To me, it was an easy decision. It was never one that I second guessed or anything like that. As far as I was concerned, you have two kidneys, you only need one kidney. And if I could do it during my lifetime, I wanted to,
I was not aware at the time that you could be a living organ donor because I am registered to be an organ donor, when I no longer need my organs. But when I saw that you could donate an organ and live continue to live a full healthy life. They kind of tucked that away. And then the same person shared a video in March of somebody she knew who was needing a kidney, and we were the same blood type, and I didn't have any reason not to do it.
In 2019, a record number of 7400 people became living organ donors in the United States. These people donated a healthy kidney, or part of a lung or liver in order to help someone whose life was at risk due to organ failure. That is an impressive number of donors yet in the same year over 112,000 were in need of an organ transplant. This is random acts of knowledge presented by Heartland Community College. I'm Steve fast your host. Today we're going to speak with four living organ donors. Each has their own story, but none have any regrets in making the choice. We'll start with the heartland staffer who most recently made the choice to undergo the organ donation process.
I am Kelly Stogner, administrative assistant in the executive office, December 2, I was able to donate my left kidney to somebody who needed it. And that was through OSF transplant services in Peoria.
You sell your left kidneys, their preference of donating one over the
doctors get to decide which one is best for you to keep in which one is going to be best or most convenient for them to remove and give to somebody else.
How did you arrive at this decision? It's not a small one to make. How did you get there?
I say it's God's timing and connections. I know a lady who I used to work with 10 years ago, somewhere else. And she did the same thing two years ago. So I watched her through social media. And I was not aware at the time that you could be a living organ donor because I am registered to be an organ donor, when I no longer need my organs. But when I saw that you could donate an organ and live continue to live a full healthy life, I kind of tucked that away. And then the same person shared a video in March of somebody she knew who was needing a kidney, and we were the same blood type. And so I felt like it was a time that would work for me. And I didn't have any reason not to do it.
At the time we're recording this is about to a little over two weeks since you did this correct. So how are you feeling today?
I feel fantastic. I feel probably 95% I'm gonna have to be cleared from the doctor and wait another four to eight weeks for normal strenuous activity. But I can do everything except lift anything over 10 pounds, and no ab exercises, which is not a problem.
You mentioned that the doctor chose which kidney? What sort of evaluation did you have to go through to find out whether or not you would be an acceptable donor.
So in March, when I saw the video, I thought about it for a little bit, talked to some family and friends about it. And then contacted the transplant services team. And the first thing they do is just ask you a basic questionnaire to see if you're are able to continue the process of evaluation. And then they send you paperwork and you return paperwork, and then you do bloodwork and your analysis. And then after they've reviewed all that, then they do a full day evaluation with a nephrologist, and a psychologist and a financial coordinator and a dietitian. They cover all the bases, make sure you have all the information you need, and get all the information they need to see if it's really going to work for you to continue to live a healthy life after if you're approved to be a donor, also a CT scan and an extra chest X ray. So you're gonna get a full health workup at no cost to the donor.
Well, I wanted to talk a little bit about that. I think that one question. Many people probably have, I don't know, maybe they're too polite to ask it. So I'll be not as polite and ask it. But healthcare is very expensive. Just all the things you mentioned. Sounds like quite the bill, who pays for all of this, whose insurance covers it? How does it all work in that regard?
It is all paid through the recipients insurance.
So they have really good insurance. They're not only paying for them to receive the surgery to have the transplanted organ, but also to cover your health and welfare as well. Right? Yes. How many follow up appointments do you have to have How long do you have to To continue to sort of maintain that after surgery, maintenance,
they do checkups. And they do statistics that they're required to submit at six months, 12 months and 24 months. So they'll request that I returned to their office or see my physician here and have the results sent back to them. bloodwork for them to follow, make sure everything is continuing to go well.
