How Jim became a kidney donor to his “brother” Darryl. Plus: Dr. Adam Bregman discusses helpful resources for living donation and some kidney transplant disparities.

Host: So, welcome, Jim Norwood, to Kidney Transplant Conversations.

Jim: Thank you. Happy to be here.

Host: And in our conversation today, I’m hoping we can share some insights into the process of becoming a kidney transplant donor that you experienced, so that other donors and donor recipients can better understand all that entails. So, let’s start with a little bit of background. How did you become friends with your eventual recipient, Darryl? Because I know you guys go back a long way.

Jim: Darryl and I, we met in 2000. We were at the Command and General Staff Officer College, which is an army school. Our families were with us, and we ended up being neighbors. You know, there were 50 or so couples in this cul-de-sac, this condominium cul-de-sac. So, we immediately had all these friends, and our kids had all these friends. Darryl and Pam, his wife, and our kids just hit it off. And, you know, we lived right next door to each other.

Host: So, wonderful. And how long ago was that?

Jim: That was in 2000. And so, we were there for about 11 months. We did some different adventures together. We went skiing together locally. Went out to dinner, had some barbecues, you know, that kind of thing. We just became really good friends. And, you know, Darryl and I realized that we started calling each other brother because we have a lot in common and we just had that special connection. We just felt really comfortable with each other.

Host: And how did you come to learn that Darryl was in need of a kidney?

Jim: It was probably 18, 19 years later. And my wife told me that Darryl was having problems. He had lost a kidney, had kidney cancer, he was likely to lose the other one. You know, I reached out, wishing the best, hope everything would be okay. And it was probably a couple years later that they had sent an email out to friends, family, connections, just kind of explaining Darryl’s situation. At this point, I want to say, he’d been on dialysis maybe two years, two and a half years. And my wife, we were actually eating out, and she said, would you consider donating? And I said, absolutely. I’ve got two, he needs one. So, why not give up one if I can? And that kind of started the process, in very informal manner over dinner.

Host: And that was just you and your wife talking about a situation with a friend?

Jim: It was. And then, once my wife realized that I was serious, she reached out to Pam, Darryl’s wife. They put us in touch with the coordinator at UNC, and I began the process.

Host: Was it a difficult conclusion for you to come to, to start that process? I mean, did you really wrestle with it, or did it feel like, oh, this is like a natural, obvious decision?

Jim: I never wrestled with the decision. It just seemed like something that I should do, you know? If I could help Darryl, then that would help his family. They’re a wonderful family, Darryl’s a wonderful person. You know, he had a young granddaughter. Michelle and I had just been informed that we were going to be grandparents. And I just started thinking about his family, you know, how they would feel if something, if things were to go south, so to speak. And so, I just wanted to help him and help the family.

Host: Did you tell him right away that you were considering this? Or did you kind of go for an assessment first to make sure that it was a possibility?

Jim: No, I told him that I was interested and that I had been contacted by UNC, that I had done the blood draw and everything, and that it appeared, initially, that I was a match. And, you know, I mean, he was very, very humble, very grateful. It was still too early in the process for me to be recognized as a valid match for him, but I did kind of keep him informed as I would go through the different stages of tests.

Host: And what kind of tests did you have to go through?

Jim: They checked me out thoroughly. I had to do a couple of stress tests. I forget what the procedure is called, but where they insert the dye and they track it through your system, MRIs, CAT scans. I want to say I went up there three times. Each time I went, there was at least two days of tests. So, once they cleared me to donate, you know, I felt really, confident that I was in good shape, that I could handle it, and that this hopefully would be a good thing for Darryl.

Host: It must have been quite an amazing journey to suddenly find yourself with all of this kind of technology, testing, and possibilities.

Jim: It was. At the time that I donated the kidney, I was 58 years old. And I thought to be in reasonably good health, I’ve always kind of taken care of myself. But just to have all that validated, you know, by the testing, by the professionals, them reassuring me that my quality of life would not change, that I could continue to live my life as I had in the past, you know, that all gave me kind of a sense of confidence that everything was going to be okay.

Host: What about thinking ahead to the future and spending the rest of your life with one kidney and potentially having a financial impact from that whole process? What were your thoughts around that and what kind of discussions did you have around that?

