Caitlin Whyte (Host): What does transplant really look like beyond the surgery? In honor of Donate Life Month, this episode of In Their Words takes you inside the full transplant journey from the first evaluation to life after transplant.

 Every step is part of a carefully guided process designed to support patients and families along the way. Today, we are joined by Rebecca Brown, Director of the Kidney Transplant Program at UPMC in Central PA. She shares what patients and families truly experience along the way. From the emotional reality of the call to the growing wait ist to the lifesaving impact of living donors, this is a conversation about what it means to wait. What it means to give and what it means to begin again. If you have ever wondered how you can make a difference, this is where that understanding begins.

Rebecca Brown: My name is Rebecca Brown. I'm the Director in the Transplant Program at UPMC, Harrisburg. I have worked at the hospital for almost 40 years and have been in transplant for the last 26 years. So, I worked in critical care for 13 years. And I took care of a lot of deceased donors and their families, and I loved taking care of those patients. First of all, it sounds a little twisted, but they were super sick and required a lot of critical thinking, and you weren't just taking care of the patients, you were taking care of their families, who were dealing with a tragedy and asked to make this decision about, you know, saving someone else's life in their terrible situation that they're in.

So, I've always been a huge advocate for organ donation. And when the transplant program started here, I thought, "Well, I've been taking care of these deceased donors. Now, I kind of want to see what the other side looks like." So, I like to say that the transplant side of organ donation is the happy side. Because in transplant you get to see people who are really, really sick, get better very, very quickly because of the generosity of someone's family.

So, we are a kidney transplant program and we take care of our patients throughout all phases of transplant. So when we get a referral, patients move to evaluation. Once they've gotten through all of their testing and been determined that they are a good candidate for transplant, then they're put on the list. And essentially, they're waiting for a transplant. So if they don't have a living donor, people are waiting years on the deceased donor list because there are more than twice as many people who need a kidney transplant than organs that are available.

So, we continue to follow our patients while they're waiting. And then, when patients, you know, get transplanted, we follow our patients for the life of their transplanted kidneys. So, it's probably, I think the most rewarding part of what I do is that I get to develop these relationships with patients and their families, because there's some genetic diseases that, unfortunately, afflict many members of families.

And we get to know brothers, sisters, aunts, uncles, cousins, and take care of the whole family unit. We have an Amish family, down in Lancaster County that we just know the whole family because they all have a genetic disease called polycystic kidney disease. And I have had the opportunity to, participate in community events to educate the community about the importance of living donation. I kind of went to them, if you will, was able to interact with them in their community, answer questions. They actually made me dinner. It was a great time. It was really wonderful. And several members in that family have received transplants. And we get to see them, you know, years, like decades later and how well they're still doing.

I started out as a coordinator, so I was the one that was doing the evaluations and making sure patients had their testing done. And then, over the years, as our program grew, because back in the day when I started here, it was, me and Kim Barnett, who is our program administrator, we were the only pre-transplant coordinators. So, we had two pre-transplant coordinators, two post-transplant coordinators, and two surgeons and four secretaries. And now we have an office of like 40 people. It's amazing. We have 12 coordinators now and three full-time social workers. Just the program has really grown. And obviously, as it has grown, I've moved into a management role to try to help use my experience to make sure that patients get the care that we want to be able to deliver for them.

I still have direct patient contact. I still have a few of my own patients. When the Hershey program closed a couple years ago, it was all hands on deck here because of 150 referrals in a matter of a month. So, everybody was doing everything to keep the program up and running. And we were seeing patients on the weekends and, you know, we were all doing all kinds of things. So, I have still a handful of my own patients because we follow our patients from evaluation until they get transplanted and they get a post-transplant coordinator.

So, it's a great nursing job because you're using your brain and all that knowledge and all your critical thinking skills to be part of a great team, because no one can do this alone. Like, surgeons need nurses. Nurses need surgeons. Social workers need financial coordinators we all truly are a team to get the patients what they need so that they have a good outcome with transplant. We've seen people like grow up, get married, and have children. They would not have been able to do that if they were not able to get transplanted.

I always call it graduation, right? Because they waited for so long. Many people are waiting, you know, six, seven, eight years for transplant. And to finally get that call, I think sometimes we're not real. It's kind of, you know, like, "Really? Are you sure it's for me?" But to help start that next chapter, because a transplant is not the end, the transplant's really the beginning, right? So, it's all those years of waiting to get this truly wonderful gift. And sometimes the logistics of getting people to the hospital become a bit of a challenge, but we work through all that. But it's extremely rewarding to see that, within a matter of a couple of weeks, these very sick people are very healthy and have so much more energy and feel so much better.

Probably one of the most rewarding things that has happened since I've been in transplant is paired exchange transplant. Because back in the day, if a potential donor would call and they were not biologically compatible, so blood type or some other reason that they weren't able to donate to their person, we'd say, you know, "Thanks for calling. But no, you can't do this," basically, which was very disheartening because if you told somebody—you know, you want to donate a kidney to help your mom have a better quality of life and to live longer, but you can't just because your blood type isn't the right type, like, what else can I do? And now, we have paired exchange where when the donors call, we don't even talk about the biological match anymore because all we really need to make sure of is that that donor or potential donor is healthy enough to donate. And if they're healthy enough, we can find a match for them and for their recipient. And there's two people that get transplanted basically instead of just one through direct donation.

So, paired exchange, in order to be entered into the paired exchange registries, you have to have a living donor. So, that's normally someone that is. Either blood type or other biologic mismatch with the potential recipient. But over the years, we have learned that we can also use paired exchange for "compatible pairs" if we want to try to get a better match for the recipient. So, I'll use the example of parents who want to donate to their children. We would prefer a better age match, if you will. So, sometimes we'll put even compatible pairs into the paired exchange so that we can get a younger kidney or a better match kidney for that potential echange.