So when you went through that intake process, where they put you through all those screenings, how long was it from the end of that process to when they scheduled the surgery,
my situation was a little different, and that that evaluation for me was the beginning of June. But through my blood work, the doctor suggested or recommended that I have iron infusions. And so I did due to my anemia, require four iron infusions that my insurance did need to pay for, because that was my personal health situation, which helped me feel amazing and fantastic. And it was great to find out that that was an option that I needed anyway. So again, you will get a good health workup. And you'll find out if there is anything at all wrong with you. So I needed the time to process those infusions. And then four weeks after that have follow up bloodwork to make sure that the numbers were good, and we're gonna still be good for me and my health in order to be a donor. And then once that processed, then all of the results from all the different physicians and parties that I mentioned, they meet twice a month, and have a board review to actually approve candidates for donation. And then once that happens, they say, you as a donor are free to up to 12 months to decide what time works best for you to donate, if you so choose to continue to donate all the way along the process. They say if at any point, you change your mind, you are not obligated to not feel guilty. And nobody will say anything bad about you just if you've decided that this is no longer than what you want to do. You let us know. But if you do want to do this, you have up to 12 months to pick a date that works for you. I chose then to meet the donor at that point to let her know that I was a match and that I was going to work with her schedule that would work for a day for both of us to be best for surgery.
What was that meeting like?
It was surprising for her, I chose to do it at her church with the lady who was a connector between the two of us. Her name is Terry. And Terry is the donor as well, I mentioned but So Terry knows the recipient, and the pastor at the recipients church. So I met with Terry and the pastor and said, Wouldn't this be great if we could announce this in front of everybody and just say that this was an answer to prayer for them. And so we scheduled that after a church service. So April was sitting there during the whole service, I was in the back of the church knowing what was gonna happen, and she did not. So at the end of the service, I went up and made the announcement that I had been approved to be a donor for her. And it was great to share that with everybody. And she was completely shocked and overwhelmed and had no idea what to expect. So because she's been on dialysis for three years nightly,
and she had been on the list, but they hadn't let her know that they'd found a match, they will
not the donor privacy is such that I could have chosen to remain anonymous if I so chose. And they would have never said anything to her about who I was they would have just said we have a donor and the donor has agreed to this date. I could have proceeded anonymously.
Have you seen her or talk to her post surgery last night we got together? How's she doing?
She's getting stronger every day. It's her recovery is a little slower than mine, because she has to get used to this new organ in her body working for her, but she's doing much better than she was before surgery.
Have you ever had any kind of surgery before this?
minor surgeries like I've had my tonsils removed? I've had oral surgery, vein surgery and my legs. That's about it.
It can be very intimidating and frightening process for anybody. Most of the time, it's not an elective for people. Right? So what was your entire approach of that? You talked a little bit about your process of coming to the decision. But when it came to the day where you're going in there, and there's the surgery, which any surgeries, they always tell you and make you sign papers is there's a risk involved, right? What was that process? Like? Are you just not fazed too much by that?
I just trusted that it was the right thing to do at the right time. And it would all work out fine. I don't have any anxiety about it or medical doctors or procedures. So I was very calm and at peace and just happy to be able to be a donor.
So what sort of things did the doctors tell you going into and coming out of the surgery about you know, this is a major change to your body? You don't necessarily need two kidneys, but you're born with two kidneys. What do the doctors say about this and how this will affect you and your body? And I'm sure they give you a list like anytime of things that you can and can't do for a while
right. The highest point I think that I took away from it is that I'm no longer supposed to take And Sade's non steroid, something medication for pain relief, and I can take Tylenol instead. That's the biggest change that I have to consider as no ibuprofen, because that's really hard on the kidneys. And also stay extra hydrated, make sure I'm drinking plenty of water. Besides that, once I've passed full recovery, it's just onto a normal, regular life and donating a kidney does not impact the quality or quantity of your life.
Is there anything that you might say to somebody out there that you learn from your experience of doing this? For somebody that might be considering being in your position? What would you tell them?