Jim: I really didn’t focus on the finances so much because early in the process, you know, Darryl had informed me about his GoFundMe site through the National Kidney Foundation, that they were going to cover travel expenses, little things like that. That his insurance would cover the hospital stay and all that. And the kidney coordinator and their team, you know, that’s part of the process. They want to educate you on everything from the finances, the insurance, you know, all the way to later in life and things like that. Plus, as a retired soldier, I have Tricare insurance, which is a really good program. As a business owner, I have my own insurance as well. So, I was in a good position to not have to worry about a lot of things that probably a lot of people do.

Host: And what about your kind of wider family, friends, and family? Did you let people know that you were going through this process, and what kind of response did you get? It’s kind of unusual… 

Jim: It is. You know, my kids wanted to know more. My boys wanted to know more. They’re both adult men, but they wanted to better understand the process and, you know, after the donation kind of the back end, the recovery end would I be, okay? You know, that’s kind of what I got from my sister and my in-laws. They just wanted to really better understand the process.

Host: And it’s funny, you mentioned your age, at the time you were 58. Obviously, because I’m talking to so many people about kidney transplant, that thought has crossed my mind, well, could I be a donor? And I guess I kind of thought, well, I’m probably a little too old to do that, but clearly not.

Jim: No, the transplant team told me this. You’re definitely not the youngest, but you’re definitely not the oldest. And it really just comes down to, you know, are you physically a match? And then, what kind of shape are you at? I’m retired army, but I still go to the gym and work out seven days a week. I just do that for me. That’s not something that I started because I was going to donate a kidney. So, I’ve always just tried to take care of my body.

Host: Yes, it just goes to show being physically active, it’s key. So, Jim, how do you feel now? You’ve been through this process? Has it changed you?

Jim: I think it’s changed me for the better. You know, I kind of look at things a little differently. I’m happy to be able to help Darryl. I’m more patient, more humble. So, I think it’s helped me.

Host: In terms of your kind of overall experience, how could it have been better? And I’m thinking really here, you know, some of the obstacles you came across, or some of the ways you kind of went into the process, could it have been made better? Do you have suggestions on how kind of becoming a donor could be improved?

Jim: I don’t think I do. You know, UNC at Chapel Hill, they have the process down. And so, my perspective is only towards that one facility, that one institution. They knew what they were doing, just their whole process, any question, concern, they were able to address it a lot of times before I would even ask the question. What’s interesting is, I made this donation right in the middle of COVID. Originally, it was scheduled for March and then it got pushed to May and that frustrated me because, you know, I had my game face on, I was ready to go in March. You know, I had to get my game face on again and go in May. And Darryl and I walked into the hospital without our families. They were not allowed. And UNC was very accommodating, keeping the families informed. It’s a rather long procedure, you know, four and a half, five hours on the table. But when I woke up, you know, my wife was there in the room with me, and they took really good care of me.

Host: So, they did an amazing job at a really difficult time. Well, it’s really, really wonderful to hear your story. Really appreciate the insights that you’ve shared. What would you say to other people who are thinking about donating, who are maybe considering that they might give this gift for somebody?

Jim: I think that anyone that’s considering it, my hat is off to them. It is something very special for you as well as the recipient. And it’s not too often that you get to help somebody in that way and potentially save a life.

Host: Jim, thanks so much for joining Kidney Transplant Conversations today. And thanks for your service and thanks for what you’ve done for Darryl, who I now feel connected to having heard his life story.

Jim: The good news is that Darryl’s doing really well. You know, living a full life, not tied to a machine and dialysis anymore. We do get together once a year, kind of a reunion, every May. So, this will be our second reunion coming up. And he’s family.

Host: That must feel quite emotional when you get together?

Jim: It is. It’s a very special event, you know? And a lot of people don’t realize, but you know, Darryl is African American and I’m Caucasian. He’s 6’3, I’m 5’10, and they just stare at us when we call each other brother and see us out together. You know, regardless of demographics, I love him. He’s, my brother. I love their family.

Host: And as they say, all kidneys are pink!

Jim: Yes, they are!

