Donor Diaries

Kidney Pledges, Pet Care, and Paychecks: The Unexpected Support System for Living Donors with the APKD | EP 35

• Laurie Lee • Season 3 • Episode 10

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Sue Rees returns to share the revolutionary donor protections offered by the Alliance for Paired Kidney Donation (APKD) that are making kidney donation more accessible and equitable for everyone. As Chief Operating Officer with over 25 years of transplant experience, Sue walks us through the comprehensive "Donor Protect" program designed to eliminate financial barriers while safeguarding donors' futures.

We explore how the Alliance reimburses lost wages (up to $10,000), covers travel expenses for both donors and their support persons, and even provides dependent and pet care assistance. Sue explains their innovative "Home Advantage" program, which allows donors to recover locally while their kidneys are shipped to recipients across the country. Most fascinating are the various pledge programs that protect donors and their loved ones: the Advanced Donation Pledge, the Family Pledge, the Friend Pledge, and the Kidney Promise.

The conversation takes a global turn as Sue reveals how APKD's international initiatives are creating life-saving matches across borders. "Our differences can save our lives," she explains, sharing the remarkable story of a Mexican poet with 94% antibodies who found her match in Wisconsin. This global kidney exchange program demonstrates how genetic diversity across populations can be the key to finding matches for highly sensitized patients.

Sue's personal journey into transplant care adds emotional depth to the discussion. After losing her father to glioblastoma, she was profoundly moved by his nurse's compassion: "I want to be that for somebody," she decided. Today, through her work with the Alliance, Sue helps give second chances to patients and families facing medical crises.

Whether you're considering donation or simply curious about advances in transplant care, this episode offers invaluable insights into the protections that make kidney donation safer and more accessible than ever before.

SHOW LINKS:

Alliance for Paired Kidney Donation
Donor Protect
Mexican Kidney Exchange Story

Donor Diaries Website
Donor Diaries on Facebook
GiftWorks Website
Connect with Laurie Lee

Speaker 1:

I don't think there's a lot of people out there that can say I really have a hand in giving somebody a second chance at life.

Speaker 2:

Hi and welcome back. This is part two of our special two-part series with the Alliance for Paired Kidney Donation. In part one, we talked with Dr Michael Reese and Sue Reese about the early days of kidney exchange and the incredible trust it took to build a system that's now saved thousands of lives. Today, I'm rejoined by my friend, sue Reese, for an important conversation about Donor Protect, a set of resources designed to make living kidney donations safer, more accessible and more equitable. If you're a current or potential donor, these are protections you'll want to know about. As a donor myself who works closely with other potential donors, I know how much these supports matter. They can be the difference between a positive experience and one that's unnecessarily difficult. Even if your transplant center isn't partnered with the Alliance, there's a really good chance you still have access to similar protections, so please don't hesitate to ask your coordinator or social worker about these protections. You can also reach out to me directly, helping donors navigate. This is what I do A little about.

Speaker 2:

Today's guest, sue, has over 25 years of experience in transplant and is the chief operating officer at the Alliance. She also serves as chief clinical officer at Health to Hope. She's a nurse, a published researcher and someone who's deeply committed to helping people live longer, healthier lives. She's also a future living kidney donor, so hopefully we can follow up with her. When that comes to fruition, let's jump in, all right. So welcome back to Donor Diaries, sue, you're my only guest that I've had on Donor Diaries in succession this close together, so you're a VIP.

Speaker 1:

Well, it's good to be back and it's great to see you again, Lori.

Speaker 2:

Good to see you too, and so, just in case somebody didn't listen to the first podcast we had with you and Mike about the Alliance, can you refresh our memory on what the Alliance Repaired Kidney Donation is?

Speaker 1:

Yes, absolutely Happy to the Alliance. Repaired Kidney Donation was started back in 2006 as a nonprofit and we remain a nonprofit. Back in the clinic days, when I would see patients in the clinic Lori in 2001, it was so heartbreaking to see an individual that was tethered to dialysis. They had a loved one that was desperate to give to them, but there were no options. And then, when we formulated the Alliance for Paired Kidney Donation, it was brought to fruition because we wanted to stop sending patients out of our clinic and saying I'm sorry, we can't help you. And so our mission now is to try to provide a kidney for everyone that needs one through paired donation. We partner with transplant centers across the United States, and now we are partnering with transplant centers outside of the United States, such as Denmark, and through this initiative, globally, we want to bring the world together through paired donation because we are finding that our differences actually can benefit another one and save their life.