Well, I think it is very personal, but I just feel very blessed that I'm healthy enough to be able to donate and something that I could do that would not cause very much inconvenience or discomfort in my life would dramatically help somebody else's life. So I felt that the benefits far outweighed any risk.
You mentioned, the folks at your church, the doctors, you didn't go through this process all by yourself, but you also know people and even work with people who were able to tell you a little bit about the process. Can you I guess, talk about the extended network of people that either approached you or you approached who have done this, who have gone through this organ donation process that you did.
So Terry, who I mentioned earlier, who shared the video that I saw in March, and who donated also two years ago, she was the one who walked me through the process when I had questions and asked her what to expect. And she checked in on me, and was able to follow up with me and just saw if I had any questions I could ask her. And she was at the church as well for the announcement to April, and my husband was there. And so my husband talked to her husband about these two strong women who decided that they were just going to donate an organ to somebody and because the husbands didn't live through it themselves, but we're just on the outside wondering about is this a good, smart, wise, long term decision for my family and our family. And I think it helped my husband seeing somebody else that had gone through it and was doing fantastic, you know, years later. And so I wasn't sharing with a lot of people through the process, because first, I wasn't sure if I was going to be approved as a donor. And second, I didn't want it to be about me as the donor. But the more I've thought about it, I do want to help raise awareness that it is something that more people could do. And there's of course a great need for it. So as I did start mentioning it to people, I did find out that there were other people here that have done it five to 10 years ago, so and you wouldn't even know they're living their normal, healthy life working full time not walking around saying I donated a kidney, but just living their life.
Well, I guess I should mention, you hadn't known by the time you made your decision that President Corneille had done this or had Did you know, I did not know, I guess you didn't have to worry too much since he had gone through the process about getting the time off.
That was interesting as well, I did have enough sick time that I was not concerned about extra time off. However, I could have used FMLA. And also, though you are not able to be paid for donating an Oregon, there are funds available to help with any expenses that are not covered such as travel or time off of work. So there are those are options are available as well through the transplant services. I did not have to utilize any of those, but knowing that they were available was also encouraging. Well, Callie, thanks for
coming in and talking to us about this course. Thank you.
I'm Keith corneal. I'm president of Heartland Community College.
We know a little bit about your background of becoming a living organ donor. What led you to make that decision?
Well, what led me to making that decision is that the individual that was in the office next to mine, he was a colleague was ill. And you could see him getting worse and worse, he was going through dialysis. And his prognosis was not good, because it was a genetic disorder. And so that means no family members, direct family members of his could become a match for him because they were likely carrying the same kind of genetic disorder that he had. So it was just a matter of they were asking people to be tested. And I said, Fine, I'll go I'll go get tested.
When it comes to the point that you're a match, then what are the things that enter your mind in the process of doing this? Because most of the time, when people have to have surgery, even if it's an elective surgery, it's something that has to do with their own health issue. So how did you come to that decision? What did you think about other than, of course, the health of of your colleagues?
Yeah, I'm, you know, I'm probably guilty of not thinking enough about it. To be very honest with you again, he was sick you I saw a person that was needing help in front of me, I wouldn't say he was at the point of death, but you could see that he was getting worse if something wasn't done. So for me, I didn't think much about my own health or anything. I felt I was healthy. I you know, I had a good history of health, and I guess I left it in the hands ends have faith and just you know, because people then ask me well, what if you're going to need your kidney? Yeah, well, what if I am going to need my kidney? I guess I'll deal with that when I get to it, but he needs it now. So, I don't know, I didn't give too much thought about it, to be honest with you.
So did you know anyone else there at Madison, where you were at the time? So did you know anybody else that had done this that had been a living donor?
No, not at that point I had not, you know, it's interesting once then it starts to come out that you are a match, and that you're gonna go down this road, then other people start to share their story with you. Many of the folks that I met, had had, you know, had donated a kidney. In those cases, I didn't meet anybody that did anything with liver. But their experience was a bit different, because their surgery ended up being much more extensive than mine, because of the technology has changed quite a bit nowadays.
