of strengthens the cornea. And if you pick it up early, you can prevent the cornea from deteriorating.

48:08 That's that's something new which which wasn't available in your days. We think it's a genetic condition because of this familial thing. But again, many of my patients, most of them actually have no family members. So it's not really clear how you get curtical. And it can be, you know, it can be a different levels, like there might be a subclinical, we call it subclinical, meaning there may be someone that has glasses or like a strong prescription, but their vision is good with that and it doesn't technically get to a point where they need to have a transplant.

48:40 Yeah. And you know, even worldwide like the access to being able to get this into the villages where we have little kids who don't necessarily get screened, There's actually so much that's going on to be able to screen for these things. There's a new app, like there's multiple apps on on on our phone that we could actually take, you know, pictures of children all over the world to get them screened and get them. Yeah, I was thinking the two of you maybe should get together corneal transplant transplanter and.

49:11 Jazz Orchestra. Right, corneal that Will. The talent group we need to play. Cornet We need to get a cornet player involved in. I can sing. OK, well, you know, we get a cornet. I can dance. There you go. There we got the. Whole, I think Ed alluded to this, but you know, one of the things we do in the communications department at the ibank is we reach out to people like Ed, you know, to people like John who have received transplants. And we, we, you know, talk to them about their story. Sometimes we record videos of them sharing their stories.

49:38 We write articles about them and try to raise awareness about the benefits of cornea transplantation. So that, you know, maybe a parent whose child is experiencing something like you described might see that video and then go see an ophthalmologist. Or just so that someone who's signing up on the donor registry would understand that they're becoming an eye organ and tissue donor and what the benefits of I donation might be if they do end up hearing from the I bank to understand, you know, that they're impacting the lives of people that they've actually seen before.

50:04 So that's a big part of the work that we do to just raise awareness about the importance of of donor registration in general. What if someone would like to donate funds as opposed to? I mean, I I don't even know whether my eyes, with the history that that I have, would be suitable for donation. I am. I'm. I'm ignorant of my own circumstance, I don't. I would doubt that my eyes would be a very much use except for possibly research. But suppose someone wanted to donate some. Money. So the Ibank for Site Restoration is a nonprofit organization.

50:39 We do accept charitable contributions, absolutely. And those help to underwrite some of that communications work that I was talking about. We do a lot of work with Donate Life New York State to educate DMV staff members of the public and just to do a wide variety of both clinical and public education efforts. So we we absolutely accept charitable contributions through our website idonation.org. We're also in social media at I Bank New York. It was just Giving Tuesday. So we have some different campaigns that you can check out there.

51:10 And then the stories that I've been talking about are shared through our social media platforms as well. Right. So if you want to donate funds, you go to idonation.org, which is EYEDONAT ion.org, and you can donate funds and find out more information about donating your eyes and corneas. That's a good question you had, John, about whether your eyes can be used. We wouldn't be able to use your corneas because they've gone through surgery and so they're kind of stressed, so we wouldn't use them as donor tissue, but we could use other parts of the eye for research.

51:47 Can you tell us about that, Maria? Absolutely. So we work with a wide variety of researchers who are looking into treatments and cures of different kinds of blinding eye diseases. One particular project that we're excited about is culturing retinal pigment epithelium cells. These are the cells that kind of support the rods and cones of the eye and that research might one day lead to treatments and cures of age-related macular degeneration. So even if tissue can't be transplanted, we can hopefully place that tissue with a researcher who can contribute to maybe many, many more people being able to see in the future.

52:20 Right. Those cells, the retinal pigment epithelial cells, are all the way in the back of the eye in the retina. It's a different part of the eye and we're working on creating stem cells from those that can then be injected into the eyes of patients who have various retina problems, especially macular degeneration, possibly retinitis pigmentosa, which is another retinal disease. So even if your eyes are not suitable for donation to another person who needs a cornea, other parts of the eye can be used.

52:51 So don't hesitate to donate. Right. We want to honor everyone's gift. So if we recover tissue and we find that it can't be transplanted, then we'll seek to place it with a researcher to honor that person's wish to restore sight, at least at some point in the future. And in addition to the funds going to research and to also providing the tissue that we actually use for our surgeries that I think is also involved in teaching. So because all of the cornea specialists of New York, actually we are together, we take turns being on the medical Advisory Board.

53:27 We keep in touch with each other, we train each other as well. So when it comes to a new developed technique like for example the endothelial caratoplasty, that partial transplant of the cornea, when it came out, it was Doctor Florakis who was the chair of the Medical Advisory Board at the time, who held the first wet lab that we had. And that's how I learned how to do that surgery. And so now we actually annually have a fellow's wet lab. So we train other doctors as well, and then we also provide scholarships for research for our fellows so they can apply for that.

54:04 So a whole lot happens. And we've been bringing technology residents into our labs to just familiarize them with our procedures early on in their careers, so. So it's a huge educational component. Absolutely. We also educate all the clinical staff and administrative staff in the over 60 hospitals in our service area who you know work with us to facilitate the eye donation process. Right. One of the concerns that some of my patients have had who were interested in donating, they were concerned about disfiguring the the body if if eyes are removed.

