Maggie McKay (Host): The decision to be an organ donor comes with a lot of questions and consideration. Plus, there are some misconceptions linked to it. So today, we are so happy to have Kathy Schultz, Manager of Marketing and Communications at the UW Health Transplant Center, with us to talk about the ultimate gift, the lifesaving decision of organ and tissue donation.

Host: This is Stoughton Health Talk Podcast. I'm Maggie McKay. Kathy, thank you so much for being here today to update us on this lifesaving, as we said, process of organ donation and tissue donation and what it involves. So for starters, why is registering as a donor so important?

Kathy Schultz: Well, thanks for having me today, Maggie. It's really important messaging to get out, especially as we are about to enter National Donate Life Month. And I would just love to remind people about the importance of registering their decision to be an organ tissue and eye donor. It's really important because it is a legal authorization, it is first-person authorization, meaning we get to make our own decision. And the reason we really encourage people to do that themselves is to save their family from having to do that should that person ever be in a situation where they could be an organ tissue and eye donor. You can understand that would be a very traumatic time for most families and loved ones to be experiencing. So having to make such an important decision might be very difficult for them. So, we like to encourage people to make that decision for themselves.

Host: That makes sense. What are some of the most common misconceptions about donation?

Kathy Schultz: Well, we don't really like to talk about them as misconceptions, maybe just misunderstandings. People do have a lot of questions about organ tissue and eye donation, and that's why opportunities like this are so wonderful. We can kind of answer those most common questions that people bring to us. We really have narrowed it down through our years of experience and from talking to many, many families. There's about eight very common questions.

The first one is really around age. Anyone in Wisconsin, anyone age 15 or older, who has a driver's license or state ID can register to be an organ tissue and eye donor. And that again is first person authorization. Those people have the right to make that decision for themselves. Now, minors may have their decision overturned by their parents, so we encourage everyone to have a conversation with their family about why they want to be a donor, so those requests can be supported should that opportunity ever arise.

Another common misconception is about medical care. A lot of people think that if they're a registered donor, that the medical team won't work as hard to save their lives. It's important to know that those are two very different teams. Physicians take an oath to protect life, and they work very, very hard to save every life. And the organ donation opportunity doesn't arise with that same team of medical doctors. Once a patient has been declared brain dead or the opportunity for life-sustaining treatment has been declared ended by a medical team, at that point, the organ and tissue donation team would be notified and would work with the family to follow the patient's wishes.

I think another common issue has been around religion. All major religions support organ donation as the ultimate gift of life. The best, most honorable thing that a person of faith could do to support their legacy would be to be an organ tissue and eye donor and give other people that opportunity for longer life, better life.

Another common question is around cost. People do worry about the costs associated with organ donation. There are no costs to the donor or the donor family. All of those costs would be absorbed by the recipient's insurance. So, there is no cost, financial cost to the donor family.

Funerals are another very common question, so people want to know if they could have an open casket funeral if their loved one was a donor, and that answer is yes. Organs are recovered in a surgical manner, very sensitive and appropriate surgical manner. And the opportunity for an open casket funeral would be preserved for any organ tissue or eye donor.

I think it's really important also to remember that this is a process that families go through and having that decision made ahead of time saves a lot of trauma and grief for the family to know that they're really respecting what their loved one wanted. It can help with some of the timing around ensuring that the patient's organs are being cared for in a way that would allow for donation to proceed, and that that family is going to be cared for along the way as well. We have very dedicated team members who go to the hospitals and work with these donor families and make sure that all of their questions are answered, all of their needs are supported. Everyone feels good about the process and what is happening and when it is happening. So, you know, I have the privilege of knowing these people and have seen them in action and can tell you that they're beautiful human beings, not only very highly trained, but with very compassionate, very dedicated work that they do with these families and really build a bond with these families. And then, they have an aftercare program that allows these families to be supported for at least 15 months after the donation process occurs. We also have a ceremony every year to honor organ donors, so those families can come together. They receive a medal from the governor, they receive appreciation from our team. We always have a recipient at this event to share their feelings about getting their gift of. So, it's a really good moment in time for these families to be reminded that their loved one was a hero and was a lifesaver.