You're a busy guy, you have a full schedule now as president of the college, but even back then you had a pretty busy position, how does something like that affect your day to day life, because there's a lot of testing that has to be involved, you have to make a lot of hospital visits, then of course, there's the surgery and the recovery time, was that something that you kind of anticipated,
um, you know, they talk that through with you from the get go. And we were very fortunate that I was in Madison, and the University of Wisconsin, Madison is one of the leading transplant hospitals in the United States. So I was just on the road. So it wasn't like I was having to take full days for my testing or to go in which many people had to do if they were from outside of Madison. So it was much easier in that regard. It wasn't as time consuming as one would think the visits usually were more about, you know, they want to make sure that you are mentally prepared for this. And that's what the longest conversations were always about answering all your questions, really understanding what you're going through bringing in other people to talk to you bringing in living donors that would talk to you. But I didn't see it was unrealistic for my life and my work schedule at all. When we went in, we did a Thursday, Friday, I was back home. They were going to set me on Friday. But I went home Saturday morning early, and I was back to work on Tuesday.
Tell me a little bit about that mental preparation, what were the things that people asked you or told you in the process of making sure that you were making the decision? With the right mindset?
They asked you a lot about the questions that you have. What about your own health, your own health history? What is your family thinking? What is their emotional state with regard to it? So you have to answer a lot of those questions. My wife and I went to every session together, they were asking her a lot of questions about it. So there were those types of things. And at first, you don't meet a lot with them towards the end, you're meeting all the time, because they're testing you for a lot of different things. And then they have conversation with you. And at the end of every session, they said, Are you sure this is what you want to do? They ask you that continuously? I mean, to the point where it's almost like, Yes, I said I'd do this, let's go. And even the day of the surgery, I think probably I was asked no less than six times. The last thing they asked you before they take you into the operating room, they stop you. And they ask, Are you sure that you're comfortable with doing this? They have ways that that they can if somebody were at last minute to say that? No, they didn't want to show it was a medical condition. So that you're not put in that difficult situation?
You mentioned your family and making sure that they wanted to make sure your family was okay with that you have a big family. Yeah, that's a lot of kidneys. That's a lot of people that could need a kidney. Did that ever enter into it? I've heard from other people that that's a concern. Some people have, they're worried that then if they you know, give up one of their kidneys, that may be somebody in their family?
I you know, I my brothers and sisters didn't ask me that question. I think maybe it's because we do have that very extended family. My children asked me that question. My wife asked me that question. You know, that was one of the things they do talk to you about is is that what is the likelihood of your family member going to need it. But given your history and everything you talk about early on, they have a pretty good indication of what a family member may need, because they do ask you about your children's health history to that point as well. So they I think are watching for that and have a good sense if it would be a problem or not. But my children did ask me and I said, you know, I love them. And no matter what, we would take care of them in some way. But this man needed the help now, and we help people that are in front of us and need us now. And we'll deal with the consequences of those other things later. We can't answer those questions. But what if my children are and none of them we had that covered? See what if you never need it? And he did and he dies? Then what? Then we didn't do our what was right at the moment
here at Heartland there are I'm encountering a number of people that have done this. And one of the peoples Kelly Stogner, who right, works closely with you works in your office,
hers happened quickly, very quickly, from what I understand it was something that she wanted to do to help someone else. And I think she felt like she had the capacity to do that. Which is always a great thing. When she did tell me, I just, I gave her all the support that I could, I don't think she knew until I brought in my book from the hospital that they give you they give you this whole binder with everything that you could answer every question you could have. She told me she was getting tested that she was going to do this. So what I did was I brought her the book, I said, I want you to go through this book. And it was at that point that I told her that I did it and told her what she could expect. And she had some questions. And we we talked those through.
You mentioned this was a colleague, who you don't need to to is that at all weird to then go back to everybody gets back to work, and you're over there and like that guy has my kid does that in any way, an unusual experience?
