Loading summary
Anil Srivatsa
Hello and welcome to Sangti Valley. That's what this place is called. Just after Dirang.
Narrator / JP Swenson
Anil Srivatsa stands on a riverbank in Arunachal Pradesh, a state in northeast India. Arunachal Pradesh means land of the dawn lit mountains. Behind him, mountains cascade toward the horizon.
Anil Srivatsa
How beautiful is this?
Narrator / JP Swenson
Anil sports a pair of athletic sunglasses and a bucket hat. He's filming himself pointing to the river behind him and explaining his route across.
Anil Srivatsa
You can see the rocks and the ripples, so you know it's a shallow portion.
Narrator / JP Swenson
He turns the camera, revealing a light blue and orange SUV that Aneel named Gulfie. The words Be an Organ Donor are plastered in big letters on Gulfie's side, surrounded by countless other stickers and slogans. Anil is recording a video for his 65,000 YouTube subscribers on his channel Gift of Life Adventure. It's a mission that's deeply personal to Aneel. Ten years ago, he donated his left kidney to his brother and fellow Rotarian Arjun. This experience inspired him to become an advocate for organ donation for years. Aneel has traveled the world, from Australia to Europe and Asia to South America. He addresses business groups and Rotary clubs to educate them on organ donation and inspire them to make a difference. Much of his time is spent in India, where he drives from town to town trying to increase organ donation rates in the country, which ranks among the lowest in the world. Anil also worked with the Rotary Action Group for Blood Donation to add organ donation to their mission and their name. He archives all of his travels with Gulfie on YouTube. But the gift of Life Adventure is not just the name of his channel. It's also the name of Anils foundation that advocates and removes barriers to organ donation across the globe. From Rotary magazine, this is the Rotary Voices Podcast. I'm JP Swenson. In this episode, we'll hear about Aneel's life as an advocate and a couple stories from his friends who have navigated organ transplant too. First up, Chicago journalist Sylvia Perez sits down with Anil Shrivatsa.
Sylvia Perez
Aneel, it is such a pleasure to meet you. I have been following you on social media and I have two words for you. Tireless and advocate. Wow. The amount of time you spend trying to promote organ donation is incredible. So I have to know what got you started. I understand that maybe it has something to do with your brother.
Anil Srivatsa
Well, see, I started working for the cause. I was already in Rotary. I was just another regular Rotary member. And when my brother's situation happened, now here it is. Now my brother's been suffering from kidney disease since he was 21 as a result of high blood pressure. Who happens to also be a Rotarian. Quite active now, and he's a leading neurosurgeon in Bangalore. But he came to me in October of 2013 and said, Listen, I might need your kidney. And I said, yeah, for sure, man. I thought he would need it in a few years from now. And he said, yeah, it's gotta be now. That made me skip a heartbeat. I said, oh, that quick. He was 47. I was 46 at the time. And that started to make me afraid. I wouldn't say no to him, but I was afraid it was showing up in a lot of anger, resentment towards him. Why did he come to me now? Did he do everything possible to save his kidney? Or did he take me for granted? I started to resent my brother a little bit. Then I realized that I also needed my wife's permission. And so I told her, listen, I'm planning to give my kidney to my brother. Apparently, I need your permission. Are you okay with it? And then she freaked out and said, no, no, no, no, no, it's not going to happen. But because if I'm going to sign it and something happened to you, I got to live with that for the rest of my life. But if you can do this without my signature, yeah, go right ahead. I'm okay with that. But it wasn't possible. It was a pickle for me. And my brother on this side was dramatic and says, you know, unless she said, okay, I'm not going to take it from you. And I'm saying, you shut up. You know, you want to live or not. Let me help me deal with this. Don't add another layer for me on this one. And it came to a point when my wife and I had considered divorce, because the only reason she was in this mix was because she was my wife. And if I had no wife, there was no one to consent. And then I could do this. I left home in disgust. I ran away to the Himalayas just to get my head clear and run away from the family. It was that stressful for both of us, actually. My wife said, no way, no divorce. And I promised I'd marry her when I got back, which she didn't trust. So I went away to the Himalayas off grid, so no one could contact me. Nothing. I was out there just walking and trekking and living in a tent and bathing in the cold Himalayan rivers that were melting from glaciers. And when there was a small sliver of space, when There was telephone network, and I got this call from my wife, quite frantic, actually. I said, is everything okay? She said, yeah, it's your brother. I'm like, oh, my God. I was thinking, I hope you know it wasn't the worst news. He said, no, he just went into dialysis. I'm like, yeah, that's the normal course of doing this. And she said, no, you need to come back quick. You need to give him your kidney. I said, but you're not letting me. She said, no, no, come back. I'm okay with this. And of course I find human everything. So I told her, please give it to my brother. I said, listen, what'd you do? Do you bribed her or something? What happened? How'd that change? She said, no, I didn't do anything. He said, okay. My two kids, who were 15 and 17 at the time, sat her down and convinced her and my daughter had to ask one question. Ma, if my brother needed a kidney, would you stop me? And that changed her mind completely.
