Follow up conversation with Julie
I had a second conversation in April of 2024 with Julie about my kidney donation. Please listen or read below!
AI Summary of Unny and Julie's Conversation about Kidney Donation
This conversation is between Unny, who recently donated a kidney, and Julie, a friend of Unny's. Unny talks about his experience before, during, and after the donation, with a focus on the challenges he faced during recovery. They also discuss the concept of generosity and the impact of Unny's decision to be public about his donation.
Key Points
Before the Donation: Unny's reasons for donating a kidney were his desire to be anonymously generous and help someone in need.
Surgery and Early Recovery: Unny experienced some complications after surgery, including difficulty urinating and needing catheters.
Challenges of Recovery: Unny struggled with pain, inability to be physically active, and emotional distress. He talks about the importance of patience and acceptance during recovery.
Benefits of Public Sharing: Unny found it helpful to be public about his donation experience to get support from his community and to process his own thoughts and feelings.
Value of Anonymity: Unny acknowledges the potential drawbacks of being so public about his donation, such as the risk of seeking validation from others. He also recognizes the value of anonymous generosity.
Hopes for the Recipient: Unny hopes the recipient feels no burden of debt and is inspired to cultivate generosity in their own life.
Gratitude for Care: Unny expresses his deep appreciation for the care and support he received from his friends and family during recovery.
Also, the transcript is below.
Minor edits were made for clarity and ease of reading
Unny: Hey, Julie, thank you so much for talking to me again about my kidney donation. We had that conversation last fall. And I'm looking forward to this follow up conversation that we're doing after I've donated my kidney.
Julie: Yeah, I'm so excited to have this conversation. The last one was so thought provoking. And now we actually have something to talk about. Whereas before, it was all theoretical, and perspective. And I feel like now, there's just a lot more to dig into.
Unny: I'm glad that I had all that conversation, because doing all the preparation work was definitely helpful. I know that now. And so I'm really grateful for the work I did, including talking to you.
Julie: Oh, 100%. I feel like there was so much to think through at that point. But it's just kind of a different reflective conversation now.
Unny: Yeah.
Julie: Cool. Well, let's dig into some questions! Excited to hear about your experience. Tell us about your recovery. Are you recovered at this point? And is that why you decided to have this conversation now, because you feel like this is behind you, that you've recovered? Yeah, just curious about the whole, where you're at with the recovery.
Unny: Let’s get into it a little bit later what the whole recovery process was like, or something a little bit more about that. But as for what the current status is, I feel mostly recovered. The challenges that I've had are no longer present, the basic thing of the incision pain and the healing of the wound - that is like 99% done, 99% healed. Occasionally hurts a little bit or something, but nothing is an obstacle for me living my day to day life, including being very physically active.
And also, I'm well into the period where I just plan things in life, like life as usual. And then, as I was mentioning, I'm physically active. I've been running and biking regularly for the last couple of months, and I'm regaining my fitness and I'm still working on that. Today, I have a sore ankle, nothing to do with the kidney donation. And so I'm a little irritated that I think I need to take some time off of running and be a little bit more idle, which is hard for me. But it's notable when I'm talking to you that that's my physical concern in the moment, nothing to do with the kidney donation.
Julie: Well, that's exactly what I was thinking of. I'm sorry, first of all, that you're having the ankle issue, but the fact that that was what you brought up, is oh, this kidney recovery seems to have made a lot of progress, you must be in a pretty good place, if that's what's on your mind.
Tell us a little bit more about what the experience of the donation was like, some people may not have listened to our previous conversation. So maybe you can kind of take us back about how, just in brief, how this got started. And then what the actual donation experience was like for you.
Unny: Like how it got started, the whole thing from the very beginning?
Julie: I mean, we only have a few hours.
{laughter}
Julie: Maybe just to give a short recap of why you were doing this for folks who maybe are newer to kidney donation.
Unny: That's kind of nice to talk about, because I think that my reasons have changed slightly after I gave versus before. So I'll tell you about the before, and remind me to ask about the after. And then maybe I can talk about what it was like, starting on the day of surgery, because I didn't, that's kind of a gap of time. There's all the stuff before and it's just conceptual. And then there's the actual experience of it.
Well, I really liked the idea of being generous and being generous in ways that can't be reciprocated, and being generous in an anonymous way. And there's a real significant need for kidneys. And people have poor quality of life without a kidney that they need. And they also live a shorter amount of time. And it's relatively not very risky. So putting all that together. Oh, and of course, I have good health and putting all that together, it seemed to make sense to donate my kidney.
Julie: Okay, so those were the reasons before.
Unny: Yeah.
Julie: Do you wanna talk about the process now or the reasons after?
Unny: Let's talk about the reasons after.
Julie: Okay, that sounds good.
Unny: And we’ll get back to the process. I think the big thing was that the recovery at the beginning was extremely challenging. And, both because there were some complications, but also just simply the combination of pain and having to be relatively physically idle. And I just noticed the intimacy of experience, but just like how it's really, a bodily experience.
Julie: Yeah.
Unny: And that's really great. That's a really, really amazing and interesting thing to do. And there's a kind of vulnerability that goes along with that, that I feel like, it's really valuable for me to delve into that, both the experience and also, conceptually to think about that. And, that's not how I phrased it before, I don't think. But now, after having experiences, like, oh, this is what I noticed. And, because it was so difficult as well…it’s also, it was really…{pause}
I feel now I think about it like there's some risk of real discomfort. I knew that there's some risk that there's going to be challenges. And some challenges did come up. And I liked the idea of taking risks, and not risks that are likely to be a long term health issue or death. Those could be fine to take risks on those as well, but risks of just facing a lot of discomfort.