I don't know, because it was the only time. I don't know if it was usual or unusual, to be honest. You know, I think that everybody in the college was a lot of people were getting tested and trying to have help him. It was just an odd thing that we matched that our offices were next to each other. He was the provost, I was the vice president for student services. So we work together all the time, I was just hopefully it would make him a little less cranky. I think everybody else did as well, every time I see him that he's doing well, in fact, he's being watched more closely than others, because the effect that the kidney has had is been much more favorable than they ever thought it would be. The kidneys is doing fabulous things for him. So maybe I gave him the wrong kidney. I don't know, maybe I should have given my left or my right kidney instead of the left one. But it was a fun type of a thing after that, you know, and I think that I don't think it surprised people at the college. But it would be interesting to find out from other people what their perspective was because I never asked them. Well, it's really
interesting to me that the thing that I've heard over and over talking to a few people that have done this is it's something when people do, you don't really learn about it until the circumstance arises with someone else. And I don't know if that says something about the personality of folks like yourself who do this, they're just not going to go around talking about it. But that maybe also is a case that that humility, or that doesn't help promote it. So here's your chance to promote it. What would you tell people, if they were considering doing this, if they felt it was a personal decision that they were considering? What would you tell them either good or bad? Or what to expect to make them think about? If they want to do something like this? Well, I
think that it goes back to what you said, Steve, at the beginning with regard to you know, most people going into surgery don't know what to expect, or they're fearful of it. I think that most people think, oh, my gosh, they give you a kidney, they're gonna rip you wide open and everything. I mean, you know, want to make a graphic, but the truth of the matter is, is that the incisions are so small anymore, it's hardly noticeable. There is relatively little to no pain, I would say don't follow what I did and go back to work within three or four days. I mean, take the time off that they recommend that was a mistake on my part that was being stupid and stubborn on my part, which is not uncommon, I guess. But I would just encourage them to really, if they think there's somebody in need to step up and see how you can help, maybe it's just giving blood, maybe it's giving a kidney, maybe it's neither, maybe it's just the support of helping somebody through a difficult moment, and just talking them through it, you make a good test, that would not be a match, but that's okay. That's okay. You're doing something that's, that's meaningful to someone else. And the lesson learned for me was more about me, it was more about that I learned some new things about myself. And it just, it felt right, it felt good. And I would encourage others to look at helping out in any way, again, giving blood being tested to be a living donor, whatever the case is, but I think that if you're afraid, you don't need to be afraid they're going to walk you through it. They're going to answer your questions. You know, the best part too is if something does happen with my kidneys, I go to the front of line now. So I don't have to wait. And there's just a lot of things that it taught me that, you know, I didn't have to be afraid of something that I did for a moment think oh my gosh, what am I doing here? But there was no reason to be afraid. Well, President
corneal thanks for coming in and talk to us about this experience. Great. Thank you.
I'm Cindy Alfano, and I am the registrar here at Heartland Community College.
So like few others here at Heartland you are a living organ donor. Yes. I've been asking everyone about how they arrived at that decision. It's not super common.
My story actually begins with a new story that I saw on TV, where they were highlighting A donor chain that kind of started with a person who wanted to donate to a family member and couldn't because they weren't a match. But there was somebody from that donated to the registry, and they were connected, but then that family member donated to somebody else, and so on, and so on, and so on. So there were about 18 people that received kidneys through that process. And I thought, you know, I could do that. One of the places that was part of the chain was only 45 minutes away from where I lived.
So where were you living at the time? When was this?
It was in 2012, I was living in Wisconsin, in near Madison hospital there. So I went through the process and came through and all went, well,
Keith corneal was in Madison when he was a donor as well. And he said that the hospital there was very, it was very easy to go through that process.
Absolutely. Absolutely. We figured out that it was the same hospital and the same doctor that did the surgery for both of us.
Go figure that I know, this is something I've heard a couple of times speaking with people, is that you it sounds like you just kind of thought, oh, that's something that people need? I'll do that. Was it like that? Was it like flipping a switch? Or did you have to think about it for a while before you took action?