And the more people you put into these registries, the more likely it is that people are going to get transplanted because we're exchanging kidneys all over the country. So, there's really very few boundaries for living donors. There used to be a lot of barriers to living donation because of inconvenience to the donor. So, the donors used to have to travel to the recipient center, have all of their testing, their evaluation on one day. Then, they're testing on another day and then come back for surgery at another time And then, stay because you know, they just had major surgery.

With paired exchange, the donors have the ability to stay closer to home, have their kidney removed at a center that's closer to them and recover closer to home, and the kidney is shipped. We are one organization, but we have four transplant centers within that organization. There are some regulatory requirements that transplant centers have, so we're kind of separate programs within the organization. And we have the benefit of, I guess, sharing resources is probably the best way to say that.

So, we have satellite clinics like we're going to Williamsport. We go to York to see patients in that area. The Pittsburgh team goes to different areas to have satellite clinics so that we can take the care closer to the patients, and then we as professionals have that camaraderie, to kind of bounce things off of. Like, ever have this situation, what do you do in this situation? And we have additional resources now that we're all part of UPMC as an organization.

I find that the donors usually aren't on the fence about it. When they contacted us, they usually have made up their mind that this is something they're going to do. I think our challenge becomes that the recipients, the people that need the transplant, really feel like they're going to put somebody in harm's way by asking or allowing them to donate on their behalf. So, I think education is extremely important for the community so that people do feel comfortable asking questions about it.

The transplant team's responsibility is to not do any harm to the potential donors. So, the donors go through a very extensive testing process to make sure that they are healthy enough to donate. And I always tell my donors, because, you know, donors are healthy people, they never go to the doctor, right? So if you never check your blood pressure, you never have high blood pressure. So, I always told donors that, I'm going to go out to look for things to prove that you're as healthy as you think you are. So, it's our responsibility to make sure that we're not going to do any harm now or in the future to the best of our ability.

There's always the surgical risk and there's always the risk of infection, bleeding, those kind of things with any operation, they're very small. But I think our challenge for all of this is the emotional part of it. So, we have a lot of resources for our donors. We have people that have been prior living donors that are willing to talk to potential donors, just from a practical point of view. Like, "I had these same kind of concerns and I've found that this helped me." So, having that network of people that have been there before you, I think is very helpful to people who are exploring donation.

You just have to have those relationships with your patients. Like, we're very fortunate. When I worked in the hospital, we saw our patients for a couple of days and they moved on. In transplant, we really do have long-term relationships with our patients and knowing the patients, asking the questions, because we ask some very personal questions. And we make people think about things that they probably have not thought about. "What happens if your recipient stops taking all their medications and loses their kidney, this kidney that you donated how are you going to cope with that?"

So for me, I just look at patients as if that was me, or if that was my family member, how would I want them to be treated? And this is not something that people are doing because they have a medical issue. As a living donor, they're doing this to see someone else get better. And that process is solely driven by the donor. And if it takes them six months to work through whatever it is they need to work through, that's fine. We give them every opportunity to go at their own pace, to change their mind, to ask more questions. To me, you just need to have that personal connection with people to be successful.

So, the Gift of Life Donor Program, who our OPO was approached, I think by David. And the Gift of Life, I believe, through a grant, we were able to pick five patients to participate in this pilot program. So, the goal was to try to enroll patients who were likely to wait a long time for transplant, and that didn't have any potential living donors that they were aware of. And they use social media, they use community events, they make T-shirts. They do all kind of things to get the word out to hopefully just, I guess, trigger one person to, explore a living donation. The quality of their media—I want to say ads, for lack of a better word—but their media outreaches, I guess is a better way to say that, is amazing. Just the personal, emotional side of waiting for transplant, that I don't think—unless you're living it—you have any concept of what it's like to be on dialysis every day for years until you get that transplant offer. So, it's been good for our patients. They kind of have to open up a little bit and share some things to participate in the pilot program. And I think it has helped them, I don't know, show the community what it's like to live with end-stage renal disease.

So, I know there's 94,000 people waiting for kidney transplants in this country. We have a wonderful website. So, there's lots of information on our website about donation and transplant. But think reaching out to the transplant center, talking to someone, finding out what it's all about and just start the education process. The scary part is not knowing once you know about transplant. The more you know, I think the more prepared you are when going through the process. So, just asking questions, learning about what transplant is, really does alleviate some concerns.

April is Donate Life Month. And not everybody can be a living donor, but everyone can truly consent to be a deceased donor. And I think a lot of times people self-select themselves out, right? Like, "Oh, I have this wrong with me. I have that wrong with me. No one would want my organs," and that's usually not true.

I always tell people, this is something you need to talk about with your family while you're awake and alive and express your wishes. Because asking your family to make those decisions during a catastrophic event, they're not going to make good decisions because they're so stressed. Talking about it, making your wishes known, and letting medical professionals decide if your organs are good enough for transplant or if we can use bone or tissue or whatever. Just saying yes to donation is very, very important.

Caitlin Whyte (Host): Thank you for listening to this episode of In Their Words. Transplant is not just a moment in time. It is a journey shaped by resilience, generosity, and the profound impact of human connection. If this conversation moved you, we encourage you to take the next step. Learn more about organ donation. Consider becoming a living donor, or share this episode with someone who may be inspired to help. Your voice, your choice, and your willingness to act can change a life. You can learn more about transplant services at UPMC at upmc.com. Be sure to like rate and review this podcast so we can continue sharing stories that matter. Until next time, thank you for being part of this story.