And so, I'm enthusiastic about kidney donation I think. We can talk more about that. But, for myself, I think I am. Because those are the kind of things that I like the idea of challenging myself with.
Julie: Yeah, definitely from hearing a little bit about your experience, it seemed like it would have spurred some real personal growth or even spiritual growth, maybe just by not having, so little control over the experience. And it seemed also, in some ways, even though you did choose it, you were sort of thrown into it in a way you didn't expect. It seemed like it was more uncomfortable, more difficult than you had anticipated. And I feel like being thrown into that would certainly spur vulnerability, growth, etc.
Unny: Yeah. It just really tested my patience. And my comfort with my body.
Julie: I'm curious, too, with your kind of shifting what you've learned, or what the outcomes have been of this. It's been interesting for me following along. I know you mentioned the goal of inspiring generosity. And I think, from what I've gathered, a lot of people have been super inspired, and just, humbled to be your friend through the process, and really have seen this act as quite heroic.
And as someone personally who of course, wants to be more generous in my life, but, struggles with that sometimes, I think some of watching your experience provoked some questions for me. What are some of the drawbacks of generosity? In what ways is generosity really hard? Or, difficult, of course, and that's what makes it so meaningful is that it is difficult. But I think you experienced a lot of suffering, and you were very transparent and vulnerable with your community about that. But I think it raised questions for me about kidney donation.
This is no joke. This is really, really hard. And there's a lot of suffering involved. And it sounds like at this point, you feel like that was worth it. Maybe? I don't know, that's a question. But I guess I'm also just curious about the strategy behind your transparency of cultivating community versus inspiring generosity. Because I imagine there may be some other people out there like me who are, that sounds really hard and scary. And I don't know that I want to do that.
Unny: I don't know that what I've done has inspired generosity. {laughter} Because I've been so open about how difficult it was.
Julie: Was that intentional?
Unny: It was very much intentional. As you know, our conversation before, everything I've written about my kidney donation that was very transparent about the whole process for months before, it seemed to make sense to continue that afterward.
Julie: That seemed to be your plan, to be in touch with your community.
Unny: That was generally the plan. But I also didn't think it through. And so, I don't have any doubt about saying things that make kidney donation seem difficult because I want to be open. In fact, I think that what may have been the most important conversation I had before the kidney donation was with a friend who donated a kidney, who had an extremely painful experience.
And, he told me that he had mixed feelings about telling me this because he was enthusiastic about kidney donation, but it was so painful for him. And he recovered fine. And I thanked him then - I want transparency, I just want to know what people experience and I reflect upon that when I was in the worst part of my recovery. Well, I heard that, that that's a possibility.
Julie: But you had also heard from a number of people, correct me if I'm wrong, who said it wasn't that bad. And so from that vantage, it is understandable that you were still surprised, right, by how difficult it was because you hadn't gotten an overwhelming majority saying, wow that was miserable.
Unny: Yeah, well, this is what I think I learned in this process. I can see how this was hard for me to do. But if my attitude had been different going in than what it was, I think things would have went better. And that's when I would advise anybody in my place, especially if you're like me thinking I'm a healthy person, I will likely recover quickly. If I had flipped the way I thought about it, and thought, well, donating a kidney is a really difficult thing to do, it'll probably take two months to recover. I can expect, for two months, things to be challenging, and if it goes better, great, but I had it the other way around. I bet I'll recover really quickly from this. And when I didn't? It was hard.
Julie: Well, exactly. And I think that's what, among the many ways that this has been informative for me, and just as a bystander, I think, if I was going to do something that was hugely generous, I would be cautious about it. Because I think there's your experience, just as a bystander for me, kind of introduced me to, wow, there's just so much you don't know when you do something big. But it sounds like that it hasn't necessarily had that impact on you. It sounds like acting generously and making considerable acts of generosity is still a priority, and something that's important to you. And you're not necessarily more cautious about that than before.
Unny: Yeah, I don't think I am. I noticed that when people talked about donating kidneys, they're like, wow, that's so incredibly generous. And then after it was so challenging, I thought, oh, now I see what they mean.
Julie: Right.
Unny: And I have this suspicion that many of the people who said that knew more about kidney donation than I did. And major surgery, which I had never done before. It's hard to put a blanket statement on it, but yeah, everything feels value aligned. It's extremely difficult, uncomfortable, challenging, and hopefully did some good in the world. So yeah, I definitely want to do that again.
Julie: Yeah. No, not discouraging generosity here. But I was just curious, how it shaped your approach to generosity.
Unny: Yeah. Not discouraging generosity. Right. But what lengths?
Julie: Yeah, right. What lengths?
Unny: What lengths are reasonable to go? Do you like that word? What lengths are reasonable to go to what or what lengths are aligned? Aligned, is a better word, right? Aligned with my deepest, highest values to go. And that's not an easy thing to simply determine or put a blanket statement on. I don't really feel like donating any more organs in the future. I want something different.
But yeah, I am curious about doing other things that I wouldn't say are like this because I don't think there's anything quite like it, but conceptually they're aligned in that this is uncomfortable. Uncomfortable, intimate. Risky isn't quite the right word.
Julie: And towards a growth zone, I think.
And I also do just want to point out, for what you were saying about people who knew more about it than you. The person who I know who has been most blown away by this is my dad, who was a physician for many years. And I would say now, the more I think about it, I think the people who have responded the most strongly have medical experiences, personal or professional. And those who have responded maybe less strongly have often not. That's not 100% down the line. But that's striking to me. And I think, for me, as someone who hasn't had a lot of medical experiences, I can't fully wrap my head around what you've been through.