No, I, I, I felt as though I really didn't need to do a lot of thinking to me, it seemed like something easy that I could do that could have an amazing impact on another person, their family. And so to me, the question always was why wouldn't die? People always ask me, why would you? And my answer always is why wouldn't I couldn't think of any reason why it wouldn't do it.
Did you have any kind of concerns or a general comfort with surgery? Had you had surgery before in any capacity?
Nothing to this extent? I was not worried about that. I think family were my own family. But for me, again, don't have any children. Because I think some people will say, Well, you know, I don't want to do that in case something happens to my son or daughter. And I don't have any, any children. And so again, it always came back to why wouldn't I do it?
So when you did hear some concerns from your family? What did they say? What were they worried about?
Well, they, you know, were worried about, well, what if something were to happen to me or something were to happen to the remaining kidney that I had? What would that mean for me? And for me, I just did my best to reassure them that it is what it is, whatever happens happens, and we'll deal with it when it comes.
So you're part of this chain of donors? Did you end up having any contact or meeting the person that ended up getting your kidney? Yep,
at least the very day of the surgery, the kidney took a couple plane rides, to get to where it needed to be. And by the end of the day, they at least told us that the surgery on the other end went well. And so we were glad to hear that, as part of the process. They don't share information with the person who receives the kidney. But she did make an inquiry to the hospital. And as part of their process, they reached out to me and said she wants to make contact. And so we exchanged some letters, you know, initially, she's a woman in Pennsylvania. And she was indicating she was doing well. So we had some correspondence initially, and then her brother actually was traveling over to our area. And we met for lunch one day. And so it kind of pulled everything together, at least for me, you know, to be able to see somebody so close to her kind of share what things were like on her end?
What was the process of the day of the surgery was scheduled? Pretty well ahead of time. Were there any concerns? Did you have to sort of be on standby and wait for the conditions to be proper for the person receiving it? How did all of that work? You know,
interestingly enough, they accommodations were more on my end. So once I went through all the testing, and they found somebody on the registry, that was a match, they contacted me and said, we're ready to go. You tell us when is a good time. So everything kind of went on my schedule. You know, we found a good time within the next you know, month of that and it was a good time in the semester we could take some time off. So really was more accommodating to me, other than the surgery was super early in the morning so we could make its flight over to where it needed to be other than that, no issues.
So what was your recovery time like?
By the second third week I was I was feeling well, and in fact I didn't feel like I had much of any kind of pain or discomfort. So the week Recovery went well, surprisingly, I didn't know what I expected, necessarily, but all went really well.
So what would you tell other people that might be contemplating this? Obviously, there is an ongoing need. And I don't know if people just don't think about it as something that they could enter into and help with, right? Or they might be worried about a few things. It sounds like you pretty much weren't too worried about anything, didn't have a lot of concerns. But what would you tell other people that might be considering being a living donor,
the impact to that other person is, is beyond words like and can't even describe? I mean, her life is different now, because of that. And what seemed to be a small thing, on my end, seemed to be a big thing for her and her family. And so that's the message I think always like to tell people, from the person donors perspective, things will go pretty smoothly, I can imagine a lot of problems. And that it's relatively easy. And again, I always come back to why wouldn't we? You know, and do it.
So many thanks for coming in and talking to us about your experience.
Great. Thank you for having me.
I'm Pamela Sweetwood. I am the Director of Project rise here at Heartland Community College.
So what led you to make this decision? Was this somebody that you knew? Was that just a decision that you wanted to do it? Because you knew the importance of it? How did you get there,
I had wanted to do it for ages, I was just looking for an opportunity to a friend of mine needed a kidney. And I was not a match for them. So what we did was a paired exchange program, which means that he could have anybody who wanted to get tested to see if their match that and I was not a match for him. But they catch my information in the database. So then if they could find a match for him, and I could be a match for somebody else. It's sometimes it's just a two way exchange. Sometimes it's 10 people involved or something like that, but that my kidney ended up going to someone that I didn't know
how long after you got on that list, did they contact you?