Sylvia Perez
Well, I love that you shared that, because I think it just goes to show that it's not a simple decision.
Anil Srivatsa
In those days, I didn't find too many stories online about others who've done it. Most people, you know, they give it and they stay quiet. But finally one of my doctors, my surgeon, said, okay, I'll give you somebody we did work on and they can talk to you. And that was all I had to go with. And then I did the deed. It was no big deal. And I'm thinking, what was I afraid of? I realized that fear comes from unanswered questions. And as a radio host and a TV host and a journalist, I said, okay, I gotta use my skills to go out there and tell people what it's really like so they don't be scared.
Sylvia Perez
Well, you have a great non traditional approach. For those of you who haven't had the chance, I highly suggest you follow his social media because he has this truck that's plastered. It's an SUV that's plastered with stickers and slogans. And you're driving all around Indiana, really around the world, to teach people about the importance of organ donation. Your message is loud and clear. Where did this idea come from?
Anil Srivatsa
Well, like I said, I'm a man of the media, and the first thing you do is grab someone's attention. And when you do that, they come to you and ask questions. In fact, when I was in a small town in Gujarat in India, when I was driving around India in Covid times, a gentleman saw the writing on my car and came up to me and said, listen, I need your help. My 22 year old girl has been given one month to live. And I said, why, what's wrong? And her liver apparently has been damaged and she's looking for a liver donor and she was on the list for seven years. I said, then why don't you give her a liver? And he's like, really? I can. I said, didn't your doctor say that you can donate your liver while you're alive? She says, no, he never mentioned it. And then I gathered the troops. I said, bring your family, bring your wife, your sons, your daughter. I want to talk to them now. So we had a fireside chat near the car and I explained to them what it was like. And then finally the brothers stepped up, the mother stepped up, they said, okay, I'll donate. The mother was a better match. So now they didn't have funds.
Dr. Michael Fels
They.
Anil Srivatsa
Were a poor family and they had to come up with $35,000 when they were earning 300. And so that became the next challenge. So we crowdfunded that money and eventually got this young girl transplanted with her mother, donating the kidney. And that actually became the foundation for what we call the Rotary International's first TRF global grant for free transplants. And two weeks ago we did the eighth free transplant. And that all came from that one car ride that somebody saw and talked to me.
Sylvia Perez
Wow, it's incredible to see what kind of difference this advocacy that you've been involved with is making not only in your homeland of India, but really around the world.
Anil Srivatsa
There are many things that I address along with others who do the same work along with me. Some facts have to be mentioned that put things in context. In India, almost 17 to 18% of its population have some form of kidney disease. And it's rapidly growing like a pandemic. And people are not paying attention to that until it comes to their doorstep. And it's coming to every doorstep fast. And this comes from lifestyle. And I'm trying to get Rotary involved because I want to address advocacy, philanthropy and awareness. And fourth one, I want to involve prevention. Because if you start working on prevention today, that number can decrease. Now there's something called the World Transplant Games of which America sends a huge contingent. 60 nations send teams. It's blessed by the International Olympic Association. It happens every two years. Now. I've obviously qualified to be an athlete and this year it's going to be in Germany, which is where I'm actually driving to to compete to show the world together that post transplant, either as a giver or a receiver, you can live the best life you can. And that's how we want to tell the story. And I hope the World Transplant Games gets as much attention as the Paralympics is now getting.
Sylvia Perez
Yeah, well, with your help, hopefully that's going to make that a possibility. I know you speak to different Rotary clubs around the world and I think you just mentioned you've been to 70 plus countries. What, 73 now? How many?
Anil Srivatsa
73Rd right now in Angola.
Sylvia Perez
That is incredible. So you're going from place to place now there is some controversy. An interesting article you posted on your Facebook and social media about some people are afraid of, you know, organ donations. They're concerned about. Is this something I really want to do? It's such a private thing. Maybe this isn't something that should be discussed. So what is your mission when you do all these travels, when you represent Rotary? What is your mission in getting the message across about how not only is it impactful, but you not putting your life at risk by being a lie donor and how many lives you're impacting after somebody passes?
