Eyes on Second Chances: Why One Transplant Center Said No, and Another Said Yes | EP 43: täielik transkriptsioon

--> 00:02:35.280 Well, I'm excited to be here. 00:02:35.360 --> 00:02:43.759 And I am excited to tell my story because I think there are many people out there that might need the advice to follow to help them through the transplant journey that I just went through. 00:02:44.000 --> 00:02:45.439 I totally agree. 00:02:45.680 --> 00:02:52.960 So we're going to talk a little bit about your professional career today, but let's start first with the beginning of your story. 00:02:53.120 --> 00:02:57.919 And tell us a little bit about when you first learned that you would need a kidney transplant. 00:02:58.479 --> 00:03:00.960 Well, I say kidney disease took me by surprise. 00:03:01.039 --> 00:03:02.000 I had no idea. 00:03:02.080 --> 00:03:04.319 I was in my early 30s and healthy. 00:03:04.479 --> 00:03:09.120 So I thought, you know, I was pregnant with my first child and I had preclampsia. 00:03:09.280 --> 00:03:10.319 Okay, that's normal. 00:03:10.560 --> 00:03:16.319 And then again, my second pregnancy was preclampsia again, maybe not as normal, but it everything was fine. 00:03:16.560 --> 00:03:24.639 It wasn't until my third child that the doctors figured out that was causing my preclampsia and other issues was kidney disease. 00:03:24.879 --> 00:03:30.879 Um, we actually together figured out that in college I had strep throat and it settled into my kidneys. 00:03:31.039 --> 00:03:38.560 And so while being pregnant and being great and that high protein intake stressed my body enough that I was having kidney failure. 00:03:38.879 --> 00:03:43.840 So we needed an emergency delivery at 31 weeks with my third child. 00:03:44.080 --> 00:03:52.319 Um, and then after that, we started the process of our daughter being in NICU care and me figuring out next steps for kidney failure. 00:03:52.560 --> 00:03:54.400 But I have to say there is good news. 00:03:54.639 --> 00:03:59.520 Our baby, Emily Ann, is now 34 and she's having a baby of her own. 00:03:59.759 --> 00:04:01.280 Oh, congratulations. 00:04:01.520 --> 00:04:02.319 Thank you. 00:04:02.560 --> 00:04:04.000 So that had to be scary. 00:04:04.080 --> 00:04:08.240 So during your third pregnancy, you you had a a health crisis. 00:04:08.479 --> 00:04:08.960 Yes. 00:04:09.199 --> 00:04:09.599 Yes. 00:04:09.759 --> 00:04:14.879 I've been in the hospital for a very long time when they decided that they figured out it was kidney disease. 00:04:15.120 --> 00:04:19.120 And then um, at some point they just said, this is stressing the baby too much. 00:04:19.279 --> 00:04:22.160 We have to take the baby and you know, hope for the best. 00:04:22.319 --> 00:04:24.959 So it was a very, very trying time. 00:04:25.360 --> 00:04:29.199 What do you remember most about the first chapter of that journey? 00:04:30.240 --> 00:04:32.079 That it was the most trying time of my life. 00:04:32.240 --> 00:04:33.040 It really was. 00:04:33.199 --> 00:04:37.519 Um, splitting your time between the NICU and praying that your baby's going to live. 00:04:37.680 --> 00:04:42.560 And I had two toddlers at home and starting dialysis all at the same time. 00:04:42.639 --> 00:04:46.879 And all the emotions that go with that is just overwhelming. 00:04:47.600 --> 00:04:48.160 Wow. 00:04:49.040 --> 00:04:51.360 What an incredible thing to triumph through. 00:04:51.519 --> 00:04:55.040 I mean, that's I can't I can't imagine being on dialysis. 00:04:55.120 --> 00:05:02.160 And then when I think about being on dialysis with a baby and NICU and toddlers, and that just had to be terrifying for your husband as well. 00:05:02.399 --> 00:05:02.879 It was. 00:05:02.959 --> 00:05:04.240 It definitely was. 00:05:04.879 --> 00:05:08.399 And tell me a little bit about who ended up being your donor. 00:05:09.040 --> 00:05:20.079 So my mom ended up being a great match, and it was surreal because she's in an operating room at 57 years old, giving me a kidney, and I'm in the other room receiving. 00:05:20.319 --> 00:05:22.800 I mean, she gave me life a second time. 00:05:23.199 --> 00:05:37.759 My mom remembers that the doctor came into her room to see her after my surgery and said she peed on the table, which was good news because I was not producing urine prior to the transplant, which really meant that the transplant was successful. 00:05:38.000 --> 00:05:40.079 And my mom's a superhero. 00:05:40.240 --> 00:05:46.639 Now, on top of all of this, my father had passed away four months earlier, but she really wanted to do this. 00:05:46.800 --> 00:05:51.199 And um, even in her grief, she moved forward with uh giving me a kidney. 00:05:51.439 --> 00:05:51.680 Wow. 00:05:51.839 --> 00:05:56.000 So you had losing a father going on at the same time as all of us, too. 00:05:56.319 --> 00:05:57.360 Yeah, it was a lot. 00:05:58.319 --> 00:06:00.639 That was a hard point in life. 00:06:01.279 --> 00:06:02.639 So I've met your mother. 00:06:02.720 --> 00:06:06.480 I believe she was at the living donor, the donor rally that we had, right? 00:06:06.639 --> 00:06:06.959 And she was. 00:06:07.680 --> 00:06:08.879 She was always that event. 00:06:09.199 --> 00:06:11.600 And she was one of the oldest donors there, I believe. 00:06:11.759 --> 00:06:12.800 She was in her 90s. 00:06:13.040 --> 00:06:15.839 That was 2018, so she would have been in her 90s at that point. 00:06:15.920 --> 00:06:16.319 Is that right? 00:06:16.639 --> 00:06:20.079 She's 90 now, so she's 90 now, so she was in her 80s. 00:06:20.240 --> 00:06:20.480 Right. 00:06:20.720 --> 00:06:27.120 Can you just briefly tell us about your mom's health having donated a kidney and reaching the milestone of 90? 00:06:27.439 --> 00:06:30.240 Yeah, she's 90, and her kidney is still going strong. 00:06:30.399 --> 00:06:33.600 She might have other health issues going on, but I always check her care. 00:06:34.800 --> 00:06:39.360 Her kidney's going well, and I am so grateful for her continued kidney health. 00:06:39.439 --> 00:06:46.720 I mean, it's just it's