Oh, my goodness, the whole process took almost two years. It was a lot of testing. It was through Barnes Jewish Hospital in St. Louis, everything is run through the recipients insurance. So we weren't able to go to Peoria or closer, we needed to go through St. Louis. So I did all my testing down there. And some tests, they had to repeat multiple times, the tests were pretty easy. But it was kind of hard for me because I'm a person that passes out easily, especially with blood draws or shots. And the one time they had to take 23 tubes of blood from me. So that was, that was the most difficult process. But I also got over my fear of blood draws from it. So that was a good thing.
Well, that's a plus. I have to say, though, that such a commitment. The fact that if you are somebody that passes out with blood draws has that kind of reaction, you wouldn't think you're going to enter into this pretty intensive and life altering decision to donate a kidney.
Yeah, to me, it was an easy decision. It was never one that I second guests or anything like that, in fact, throughout the process are constantly giving you an out, they'll blame it on something medical rather than telling the person who you know, but I never considered that. To me. I was ready an organ donor as far as upon my death. But it was kind of silly to wait till my death. As far as I was concerned, you have two kidneys, you only need one kidney. And if I could do it during my lifetime, I wanted to that way, it was kind of assured that it was a healthy kidney, and that it was usable, where that may not be possible later in life.
So were you working at Heartland at the time that this was if you have a health issue, yourself, you can take time off and deal with it. As you mentioned earlier, a lot of the particulars are taken through the recipients insurance company, they pay for everything and pay for your doctor's visits, they they cover all of that their insurance covers you were there any complications and getting the time off and time to go to the hospital for all those appointments, the time for the actual surgery, the time for recovery. How did that work with your employer here?
It wasn't any problem at all. I usually have plenty of vacation time, sick time. So that's not an issue. And since I did it in December, we were close for a part of the time so I just missed a couple of weeks in January. It wasn't that much time and I probably looking back on it. I was sore afterwards. I know some people recover faster than others. I was off for a month and I was in the hospital for five days which is kind of the longest that they keep you I wish I would have come home sooner. And they didn't really tell people until after it happened because I was afraid that something languaging said, I didn't want it to fall through, it almost fell through right beforehand as it was. So I've been waiting for too long for it to happen. So I just wanted to happen as quietly as possible.
What kind of complications can happen there at the last minute, he said it almost felt
any of the test results. So any of the test results can throw it off. And, well, if you're female, for one thing, they do a pregnancy test every single time they see you. And they do blood tests all the time. And they do tests a basically everything from the neck down, and that they didn't catch my brain tumor, even though I had my brain tumor that because they weren't looking at my head. But one of the things that was really humbling about it was walking around Barnes Jewish Hospital, especially like in some of the departments where it's all cancer patients, and realizing you're there because you're healthy. Everybody else is there, because they're under some kind of treatment, have some kind of disease, something like that you're there because you are healthy. So it's really humbling. And I just have never lost that feeling.
You mentioned that you had health issues later. Did you think about that? First of all, that's a scary thing to learn that you have a tumor. Contrasting that, when you had to go through treatment for that and yourself become somebody that had a life threatening or potentially life threatening problem, did you at all reflect about the person that you donated the kidney to or anything about the experience that you'd went through previous as you say, as a healthy person, when you had to yourself go through a health scare?
Yeah, it was kind of different with my brain tumor. Because I didn't have really many symptoms. I wasn't getting migraines, or headaches or anything like that. I just had problems with my vision. So I felt fine. And to be honest with you, I've had seven surgeries, and my brain surgery was the easiest. So the recovery was nothing, I felt good within two days. And I came home right away, and I was at the grocery store the next day, it didn't really even feel like I had surgery. So it was super, super easy. So it didn't really make me think of my kidney surgery because that was a recovery and you're especially sore like in your stomach muscles is kind of hard to sit up or stand or change positions for that. But my brain surgery was very easy to easy.