Unny: Yeah, absolutely, actually, I could have told this even before the donation if I didn't say it was that the group of people that often had the most positive response to my donating a kidney were medical professionals. And maybe that positivity is partly because they see the results of people not getting a kidney, but maybe it's also positive, because they're like, wow, you're really generous.
Julie: They know what you're going through.
Unny: They understand that better than I did. And I don't think that piece of it, I think I'm just figuring this out now, I don't think that piece of it was part of the reason why they were saying that.
Julie: Very interesting.
Unny: But I feel I should briefly touch on the challenges. I posted extensively on my blog, but we don't have to go into detail, especially because if you want, you can read about it there. But just briefly, there was incision pain, which is the expected thing and the lack of being able to be physically active. And that also, that was predictable. And I knew that would be very challenging for me, because I'm used to being very, very active, and using physical activity to facilitate my mental balance.
But the complication that came up was I had difficulty urinating and so I had to use catheters. So you can look up catheters and figure out what that's about, if you don't know about that. But that lasted for approximately a month.
Julie: That's a long time.
Unny: Yeah, I had just an incredible amount of anguish around that, and fear. And it just really brought up difficult things. And then the last symptoms I had were some issues around food and not being able to feel satiated. And that happened to varying degrees. Then it was only a month after that, I started experiencing that. And that was sometimes distressing, where I would keep eating but not feel hungry.
But all these problems, time just solved, I didn't really have to do a lot in the end.
Julie: And about the first one of the catheter and the fear that you had around that, which sounds more serious or more concerning to you than with the factor of feeding and satiation. I guess I'm curious what the fear was around. Was it around the pain? Or was it around your recovery path? Can you say a little bit more about that experience?
Unny: It's just the catheters are invasive, right? Yeah, simple thing. That they're invasive and that was really scary for me. And then the uncertainty about oh, am I going to be able to urinate again, by myself or something like that, right? What's the future here? Will I have to do this forever, or what's happening? And not really ever fully understanding that, of why that is happening? And when is it going to end, and what do I have to do? But the invasive nature of that was really difficult. And that wasn't painful.
Julie: Did you feel like if that had continued for longer either of those issues, did you feel prepared for that outcome? Did you feel like you bargained for that? Or was there some expectation? So few people have difficult long term complications or problems from a kidney donation. I'm just curious how much you expected your recovery to be pretty straightforward.
Unny: I think I alluded to this before, actually, let me just edit what I said before: it actually was painful. Just not very painful. It wasn’t the primary problem but sometimes I forget about some of the challenges. Well, I think when I said earlier I wish I had just expected, okay, two months, everything is going to be hard. And then after that, it'd be okay. If I had that kind of attitude, maybe this wouldn't have been so difficult. But I didn't have that attitude. Sorry, I think I'm forgetting your question.
Julie: Just around, if you were prepared for the outcome of some of the more high risk situations that were unlikely, but could have transpired?
Unny: I don't think in my heart, I was prepared, because I was telling myself that this is likely, not absolutely, but I think this is likely to be quick. But I knew that complications could happen - again, that friend who said that I had this incredibly painful thing happen to me. A couple of days after the kidney donation that happened to him. And so I knew that there was a possibility of it. And yeah, I think even as it was happening, people asked me, oh this is not what you expected? Or is it what you expected? Well, I can't say it's exactly what I expected. But it's within the realm of what I thought was possible.
Julie: Right. And I also think you can't, I haven't been through major surgery, but my guess is, it's not very suitable or comforting to approach major surgery and be, well,it might be absolutely terrible. I think when you're dealing with that stretch of stress, it's probably more appropriate to think in most cases, it'll probably be fine in a month or so. Or, it probably won't be that bad. That's just, I think, a reasonable self-soothing technique for any stressful medical event coming up. So it would be reasonable that you might have focused more on that if you did, but it sounds like you also were aware and considering the other possible outcomes.
Unny: I think that, I remember one time, I was about to start a job, and I was telling myself, Oh, my God, this job is just gonna be horrible, it's going to be incredibly difficult. And guess what, it went really poorly.
But then, going to the other end of, oh, everything's gonna be…that job, I think a lot of people would consider it a challenging job. And I think that there's a middle ground here of not thinking it's going to be extremely difficult or, and not thinking it's going to be easy, but somewhere in the middle is okay. But this comes to that patience thing. I just, really had to find it myself a new level of patience, and acceptance, you know?
Julie: So did you want to add anything about the donation day itself or the subsequent days and what that was like? I suppose people can also refer to your blog and whatnot for details on that. But is there anything you wanted to highlight?
Unny: I'll just say briefly about it, that the donation day itself, I was very grateful that my friend Matt brought me to the hospital, and he had donated his kidney the year before. And he stayed with me as long as he could before surgery. I was very nervous. I think I contemplated death in a way I've never have before. Not for a very long time. But that happened. And when I came out of surgery, I felt okay. I was tired, I remember going in and out asleep a little bit, and people were visiting. And I just had subconsciousness. And then I think I was thinking, oh, this isn't so bad. But the drugs wore off and then it started getting bad a couple of days later.
And a couple days later, and then the urinary problems started almost immediately. So that became a problem. And then I started experiencing more pain. And there was some time around that I was in the hospital, and I really felt a depth of despair. But reflecting on it now, I think, the surgeon did say to me, the first week of recovery is just really hard. Which was nice to hear.