really her kidney must have been a workhorse because it worked that way for me for 33 years, and hers is continuing to go be strong. 00:06:47.120 --> 00:06:47.839 Go, mom. 00:06:48.639 --> 00:06:50.720 And how long did her kidney last? 00:06:51.759 --> 00:06:53.040 33 years. 00:06:54.560 --> 00:06:55.680 That's a long time. 00:06:55.920 --> 00:06:56.800 That's a long time. 00:06:57.040 --> 00:07:02.879 It it it allowed me to raise my children, um, continue my career. 00:07:03.120 --> 00:07:06.800 Um, it was just something amazing for me. 00:07:07.279 --> 00:07:13.120 So, fast forwarding to the end of last year, you had your second transplant. 00:07:13.360 --> 00:07:17.680 What led to that moment after 33 years with your mom's healthy kidney? 00:07:18.079 --> 00:07:21.360 Well, a few years ago, my labs started to be not as good. 00:07:21.519 --> 00:07:24.639 And then over two years, they just continued to decline. 00:07:25.120 --> 00:07:26.160 But no complaints. 00:07:26.240 --> 00:07:28.319 I mean, I had it for 33 years. 00:07:28.560 --> 00:07:38.480 And I have come to understand that I think it was great timing because better to have it fail in my 60s if it's not gonna last me my lifetime than when I'm later in life. 00:07:38.639 --> 00:07:40.480 So I kind of thought it was a blessing. 00:07:40.560 --> 00:07:41.360 It was gonna fail. 00:07:41.519 --> 00:07:47.120 I was it it was good that it failed now and not at a time where I couldn't get a transplant potentially. 00:07:47.439 --> 00:07:48.639 I love your positivity. 00:07:48.720 --> 00:07:52.000 I remember you telling me that when you told me that you needed a kidney. 00:07:52.079 --> 00:07:59.199 And yes, it would be wonderful to have a kidney that lasts that long, but if you're gonna need a second one, yeah, I got your train of thought there. 00:07:59.600 --> 00:08:01.759 So tell us about your second donor. 00:08:02.319 --> 00:08:11.680 My husband, Dave, um, went to be a donor, but he wasn't considered to be a donor for me at the hospital I was but registered at, but he was very healthy. 00:08:11.839 --> 00:08:16.560 And then we learned the criteria for each hospital for living donors is not the same. 00:08:16.879 --> 00:08:24.480 We found through different research and things, we found the National Kidney Registry and looked to see if any other hospitals would take him as a candidate. 00:08:24.639 --> 00:08:31.680 And there were a few, so we contacted one of them, Mayo Clinic in Jacksonville, Florida, and they agreed to test him as a donor. 00:08:31.920 --> 00:08:36.240 We flew down, he tested throughout the day, and he was approved as my donor. 00:08:36.399 --> 00:08:38.399 However, he was not a great match. 00:08:38.559 --> 00:08:47.679 So the next step we took was to work with both hospitals, and it was so great that both hospitals were willing to work with us on this and registered in the paired exchange program. 00:08:47.840 --> 00:08:55.360 So um, in this program, they attempted to find a person that matched me and a person that matched him. 00:08:55.679 --> 00:08:57.039 And we were so lucky. 00:08:57.120 --> 00:09:02.320 We they didn't know how long this was gonna take, but we waited only two months to find a match. 00:09:02.480 --> 00:09:10.240 I know others have waited longer, but it's I think for most people, it's a much less waiting time than waiting for a deceased donor. 00:09:10.559 --> 00:09:12.799 And I think it went well. 00:09:13.200 --> 00:09:16.000 So backing up a little bit, I have a question about Dave. 00:09:16.240 --> 00:09:28.879 So he was originally, I remember when I talked to you, you said your sister, your daughters, your friends, and your husband were all initially ruled out in Wisconsin, which is where you've been getting your care. 00:09:29.120 --> 00:09:37.840 So rather than saying, let's find another donor, your husband said, Well, let's let's look a little bit further into this and see who else might approve me. 00:09:38.000 --> 00:09:44.480 Can I can I ask what the condition was or what what was the medical reason that he was denied at your transplant center? 00:09:44.799 --> 00:09:45.279 Sure. 00:09:45.600 --> 00:09:51.039 He had kidney stones 40 years ago, and he was a runner at the time. 00:09:51.200 --> 00:09:57.759 You know, he's was young, and he would drink huge vanilla milkshakes after his run. 00:09:57.840 --> 00:10:02.399 So you're dehydrated and you're putting all this dairy into your system and it caused him to have kidney stones. 00:10:02.480 --> 00:10:06.480 But he hasn't, he changed his ways and he hasn't had kidney stones for that long. 00:10:06.720 --> 00:10:10.480 But a lot of centers disqualify if you've ever had any kidney stones. 00:10:10.720 --> 00:10:12.240 Yeah, even one kidney stone. 00:10:12.480 --> 00:10:18.480 Okay, so he ultimately donated through Mayo and Tampa while you were transplanted at the University of Wisconsin. 00:10:18.720 --> 00:10:20.960 How did that come together? 