It's surprising almost how casual you are about talking about just another surgery. Yeah. So tell me a little bit about your alluded to it the recovery from the kidney surgery. Afterwards, I guess the types of things that people would don't have any kind of experts? Did you feel any different? Use it? Of course, you know, anytime that that you have surgery, it is your sore, you have to recover? How did it feel?
I was just so far and like I said it was was hard changing positions because your stomach muscles are so affected. The surgery that I had was it's called a micro something. And basically, incision was tiny as could be. And one of the things that people don't know about kidney donation is they really worry about living on just one kidney. And if that's going to be a problem or not, that's not a problem at all. Your kidney adapts to it, your remaining kidney becomes like a super kidney, it gets to be 85% of the size of the two kidneys that you had before. So it adapts to it. And it zaps really quickly. Actually, the recovery was pretty easy, just tiring, and getting back home and things like that. But it wasn't hard at all. It wasn't I would encourage anybody to consider it. That's for sure.
One of the thing I wanted to ask you about you didn't know the person who is the recipient, right that at any point, you get to know them, Did you learn anything about them? That can sometimes be a decision.
Right? They did ask me that. That's one of the things with doing a kidney donation. I had a whole bunch of people assigned to me as caseworkers that I had nurse that was like navigator for the entire process. I have a social worker, the social worker is kind of dealing with the emotional side of things and making sure you're doing this on your own accord and not being persuaded by somebody else to do it or anything like that. Um, so the social worker does ask you if you do want to meet the not necessarily physically because the person was from out of state, they were from out west. But if you do want to know who the recipient is, and they will create that transaction, if everybody agrees to it, if somebody says no, then nobody gets to meet the person or note that much about the person or anything like that. So I said that it didn't matter either way. So I don't know how they took that they took this a yes or no. To me. It wasn't important as long as it got used. And I do know that was somebody out west it was a woman. I think that's only no is it was a female out west.
somewhere outside of Illinois. Yes, yesterday. Do it.
And that was the delay with the surgery of a day because of the weather. They had problems out west with the snowstorm. So that's very rare for something to delay surgery.
What would you tell people that might be considering this? What do they need to know? What would you tell
them, one of the opposition things that I heard from people was, what if you want to give a kidney to somebody else, someday you don't have a spare to give kind of a? Well, the truth is, you're not going to be any more of a match to a family member than you are to a stranger. So it's not a hit some people, they're like, Oh, I could not do that. Because I want to make sure I save my kidneys in case my kids need them or something like that. That doesn't, it doesn't work that way. So you may as well do it when you're healthy. And when you're capable of doing it as far as having the time to recover and have the surgery and everything like that. The testing was not hard by any means and that there was a national database that they put your information in. And it's just how quickly or how slowly you are matched for somebody at all the things line up. With me being a paired exchange, it was a different process than if I had been matched with somebody from the onset for people who do donate kidneys, and that the follow up care is pretty minimal. Since I had mine at Barnes Jewish Hospital in St. Louis. They were doing the study. So they followed me for two years. So I did follow up appointments, just to see how as a donor, my medical progress was, but after that it's just a blood test once a year. So they just check my creatine levels and make sure I'm okay. And it does register as high but that's normal for one kidney. So it's not anything that's a problem or anything like that. So it's super easy afterwards. I can't take ibuprofen, I had to take Tylenol. So that's pretty minor accommodation to make in life.
Pamela, thanks so much for coming in and talking about this. It's amazing to see that people can make this commitment. And for those of you out there that are interesting hope we can share some information so they know what it's like. Sure. Pamela Sweetwood is the director of Project rise, which supports low income disabled and first generation students at Heartland Community College. She became a kidney donor in December of 2012. She spoke to us along with registrar, Cindy Alfonso, administrative assistant, Kelly Stogner, and Heartland President Keith corneal, all of whom are living donors. If you're interested in other topics of health, history, education, art, and more, you could subscribe to this podcast via Apple podcasts, Spotify, audio boom or wherever you found this episode. Thanks for listening