Anil Srivatsa
Well, see, the fear comes from two things. One is for personal safety and the other one you've talked about post death donation, it's a lot of cultural issues that come into play. Superstitions, cultural misinformation of misinterpretation of what was culturally relevant maybe a hundred years ago. But it carries forward to this day and age where it has no relevance. But I'll give you an example. Right now I'm in Africa and it's actually quite true in India as well amongst certain religions. But in Africa mostly they don't want to deal with body parts after death. It has to do with spirits, it has to do with the afterlife. And I encountered that a lot in Africa. For me it is an education for myself. If I don't address the fears they have in a logical manner, then I will actually go backwards, not forwards. So here's one example about a ghost. They believe in ghosts and they believe if you mutilate the body before you bury, then there is an angry ghost. So there's a very simple thing that I talk to them about that puts things in perspective. And I've seen almost 80% of the people that have that issue turn around and say, you know, I'm in, let's go for this. Say for example, my mother, right, My mother said she wanted to be an organ donor and a body donor if when the time comes, and the time did come, and we did what she wanted to. But if I didn't do what my mother said to do, then she will come back as an angry ghost. So now tell your family you want to do it. Let that be your last dying wish.
Sylvia Perez
I'm curious. Has there been any impact on the way these different countries look at organ donation? Any laws that have been changed? Any impact in that area at all? What would you say?
Anil Srivatsa
Okay, so I'm working in Africa right now, and some countries don't even have a law. If they do, it's inadequate. And a lot of my meetings have resulted in some action that is now ongoing. Let's give you an example of Bolivia, Bolivar and Zimbabwe. I took a particular liking to that city. It's a nice, cool city. And there are five Rotary clubs that have got together and say, we'll execute a plan. What is the plan? Let's get charitable dialysis units, because dialysis is your halfway house. To get dialysis in bolivar costs about US$150 per session, and that country cannot afford it. While in comparison, one session in India is $30. It can be that cheap. In Zimbabwe, dialysis is free, but the patient has to buy the consumables, which is $150, while the consumables, when you buy it coming in from the source, is $10. So I got them the source. Five Rotary clubs got together and said, we'll do the global grant to get those machines in here and procure the consumables, which is what is most expensive in the long run. Now what Bulawayo is doing, after my talk with the surgeons, I told them, let's collect all your surgeons because they don't have capacity. We need to capacity build in Bulawayo to make sure that there are surgeons who are capable of doing the transplant. Because everybody now travels either to South Africa or to India, adding to the expense. So all the surgeons got together in one room. And I told them, listen, why don't you pick your top three surgeons? I spoke to the government official who is in charge of public health as well. So now all of them have formed a WhatsApp group. And we are now working on getting three surgeons to come to India on a VTT program, a vocational training team program, which is a Rotary program, to get trained to be kidney transplant surgeons to go back to Bulawayo and hopefully become the center and a hub for that region for people to come there for treatment and not have to go to South Africa or India. So this is a work in progress. I've Also created a model transplant law. Now, for example, Angola has asked me for that model law. And the person I happened to by chance meet on the health commission of the country, introduced to me by a Rotarian who I randomly met, they are now going to take that model law and present it to their parliament to see what they can adopt, not adopt. So it gives them a leapfrog into that process as opposed to starting from ground zero.
Sylvia Perez
I love that. And I think you brought up a good point. Rotarians are everywhere, aren't they? In the least expected places. And look how it's benefited you. What's ahead of the future for your Gift of Life Adventure Foundation? What can people look forward to hearing and seeing more from you?
Anil Srivatsa
Well, you know what you guys have been really good with? Putting me on the COVID of the Rotary magazine, Rotary Africa, putting me on the COVID You gave me a podcast. You're helping me reach out. And that's exactly what I'm trying to do, is reach out to. I want all of this to culminate in people saying, anil, come talk to us. Because getting speaking slots, even within Rotary clubs is a Herculean task. It's a morbid subject. Not everyone wants to get around it. But all of this exposure is helping. Now, what do you expect from me? More. I want to see more of the advocacy happening. Another quick example of the advocacy. I filed a public interest litigation, what in the US you call a class action, to change a provision of the Indian transplant law, which was coming in the way of patients. So I used the fundamental right with two other Rotarians. So three Rotarians changed this law in India. We won the case. To cut a long story short. And the Prime Minister of the country, in his next address to the nation, which he does monthly on the radio, dedicated all of his time to this law that he pledged to change even more of. So what this allowed is to get more people on the waiting list. People above 65 were not allowed to be on the waiting list. In fact, they're like, you're too old. You cannot do it. But now that is abolished. You couldn't have gone on a waiting list if you didn't belong to that state in India. So this litigation scrapped that. Now anyone in India can go anywhere and be on the list. So as you see, advocacy is a great way of scaling the impact. You've got to work up there and you got to work down here as well and bring it together.