Speaker 2:

So that seems like it's one of your taglines, sue. What do you mean when you say that? That our differences are what can save our lives?

Speaker 1:

Well, laurie, if you think about it, you have somebody from Scandinavia, and most people from that area stay in that area, and so they may have an immunological immunity to somebody that's like them in that area. But if you think about the United States or Italy, we're accustomed to certain generations around us, right? So America is the melting pot, and we tend to be immune to folks that are like us. It could be our child, it could be our siblings, it could be our parents, and so we're finding culturally that one's different genetic makeup from, say, denmark, could be the benefit or the needle in the haystack that helps somebody that's highly sensitized in the United States. And this actually came to be back in 2016, when we had a lovely young lady in Mexico. She is a poet and author, and her cousin was desperate to save her life. Her cousin was an O. Marisol was also an O, but her cousin couldn't give to her, despite being the universal donor, and she had 94% antibodies in her system because she had a previous transplant. And when she came into the APKD and our global initiative, I thought, oh, there's no way we are going to be able to find her a match. She is 94% sensitized. It's going to be the needle in the haystack.

Speaker 1:

Well, my business partner from Pronell in Mexico City said just try it. Just put her HLA into your system and see if it works. So I said, okay, stick with me. I got her HLA blood work. I put her into the system and, lori, she matched up with somebody in Wisconsin and so I said you know what, gabriel, don't get too excited. I need her blood and I'm going to test it with this highly sensitized man in Wisconsin whose mother was desperate to save her son's life.

Speaker 1:

So I did some footwork and wouldn't you know that the Wisconsin mother was able to give to this highly sensitized lady from Mexico in exchange for her cousin to give to the mother's son, who was also highly sensitized. And I thought to myself I'm like this is interesting. And I said I think we need to start looking into this because the odds are against them, not with them. So what is it about our genetic makeup from around the world that could actually benefit and save somebody else's life? So that's why we started doing this global outreach with Global Kidney Exchange. Is it possible that somebody from a different country could be your needle in the haystack to save your life? And so it's really interesting to think about this concept. We can benefit each other's lives by saving each other.

Speaker 2:

I love that, sue and I just I re-listened to our first podcast this morning, just to kind of get back into the topic, and it was really neat to re-listen to how you and Mike were at the forefront. You were pioneers in this. You were the ones in the early 2000s that were setting this up. And now in this conversation, it blows my mind that we're talking about actually seeking a match in another country and all of the logistics that must come along then with like, what did you do with the Mexican recipient? Did you bring them to the United States? Did a donor have to go to Mexico? How is that paid for? Like? Maybe this should be our third podcast. I don't know, sue, but I mean it's incredible to think that we're going outside borders to solve the problem that we have with finding matches, especially for highly sensitized people.

Speaker 1:

It was a logistical challenge, I will say so. We went to TSA and we talked with TSA officials. Can we take a kidney and ship it to Mexico? Could we take a kidney from Mexico and ship it to Wisconsin? Can we transport the kidneys with a human taking it across the lines? We thought of everything and we have very strict guidelines in America and we should we shouldn't take any kidney that is offered to us. So we have regulations and policies that would prevent us from taking a kidney from Mexico and bringing it into the United States. And, like Marisol who needed the kidney, she came to the United States and actually received her kidney here. Now, with Marisol, there was a foundation in Mexico that actually paid for her travel and the transplant expense, because she didn't have American insurance, nor did she have access to Medicare or Medicaid.

Speaker 2:

Wow. So that's got to be different with every country.

Speaker 1:

Every country yes.