NEXT SEGMENT 

Host: Now we’re going to talk with Dr. Adam Bregman. He’s a transplant nephrologist at the University of Minnesota Medical Center and also an assistant professor in medical nephrology at the University of Minnesota. Dr. Bregman, welcome to Kidney Transplant Conversations.

Dr. Bregman: Thank you so much for having me. I’m excited to be here.

Host: So, we are, today, talking about the benefits of living donor donation, and, also talking about how we can help the process of asking for a kidney donor. And National Kidney Foundation has got a terrific program called Big Ask, Big Give. And I know you’ve been working with that program with some of your patients, and I’m looking forward to getting some insights into how that’s working for you at University of Minnesota Medical Center. But first, could you give us some information about what is the current status of living donor transplants in the context of overall donation and also how that is potentially affecting wait list and waiting times for a kidney transplant?

Dr. Bregman: You know, in 2019, before the pandemic hit, it was a record-breaking year for living donor kidney transplant. There were almost 6,900 living donor kidney transplants in the country. That decreased due to the pandemic to just over 5,200, when many centers briefly paused their living donor programs, but then subsequently rebounded to about 6,000 in 2021. Just to put that in the context, there were 24,669 kidney transplants in 2021. So, living donor kidney transplants accounted for 21.2% of all of kidney transplants at that time. So, you know, about 40,000 patients are added to the waiting list for a kidney transplant each year, for such a scarce and vital resource, and at any one time, there’s about 140,000 patients that are wait listed for a kidney alone. Overall, the amount of patients on the waiting list remain relatively stable over time, despite increasing the amounts of living donor kidney transplant and deceased donor kidney transplant with the improved regulation of kidney transplants in the country.

So, if you are waiting for a kidney transplant, depending on the region that you’re in and the blood type that you are, or the amount of antibodies that you have on markers to other people’s kidneys, you can wait from anywhere from one year to eight years, depending on a variety of characteristics. But just some statistics, for patients that were wait listed in 2016, 36.5% were still waiting for a kidney in 2019. 23% of them underwent a deceased donor transplant, 13.5% underwent a living donor kidney transplant, and 20% were removed from the list. And we haven’t even been able to calculate the average waiting time for a kidney transplant in over a decade because 50% of the candidates on the waiting list haven’t undergone transplant since 2008, for a variety of reasons. So, it really is in your best interest, if you need a kidney transplant, to try to get a living donor kidney transplant.

Host: It sounds like the number of living donor transplants that is taking place is trending up. It’s not a steep rise, it’s a very gradual.

Dr. Bregman: That is correct. You know, I would love if living donor kidney transplant would comprise 80 or 100% of our total transplants. But yes, you know, even though it is increasing in number, but because we’re increasing the amount of overall transplants that are being done by being maybe more aggressive with the deceased donor organs that are utilized, the percentage overall remains the same.

Host: So, obviously, it’s a great solution for someone who needs a transplant to have a deceased donor transplant. It’s a much better solution than, say, remaining on dialysis in the long term. But why would receiving a living donor kidney transplant be even better?

Dr. Bregman: I’d like to explain that with some statistics, okay? So, this is data from the Organ Procurement Transplant Network for kidney transplants performed between 2008 and 2015, okay? One year kidney graft survival, okay, for a living donor organ was 97.5%, and for a deceased donor was 93.2%. At three years, it was 92.5% for living donors and 85% for deceased donors. And then at five years, 85.6% for living donors and 74.4% for deceased donors. So, you can see, you know, using that data, that the kidneys last longer if they come from a living donor. And what is not reflected in that data is that they typically work immediately. There’s a lot lower of a risk for needing dialysis, even for a few sessions after transplant. So, you know, not to downplay deceased donor transplant at all, it is life saving and life prolonging, but if given the choice between living donor and deceased donor, one would certainly want a living donor kidney transplant.

Host: Plus, the added benefit that, potentially, you could be waiting a far shorter period for a living donor transplant, but you do have to go through a process which you kind of have to lead yourself. So, we’ll come onto that a little bit later. Has living donation become easier and safer? Has surgery changed? And what protections or supports are in place for living donors because, obviously, they face some kind of financial and insurance implications.