Sylvia Perez
Absolutely beautiful. Great work to end by. Again, Anil, tireless advocate. Keep doing what you're doing not only for humanity, but by promoting the good work of Rotary. We appreciate everything you do and can't wait to follow you on your social media. So great to meet you.
Anil Srivatsa
Well, thank you for your time and attention. I appreciate it.
Narrator / JP Swenson
After we spoke with Aneel, he suggested we reach out to Dr. Michael Ferrari Fels, a member of the Rotary Club of Sebastopol Sunrise in California. Years ago, Dr. Fels caught wind of a book that Aneels foundation had published in India titled A Rotarian's Guide to Organ Donation. A rotarian of almost 30 years. Dr. Fels contacted Anille and asked if he could create a U.S. version of the book, to which Anil gave an enthusiastic yes. While Dr. Fels is an author and playwright by trade, his connection to organ donation is actually quite personal. About 10 years ago, Dr. Fel's partner, Wee Simla, was diagnosed with a genetic kidney disease. After five years, Wee's disease advanced and he was placed on the national kidney transplant wait list and began dialysis. Wee's story resonated with me deeply. My grandmother passed away from a genetic kidney disorder at just 59 years old. My uncle inherited the disease, and after a failed transplant and about a year of dialysis, he finally underwent a successful operation. My uncle's story gave me some insight into how waiting for a compatible organ can impact daily life as well as the difficulties that come with the search. I sat down with Dr. Fels to hear about his experience navigating an organ transplant with his partner. He began by telling me about we as urologist putting him on dialysis.
Dr. Michael Fels
It was a little bit shocking because we had both known people who had been on dialysis, and it's a very restrictive life. It's a very demanding life. There's not very much that you can do. You're tied so much to having to go into a clinic and have these transfers of body fluids, maybe even more than one time a day. This urologist said, you're in good health generally and you're young enough, so we have an alternative for you that we'd like you to try. And that alternative was called peritoneal dialysis.
Narrator / JP Swenson
Peritoneal dialysis is a form of dialysis that allows the patient to manage it from wherever they happen to be. A port was installed in wi's abdomen that allowed him to exchange old fluid for new fluid four or five times a day.
Dr. Michael Fels
Even though it's a big hassle, it's something that could be managed without having to be tied to a specific location. So we Were, we were encouraged by that. You know, that sounded a lot more like we could have a semi normal life. So that started in December of, I think it was 2019. And that was after he'd been diagnosed for a number of years.
Narrator / JP Swenson
We had also been on the national kidney wait list for five years by this point. Along with the limitations of dialysis, being on the waitlist also meant he needed to be ready at any time to receive a kidney when one became available. We tells me that at five years on the list, his life became further restricted by his condition.
Anil Srivatsa
The period of time waiting list is, they said going to be seven year to 10 years. So when last year, I'm on the.
Brian Barry
Five years old, they can say that.
Anil Srivatsa
You cannot leave the country now because we don't know when you're going to have kidney coming and we're going to call you, you have to come right away.
Narrator / JP Swenson
Wee had been urging his relatives in Thailand to get tested and see if they're a match for a kidney donation. His older sister, who had kidney disease received a kidney from his younger sister. So it seemed like a viable possibility for we as well.
Dr. Michael Fels
We asked everybody, is it possible? Is it possible? And one by one they went in for diagnostic evaluations in Thailand. And unfortunately, as each one went in, there was a problem, there was a problem with the donor's health that had not been previously diagnosed. So we began reaching out a little bit more broadly and we said, okay, you know, anybody have any kids, like nieces, nephews, you know? And we went out another ring in the circle and there was a nephew in his early 20s who said, yeah, I can do that.
Narrator / JP Swenson
We's nephew was evaluated in Thailand and was found to be a promising candidate. Wi's kidney center at the university of California in San Francisco invited him to come to the United States for further evaluation.
Dr. Michael Fels
Well, that's when it got really exciting and complicated and ultimately depressing. We had a lot of trouble getting him to the United States. That is not easy under any circumstances. But here we had a young man, never been outside of Thailand in his life, didn't speak a word of english, and we had to present him or he had to present himself to the u. S. Embassy in Thailand to secure a visa for medical reasons to come to the United States. So he went to the council and they just turned him down. He couldn't make a clear and compelling argument for himself as to why he needed to do this, so they turned him down and that was horrible.
Narrator / JP Swenson
We and Dr. Fels didn't know what to do. Next, we had run out of blood relatives. His nephew was the only path forward at the time. So they reached out to their congressman in California and asked for assistance.