Speaker 2:

So, sue, one of the things I really want to focus on in this podcast episode is donor protections, and I think like a good way to describe what a donor protection is is that it's not easy to donate a kidney right, like there's things that are barriers to donation for many people, and so as a whole, the transplant community is in agreement that we as a society need to eliminate the barriers, but we also are saying we don't want to incentivize people meaning like to pay a donor for their kidney right, but we at least want to be able to make a kidney donation cost neutral and remove barriers, and the Alliance for Paired Kidney Donation has something called Donor Protect. Can we go through the different aspects of Donor Protect one by one, and have you tell us a little bit about each?

Speaker 1:

Yeah, absolutely For sure. Donor Protect has evolved over the years. You know, when we first started thinking about this and talking to the donors, the biggest expense was taking time off work, like I can't be out of work for two to four weeks and not get a paycheck. My employer's not going to cover this. That's how it all came to be. We wanted them to be financially neutral. They are saving somebody's life. How can we not help support them financially?

Speaker 1:

And there was a lot of scuttle at first because is it coercion? And I think the transplant community and society got over like no, that's not coercion, we're just making them financially neutral so they can help save their loved one's life or a stranger's life. So we have a lost wage reimbursement that covers up to $10,000 in wages, but say they work in a factory and they do heavy lifting, the surgeon may not want them to go back to work for six weeks, and so those are situations that we also take into consideration where we would take on the extra two weeks to six weeks for financial reimbursement. We confirm with the employer that this is what the donor makes, and we obtain pay stubs or their tax return just to make sure that we're making them whole.

Speaker 2:

Meaning, if somebody's making $300 a week, you're not going to reimburse them for $900 a week. Exactly, yep, we need to make them whole.

Speaker 1:

Going to reimburse them for $900 a week Exactly Yep. We need to make them whole, because if we give them 900 and they're only making 300, that could look like coercion. So we need to make sure that we are straight up and that we are protecting the patients so they are financially neutral.

Speaker 2:

And I didn't realize that you were looking at it on a case-by-case basis. So somebody like me who has a desk job you know I can go back versus if I was a construction worker, you might make me hold differently because you know I can't go back after three weeks.

Speaker 1:

We have a designated donor protect coordinator that works one-on-one with each donor. That helps guide them through this process of filing and paperwork that's needed. But at the end of the day, Lori, I wouldn't claim that you're ready to go back to work. It would be your doctor who would say you know, I think she needs an extra week off because she does X, Y and Z at work, you know. So we really work hand in hand in a partnership with our transplant centers. If, then, we are going to do the right thing for that patient's safety and well-being.

Speaker 2:

That's so important that you're advocating for donors in this way. Absolutely, it was kind of my soapbox, like I. Just I feel like this is so important to make it as easy as possible for a donor, and this is amazing, sue, thank you. We have a rule in my family no emailing 48 hours until after anesthesia is out of your body.

Speaker 1:

That's probably a smart rule Most should follow.

Speaker 2:

My dad and I have both put out emails like right after surgery and then regretted it later. So, yeah, we have rules about that. See, if I wasn't worrying about replying to emails, maybe I wouldn't be emailing, right, exactly.

Speaker 1:

That's so funny, because a month back I had a colonoscopy and I thought I was all great, like I'm going to go home and I'm going to work on my emails, and I did, and then I woke up from my nap a couple hours later I'm like oh, I better go back and see what I wrote.

Speaker 2:

Did you send anything bad?

Speaker 1:

Nothing bad.

Speaker 2:

Well, you should follow our lead here, sue, and join my dad and I in not emailing after a procedure. I think I'm going to follow your advice, so tell us a little bit about travel expenses. Why would a donor incur travel expenses and how can you help with travel expenses?

Speaker 1:

Yeah, for sure. So this isn't only for the donor, but it's also for their support person, because we want to make sure that their support person is financially neutral there too, because going through a kidney donation and you can speak from this it can be emotionally taxing, and so we want to make sure that their loved one, their support person, is there with them every step of the way for psychological and physical support. And that means when they go to the evaluation process and orientation process and orientation. We want the patients to go there, be properly educated on what to expect when donating, as well as their support person. So we cover travel expenses from the time of orientation and evaluation up until the time of their first post-op appointment. So it's a case by case basis.

Speaker 2:

But again, you're looking at this person as an individual and looking at their individual situation and making decisions Exactly. That's amazing. Yep, not one size fits all.