00:10:21.519 --> 00:10:24.639 Well, so he was approved there and I was approved at Wisconsin. 00:10:24.720 --> 00:10:32.639 So on October 30th last year, in the morning, Dave's kidney was retrieved and flown immediately to some unknown recipient in need. 00:10:32.799 --> 00:10:38.399 And at the same time, an unknown donor gave a kidney and it was flown to me at University of Wisconsin. 00:10:38.559 --> 00:10:41.600 We prayed for good weather so these kidneys could make it around. 00:10:41.759 --> 00:10:45.600 But in the afternoon, both of us who needed transplants received them. 00:10:45.919 --> 00:10:47.200 I don't know who the other people are. 00:10:47.440 --> 00:10:51.360 We got word that the transplant that Dave gave the kidney for went well. 00:10:51.519 --> 00:10:52.720 And we're all so grateful. 00:10:52.799 --> 00:10:54.559 I mean, it was just an amazing process. 00:10:54.799 --> 00:10:59.759 It is, and it's so crazy to me that you guys were separated for that experience. 00:10:59.840

--> 00:11:06.639 Because if my spouse was having a transplant or donating, I'd want to be with him, but you guys had to be physically apart from one another. 00:11:06.799 --> 00:11:12.799 So what did your kids just kind of like divide and conquer and decide who's watching mom and who's watching dad or what? 00:11:13.039 --> 00:11:13.919 Yes, they did. 00:11:14.159 --> 00:11:15.840 So I have three daughters. 00:11:16.080 --> 00:11:18.480 One went to Wisconsin, one went to Tampa. 00:11:18.559 --> 00:11:31.200 And then the um third daughter filled in when we both got home together because we still needed care then, because you think that one spouse is gonna care, one friend or whatever is gonna care for the other, but we're both down, right? 00:11:31.360 --> 00:11:32.960 So she came and really helped us. 00:11:33.120 --> 00:11:38.159 Our biggest thing was when we looked at things, we're like, it's more than 10 pounds, neither of us can live, right? 00:11:39.840 --> 00:11:46.320 Yeah, so you recovered together after a short period of time of probably because you live in Illinois, right? 00:11:46.399 --> 00:11:54.639 So you were neither of you were in your home state after how many days or weeks were you guys brought back together to begin your joint recovery in Illinois? 00:11:54.960 --> 00:11:59.200 Surprisingly, you know, I remember from the last time, I think I was in the hospital almost three weeks. 00:11:59.360 --> 00:12:02.320 We met up at our house one week after transplant. 00:12:02.399 --> 00:12:03.279 So it was great. 00:12:03.600 --> 00:12:04.639 What was that like? 00:12:05.120 --> 00:12:07.120 It was good to be back together. 00:12:07.360 --> 00:12:10.559 And you know, because it was all over phone and stuff calling back and forth. 00:12:10.639 --> 00:12:17.519 It was just, you know, it was challenging for us to to heal together, but overall it was really it was really a great reunion. 00:12:17.759 --> 00:12:20.080 Did you binge some Netflix together? 00:12:20.480 --> 00:12:29.200 I I I actually both of us were got Kindles at this time, and so we were reading books like crazy, but then in the evenings we would were binge watching all kinds of things. 00:12:29.519 --> 00:12:29.840 Wow. 00:12:29.919 --> 00:12:32.399 And this was kind of over the holidays, right? 00:12:32.559 --> 00:12:32.879 Right. 00:12:33.039 --> 00:12:35.519 Yeah, so you had a really chill holiday. 00:12:35.840 --> 00:12:36.799 Yeah, very chill. 00:12:36.879 --> 00:12:45.360 We didn't we didn't get together with family over Thanksgiving or Christmas because we were still in the mode of we want to stay away from any other anybody else's germ. 00:12:45.440 --> 00:12:46.159 So yeah, yeah. 00:12:46.399 --> 00:12:47.440 We hunkered down. 00:12:47.679 --> 00:12:49.919 That was a germy end of 2025, too. 00:12:50.000 --> 00:12:52.080 That's probably a really good choice. 00:12:52.320 --> 00:12:54.559 So which daughter had the hardest job? 00:12:54.960 --> 00:13:03.039 I think actually who had the hardest job was the was Katie, who was at our house when we were together because we were both demanding. 00:13:05.120 --> 00:13:06.639 Well, thank you, Katie. 00:13:07.200 --> 00:13:07.840 Right. 00:13:08.639 --> 00:13:13.919 So switching gears a little bit, you work in the donation world professionally. 00:13:14.080 --> 00:13:20.559 What was it like navigating the transplant system as a patient versus a transplant professional? 00:13:21.360 --> 00:13:22.879 It was really interesting for me. 00:13:23.039 --> 00:13:26.080 I thought I knew everything, but I didn't. 00:13:26.320 --> 00:13:32.080 It was an education, and it was somewhat frustrating for me at times being in the industry. 00:13:32.240 --> 00:13:40.320 I kept thinking, what about those that are going through this and most likely sick and on dialysis without the resources that I could lean on? 00:13:40.480 --> 00:13:42.399 I think it'd be it was overwhelming for me. 00:13:42.559 --> 00:13:44.639 I can't imagine what it'd be like for others. 00:13:44.960 --> 00:13:53.039 Did anything surprise you about how complicated the system can feel, even for someone, like you said, somebody like yourself who does understand it? 00:13:53.440 --> 00:13:53.759 Yes. 00:13:54.000 --> 00:13:58.639 One thing that really surprised me was how to get on the list for a deceased or living donor. 00:13:58.799 --> 00:14:00.720 You have to be qualified, right? 