Julie: It's interesting, I think this just reinforces the point we're making about medical people too, because on the first day, when you shared with your community about how you were feeling you were feeling really good. I was like, woohoo, all good. And then a couple days later, when you were, this is really miserable. I was, oh,my gosh, I was so surprised because I don't know much about this. And I mentioned it to my mom because she was asking about you. And she was, yep, that's about right. Like you, in a lot of major surgeries, you feel great that first day when you have the drugs, a couple days later, it really hits you. And that's when it's a lot harder. And I didn't even know that. So I think it follows the course of what's normal. But for those of us with less experience, even including you to some extent, I'm sure it could be a little bit surprising.
Unny: And your mom is a medical professional, as a nurse.
Julie: Yeah. Sorry, I didn't mention that. But one question that I'm really dying to ask, so I might just jump into this, is about the recipient. We talked about this before. But I'm curious where you ended up landing with if you wanted to be in touch with them? And just your hopes for them as well.
Unny: I think that the only reason why I struggle with this even a little bit is because it's really my usual way of living is to want to connect with all kinds of people, whatever it is that we have in common or life experiences. But I always with this communication thought well, it's going to be anonymous, I don't plan on being in touch. And I still feel the same. I don't plan on being in touch with the recipient. I believe they told me briefly, orally, so I don't have great documentation of it, which is totally fine, that the recipient was a man in his 60s in Maryland. I do know that the surgery went well.
Julie: Oh, good.
Unny: And now I've told you everything that I know.
{laughter}
I think I feel great about doing this in an anonymous way. It's good to do different things in life. This is different in so many ways. And this will be another way. I thought maybe somewhat jokingly that a month or two after maybe even now, if I met the recipient, I wouldn't want to tell them how much I suffered. And I say that jokingly because I think that's an absolutely horrible idea.
It's better that I don't talk to them, because they don't need to carry that burden. That's not going to help anything, I want to help reduce suffering, to improve somebody's life.
Julie: So why was it important to you? So it was important to you that it'd be an anonymous gift. It sounds like that kind of has become something you value – anonymous generosity. And you mentioned that at the beginning, too. But you've also been very public about it in a very non-anonymous way. What's the kind of thought process on that, the value of being very public yet anonymous at the same time?
Unny: Yeah, that's complicated. I think one of the reasons that I like being public about it is because I wanted people to support me. And because I wanted help, and it was also in this conversation, the conversation last fall is a great example of this, it was a way for me to process and engage and think about it. Just for my own journey, I thought it would be helpful. And I think it has been helpful for me to discover the meaning in what I'm doing, learn and get tips from other people. And that's just happened a ton.
But I want to get back to some of the questions that you're asking about anonymity versus being public. But one of the key things that I'm really grateful for that went really fantastic and was really meaningful is getting all the help that I needed. I was wondering, leading up to the donation, if I needed as much help as I was asking. And somebody said to me, well, it's always good to have more than you need and say, no. And turn people away. And so I said, okay, fine, I'll do that. I'll ask for all this help. I had the spreadsheet and people signed up for all these shifts to visit. While I feel like I needed all the help, and I stayed at my cousin's house for three weeks, which was absolutely fantastic. He was incredibly helpful, and him and his wife, they cooked all my food, they took care of all my physical needs. But they're busy people, they both work full time and have a toddler. And so friends visited primarily to give me social and emotional support. And, because of the complications I had, I really, really, really needed that. And I feel like it was critical for my recovery not going worse or going as well as it did. So I'm really glad I did that.
And I think that, if it was obvious, there was going to be some primary caretaker that would meet most of my needs, in all respects. Even still, I think this was actually a good idea because I don't know, they would need breaks and it's good for me to have variety and a lot of things. And I had a friend who is a physical therapist and had ideas about exercises for me to do and checked in on me multiple times. And I talked to medical professional friends, doctors that gave me a lot of guidance and support. And yeah, there's just all kinds of people. And that was enabled by being very public about this. Now. Okay, so back to the question about the anonymity versus being public about it. Right, so I'm not anonymous in that way. Gosh there must be 1000 people who know. {laughter}
Well, I can see the value of being a lot quieter about this. And I think that some, if not several of the people that I know, who donated kidneys anonymously, they told very few people, and, they have that benefit of, maybe it's easier for them to see that they're not doing this out of recognition,for the recognition, for the validation from people. And I think that's really valuable. And I guess that's a risk that I take when I am public like this, that I'm that I'm going to be influenced by, and I'm getting this benefit that other people think I'm okay, I'm a good person. And that's why I benefit from this rather than being thoughtful about what's meaningful to me. So there's a risk there.
Julie: Yeah, that's interesting. Did you touch on what your hopes are for the recipient?
Unny: Oh, I haven't touched on that. Just that the person has good help. And I think that I can imagine a recipient might feel like a burden of debt, especially if it goes well, maybe that they owe something to me. Or they might feel how can they repay that, and especially, when it's anonymous, and they're not going to be in touch with me.
And I want to encourage them to release that. And too, the idea of a gift like this is a pay it forward kind of thing, and cultivate in a healthy, non-guilty kind of way, an attitude of generosity themselves that feels aligned with their values. I think everybody has generosity within them.
Julie: Some more than others. And they just need to cultivate it. Right? Well, if you don't start with a kidney donation, maybe down the road.
And also, just hopping back to the expression of gratitude for the care you received.
What was that experience like? If you have anything else to share about it, because for me, it feels, having in many ways had a very privileged life, experience and care as an adult, I don't have a lot of experience with that in a in-depth sense. Of course, people are showing care all the time, but not in this kind of concentrated way, the way you experienced it. So I'm curious how that was for you. And if you've ever had that in adulthood before.