Speaker 2:

It's never one size fits all and there are just life events that take place that you know again that we need to be there to help these donors that are so desperate to save their loved one, and I imagine you guys are doing more remote donations now, which probably alleviates the travel expense in a lot of cases if the donor can stay at a transplant center near home and just have their kidneys shipped right.

Speaker 1:

Yeah, and that's a great segue into our Home Advantage program. You know we need to make it comfortable for the donors, so can we work with another transplant center outside of the recipient's home-based transplant center and ship the kidneys, and so that is our Home Advantage program, where the donors can stay local, recover local and the recipients can do the same local, recover local and the recipients can do the same, and that's a program that's getting bigger with more transplant centers that you work with?

Speaker 1:

I imagine it is. It is, and most transplant centers want to work well together. You know they want to do what's right for the patients and for the donors. It's right for them to be home and recover in their own surroundings.

Speaker 2:

Yeah, to have your own dogs in your bed with you, exactly yes, and that's a good segue into pet care. So I have a one of my close friends recently donated and she worked with Krista at the Alliance and it was funny when I did a podcast interview with her it felt like the Alliance was paying her because she just kept incorporating you back into her story, because you really made a difference in her donation, and she said the only thing they didn't cover was pet care. And then, like a month later, I was on your website and I saw that you started offering pet care, which is a real expense, because that's a real thing If you're going to be staying in a hotel for a few nights or in the transplant center and you need dog walkers and stuff.

Speaker 1:

Yep for sure, and it was probably that scenario that led us to I'm sure it was that said, hey, we need to offer pet care Because you know, lori, I'm a dog lover and I can't imagine leaving McGee, and it would just alleviate some of my concerns that you know he does have somebody here to be cared for and we should reimburse those donors for that. That's an expense, just like having child care or elderly care is an expense. So can we help alleviate this burden for all donors? Burden for all donors? So that's why we've added the pet care.

Speaker 2:

We have dependent care, whether that's your child or elder parent somebody that you help take care of day in and day out, and McGee would probably actually need a nurse to come in, because doesn't McGee get injections?

Speaker 1:

He does as of November. The poor guy is 12 and a half years old. He's a November. The poor guy is. He's twelve and a half years old. He's one hundred and ten pounds. Oh, in November he was diagnosed with diabetes. I think, laurie, you know how much McGee is like my sidekick. He goes to work with me, he'll go to the gym with me. I just couldn't imagine not having somebody there to care for him. So this will help alleviate somebody else's McGee.

Speaker 2:

Well, thank you, McGee, for getting pet care added to donor protect.

Speaker 1:

Yes.

Speaker 2:

So yeah, you've got pet care, dependent care, so that's children or elder care, yes. And then I'd really love to ask about the different pledges you have, and I think that sometimes donors hear the word voucher. They have a general concept of what a voucher is. For somebody who's familiar with a voucher, you do offer something similar.

Speaker 1:

Absolutely, and we have three different kinds. So we have the advanced donation pledge, so this allows the donor to donate in advance of their loved one receiving a kidney. The benefit of this is that you can start to recover before your loved one gets a kidney and then you can be there for them when they receive their kidney, and so it just allows flexibility for their lifestyle. Maybe it's their work schedule, maybe it's a family commitment. The advanced donation pledge is a benefit for you and it would be your designated individual, so it cannot be transferred to another individual and, lori, it would expire on your death or the death of the individual named, whatever comes last.

Speaker 2:

And how is that different from the family and friend pledge that you have?

Speaker 1:

So the family pledge protects you should a member of your immediate family need a kidney. In the future Meaning, we define eligibility for a family member as a spouse, child, parent, grandchild or a sibling that doesn't have kidney disease prior to your donation. So you donate your kidney and this would entitle your immediate family to to be a priority in the APKD system should they develop kidney failure.

Speaker 2:

Well, what if I have like 50 people in my family?

Speaker 1:

For this one. It can't be transferred beyond your immediate family members, so it depends how many immediate family members you have. You can only use it for one person.

Speaker 2:

So what about, like for a young donor who isn't married, doesn't have kids, but they plan to do that in the future? How can this benefit them?

Speaker 1:

They don't have to name an individual. You can name your child in future needs.