00:14:00.879 --> 00:14:03.600 So you're getting given a list of tests to get done. 00:14:03.840 --> 00:14:07.039 You want to get through as soon as possible because you want to qualify. 00:14:07.120 --> 00:14:14.240 So that, you know, you know, maybe you're trying to stay off dialysis or do preemptive transplant, or you just don't want to be on dialysis too long. 00:14:14.480 --> 00:14:16.399 So you get all these tests you got to get done. 00:14:16.480 --> 00:14:19.600 You're calling around, trying to get them done as quickly as possible. 00:14:19.759 --> 00:14:22.960 And it took me four months to get all my testing done. 00:14:23.120 --> 00:14:28.159 And then you go in front of committee, and committee decides if they have enough and you're approved. 00:14:28.240 --> 00:14:29.279 And in my case, I didn't. 00:14:29.360 --> 00:14:30.559 They wanted more tests. 00:14:30.720 --> 00:14:32.879 So I went through more tests and came back. 00:14:32.960 --> 00:14:36.720 So it took me an entire year to get on the registry. 00:14:36.799 --> 00:14:40.559 And again, I think that's a really tough road. 00:14:40.720 --> 00:14:48.639 And I thought I wish it were a little simpler, truthfully, because with a living donor, you go in and you get all your tests done at the same day, and it's a quick process. 00:14:48.879 --> 00:14:55.759 So I was really surprised at all it took for an individual to do what they needed to do to get on the list to begin with. 00:14:55.840 --> 00:14:57.919 So that was very eye-opening to me. 00:14:58.159 --> 00:14:59.200 Yeah,

that's a long time. 00:14:59.279 --> 00:15:02.000 And did you have to go on dialysis during that time? 00:15:02.320 --> 00:15:07.519 So I was really lucky because I I my nephrologist said, okay, let's just keep waiting. 00:15:07.600 --> 00:15:08.240 Let's keep waiting. 00:15:08.399 --> 00:15:10.240 So I was feeling sicker and sicker. 00:15:10.399 --> 00:15:13.360 I was really, I was working and sleeping, it was all I was doing. 00:15:13.679 --> 00:15:21.679 But because my process went through really fairly quickly, I mean, after I was on the list, that I was able to stay off dialysis. 00:15:21.759 --> 00:15:27.919 And I think that's what's also helping me to be so healthy now that I was able to find a way to do it preemptively. 00:15:28.159 --> 00:15:28.480 Yeah. 00:15:28.799 --> 00:15:32.320 Can you talk a little bit about how you're feeling now and your health today? 00:15:32.799 --> 00:15:34.399 I just feel so grateful. 00:15:34.480 --> 00:15:44.960 Um, first of all, I have a renewed respect and compassion for those waiting and in need because I was lucky, but I know others are struggling through that, and I have a just have a renewed compassion for them. 00:15:45.200 --> 00:15:47.200 And I also have renewed life. 00:15:47.360 --> 00:15:54.960 I know God kept me here for a reason, and I tend to pay it forward as long as I'm here on this earth because I've gotten this gift. 00:15:55.200 --> 00:15:55.679 Yeah. 00:15:55.919 --> 00:16:06.000 I think it's a powerful thing to have for you as a transplant professional to have had this experience and the insight that it gives you that I think that you can use in your work as invaluable. 00:16:06.639 --> 00:16:07.440 Absolutely. 00:16:07.600 --> 00:16:11.279 You know, first thing I did was go back to our office and say, what are we doing for the recipients? 00:16:11.440 --> 00:16:12.879 What are we doing for the donor families? 00:16:12.960 --> 00:16:13.759 Are we doing enough? 00:16:13.919 --> 00:16:14.240 Right. 00:16:14.399 --> 00:16:17.519 So definitely motivated me in that category. 00:16:18.000 --> 00:16:24.159 Is there anything that you learned about yourself going through the transplant experience twice that you'd like to share? 00:16:24.559 --> 00:16:26.080 I I think resilience. 00:16:26.320 --> 00:16:33.519 I think that I didn't realize how motivated and determined I was, that I really pushed and pushed. 00:16:33.600 --> 00:16:35.360 So I learned that about myself. 00:16:35.519 --> 00:16:38.080 And I wish I could transfer that to everyone. 00:16:38.480 --> 00:16:40.159 I know it's overwhelming. 00:16:40.720 --> 00:16:46.559 You were pushing the ball forward the whole time and and working with the system versus against it. 00:16:46.639 --> 00:16:49.679 And resilience is what I would describe you as. 00:16:50.399 --> 00:16:52.320 They would laugh at me uh when I would call. 00:16:52.399 --> 00:16:55.840 I was got all my testing done at Northwestern, and they said, Well, where do you want to do

it? 00:16:55.919 --> 00:16:57.039 I was like, I don't care. 00:16:57.200 --> 00:17:01.120 I'll do it at any location, just the quickest appointment you can get for me. 00:17:02.720 --> 00:17:03.679 So that's interesting. 00:17:03.759 --> 00:17:08.000 So you did your testing at Northwestern, but went to Wisconsin for the transplant. 00:17:08.240 --> 00:17:08.640 Yes. 00:17:08.880 --> 00:17:10.079 How does that work? 00:17:10.480 --> 00:17:17.920 The reality is that Wisconsin, if I was going to have a deceased donor, Wisconsin has a two-year wait list for my blood type. 00:17:18.000 --> 00:17:19.839 And in Chicago, it was five years. 00:17:20.000 --> 00:17:24.000 So that's why and I had had my first transplant at University of Wisconsin. 00:17:24.079 --> 00:17:25.839 So that's why I made that choice. 00:17:26.160 --> 00:17:26.720 Wow. 00:17:26.880 --> 00:17:27.839 That's interesting. 00:17:28.000 --> 00:17:33.279 So that kind of gives us a lesson in dual listing or being mindful about where you get listed. 