Unny: Yeah, I haven't, not like this. No. And, of course, it's just really humbling. Like I said, I needed so much of that help. And that was leaning on people heavily, especially for emotional and spiritual support. In addition to the visitors, I was calling, texting, emailing. I'm just in touch with a lot of people asking for help and advice and encouragement. And it's really, it's really humbling. And it gives me a lot of gratitude for the community that I have and their willingness to step up.
Julie: Absolutely. And what's interesting to me is that it sounded like, wow, every bit of support that you got you needed. And yet, you are one of the best connected people that I know. You have a ton of acquaintances and friends and you have a large family, at least compared to my family. And so it just shows how valuable community can be. But also, I think for me, it makes me think about how few people have that.
Unny: I’ll also say I was not shy about asking for help. I would ask everybody. I did say no to people under some circumstances where it didn't feel right. And I think that probably was a good decision, mostly because I needed so much emotional support. It wasn't just a physical thing. And I was very open about what my needs are, I communicated that in the blog, and I had a party and email lists and all this stuff, and asking people for help. And I'm glad that I asked for that. And I had noted, a lot of times, it was said before about what feels like a contradiction of doing something that is generous, but it feels in a funny way, really selfish. Because I'm asking so many people, I’m drawing so much attention to myself. And then asking people to help me all the time.
Julie: That's tricky.
Unny: I think, yeah it's tricky. But some people are, they're gonna support me no matter what, even if they're opposed to what I'm doing. But I think a lot of people think that kidney donation is a good thing, too. And so they want to support that as well. Of course, people's own support of me itself is probably as complicated as this whole question is.
Julie: And, you did mention at one point months ago, that you really felt like a part of all this was made possible by community, that people supporting you were also just supporting this act, and you being able to do this. Because if you didn't necessarily have this level of encouragement and logistical support, it might have been more difficult or less likely that everything would have transpired the way it transpired. So support is, it sounds like it's been really crucial to you and making this generous act happen.
Unny: Yeah, so I think I want to encourage listeners to ask people to help them out.
Julie: Oh, 100%. I feel like you've been a great model of that. Because that's so hard for so many people in our society to do. And you not only did it, but you did it on a marquee and headlights. Very public.
{laughter}
And especially I think, coming from a man, it almost means more from someone who identifies as male, I just feel there is this gendered history and stereotype that we have, that that's not okay for men to do. So I feel like it's almost more powerful coming from you.
Unny: Thanks.
Julie: Yeah, of course. You had mentioned a little bit ago, your family that you had stayed with. And I'm curious, just in general, about how their attitude was towards this process and how it affected your relationship. And more specifically, although I don't think she was a primary caretaker necessarily, your mom. Because I know you had some difficult conversations leading up to the donation.
Unny: Yeah, I probably won't go into this in too much depth here.
Julie: Oh, yeah. No problem.
Unny: Hi, Mom, if you're listening. In general, my family was enthusiastic and helpful. And one of my uncles, who's retired, drove me to various locations and medical appointments and such. And as I mentioned, the cousin that I stayed with provided all my physical care for the first three weeks, which by the time I left there, I was able to take care of myself, my physical needs, for the most part. That's not true. I still had lifting restrictions. So I needed some help, but a lot less. I could walk around and prepare foods and such.
Yeah, family's great. My mom, it was really challenging for her. I think that she didn't want to see me suffer. And I did suffer a lot. And I was very open about it. So she knows what happened, and she knew it as it was happening too. I talked to her in the hospital. She was in India at the time that I donated, but I talked to her while I was still in the hospital. And actually maybe at that point, it was okay. But anyway, the point is that she was part of the conversation and the group chat that I had, where I was talking about how things were going for me. And I don't know what to say about that. I think that we’re able to talk about things and I don't feel a huge place of tension between us.
Julie: That's good. Changing gears a little bit, how do you think that this whole experience will change how you lead your life? You've talked a little bit about some of the lessons you learned, and maybe there's more you'd like to share. But what ways do you see this experience shaping you moving forward?
Unny: Well, besides that kind of curiosity about what other things that I can do that are risking a lot of discomfort and are really generous, I am also drawn to caretaking. And I'm curious about that.
Having received so much care, and not having done much of it in my life – my parents so far have been in good health, I don't have children or companion animals, and I’ve just been somebody who's not caring for other people. And this whole experience was so intimate. And when people are doing a lot of the care work for me, there’s a lot of conversations where we're talking about things that are really hard for me, and it was a really special way to connect with people. And I think in care work, there's opportunity for that. And so I'm curious about that.
I always say I'm curious about that, because I'm afraid of all of a sudden committing myself to a lot more responsibility than I don't know that I'm really ready for.
And the other thing that I've thought about sometimes is that as an activist and organizer, and somebody that has spent my whole life trying to change systems of oppression. And, a lot of times the question that I'm asking myself with that kind of change-making is where are the connections and bridges that make it possible for more change to happen? That could be connections between different movements or connections between say the use of humor and activism or something. Or the connection of sports and athletic things and activism.
And here, what I wonder about after doing this is, what's the connection of doing something that's really intimate, risking discomfort, doing a kind of personal act that's like that, and connect that with the kind of activism and systems change that I'm trying to make?
I know what I'm saying is a little abstract. And that's because I don't know what that looks like. But I imagine, maybe my mom doesn't want to hear this as well. But, placing myself in front of slaughterhouse machinery or something like that.