Dr. Michael Fels
His congressional aide said, well, we'll. We'll give it a shot. We'll work with you. So they did, and it worked. They were able to get in touch with the US Ambassador in Bangkok and were able to secure a visa for him. It wasn't easy, but it worked.
Narrator / JP Swenson
After complicated arrangements were made to assist Wee's nephew in navigating the airports. Keep in mind, he didn't speak English. He finally arrived in the United States.
Dr. Michael Fels
I think it was right after the new year in 2024. We were really optimistic, and here was this guy who seemed healthy and young with a good. A good kidney. And, yeah, we were very optimistic and excited and that was going to happen. So he got to the United States. We were able to get him. And he had his testing done locally here in Santa Rosa area in Sonoma county, and then went in for the interviews with the team at UC San Francisco, the transplant team at UC San Francisco. And what they told us was that they found some incipient issues with him that hadn't been uncovered in previous blood testing, well, all kinds of testing. So ultimately they rejected him. And this was like a slap in the face. This had been our big hope, was that this was going to work, and it didn't work. And so we had to put him back on the plane. There was no appeal for this. I mean, it's either going to go or it's not. And this was not. So we had to put him back and send him back to Thailand. And at that point, things look pretty. Pretty gloomy.
Narrator / JP Swenson
That's when Dr. Fels decided to take matters into his own hands.
Dr. Michael Fels
UC Davis had been very responsive and has a great website for both potential kidney donors and for potential kidney recipients. So I got on their website and I looked and I found some suggestions from them as to what do you do when you're just stuck like this. And one of the things they said was write to everybody, you know, write a letter to everybody, you know. You know, don't be afraid to ask. And if you're the potential recipient, you need to have somebody acting on your behalf. And so essentially what we decided was that, okay, I would take this over. I would be the advocate for we's search because we were finished with family. There was nowhere else to go with that. So now we had to go beyond it.
Narrator / JP Swenson
In March of last year, Dr. Fels drafted up an email to about 60 people with a very important ask.
Dr. Michael Fels
Basically, it said something to the effect of can you be a needle in a haystack? That that's pretty much what this search was. And I worked with a good friend of mine who's pretty good at public relations and, and he was the one who actually came up with that sort of tagline, you know, can you be our needle? The core of it was that here's this guy, we, who is living with this condition. It's a reversible condition. It's something that you might be able to help with. And even though there's some inconvenience and some discomfort involved, it's temporary. And you're going to be doing something that's life changing, life saving. So we sent it out to my list of friends and we's friends that he had. And then I decided to send it out to my Rotary club and I did. And then I got in touch with our Rotary district governor and I said, I really would like to get this out more than it's going. I mean, it's going out to people I personally know, but there must be a lot of people out there who I. In Rotary, certainly. I don't know. And would you be willing to put this into your newsletter? Into Your district newsletter?
Narrator / JP Swenson
Dr. Fels, district governor was very supportive. Dr. Fels received messages of well wishes and good luck. But still no volunteers.
Dr. Michael Fels
Until one person did get in touch with us and said, oh, I didn't know we needed a kidney. And this was someone who was in a circle of friends who we had a tradition of having a New Year's gathering with a group of eight friends. And these friends would get together New Year's Day and we'd talk about our past year and what the coming year might be like. And she was one of these people.
Narrator / JP Swenson
Her name is Cynthia McReynolds. She decided to undergo the same testing that we's family did to see if she was a match.
Dr. Michael Fels
Yeah. She said, well, I can do this. I'm qualified. And we couldn't believe it. I mean, it was like. I mean, it was a miracle. And it felt in every way like a miracle. It was just beyond anything we could have imagined. Well, after the real excitement of the possibility, then we had to get into the. Into the weed, so to speak, get into the details. And one of the concerns we had was that Cynthia was older than what we had assumed was going to be acceptable, but it wasn't true. It was a matter of her health, too. So she was in excellent Health. She's a psychotherapist and very self aware. So we knew her well enough that it was going to be a well considered decision and she was introspective enough that she would have examined her own motivations and her own strengths and weaknesses for doing this and that we could feel pretty confident that if she said she was going to do it, she would go through with it. So it was extremely exciting.
Narrator / JP Swenson
So I'd like to jump ahead then to the moments leading up to the actual transplant operation. The night before this operation, what were you feeling? What were you going through mentally? Did you get any sleep that night? I mean, what was that process like?
Dr. Michael Fels
Oh, I had plenty of nerves. Yeah. I mean, I don't think I slept at all. I mean, I'd played a really active role and now suddenly it was going to happen with or without me. It didn't have much to do with me anymore. So there was a lot of feeling of, God, I really hope this works and I hope we're doing the right thing. And I was very, very apprehensive.