00:17:33.359 --> 00:17:35.599 Is there anything else you want to share about that? 00:17:36.000 --> 00:17:37.759 I did a lot of research on that as well. 00:17:37.920 --> 00:17:38.880 I called around. 00:17:38.960 --> 00:17:48.240 I've, you know, to various centers that I felt that I could get to because, you know, you have you get the call if you're getting it to see stoner, you have to know that you can get there in a few hours. 00:17:48.400 --> 00:17:51.359 So I looked in just my radius. 00:17:51.519 --> 00:17:54.720 I don't have the means to say I'm just gonna go anywhere. 00:17:55.279 --> 00:17:55.920 Get somewhere. 00:17:56.559 --> 00:17:59.920 So, and um, I kind of ranked them based on that. 00:18:00.319 --> 00:18:03.920 I think Chicago has an amazing, amazing transplant network. 00:18:04.000 --> 00:18:08.000 There's so many great hospitals here, but I had to look at that await time as well. 00:18:08.160 --> 00:18:08.640 Yeah. 00:18:09.119 --> 00:18:11.279 Well, I'm so glad all that worked out for you. 00:18:11.680 --> 00:18:12.319 Thank you. 00:18:13.200 --> 00:18:19.519 You've lived the transplant experience personally, and you also lead one of the country's largest iBanks. 00:18:19.920 --> 00:18:20.160 Sure. 00:18:20.240 --> 00:18:27.279 I work for Eversite, and we're an IBank that is has locations across the country and an additional one in South Korea. 00:18:27.599 --> 00:18:29.839 And you're CEO of Eversite, yes. 00:18:30.240 --> 00:18:30.559 Okay. 00:18:30.720 --> 00:18:35.039 And for listeners who might not know, what happens when somebody donates their corneas? 00:18:35.359 --> 00:18:44.480 Well, if donation is consented, then a recovery technician goes out, usually to the hospital, to recover the tissue and has to be recovered within 24 hours. 00:18:44.720 --> 00:18:49.119 The tissue is brought back to our office to evaluate for suitability for transplant. 00:18:49.279 --> 00:18:57.359 At the same time, we're checking the medical

history to make sure there are no rules, getting blood results back for additional check to ensure the tissue is safe. 00:18:57.599 --> 00:19:03.359 We make every effort to show the tissue is cleared to be a gift to someone in need of renewed site. 00:19:03.680 --> 00:19:07.599 If the tissue is suitable, then we offer the tissue to a corneal surgeon. 00:19:07.680 --> 00:19:14.880 And if accepted, we proceed to process the tissue to the surgeon's specification for that specific patient. 00:19:15.119 --> 00:19:20.799 And we get the tissue out the door to arrive at the surgical facility in time for a scheduled surgery. 00:19:21.039 --> 00:19:24.160 Scheduled surgery is what's really amazing with cornea. 00:19:24.400 --> 00:19:32.799 We provided um 11,000 tissues last year for transplant alone and also 3,000 tissues for research and training. 00:19:32.880 --> 00:19:39.200 So if the tissue can't be used for transplant, we really want to make sure that it's used for research and education as well. 00:19:39.519 --> 00:19:42.480 Wow, that is truly inspirational and incredible. 00:19:42.640 --> 00:19:44.319 That's a lot of corneas. 00:19:44.559 --> 00:19:45.119 It is. 00:19:45.359 --> 00:19:56.640 So on our pre-call, you educated me because I was picturing if I donate my corneas, that you know, one day my niece or nephew might see my eyeballs in somebody else's head and be like, I think that's my aunt's eyes. 00:19:56.720 --> 00:19:57.680 And you corrected me. 00:19:57.759 --> 00:20:00.160 So tell me a little bit about what does it mean? 00:20:00.240 --> 00:20:03.119 What part of the eye is actually transplanted? 00:20:03.440 --> 00:20:05.119 Yeah, we get that question a lot. 00:20:05.359 --> 00:20:10.400 For example, a donor family might say, I hope Sypient gets my husband's beautiful blue eye. 00:20:10.720 --> 00:20:12.160 Yeah, that's what I was thinking. 00:20:12.319 --> 00:20:14.079 And I think I know about this stuff. 00:20:14.640 --> 00:20:18.000 The iris is what gives the eye the color, and that stays with the donor. 00:20:18.079 --> 00:20:21.599 We recover just a small amount of tissue, the surface of the eye. 00:20:21.759 --> 00:20:27.279 It's a clear dime-shaped tissue that acts as a window into the eye, letting light in. 00:20:27.599 --> 00:20:27.839 Okay. 00:20:28.000 --> 00:20:36.319 And one of the things I think that's really cool about cornea transplants is the recovery time isn't as urgent. 00:20:36.480 --> 00:20:41.680 Can you talk a little bit about recovery times and how long they remain viable once they're removed? 00:20:42.079 --> 00:20:42.480 Sure. 00:20:42.720 --> 00:20:48.000 We have to recover within 24 hours, but we like to recover within 12. 00:20:48.079 --> 00:20:52.160 So that's our internal goal, but we can recover up to 24 hours. 00:20:52.319 --> 00:21:00.240 Tissue, corneal tissue expires in 15 days, but it's ideally used within 11 days studies show. 00:21:00.400 --> 00:21:03.839 But many US surgeons prefer to get the tissue much more quickly. 00:21:03.920 --> 00:21:06.160 So typically three to five days. 00:21:06.319 --> 00:21:08.079 So a lot of things have to happen. 00:21:08.160 --> 00:21:10.319 I talked about all those moving parts in our office. 00:21:10.400 --> 00:21:14.240 They have to happen very quickly to get that tissue off to the surgeon. 00:21:14.559 --> 00:21:20.319 So is the preference of three to five days because it's just fresher and it's going to work better? 