Julie: Well, it's interesting, because when you raise the question, my first feeling was that it's already intertwined, because when you're challenging systems of oppression, you're often asking people to change the way they're living or to give up certain privileges that they have. And that's, I think, inherently difficult and uncomfortable.
But I think what you're saying takes it to a whole new level of maybe unreasonableness, we might say, and I mean that in the best possible sense, of just really calling attention to something through more, for lack of a better term, more radical acts.
But what's fascinating to me is that the discomfort that you experienced, which just seemed so hard, has made you want to have more discomfort, and see how you can weave that into your activism and other elements of your life. I thought you might be running in the other direction.
Unny: Well, I wouldn't say it made me want more discomfort. It's more like I recognize that what I did is in alignment, so I might do that again.
Julie: That's interesting. No, I think those are really powerful lessons.
Unny: Well, I want to ask you a question too Julie, about that unreasonable thing. So we're kind of laughing about this because Julie had mentioned this idea of giving unreasonable things and I think you had read a book about this, right?
Julie: Yeah. Unreasonable Hospitality. Highly recommended.
Unny: And even as I saw that, I thought, oh, yeah, this probably qualifies for the kind of unreasonable thing that Julie might think of.
Julie: Yes, 100%
Unny: So I was already enthusiastic about helping you find the unreasonable things that you want to do.
Julie: It's hard.
Unny: Have you done some unreasonable things since reading the book?
Julie: I am not sure that I have in the way that I want to. Because I feel like your kidney donation, that's really unreasonable. And there's something that inspires and calls attention when you do the unreasonable. And I feel like that's why your goal of inspiring generous acts made a lot of sense to me, because if I go around, I say, hey, I want people to act generously, that's really ineffective. If I do something that everybody is looking at, and asking questions about and wanting to engage with, that might really help people internalize the message that I'm trying to communicate. But the problem is, a lot of things that are unreasonable are extremely uncomfortable, like we've talked about, difficult or inaccessible. And they often, maybe less so with kidney donations, but they often require a great deal of creativity. So I just find myself often being, geez, when can I set aside three hours to think about how I can be unreasonable? It's not something that fits really neatly and seamlessly I think into my life, but that I do want to prioritize more. And I feel like so far, I have not done a great job of being unreasonable.
Unny: Yeah, I think it sounds like even the process of thinking about doing something unreasonable itself seems to take some unreasonableness.
Julie: Right. Because I don't think being unreasonable is intuitive. And I feel maybe once you start, it could get a little bit easier. I think about in the book that I read within the context of a fancy restaurant, I'd shared the example that they have in the book of someone comes in, a family comes in, it was a couple actually, they had a vacation canceled, it was their honeymoon, and they were going go to a tropical location. But then they couldn't go and they went to this restaurant instead. So the people the restaurant, the employees filled a room with sand, they added beach umbrellas, they added a kiddie pool, they brought out mai tais, it was just incredible creativity. And then they did that all the time. Not that same thing. But different varieties – a family that came in and loved Christmas, and was having to miss Christmas with their family. And they staged a whole Christmas display at their table. I feel like once you get a taste of the unreasonableness in the context of your life, you probably build that muscle a little bit and start getting better at it. So I just feel like I need a few initial experiences to get me off the ground. And then I might be rolling. Who knows.
Unny: So maybe I've built my muscle.
Julie: I think you have. I really think this was a huge way to build your muscle.
Unny: Well, okay, anybody who's listening to this, happy to hear your thoughts about other unreasonable things that we can do, acts of generosity that are really uncomfortable, both for Julie and myself, of course.
Julie: Absolutely. Totally open to those ideas.
So, looking big picture. Where do you stand on kidney donation now? You kind of mentioned a little bit about this, but would you advocate for it? If you could give another organ, would you? Where are you at with kidney donation?
Unny: I was grumpy this morning, Julie, I think if you asked me then I probably would have said, gosh, kidney donation that's hard and kind of terrible.
But I'm in a better mood now.
Julie: Good.
Unny: So I would probably say, yeah, I think that it's a good idea to donate a kidney. So very much, everybody has to do their own reflections and thoughts about what's valuable to them to decide if they want to do that.
But I think the pieces that I said, that really make sense to me, and made sense to me before I even donated a kidney, and the kind of the intimacy piece and the things I've learned after the fact – all of that was part of how I conceptualized my life before this. And so donating a kidney fits with that. And so in that way, I think that it's a great idea, and for somebody who thinks the way I do. Of course, people can think a lot of different ways and about what is meaningful for them. Maybe there's other reasons or ways of looking at it that would make donating a kidney a wise choice.
But there’s the basic facts of the real significant need and the relatively low risk. I think it's a really good idea. I think that one thing we can talk about Julie is that there's around 100,000 people in the US waiting for kidneys. And many of them will die waiting for that. And so there's a proposal to pay people to donate kidneys. And I'm not sure what I think about that. But this is an interesting idea.
Julie: Do you think you would have done it if there had been financial compensation involved?
Unny: Gosh, if you ask that question, yeah, I would have done it without financial compensation. So why not do it with?
Julie: Well, sometimes they say that when you offer financial compensation for something, people, I'm trying to remember where this example comes from. But there was some sort of donation type thing, where if that was offered, people became less likely to actually do it. Because it wasn't about the financial compensation. It was about the feeling, it was about who you feel like you are doing that. So I think that's part of where my question comes from. I wish I had more details about that particular example. But so much of what you were doing was motivated by goodness, wanting to contribute positively in the world and grow and do something generous. So it becomes less generous, arguably, when there's financial compensation.