Speaker 2:

So I can name. I could have 10 children in the future.

Speaker 1:

But you can only. You'd only have one kidney coming back to you, Okay.

Speaker 2:

But it doesn't matter that those children aren't born. I really appreciate that about this pledge, because it's different than saying I'm naming these five people as my voucher holders because the five people I would have named when I was 22 are different than the five people I would name right now, and so it kind of allows your family to change and grow.

Speaker 1:

Right exactly?

Speaker 2:

Is it the family pledge and friend pledge two separate things or is it family and friends?

Speaker 1:

Friends is you know they're not a DNA match, right? They're not in your immediate family, but it allows a donor to say, hey, they're not in your immediate family, but it allows a donor to say, hey, you know, I want to give my kidney and my friend has kidney disease in their family. I'd like a pledge go to them if they come up in the future of needing a kidney. So this would allow a donor to name up to five individuals who do not have kidney disease prior to donation, but this would protect them should one of those five named friends or loved ones need a kidney in the future.

Speaker 2:

Sue, do you have somebody who talks donors through this so that they fully understand how it works, what it means and who could potentially benefit from this in the future?

Speaker 1:

Absolutely so. Elizabeth Sherrill is our designated donor protect coordinator and she is always happy to sit down and talk with a donor if they have questions like what is my eligibility? What if you know what's the best pledge for me to have and how would you advise me? I mean, and she would advise you not only on the kidney pledges but also, like the home advantage, pet care, any questions that you may have. She reaches out to the transplant center that that donor's at and she will work with the social worker or the transplant coordinator just to make sure that all I's are dotted and T's are crossed. She probably knows before I do that that donor has donated because she's on it and she has such a special relationship with these donors that I've actually seen Elizabeth create friendships with these donors that have stayed in touch with her.

Speaker 2:

That's incredible. And then you have one last thing which I just think is hugely important, and it's called the kidney promise. Before I ask you to explain what it is, I feel like kidney pledges, vouchers, kidney promises. I'm guessing, and I'd love for you to tell me if I'm wrong, but I'm guessing that these aren't things that people actually end up using. However, I mean, I'm sure the advanced donation pledge people use that right, but the kidney pledge for friends and family and the kidney promise, they feel like a benefit that I would get as a donor that make me feel safe. But I'm probably never going to use them, but it still feels really good to have them offered to me. Is that true?

Speaker 1:

Yes, and it's like an insurance policy. You know the chances are that they probably will never use them, but they feel like cause. You hear time and time again I would donate my kidney to somebody, but I don't know if my child will need one in the future or if my parent will need one or my friend, and so we want to alleviate that concern for them. And the APKD will stand by our word that if you donate, we're going to do everything in our power to protect your loved one. And through that we have three different pledges that you can choose from, whatever one that fits your needs. And how can we do that? And we also like the kidney promise.

Speaker 1:

We want to protect that donor, god forbid and we only take the best of the best to be a kidney donor. I mean there is quite a bit of medical workup that goes into seeing if you're a suitable candidate to donate. Right, we don't want to take risks on you psychologically, physically. So we do thorough workups to make sure that you're in prime condition and we are your advocate. We are not the recipient's advocate at that point. Transplant centers they want to protect the donors and they should protect the donors. And so the kidney promise is, lori, if you would ever. You know you donated a kidney and I think society should pay you back. God forbid that you ever have kidney disease and have to go on dialysis. You should have a priority to getting a kidney, and so that's part of our mission is to protect donors and recipients, to make sure that everybody receives the greatest advantage for their good.

Speaker 2:

And I know that, no matter where you donate, if you ever need a kidney yourself, that you're promised to be prioritized and you essentially go to the top of the list. But that's for a deceased donor kidney, yep, and you and I know that a living donor kidney is better. So because they last typically twice as long. So what I like about this is is that you know you're talking about putting into society or giving to society. If you're giving society a Corvette and then one day you need a car, it would be nice to get a Corvette back versus a Corolla, exactly. A Corolla is great, right. So these donor kidneys, they're great, but this really offers the donor kind of the same thing that they not kind of. It provides the donor to get back what they put in in the rare, rare, rare case scenario that that's needed one day.