00:21:20.559 --> 00:21:23.680 Does something happen around day 15 where it's not as good? 00:21:24.160 --> 00:21:31.519 It's still good, but there can be some swelling, which would take, you know, it makes it a little bit more difficult and a little bit extra time for healing. 00:21:31.759 --> 00:21:34.000 Patients want to see instant results, right? 00:21:34.160 --> 00:21:40.559 So we find that the tissue we send internationally that goes those long times does just as well. 00:21:40.799 --> 00:21:46.640 But if surgeon does it within, you know, within three to five days, that patient could be seeing the next morning. 00:21:46.880 --> 00:21:48.400 Wow, isn't that incredible? 00:21:48.640 --> 00:21:49.680 Yeah, it is. 00:21:50.000 --> 00:21:54.559 Does everyone who needs a cornea transplant get one in the U.S.? 00:21:54.960 --> 00:21:59.839 Yes, you're 10 times more likely to be a cornea donor than an organ donor as the tissue is avarium. 00:22:00.160 --> 00:22:03.920 Vascular, so no blood flow, just because it's the surface of the eye. 00:22:04.160 --> 00:22:09.359 So many rules for organs do not apply to cornea, including many types of cancer. 00:22:09.680 --> 00:22:12.319 Today, corneal surgeons can schedule with us. 00:22:12.400 --> 00:22:16.400 They say, I have a patient, I want to do the transplant on today. 00:22:16.720 --> 00:22:18.559 You know, we we need a few days. 00:22:18.720 --> 00:22:21.200 And we're able to supply that tissue for the surgery. 00:22:21.279 --> 00:22:22.079 No wait lists. 00:22:22.480 --> 00:22:24.559 Can you imagine if we could do that with kidneys? 00:22:24.799 --> 00:22:26.000 Wouldn't it be amazing? 00:22:26.160 --> 00:22:26.960 Wouldn't it be? 00:22:27.119 --> 00:22:27.599 Yeah. 00:22:27.920 --> 00:22:29.039 Schedule a kidney. 00:22:29.359 --> 00:22:30.640 Schedule a kidney. 00:22:31.119 --> 00:22:35.200 So in reality, the I Bank is the only party that can recover the tissue. 00:22:35.359 --> 00:22:38.559 Why is that important for listeners to understand? 00:22:40.240 --> 00:22:45.039 So corneal transplants, as I said, help cure 10% of blinding eye conditions. 00:22:45.119 --> 00:22:49.440 But we also work with researchers on cures for other blinding eye conditions. 00:22:49.519 --> 00:23:00.400 Since the eye bank is doing all of the recoveries, we feel it's our mission to supply researchers with disease tissue to study and help find cures for all other blinding eye conditions. 00:23:00.559 --> 00:23:10.160 If we did it just for cornea, we wouldn't be

helping the other parts of the eye that the disease parts of the eyes that need solutions as well. 00:23:10.480 --> 00:23:11.920 Oh, interesting. 00:23:12.559 --> 00:23:19.119 So how does consent work when corneas are the only tissue being recovered from somebody? 00:23:19.440 --> 00:23:24.880 The organ procurement partners that we work with do a wonderful job of getting consent for organ tissue and eye. 00:23:24.960 --> 00:23:31.519 So if it's more than eye, then the OPO does all of that, gets the consent, and then sends it over to us for the recovery. 00:23:31.759 --> 00:23:44.000 If it is that the only thing that qualifies for donation is the cornea, then they send it over to us, and then we start the process of working with the donor family, getting the medical social history before we proceed with recovery. 00:23:44.160 --> 00:23:54.240 So it's just a different process that we take depending on what the family has consented to or based on their medical history, what they're able to donate. 00:23:54.480 --> 00:23:56.559 So we do all the recoveries. 00:23:56.799 --> 00:24:06.079 So basically that they have a donor in their facility to do uh tissue donation, then we go to their OPO to do the eye recovery. 00:24:06.240 --> 00:24:09.440 Since we're we, you know, have the best knowledge and skills to do that. 00:24:09.519 --> 00:24:14.000 So we do both donors and individual eye donors. 00:24:14.079 --> 00:24:19.519 When we have an eye donor, we go out directly to that hospital or funeral home to do the recovery. 00:24:19.759 --> 00:24:20.640 Oh, interesting. 00:24:20.880 --> 00:24:21.200 Okay. 00:24:22.160 --> 00:24:28.960 Eversight operates in Connecticut, New Jersey, Ohio, Illinois, Michigan, Arizona, and South Korea. 00:24:29.119 --> 00:24:31.039 I like how South Korea is part of that. 00:24:31.359 --> 00:24:33.920 What does that footprint allow you to do? 00:24:34.240 --> 00:24:38.160 The network of IBANGS allows us to serve our community to the best of our ability. 00:24:38.319 --> 00:24:41.839 We have, you know, strategic locations across the country. 00:24:42.000 --> 00:24:49.440 And we want to honor donors' wishes and make sure as many possible donors get to have the legacy of living on through others and saving lives. 00:24:49.680 --> 00:24:52.960 So we want to maximize the donation. 00:24:53.200 --> 00:24:56.799 I think that with our network, we're able to do that very successfully. 00:24:56.960 --> 00:25:02.640 And even if we recover more in a state than is needed for that state, there are other states that need it. 00:25:02.720 --> 00:25:04.480 There are other IBANks that might need it. 00:25:04.559 --> 00:25:06.240 We can move it internationally. 00:25:06.480 --> 00:25:09.039 So we want to maximize donation. 00:25:09.440 --> 00:25:16.079 And then for our IBank in South Korea, it helps us to meet the needs of more patients internationally. 00:25:16.160 --> 00:25:20.720 Right now, we ship tissue over to our South Korea location. 00:25:20.799 --> 00:25:23.920 They reevaluate the tissue and then can distribute it from there. 