Unny: Absolutely, yeah. I think when the question comes up, what comes to mind for me is, I would have liked to have a better understanding of the risks and rewards of kidney donation. And I think that, I did a lot of research and I talked to a lot of people. So I feel, for a layperson, relatively well informed about kidney donation. For a lay non medical person who is just looking at things, I spent over a year doing research before donating my kidney, and it seemed really difficult to find out some of this basic information. And I think that there could be much better public education about risks and rewards.
And some of the rewards, some of the basic things that I now know about the benefits of doing kidney donation and why there's such a need, I didn't learn until months after doing some research. But then also, the risks. And actually, my problems, like the urinary problems, are really common, I think. Because after the surgery, the folks who were in the hospital where I was recovering, and a lot of medical professionals were like, oh, yeah, this is just a really common thing. I think it was really unusual for it to last that long. But I wish that somebody had told me all about catheters before I donated. I think a whole lot more could be done there.
And it would cost a lot more money to pay people to donate kidneys – I think there was one proposal to pay people $50,000 as a tax credit over some years – but that money can also be spent in other ways. And I think that doing more education about kidney donation, maybe more people will give and also, I'd feel better if people who are either considering donating a kidney or are donating a kidney are just really well informed. And then, it'll be done with more integrity.
And maybe that's something that happens before we start paying people for kidneys. Because then we know that the process has more integrity. I have some criticisms for the whole medical thing that I've been through. I think that process could have taught me, they could have told me more things. They could have educated more thoroughly, I think.
Julie: Well that I think that connects kind of nicely with a question that your friend Dina had offered for us and I had also heard this question from another friend. Which is what do you now know, that wish you had known before you began the journey?
Unny: Yeah, I've hit on it, some of these medical complications, what they're like and what the experience is like. And then I think that, this isn't a piece of knowledge, but just a frame in which I thought about communication. I wish I had thought about it as that the recovery is likely to be challenging and take a couple of months. And if it goes better, great, rather than the other way where I thought this will probably go really quickly.
And I don't know what my odds were exactly, it's hard to quantify that, right? So I don't know, but I suspect the statistics would show that somebody of my health background is likely to recover quickly. But still, that attitude I had was not helpful.
Julie: Is there anything that you would have done differently in this process and the way that you've gone about learning and sharing about it both before and after?
Unny: I don't, I feel pretty good about my learning process. Like I said, I think I could have known more. But even today, I don't know where there is a good place that has the information that I'm looking for. And I've looked on a lot of websites, I've read a book and all these podcasts and, so, no, it's actually, it's nice to feel like I don't have a lot of regret in that process. Yeah, I think I did well.
I think that it would have been nice to take more time off work. And the reason I went back to work as soon as I did is because I work a remote job on a desk. And that was a very easy thing to do, even when I wasn't totally physically well, but dealing with the mental anguish, as well as navigating the medical system and figuring out what was going on with me. I could have used some more time for that.
I also went to work because I like my work, and it's meaningful to me. I think if I didn't go to work, I would have had to continue to work hard at doing other meaningful things or connect with people. Which I did a lot. But I would have needed to do that a whole lot.
Julie: And you're happy with the amount of support that you requested and received and the way that you publicly shared about your journey?
Unny: Oh, absolutely. Yeah, I'm very happy with the level of support. And so many people said, and I believe would have helped me more if I needed it. And because I'm so enthusiastic about asking for help, anybody who said, that I had a good feeling about, I would be, oh, yeah, of course, I want your help. And I want to receive that. And, there was just a lot more people that I could have followed up with if I needed that.
Julie: That's great. Well, I just want to ask one or two more questions, and then maybe if there's anything else we didn't touch on, you can offer some comments on anything else we missed. But I had shared that question from Dina. Dina Myler, thank you for sharing that question. And I wanted to also include a question that came in from your friend Jeff Pinzino, about how your gift inspired the people around you. And I might just add to that question and say, or affect other people, it might not have always been inspirational, although I think in many cases it was. But in what ways did your gift inspire or affect the people in your life?
Unny: That reminds me, just a few weeks ago, I saw a friend who is considering donating her kidney, that I think was somewhat or significantly influenced by me.
Julie: Oh, wow. That’s so cool.
Unny: Yeah, I think I'll try to touch base with her again and see where she is in that process. But I don't know, besides her I can't think of anybody who has said that they are going to do anything, or seriously considering it. Actually, this reminds me there are some people that I said I would talk to after I donated a kidney and I think I should move back to that and of course, I could share this recording with them and such. But so many people, so many people said how inspiring they thought what I was doing and they were really so happy to witness what I did and feel part of it by helping me out.
That was the norm and a lot of people were helping me out, but then just friends, acquaintances, people that however I needed…because I talk about it really openly, right? So if I'm in touch with anybody, for whatever reason, I say okay, this is my situation right now –I wasn't very mobile for a couple of months. And so it would just come up a lot, and so many people would say positive things. I think that there's a lot of good potential there.
Julie: That's really affirming. And so cool. And even though the donation and the biggest sharing of your, for lack of a better term, campaign is over, I think you'll continue to probably be a resource. People will know this about you, learn this about you on more of a rolling basis moving forward. And that could also inspire people to make a donation or do a generous act, even years down the road. So it's impossible to really know the impacts of the gift.
And even last time we talked, when we talked about the possible implications of a kidney donation, we or at least I specifically failed to think of the many ways in which it affects just one person's life. In the same way that the many ways you could kind of inspire acts of generosity, we had talked about just affecting the one person who receives the kidney, but in reality one of your friends have pointed out, oh it goes way beyond that. It's also about the people who are providing care for that person. Maybe they're giving rides for that person. They're just so many other ways that a kidney affects someone's life and those around them. And in the same way, I think, your act of generosity, it's kind of hard to know how that will plant seeds and the different ways that that could take shape in people's lives.