Dr. Bregman: So, yes, living donation has certainly become safer. For the donor, from a nephrologist standpoint, when I evaluate a potential donor, I want them to understand the potential risk of kidney injury and kidney failure themselves. But in general terms, the donor rate of end stage kidney disease doesn’t exceed the end stage kidney disease rate in the general population, even after taking out one of their kidneys. That is because our donors are relatively healthy, well selected. They don’t have protein in their urine, high blood pressure, diabetes. You know, depending on the risk factors of the donor, whatever conditions that they may have, their increase in risk for kidney failure in their lifetimes could be 6 to 12 times the rate before donation. But keep in mind, the absolute risk is very, very small. As in like, you know, 0.3% to 0.6% after donation, 20-year end-stage kidney disease risk.

So, you know, in a paper that I was reading, the 20-year end-stage kidney disease risk in the average donor is 0.34%, and that is actually lower than the risk of the general population. Now, we have a lot more calculators and models to predict risk based on donor factors like age, BMI, systolic blood pressure, to identify higher risk donors and, you know, be able to warn them of the possible risk. And then, the surgical complications such as wound infection and hernia have also decreased now that most centers are using either laparoscopic hand assisted donation or robotic techniques rather than open techniques.

Host: So, that means it’s a very small incision?

Dr. Bregman: Yes. It is fairly small. The actual incision, the largest incision will be where the kidney comes out, okay? So, we’re talking maybe six inches or so. To your previous point about the protections or support, I think that we’ve really made strides in the last few years. So, recipient insurance typically covers donor medical expenses. So, that means the evaluation, the donor surgery, the follow up appointments, the follow-up blood tests but the National Living Donor Assistance Center, the NLDAC, has resources that can provide reimbursement for travel, lost wages and dependent care expenses. In addition, there are grants through the American Transplant Foundation and individual centers may have resources as well, as well as certain paired exchange programs that have their own benefits. You know, lastly, the Patient Protection and Affordable Care Act has made it illegal to deny coverage or increase premiums for organ donors. So, an organ donor does not need to be concerned about being denied health insurance in the future.

Host: So, there really has been a lot of progress in the area of general support. You mentioned NLDAC and we already scheduled a future episode to talk with the team there and take a little bit of a deeper dive into how that whole program works, who is eligible and what financial support they will provide. So, it’s exciting to see all of those things falling into place. I think one of the concerns we’ve seen on the podcast and previous episodes is the fact that we do see differences in terms of access to transplant and length of time spent on dialysis with minority populations. So, we see a disparity for African Americans, for Hispanics and also for Asians. Could you talk a little bit about what are the reasons for those disparities, so we can kind of understand how we can work to address them?

Dr. Bregman: Yes. Absolutely. And you’re right. It’s extremely unfortunate that that is occurring, that there is decreased access for patients of color. So, just to kind of give you an idea, non-Hispanic and Black patients are four times more likely than patients who are non-Hispanic and white to have kidney disease, but only half as likely to undergo kidney transplant. Black patients have disproportionately lower rates of living donor kidney transplant. And these racial disparities persist even after accounting for medical differences. There was actually a recent study in [25:34 Inaudible] in 2021 that showed that even after accounting for the social determinants of health, Black patients had a lower likelihood of kidney transplant by 26%. They were 51% less likely to get a living donor kidney transplant but they actually didn’t find any differences in deceased donor kidney transplant. You know, talking about reasons why these disparities may exist, it’s complicated. It could be due to one of three categories or even parts of each one. So, access to care, meaning, being referred at an appropriate time, you can be referred for evaluation for a kidney transplant, once your GFR, your glomerular filtration rate reaches 20 milliliters per minute. Potentially, they don’t start seeing a nephrologist until later issues related to outcome after kidney transplant. So, meaning, the patient needs to be aware of what kidney transplant is, want to go through the process, and then following through with care, having the ability to go to the doctor, whether that means, you know, having access to transportation and there are certainly some funds that one will need to purchase their medication, even with the assistance of insurance. A few things that have been done in the last few years to try to remedy this disparity was trying to eliminate the estimated GFR correction for race, which could delay referral for transplant evaluation.