Narrator / JP Swenson
I'm sure that operation probably felt like years for you, but how did you feel afterwards and what did the doctors say to you when they came out of the operation?
Dr. Michael Fels
I was waiting in the post transplant waiting area with Cynthia's husband, who's also named Michael. And he and I had been sitting and watching. There's a board that shows you where your patient is at any moment. You know, they're in the operating room, they're out of the operating room, they're in recovery, whatever. So he and I had been sitting there watching this board and talking. And the doctor came out and he walked over to me and he said, everything's perfectly normal, everything's fine. And that's when I really lost it. And I couldn't believe it. I mean, even now thinking about it, it's easy to feel that same feeling of five years of. Of holding on to this and wanting it to be happened so badly. And then it happened and it's. Yeah, it's hard to talk about it.
Narrator / JP Swenson
Now that you're on the other side. Looking back, what are some big takeaways that you have about organ donation and transplant that you would maybe want to impart on somebody who is wanting to learn more about organ donation?
Dr. Michael Fels
Everybody has two. Everybody has two kidneys and you only need one. That's one thing that maybe we don't all know. My father lived his entire life with only one kidney, was born with one kidney. Another takeaway is that this is no longer a new experimental procedure. This is something that the transplant physicians have down to a very, very well established routine. The risks involved are minimal. There are risks, of course, any surgery, but these are minimal. They know what they're doing. It's a quick turnaround. You're out of work for. If you're working, you're out of work for a week or two at the most. In Cynthia's case, she was back doing her. I mean, she walked out of the hospital on the first day, the second day. So, yes, it's a big thing to go through, but it's apparently easily recoverable. That's another takeaway. Third thing is that this is one of those invisible ailments. People don't go around with a sign that says, you know, I need a kidney or I have kidney disease. It's not like something that affects. Affects how you walk or talk or something. And so there are more people out there than I think we know who would benefit from a kidney. I mean, I've tried to donate because of my age. They've said no, but okay, it's something that, that we can do. And if you can't do it yourself, then you can help look for somebody to do it.
Narrator / JP Swenson
Anil gave us the perspective of a donor and advocate, Dr. Felz. And we outlined what the search for an organ entails. But there's one story we still needed to hear. Imagine you wake up one day and you're going about your routine when you start to feel under the weather. Weeks go by and your condition only worsens until finally you decide to see a doctor. But what happens when that doctor tells you that you have 60 days to live and that your only hope of surviving is an organ transplant? Well, that's what happened to Aneel's friend, Brian Barry. Brian is a double transplant recipient living in North Carolina. And his story illustrates in no uncertain terms the vital importance of organ donation. We sat down with Brian to hear his story.
Sylvia Perez
Tell me about your connection to Rotary and Aneel, how this all came about.
Brian Barry
So I met Aneel virtually four years ago. I was part of a networking group that was built around nonprofits in Richmond, Virginia. And when Covid hit, we went from in person meetings to virtual meetings. We actually ended up having groups over in Ireland, and through that made some LinkedIn connections, happened to be part of the same transplant group on LinkedIn. He read my profile on LinkedIn after a mutual connection and reached out to me and said, hey, I'm on this. I'm doing this worldwide tour. Trying to raise awareness for kidney transplants. Love to talk to you. That's how we met. When he came to the US to go on one of his tours in the US he came to Richmond. So we spent a little bit of time together and have just stayed in touch ever since.
Sylvia Perez
You're a double transplant recipient. You have a new kidney, a new liver. But take us back to 2018, when basically you were told you have 60 days to live. Give us, if you can, kind of a brief description of what actually led up to that.