Unny: There's something I want to say about going back to this question of, am I enthusiastic about kidney donation? And I think that I am intellectually. And I think that, because of the challenges, it's hard for me to think about the kidney donation without feeling some of that anguish. I think I still have some mourning or emotional processing to do, to continue to heal not physically, but just spiritually from the whole process. And so in that way, it's hard for me just to say, oh, yeah, I think a kidney donation is great.
And, anybody listening, take with it what you want to. And if you say, well, actually, you're not really endorsing a kidney donation, you're clearly not as enthusiastic as you said you are. I can accept and understand that interpretation of what I just said right now.
{laughter}
But there's still a lot of heaviness around it. And honestly, that's one of the reasons I'm having this conversation with you right now. This is still part of my processing around this. This is still part of my healing. And I expect that I will have more conversations with my therapist, with other friends and do other work.
Also, I want to mention, this is fresh off the press: I'm pretty sure I'm going to do a celebration party that will be on June 29. So be on the lookout for that. I'm pretty sure, we're just in the process of confirming that.
Julie: And for those who are unsure, what does a kidney donation celebration party consist of?
Unny: Of course, it is an athletic event. It's a mini sprint triathlon. And when I say mini, I'm referring to the mini sprint is a short distance triathlon, something that will take about 20 minutes.
Julie: Oh, nice.
Unny: It will happen here in South Minneapolis and then followed by a vegan potluck at the same place I did the first party, at my friend Laura's apartment building. So it'll be early in the morning for the triathlon, and then a brunch potluck.
Julie: Cool.
Unny: Of course, it's celebrating being able to do physical things, which I have so much gratitude for. I've been very regular in my exercise in the last two months. It hasn't taken a lot of conscious effort, but just being able to be physically active running and biking, I can feel it in my body just this gratitude for that ability.
Julie: Definitely, we're celebrating. And I also just wanted to mention before what you were saying about if someone were to perceive your approach towards or your thoughts on kidney donation as not being 100% enthusiastic. Personally, I feel like a lot of the exposure I've had to evolution of thinking is around going more from a black and white to a gray place. And seeing nuance and seeing the complexity in every topic.
And I think if someone were to come to you now with questions about a kidney donation, as opposed to before you donated, I feel like you just have a more complete and gray and nuanced take on it. Part of that might just be your experience of healing that you're going through. But I think also, it's just a richer knowledge with more information. And I think that can sometimes make it just not as concrete and a little bit more gray, which I personally think is often a good thing.
Unny: Yeah, absolutely. Thanks for pointing that out. I think that's really accurate. And then maybe that's not all that different than what my friend said, who said he's very enthusiastic about it. And then he sighed and said, oh, but I also had a very painful experience. There's nuance there.
Julie: And you were glad that he ultimately had shared that with you, because it did kind of prepare you mentally and in part for what you might experience.
All right. Well, I think we've covered my questions. And I just wonder if there's any other topics, questions I didn't ask that you'd like to speak to, before we wrap up?
Unny: Well, I want to encourage anybody who's listening that has questions for me or thoughts, to respond and let me know, and if it's not with me, have conversations with friends and family about this kidney donation. What you think about it, and what you feel about it.
And that reminds me, something that I have had a lot of gratitude for what's been really incredible about donating kidneys, is that I just have great conversations with people all the time. It really has given me the opportunity to have meaningful conversations about all kinds of topics. And the kind of intimate questions around vulnerability and help and generosity and other medical procedures. I've had more conversations about childbirth in last few months than I have in the rest of my life combined. It's such a regular topic that women have brought up with me, the people who have given birth have brought up with me about their experience. And that's just really incredible.
And sometimes, I think also a good reason to donate a kidney is to avoid small talk. It's easy for me, I can say just a few words like, oh, I donated a kidney, and all of a sudden, I'm having this really compelling, powerful conversation. And the conversations vary a lot. Sometimes people will say things like, oh, my sister-in-law needed a kidney and received one, and this is what the experience was like. So there's just a lot of different kinds of things, but really, really valuable, intimate, meaningful conversations.
Julie: And I'll say that has a ripple effect to people who know you, at least from my experience, because when that's come up with people I know who don't even necessarily know you, the conversations have been really interesting. And usually, let's say it somehow comes up, oh, yeah my friend who's donating a kidney or donated a kidney. I would say the most common first response is, whoa, and why? And then that conversation about generosity comes up. Because why, oh, he just wanted to do this. Obviously, there's a lot more to it. But ultimately that’s it. You didn't owe this kidney to someone. You weren't trying to help out a family member. Of course, you might have done that if the opportunity had arisen. But in this case, you were just volunteering, and it's so uncommon, and it evokes such surprise, because of its unreasonableness that I think it really lays the groundwork for good conversations even when you're not there. So who knows what great conversations you've inspired.
Unny: Wow, that's great to hear.
Julie: Anything else?
Unny: No.
Julie: All right. Well, thanks for taking the time to talk and sharing about this journey. It's just fascinating to learn about and I know so many people are appreciative of what you've done and what you've gone through and you're sharing about it. So I'm grateful to have had this conversation.
Unny: Thanks so much, Julie. Always appreciate your thoughtfulness and all of the meaningful questions that you have. This is another one of those meaningful conversations. And so I'm really grateful for your help with this.
Julie: Great, thanks Unny.