So, that’s been changed for a lot of health centers in the past few years because before that, African Americans would have a correction such that their GFR was estimated to be higher than the same creatinine for a white person. So that maybe their estimated GFR was 23 milliliters per minute instead of 20 milliliters per minute, which would delay their referral for kidney transplant. And then in addition, the UNOS decision to eliminate priority allocation for HLA B antigen. So, basically, a marker on cells that can be in higher preponderance in blacks was eliminated in 2003 and that led to a 20% reduction in disparity in rates of deceased donor kidney transplant between minority and white recipients in terms of waiting time. We certainly have a lot of room for improvement and, you know, by no means is it completely equitable right now.

Host: It sounds like there are some barriers that are being reduced. I just actually had my annual checkup and I noticed that there was a notification on my kidney data to say that they were removing the distinction. So, I think that’s an automated thing and it just goes to show, these things are actually built into the electronic health record. And that difference for EGFR between African Americans and other patients, historically, was really just based on bias. It wasn’t based on scientific reality.

Dr. Bregman: Yes, by-and-large, absolutely. You know, and I think that we need to take each patient individually. A frail 70-year-old woman with a creatinine of one and a muscular 25-year-old man with a creatinine of one, obviously, have very different kidney function, because of the difference in muscle mass. So, I don’t think that it was fair for there to be a correction factor for blacks when that potential recipient could be bedbound or less muscular than somebody else. So, I do think that it was a step in the right direction.

Host: So, what are the challenges with increasing living donor transplantation?

Dr. Bregman: We realized that there were a lot more challenges during the pandemic. So, cancelled transplants, not being able to meet colleagues or friends in person to either ask or even increase awareness for a living donor kidney transplant, because those people may potentially have been donors in the past, if they knew about a person’s medical issues. But I think, as a whole, the ability to see potential donors in a timely fashion is certainly important to speed up evaluations and increase the number of living donor kidney transplants. And, you know, not all centers are involved in paired exchange. So, paired exchange involves donating a kidney to someone that is not your intended recipient in order to have your intended recipient get a well-matched and well-functioning living donor kidney. So, you may know that there are multiple paired exchange programs in the country, two main ones, and not all centers are involved in it at all. And you have some centers in one and some centers in the other. So, I think that in order to really increase the amount of living donor kidney transplants, especially for patients that have a lot of antibodies or have, say, O blood type, which they can only receive an O organ by-and-large, I think we really need to have one paired exchange network for the entire country. And then, not to mention, our donor pool is decreasing because of the increased incidence of obesity, metabolic syndrome and diabetes in this country. So, we wouldn’t want to take a kidney from somebody who has diabetes because of their potential risk of diabetic kidney disease and subsequent failure, potentially, in their lifetime.

Host: So, that’s really a fundamental preventive health challenge that we have in the United States because the increase in obesity rates has continued. It just keeps going up. We’ve got reduced physical activity, increased obesity rates, and so that’s reducing the pool of patients who are available to actually donate a kidney, whether it’s a living donation or whether it’s a deceased donor donation.

Dr. Bregman: And, you know, the potential donor may actually have the same disease that led to kidney failure in their intended recipient. And, you know, the Type 2 diabetes, diabetic nephropathy, is the leading cause of kidney failure in the Western world.

Host: You know, from conversations we’ve had with patients on Kidney Transplant Conversations, it’s pretty clear that sometimes it appears to the patient that going through the transplant process, whether it’s patients asking for a living donation from people they know, or from their family, or whether it’s thinking about the additional finances and the complexity of it, it can seem like a much heavier lift than just staying on dialysis. And we had one patient who recently was talking about his journey, where he spent 19 years on dialysis before receiving a transplant. And it wasn’t that he was waiting for a transplant for 19 years, it was, for a lot of that time, he really didn’t want to be in the process, because he felt some reservations about going into the process. So, I think it’s interesting to talk about what’s happening with the Big Ask, Big Give program, which National Kidney Foundation has put together and is being used by many, many centers because it seems like part of the barrier is kind of knowing what to say. Have you been using the program with your patients and what kind of experiences have you had?