Brian Barry
Yeah. So most of 2018 had been a normal year. My wife and I, pretty active. We had traveled to the Dominican a couple of times that year. We've been out in California. And a couple of days after coming back from California, in about the middle of August, I just started having some discomfort in my midsection. I thought it was just a bad stomachache or a muscle pull. I couldn't really place what it was. Within a couple of weeks, my energy was gone. I started to retain fluid from the beginning of August to the middle of September. I'd put on about 20, 50 pounds of all fluid. And so you. My wife, pretty much from the middle of August was saying, go to your doctor. Go to the doctor. Something's wrong with you. And I thought, well, I can figure this out. 2 Advil normally gets rid of a pain in an hour, so I'll just pop four and it'll fix it sooner. And I get groans and head shakes every time I share that with people. But that was my mindset. I. I wasn't accepting that something was wrong. So, September 17, we have a family friend that's been a long time, family doctor of ours. I sent him a picture of my legs. I said, this is my problem. My legs are now from my hips down to my ankles. It's all one shape. There's no definition there. That was a Saturday. He wanted me to come in to his office. He was going to meet me in his office that afternoon. And I was, no, I can wait till Monday. So I walked in Monday morning. He took one look at me and said, you're in trouble. And did an abdominal X ray, ran some blood tests, sent me in for a liver scan later that afternoon. And there were some other things that were going on that I was. I just ignored. I was having a tough time keeping anything down. And that had been going on for about a month. And looking back, obviously it wasn't smart to ignore that. But at the time, I was just. I was so busy with running a company with Getting in one son, moved into college. My mother in law lived with us and taking care of her. So I just let it go. But that afternoon, after taking a liver scan, we walked back out to the car to head back home. And our doctor called, he'd already seen the results and he said, I need you to get to an er. And I was like, okay, which one? He said, well, you tell me which one you want to go to. And there's one near our house. And I said, well, we'll go to Memorial Regional. And he said, okay, go get checked in, I'll call ahead, they'll know you're coming. And I said, well, why am I going to. He said, well, I can't give you the final diagnosis because it's not my job, but I believe you have end stage liver and end stage kidney failure. And the car just went silent, like all of the oxygen got sucked out of the car right then. And we rode in silence for the 10 minute drive to the hospital, just trying to process, like, what are you talking about? Late that evening, this wonderful liver doctor said, you're going to need to get some rest. You've got a lot of work to do. And I said, well, what's your prognosis? And he goes, well, you got about 60 days unless we keep you alive long enough to get you a new liver. And then the last words he said when we walked out of the room was, try to get some rest. That was the first time I laughed all day, was when he said that. I just involuntarily chuckled and was like, how ironic.
Sylvia Perez
Right?
Brian Barry
We won't be going to sleep tonight. So wow. So, yeah, that was how we found out. It was a long day, a lot of heavy information. And we did at that point what most people do. We picked up our phone, got online, started googling everything. None of what we found was good or encouraging. I've been asked several times, people have said, you had to have felt bad, you had to have felt something before. And I'm like, we walked all over Sacramento, California a week before I started feeling bad. So then it was 30 days later when I found out I had end stage liver and kidney failure.
Sylvia Perez
So you went through a lot. There were days where you thought you weren't going to make it. You got a phone call the night before Thanksgiving. Let's talk about that. Tell me about that.
Brian Barry
Yeah, so to your earlier point, that was a very weird time. I was in a coma for five days at one point during the period. And waking up from a coma was extremely Disorienting. It was nothing I'd ever experienced. It's hard to believe what the people are telling you because when you went to sleep, it's like it was Friday when I fell asleep. How can it be Tuesday? The original plan was we would continue to get treated in Richmond and then do Thanksgiving at home and then drive down the day after, check into atrium, be on the transplant list and just wait for transplants. On November 9, I was having my second day of temporary dialysis and we had some pretty major issues with that where I had a significant bleeding issue, ended up being airlifted to atrium the next day and had nine days of just trying to stabilize. The Monday before Thanksgiving, they actually allowed me to leave the hospital. And so Wednesday we came in for blood work. I wasn't feeling great at all Wednesday. I almost got them to check me back in Wednesday, but I thought, no, we're going to go do Thanksgiving with our family. So we went back to their house. Literally sitting on the den floor playing with my little nephew, My little two year old nephew. My oldest son had driven down and my phone rang and it wasn't a number I recognized, so I didn't answer it. Just seconds later, my son had picked up my phone and was handing it to me going, dad, look at your phone. And my wife's tipping me on my shoulder going like, brian, pick up your phone. And I looked at it and the voicemail was from the transplant center going, call us back. And so I called them and they said, well, we have your offer. And it was unexpected, so it was shocking. So I said, okay, we'll be there in 20 minutes. And they said, well, your organs are coming from Memphis. It's going to be four or five hours before they get here. Take your time. I was like, okay, we'll be there in 25 minutes.
Sylvia Perez
Yeah, I'm ready. Yeah.
Brian Barry
We got wheeled in between 5 and 5:30 Thursday morning. Not lost on me that it was Thanksgiving Day. The bigger part that wasn't lost on me was somebody had lost a family member. That's a heavy thing. But not only that, we had two transplant teams give up their day for Thanksgiving to come in and start doing these surgeries. Even as I'm being wheeled in, I'm thanking everyone I see, like trying to roll my head around the table, but just making sure everyone gets thanks. And they're all smiling and happy. And I got the liver that day. I got wheeled back into ICU for the night. They kept me out for 12 hours and took me back in early Friday morning to get the kidney, my will to survive was pretty strong. I asked the doctor Thursday morning when I was being wheeled in, I was like, hey, if everything goes well, when do you think I'll wake up? He goes, probably Saturday, Saturday afternoon sometime. And I'm a big college football fan, and there's a big rivalry game that was going to be on that Friday. And I said, well, I was hoping, and I'd wake up in time to see the UVA Virginia Tech football game tomorrow. And he just laughed and goes, I don't think you'll see that one. So I woke up Friday afternoon, like 10 minutes before kickoff, and the first question I asked, I scribbled it out on paper and it was like, has the game come on yet? And the kidney doctor was standing there and he just laughed and he goes, I think he's going to be okay.