00:25:24.240 --> 00:25:27.279 So how do you transport corneas internationally? 00:25:27.440 --> 00:25:28.400 Is it FedEx? 00:25:28.880 --> 00:25:29.759 Whatever works. 00:25:30.000 --> 00:25:34.240 Sometimes it's FedEx, but it's usually flights that a travel travels on. 00:25:34.319 --> 00:25:35.519 And we have different coolers. 00:25:35.599 --> 00:25:39.599 So we have 12-hour cools, 24-hour cools, 72-hour coolers. 00:25:39.759 --> 00:25:46.319 We also sometimes include trackers that make sure it stays at the right temperature as it's going across the country. 00:25:46.400 --> 00:25:48.319 So we've perfected it pretty well. 00:25:48.480 --> 00:25:50.319 We don't have very many mishaps. 00:25:50.480 --> 00:25:53.039 We have become logistics masters. 00:25:54.400 --> 00:25:55.599 I love logistics. 00:25:55.680 --> 00:25:59.119 And when it comes to moving body parts, it really fascinates me. 00:26:00.160 --> 00:26:03.920 It sounds like in the United States, a cornea transplant is super common. 00:26:04.000 --> 00:26:07.039 We aren't, you know, there's not a wait list for corneas. 00:26:07.279 --> 00:26:08.960 What about the rest of the world? 00:26:09.119 --> 00:26:11.039 How does this apply internationally? 00:26:11.440 --> 00:26:16.240 Yeah, it's really a part of our mission because we're meeting the need in the United States. 00:26:16.400 --> 00:26:24.079 And our excess tissue goes overseas, as there are 12 million people need of a transplant from corneal blindness worldwide. 00:26:24.240 --> 00:26:25.119 Um, and U.S. 00:26:25.200 --> 00:26:27.680 exports are not coming close to meeting the need. 00:26:27.839 --> 00:26:29.279 We can help less than 1%. 00:26:30.160 --> 00:26:34.000 But we have to say if we help 12 people this week, it's better than none. 00:26:34.319 --> 00:26:42.880 So many countries with strong I banks and donation systems like Italy, Canada, Australia, but there's so many more that don't have anything in place. 00:26:43.119 --> 00:26:47.599 Plus, countries have a lot of cultural and religious beliefs that they don't support donations. 00:26:47.759 --> 00:26:53.759 So the process has to also be helping to develop a positive attitude towards donation. 00:26:54.000 --> 00:27:03.039 It has to start with helping to educate and working with the governments there and things to educate the country about the positives of donation. 00:27:03.519 --> 00:27:09.759 Can you talk a little bit about the global education work, including your five-year partnership in Pakistan? 00:27:10.240 --> 00:27:10.799 Sure. 00:27:11.200 --> 00:27:17.839 Another part of our mission is to help countries build capacity, provide their own countries with the need of corneal tissue. 00:27:18.000 --> 00:27:24.559 It's a long process, a really long process, to have a donation system in place, sometimes 10 to 20 years. 00:27:24.720 --> 00:27:27.680 It's really, you know,

to really change the culture. 00:27:27.839 --> 00:27:29.279 And that's the biggest issue. 00:27:29.440 --> 00:27:31.839 But we've been in packaged hand for some time. 00:27:32.000 --> 00:27:37.680 We've helped them build a culture of donation, along with help them start four i banks across the country. 00:27:37.920 --> 00:27:42.559 Our goal is to be able to walk away and have them be self-sustaining. 00:27:42.720 --> 00:27:45.599 And we look to do that in other countries as well. 00:27:45.839 --> 00:27:49.039 But we also think is important that we have to train the surgeons. 00:27:49.119 --> 00:27:53.839 So our training and education program that we have is also something we do around the world. 00:27:54.160 --> 00:27:56.960 I'm curious what you're doing to shift a culture. 00:27:57.119 --> 00:27:58.240 Like, why Pakistan? 00:27:58.400 --> 00:27:59.039 Let's start there. 00:27:59.119 --> 00:28:08.480 Like, what was bright and shiny about Pakistan where you thought this is a country that we could truly help self-sustain their own corneotransplant program? 00:28:08.960 --> 00:28:11.920 Pakistan at a government level really wanted to do this. 00:28:12.000 --> 00:28:17.359 And so you need someone within the country that's going to help to drive the donation process. 00:28:17.599 --> 00:28:35.759 They were believers in donation and they were willing to really have billboards and messages across the country, really trying to build that positive, sharing the stories, all the marketing things we've probably done in the US to really make people understand the positivity of it. 00:28:35.920 --> 00:28:40.240 And you need a country that's willing to do that in order to be successful. 00:28:40.400 --> 00:28:45.359 And so Pakistan was one of those countries that said, we need help, will you help us? 00:28:45.839 --> 00:28:52.319 So was Korea kind of like Pakistan where they wanted help and Eversight was able to help support? 00:28:52.640 --> 00:28:55.839 South Korea is an Eversight-owned IBank. 00:28:56.319 --> 00:29:04.160 So that was that we they were really struggling, but they wanted us to come in and do it versus Pakistan was like help them do it. 00:29:04.400 --> 00:29:18.720 And actually, we're in the process now of changing that in to being an Eversight's IBank to Alliance Korea I Bank and also just working on the education of the community for donation. 00:29:18.880 --> 00:29:21.839 There's also a uh strange law in Korea. 00:29:21.920 --> 00:29:28.240 Well, I think it's strange law is that only a doctor can recover any organs or tissues. 00:29:28.400 --> 00:29:35.359 So, therefore, you know, how many doctors have time and are trained enough to be able to go and do a corneal retrieval? 00:29:35.440 --> 00:29:40.799 So we're working on changing the law so that our recovery team can do the recoveries. 00:29:41.119 --> 00:29:42.960 Wow, that is fascinating. 00:29:43.440 --> 00:29:49.920 The difference between saying, okay, we're going to set up Eversight