54:41 Could you tell us a little bit about that? This is a common concern that maybe we won't be able to have an open casket, you know, funeral service for our loved one if they're an eye donor, open casket funeral should absolutely be possible. If someone has been an eye organ and tissue donor, it's very important to all the accredited recovery agencies involved that the choice to donate doesn't impact. At least that choice specifically doesn't impact the ability for the family to celebrate their loved one's life with an open casket.

55:10 So it should, you know, just look like that individual has their eyes closed, that they're at rest, just like we're used to seeing in an open casket service. The choice to donate is also confidential, so no one should be aware that it has occurred. You know, if you're there with the family of the loved one at their funeral, you would only know that they've been a donor if the family chose to tell you, right? So nobody would know. It also doesn't impact the timing of a funeral I donation. It's very time sensitive.

55:37 We recover, you know quite quickly and so we don't delay Funeral arrangements and that's actually something we we survey donor families to make sure they've had a meaningful experience with donation and that it didn't delay their Funeral arrangements. All right. That's very important. Patients ask about that. What about religions? Are there issues with that? Are there certain religions that don't allow donation of organs or recipients who can't get organs? All leaders in all major religions support eye, organ and tissue donation.

56:09 And what we say, because we're not faith leaders ourselves, is that, you know, individuals should reach out to their own faith leaders because certain groups of people within a faith might have different beliefs about donation. But in general, leaders among all major religions do support donation. Well, that's good to know, right. Yeah. We touched earlier a little bit about the Eye Bank Association of America and how that organization is very important in connecting the roughly 100 eye banks around the country.

56:40 Because I know occasionally I needed a cornea, There was none available in the New York metropolitan area and I wind up getting a cornea from Texas that gets shipped and several of the airlines actually donate their services to ship corneas across the country. Can you tell us about more about the Eye Bank association, how that works with the different ibanks and what the benefits and advantages of that organization are? Sure. So the ibank Association of America is sort of the governing body over all of the accredited nonprofit ibanks in the country.

57:12 And it's a place where we can share ideas with each other and things like that. But it's also kind of a network of ibanks. So that in the event that we, you know, have a surgeon who needs a tissue here in New York and we for whatever reason don't have that tissue to provide to them. We can reach out to one of the member eye banks and they can provide tissue to us that we import to our state's. We do domestic imports and exports to each other. And that way we can then provide, if we have a surplus of tissue, we can reach out to our friends at other eye banks and provide them the tissue that we have because as you mentioned, we can put it in that preservation media for about a week or so.

57:48 But we want to, you know, honor everyone's gift and make sure that transplantable cornea tissue goes to a recipient. So we can offer it out to other states or we can request from other states tissue if we're in need of it, so we can import and export to each other in that way. And the I Bank Association of America helps us to kind of trust each other and understand that we all have the same values. We're all regulated by the FDA. So we have the same standards and that way we can work together in a collaborative way.

58:16 And we all agree upon, you know the any innovations that we're all accepting any anything like the COVID pandemic where we're going to kind of change our standards for a period of time to be more careful. We're doing that all together. That's an important point. Also I'm glad you mentioned about the FDA everything, all the policies in the New York high bank, the other eye banks is regulated very carefully by the government and the FDA so that everything is extremely safe and done according to proper protocol.

58:48 The other thing. Problems I'd like to mention about something being regulated as the donor registry itself is also highly regulated and highly secure. We get a lot of questions about who can access the donor registry. If you've made that decision. Can the hospital check in an EMT check? Are we looking in my license to see if there's a heart there? Does this impact my medical care? Or a lot of the kinds of questions we get about the nature of the donor registry? But it is a highly regulated database.

59:14 We can only check if someone's on the registry. If we have received a referral from the hospital that that person has passed away, then we can look up their name and we as an accredited recovery agency have access to that registry. But the hospitals do not. Other organizations do not. If you call the I bank and say, hey, I signed up at the DMV, can you just make sure I'm on the registry? We are not allowed to look up your name. We can walk you through that process online, but you have to do it yourself.

59:42 We can only look you up if we've received a legal referral from the hospital. So it's a highly secure and confidential registry. That's great to know. So privacy is very. Exactly. It's a part of your Protected health information. All right, that's pretty awesome. John Eduardo, any other comments you want to make? No, I would just like to say I'm so grateful for all the work that the folks, the organizations that you all represent have done. And you know I. That's all fantastic and I want everybody to know how great this work is and I'll do everything I possibly can to help promote it to everyone I can.

1:00:32 Thank you. Yeah, we appreciate coming. How about you, Eduardo? Echoing the same sentiments again, like growing up, going through a lot, it was really challenging. But knowing that there is a whole group of people in my corner rooting for me, making it as seamless as possible so I can see it again is something I will never take for granted. So if we can keep letting people be aware of the privilege it is to be a, you know, to donate, you know we will keep doing that. Well, that's great. Wanna thank everybody for coming today.

1:01:03 This has been very educational for me as well as everybody else here. And I'm sure the audience will like this program as well, learn a lot from it, enjoy it and benefit other patients out there who may need corneal transplant in the future. Thank you for watching.