Sylvia Perez
So, oh, my gosh, I think they need to, to do a commercial with that. Here's a man who was so determined to watch his sports, he made sure he was going to be able to do that. And what a day that must have been for you. Well, you've had a second chance at life thanks to somebody's selfless donation. And that's why we wanted to talk to you. So, Brian. Barry, you look great. Hopefully life is good and you're living it to the fullest. And we still so appreciate you sharing your story with us.
Narrator / JP Swenson
Brian shared a story of hardship and uncertainty that culminated in a second chance at life on Thanksgiving Day in 2018. As we listened to Brian talk about his experience, receiving his prognosis, I couldn't help but think of my own experience on Thanksgiving Day. Just last year, there was an empty chair as I sat down with my family at the dinner table in San Diego. It belonged to my father. He was in the hospital facing a sudden end stage liver disease diagnosis. On Christmas Eve, my family stood around his bed in an ICU in Milwaukee, hoping that by some miracle he would be accepted as a candidate for an organ transplant. As snow fell outside, it became clear that our pursuit of this Christmas miracle was futile. With my mom and sister beside me, we said our final goodbyes. As Brian recounted his journey, I felt I understood what was at stake by proximity. I understood his fear and his bravery. But Brian also taught me something. He taught me that organ donation is not a miracle. It is a gift. In the case of deceased donors, it is both a tragedy and a gift. Anil gave his kidney to his brother Arjun, who was a neurosurgeon. Arjun would go on to use his gift to help others. Cynthia gave her kidney to Wies Simla, who used her gift to brighten the lives of his community, including his partner, Dr. Michael Fels. Brian used his gift to raise his family and inspire countless others with his story. And on Christmas Eve, my uncle used his gift to get me through the most difficult moment of my life. This is what organ donation can do. This episode of the Rotary Voices Podcast was produced by me, JP Swenson and edited by Wen Huang. Sylvia Perez was our host. Production by Joe Desault. If you enjoyed the show, please rate us five stars on Apple Podcasts and Spotify and share it with your friends. The Rotary Voices Podcast is produced by Rotary Magazine, the official monthly publication of Rotary International. Thanks for listening.
Release Date: October 27, 2025
Host: Rotary magazine
Featured Voices: Anil Srivatsa, Sylvia Perez, Dr. Michael Fels, Brian Barry, and narrator JP Swenson
This compelling episode of the Rotary Voices podcast centers on the life-saving and life-changing power of organ donation. Through three powerful personal stories, listeners gain insight into the emotional journey of organ donors, recipients, and their families. In-depth interviews with global advocate Anil Srivatsa, author and partner-advocate Dr. Michael Fels, and double-transplant recipient Brian Barry vividly highlight the challenges, advocacy work, and profound impact created by organ donation worldwide.
[00:01–17:10] Interview with Sylvia Perez
[17:17–33:01] Interview with JP Swenson
[33:54–42:49] Interview with Sylvia Perez
Anil Srivatsa on overcoming family hesitation:
"My two kids, who were 15 and 17 at the time, sat her [my wife] down and convinced her ... 'Ma, if my brother needed a kidney, would you stop me?' And that changed her mind completely." (04:57)
Sylvia Perez on the difficulty of the donor’s choice:
"It just goes to show that it's not a simple decision." (05:49)
Dr. Michael Fels, on the moment after surgery:
"Everything's perfectly normal, everything's fine. And that's when I really lost it." (29:50)
Brian Barry reflecting on being a recipient:
"Somebody had lost a family member. That's a heavy thing. But ... we had two transplant teams give up their day for Thanksgiving to come in and start doing these surgeries." (41:07)
This episode of Rotary Voices is a moving collection of first-hand stories exposing the complexities, fears, advocacy needs, and hope surrounding organ donation. It highlights how one committed advocate like Anil can change laws and lives, how communal support and “asking everyone you know” can find a donor, and how being a recipient means living—and giving thanks—every day. As the host remarks in the closing, organ donation is not a miracle; it is a gift, one built on the convergence of tragedy and hope, advocacy and generosity.
To learn more, get involved, or seek support on organ donation, visit: https://rotary.org