in South Korea versus we're going to teach Pakistan how to do this on their own. 00:29:50.160 --> 00:29:54.240 Do you see benefits to one over the other or just different? 00:29:54.319 --> 00:29:59.440 Or can you talk a little bit about those two different strategies to get more people transplanted? 00:30:00.319 --> 00:30:01.440 We look at the country. 00:30:01.599 --> 00:30:08.400 We really evaluate the country itself and decide what would be the best action for that country. 00:30:09.119 --> 00:30:17.119 We wanted a distribution center in South Korea so that could help us internationally, but we don't want them all over in every country. 00:30:17.440 --> 00:30:22.240 Our main objective mostly is to develop a country to be self-sufficient. 00:30:22.960 --> 00:30:30.240 And what big things are on your in your plans for the next few years with Eversight and growing Eversight to get more people transplanted? 00:30:30.640 --> 00:30:38.559 So in South Korea, we're spending a lot of time there right now to move it to a local IBAN and changing the laws so that we can move that forward. 00:30:38.640 --> 00:30:41.279 We're also working on a project in UAE. 00:30:42.079 --> 00:30:44.160 We've been talking to people in Vietnam. 00:30:44.319 --> 00:30:50.400 So we look at where the need is and where it can be most successful and we proceed with that. 00:30:51.039 --> 00:30:56.640 So you've experienced transplant as a recipient and lead a major donation organization. 00:30:57.119 --> 00:31:01.599 What do you wish Diane, the public understood about donation? 00:31:02.079 --> 00:31:04.319 That donation saves and enhanced lives. 00:31:04.480 --> 00:31:11.119 Um, if you have concerns, call and talk to someone about it and really understand your family's wishes. 00:31:11.359 --> 00:31:16.079 It makes that make that decision so much easier for you if you if someone you love pass. 00:31:16.480 --> 00:31:18.960 Um and that living donation works. 00:31:19.119 --> 00:31:22.880 And it's such a beautiful alternative to waiting for a deceased donor. 00:31:23.119 --> 00:31:28.319 Although tough, work through the process and call others to help to navigate the system. 00:31:28.480 --> 00:31:31.839 It really takes a village to get this process done. 00:31:32.079 --> 00:31:32.559 It does. 00:31:32.640 --> 00:31:34.799 And you are proof that it's possible. 00:31:35.039 --> 00:31:36.880 What gives you hope right now? 00:31:38.880 --> 00:31:48.079 What gives me hope is that I work with so many organizations across the world that are trying to change the world, to give people their lives back to work and prosper. 00:31:48.240 --> 00:31:53.680 And more and more people are open to donation, especially when they see how it's changed lives for others. 00:31:53.839 --> 00:32:06.079 So I encourage anyone who's gone through the process to talk, talk about their story, talk about what a success it has for you to really shine a light on the positivity of donation overall. 00:32:06.559 --> 00:32:08.160 That gives me hope too. 00:32:08.799 --> 00:32:13.920 And how can listeners learn more about Eversight or become donors if if they're not already? 00:32:14.240 --> 00:32:14.799 All right. 00:32:15.039 --> 00:32:20.720 Um, individuals can share their stories, they can give, they can volunteer, they can join the registry. 00:32:21.200 --> 00:32:28.000 You can have a direct impact on making vision a reality for people here and around the world. 00:32:28.160 --> 00:32:35.680 You can go to Eversightvision.org forward slash get involved to learn more and choose what your path might be. 00:32:35.920 --> 00:32:40.079 Everyone's different as to what they can do or want to do, but get involved. 00:32:40.400 --> 00:32:44.880 Okay, and I'll put that link in our show notes for any listeners who would like to check it out. 00:32:45.759 --> 00:32:51.119 To our listeners, thank you so much for joining us for this episode of Donor Diaries. 00:32:51.440 --> 00:32:59.599 Diane's story is a powerful reminder that understanding your options and advocating for yourself can truly change the course of a transplant journey. 00:32:59.839 --> 00:33:10.480 If you would like to learn more about cornea donation, kidney paired exchange, or the organizations discussed in today's episode, please visit the show notes for additional resources and information. 00:33:10.640 --> 00:33:12.400 We'll have lots of great links there. 00:33:12.880 --> 00:33:23.359 This season of Donor Diaries is sponsored by Giftworks, an organization dedicated to education, advocacy, and support for both organ recipients and living donors. 00:33:23.680 --> 00:33:30.480 Giftworks celebrates the courage it takes to ask for help and the miraculous ways help often answers. 00:33:30.720 --> 00:33:41.680 Within this growing community, recipients, families, and donors all come together to participate in a transformative exchange that reminds us of the power of human connection. 00:33:41.839 --> 00:33:44.880 Visit yourgiftworks.com to learn more. 00:33:45.119 --> 00:33:48.400 Remember, keep exploring what is beautiful and what is meaningful. 00:33:48.640 --> 00:33:50.799 This is Lori Lee signing off.