Dr. Bregman: Yeah, absolutely. So, we’ve been a part of Big Ask, Big Give for a little bit now. And I’ve only been at the University of Minnesota, now, for a year and a half. But I’ve already seen its benefits that we have successfully transplanted a number of patients with living donor kidneys, from people that they asked because of the tools and tips that they learned from Big Ask, Big Give. So, you know, learning about the perspectives of the recipient from the resources and seeing the tips that they have to overcome, the fear of asking for a kidney, how to ask and ideas to increase awareness such as sharing your story on social media and being ready to answer certain questions about concerns that a prospective donor may have, has really opened my eyes to how important of a resource this is and we’ve seen it in real time. We’ve seen an increase in amount of living donor kidney transplants being done at our center from people that have gotten living donors just from this program, from learning how to ask.

Host: What is it, fundamentally, about the process within the program or the tips within the program, do you think, that kind of moves people into that zone of being successful when asking for a kidney?

Dr. Bregman: It uses stories of people that were in the same situation as a person that is waiting for a kidney transplant. It’s obviously a vulnerable position, but it allows them kind of to have a helping hand from someone that’s gone through the same thing. And using the tips that a previous person has used to become successful and realize their dream of getting a living donor kidney transplant. So, I think it’s an amazing resource and I tell each and every one of my potential recipients that I’m evaluating to go and look at the resources on NKF or Big Ask, Big Give.

Host: It sounds like a big part of it is kind of like getting over this idea, being comfortable with the idea, it’s okay to ask, it’s okay to say no, and it’s okay to say yes. These are all good conversations, but if you don’t have the conversation, you’re not going to make progress.

Dr. Bregman: Yeah, and, you know, it’s surprising sometimes who would be willing to be evaluated and who would be willing to donate. But just as you said, if you don’t ask, the answer’s never going to be yes.

Host: Wonderful. Well, we actually are talking with Jennifer from National Kidney Foundation very soon, and she’s going to give us a deeper dive into the program and how it works and how people can engage with that. It sounds like the process of Big Ask, Big Give, could bring someone into being prepared to donate a kidney, then you might find that that kidney is not compatible with the recipient, you could still donate that kidney to somebody else and do a swap. So, the person that you wanted to give a kidney to gets a kidney that is a good match. So, that exchange process is really, important.

Dr. Bregman: I completely agree and especially with people needing more than one transplant in their lives, as our long-term graft survival increases, we’re going to see more subsequent transplant needs, and those patients may be a little bit more difficult to match. Not to mention that paired exchange, you’re not just helping one person, you’re helping multiple. You’re helping everyone in that chain, because without you as a donor, the chain would not exist.

Host: Dr. Bregman, it’s been wonderful to have you on the podcast today. Thanks so much for sharing all your insights and really important information. Just in closing, is there anything else you would like to add or share about living donation and transplant?

Dr. Bregman: First off, thank you so much for having me. This has been a pleasure. But, you know, I just want to tell people that are trying to get a kidney transplant, although the prospect of xenotransplantation is exciting, like pig kidneys, you hear about it in the news and the possibility of implantable artificial kidneys in the next few years, kidney transplant still remains the treatment of choice for kidney failure in terms of quality of life, freedom from dialysis, fluid and dietary restriction and longevity. Living donation can take away the need for dialysis at all, by getting a preemptive transplant. You have less waiting time, better function, immediate function and improved survival. So, I just want our potential recipients to be aware of that.

Host: It’s the treatment of choice. It’s the best choice right now and will probably remain so for a long time.

Dr. Bregman: Yes. I look forward to the new advances in the field over the next 30 or something years that I’ll be practicing transplant nephrology. I really don’t see a way, at least in the next 20 or so years, that living donor kidney transplant won’t be the preferred treatment of choice for kidney failure.

Host: Wonderful. Well, thank you again for joining us, and we hope to see you again on the podcast in the future.

Dr. Bregman: I’d love to be here. Thank you so much.

Host: And many thanks to Jim and to Dr. Adam Bregman for joining us today. In our next episode, we’ll be hearing from the National Living Donor Assistance Center about the financial help they can provide to people planning on donating a kidney for transplant. And we’ll talk with Raisa Simon about the donor seeker program. Thanks, again, to our underwriters, Veloxis Pharmaceuticals, and thanks for listening. Be safe and be well.

Copyright Project Advocacy, 2022.