Speaker 1:

Yeah, exactly, and they should be protected.

Speaker 2:

Well, thank you for protecting donors. You guys do an amazing job.

Speaker 1:

Oh well, it is truly a blessing it is. It's really God's gift to me. I never thought I would be in transplant. You know, as a nurse I thought I'd be in pediatrics and NICU and that's where I started out and by the grace of God, I fell into transplant and I've never looked back because, you know, I don't think there's a lot of people out there that can say I really have a hand in giving somebody a second chance at life.

Speaker 1:

And and for me, you know I think you know this story, lori that my dad had a glioblastoma when I was in my young twenties and I set out to be a social worker, and at that point I was.

Speaker 1:

But then when my father fell ill, when his oncology doctor came in and said, jerry, I'm sorry, there's just nothing else that we can do, and I think you should go home and spend as much time with your family as you possibly can, and it was just devastating news to hear, but I cry every time I'm saying this. His nurse walked in shortly after the oncologist left and my goodness, I'll never forget the way she held his hand, the way she looked at him and the way he looked back at her and I thought I want to be that for somebody. And although my dad received a daughter's love and comfort, it was the nurse's love and hope that she gave him that. I said I'm going to be that for somebody. And so, as I sit here and cry thinking about it, I get to be that you do. I get to help give second chances. So, yes, so sorry for the tears I get all ch get up every time.

Speaker 2:

Well, and your story? I've heard the story from you before, sue, and it always makes me teary too, and cause I think about you know my dad's story, and my dad got a second chance, yeah, and I'm so sorry that your dad didn't. But you've created a life where where you're giving everybody that you work with around you a different outcome than the one you got. And if that's not making lemonade out of lemons, I don't, I don't know what is. I mean, that's gotta be, it's gotta be healing for you to be able to do that.

Speaker 1:

Absolutely, and you in my young 20s, and no matter where anybody is spiritually, I think there are little winks that we get and either we can change the path we're on or go straight forward. And I'm so grateful that I listened to and saw that wink, because I changed my path and look where I'm at. I'm friends. Grateful that I listened to and saw that wink because I changed my path. And look where I'm at. I'm friends with Lori Lee, I mean. I'm friends with Lori Lee and I'm friends with. Lori.

Speaker 2:

Well, thank you for sharing that, and thank you so much for sharing with our audience more about the Alliance for Paired Kidney Donation. I am so glad that we took the time to redo this, because it felt so good to dive into each one of these and give them the attention that they deserve, because you're doing so much for donors and in doing that for donors, you're doing so much for the patients. So thank you from the bottom of my heart for all you do.

Speaker 1:

Oh, and thank you, lori. I mean you are just I can't say enough good about you and you know your mission in life to help others. You know to donate to receive this podcast or reach people that don't have enough support or education to know enough about it. You're helping lead the industry and I really admire you.

Speaker 2:

Well, I admire you too, and thank you for being a part of what I'm trying to do here. You've been a lot of fun to work with Sue.

Speaker 1:

Well, I'm your biggest fan. Well, rob's your biggest fan, and then probably your parents, but I'm close up there. I will tell you. All right, my friend, you have a lovely day.

Speaker 2:

You too. Take care, sue. Thank you, bye-bye, bye, sue. Thank you, bye Bye. If you'd like to learn more about donor protector, the Alliance for paired kidney donation, check out the show notes for links and resources. I'd like to give a huge thank you to my editor, rob Lee, for sticking with this podcast through three full seasons. I really couldn't do it without him. I'll be back this fall with more incredible stories, so don't forget to subscribe to get notified when season four drops. You can also join the conversation on Facebook by searching Donor Diaries Podcast.

Speaker 2:

This season of Donor Diaries was proudly sponsored by GiftWorks, an organization dedicated to empowering organ recipients and living donors through education, advocacy and support. By helping patients share their journey and connect with donors, gift works is transforming lives, one transplant at a time. Learn more at yourgiftworkscom. Thanks so much for listening and remember every act of kindness creates ripples. Keep spreading those positive vibes and we'll see you in the fall. This is Lori Lee signing off. I just want to feel the sunshine. I share this life with you. I share this life with you. I share this life with you, you.

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