And then, I think the other one is often around living donation. So, this has become more and more prevalent in the last several years. Living donation has been around for more than 60 years, it's how transplant started. Kidneys from a twin went into another twin and that's how the whole transplant process really started. But it's become much more common of late because the waitlists are so long, especially for kidneys. There are thousands of people waiting for kidneys. About 80% of the waitlist in this country are people waiting for kidneys. So, 80,000 people right now need a kidney. And you can donate one of your kidneys. We have two patients often call it sharin' their spare, which is lovely. And you can donate your kidney through a National Kidney Registry that UW Hospital and UW Transplant Program use. So, we can take that kidney that you want to give to someone, put it into this exchange program, find the best match across the country and save that person's life. You can also donate a portion of your liver. The liver is the most miraculous organ. It actually regenerates to the right size that both the donor and the recipient need to go on living a healthy life. And we have had patients, many, many patients who have done this, not only for someone they know and love, but also for someone who needs a gift of a liver. So, you can see how important our living donor heroes are as well. And we recently worked with a patient who had such a lovely experience donating her kidney that she decided to then come back and donate a portion of her liver as well.

Host: Wow.

Kathy Schultz: Yes, the generosity of people is overwhelming, and that's why we remind people, if you live a life of generosity and you're the kind of person who likes to help people, perhaps you're a volunteer or you're active in community, registering as a donor gives you the opportunity to continue that work even after you're gone.

Host: I love the idea of the event a year later, whenever it was, for all the families to come together. That's got to be an emotional sight. But how brilliant so that you know what, you feel like you're part of a community with people who can relate to what you've been through. Why are so many organ and tissue donors needed, Kathy?

Kathy Schultz: Excellent question, and one we do get frequently because we're always asking more people to register. Only about 3% of the population die in a way that allows for organ donation. So to be an organ donor, you have to be in a hospital, on a ventilator and been declared brain-dead or cardiac death. So, that is only about 2% to 3% of the population. So when you think about how big the waitlist is and how many people continue to not only wait, but will be waitlisted every day, it's important that we continue to think about registering as a donor and how we could help more people.

Host: And why are so many more people becoming living organ donors? I know you touched on it a little bit, but...

Kathy Schultz: I think it's a lot of education, a lot of people understanding that the waitlist, especially for kidneys, is long. So, it's an opportunity to remove those people from the waitlist. If you see someone you know and love going through the dialysis situation, it's a very uncomfortable process that these people endure. Dialysis is not a cure. It's a helpful aid, but it's really not a cure. So, we're looking to get more people off dialysis, potentially not ever have to start dialysis if they can get a new kidney in time. So initially, a lot of those kidney donations came from family and friends to get their loved one healthy. And now, we just see so many people understanding and seeing what those people mean to our communities and how many people are waiting that more living donors are saying, "I can do this. I can help."

Host: Getting the word out is crucial.

Kathy Schultz: Yes. Often with liver donation, those needs are very urgent. So, there may be a situation where you know your loved one's not going to get the liver they need in time, and that's where living donation can very, very, very much be life-saving.

Host: And you mentioned the amazing people who take care of the donors and their families. Who are they?

Kathy Schultz: So, those people work for UW Organ and Tissue Donation, which is part of the transplant center at UW Health. They're highly skilled, very experienced in this work. There's several different teams amongst that group beyond what we would think about the surgical recovery process of donation. There are people who work to create more education and awareness about organ donation and its lifesaving mission. There are people who work with the donor families and make sure that they have all of what they need. There are a lot of people who work to coordinate the process between the transplant centers, the recovery teams, the donor families, making sure all that timing is as sensitive and appropriate as possible while ensuring the precious care of those gifts. So once given, they can be transplanted. There's also people who manage quality and data and things like that. So, it's a very robust program with many, many people with so much to share, but also some of the most amazing human beings I've ever had the privilege to work with.

And I see the outcome of their work. I meet the donor families who have been through this process. They share their stories with me, which is such an honor to learn from them, to have them trust me to share their stories. And I will tell you over and over the same thing, donation saved their lives. These people are so grateful that they went through the process with their loved one to become a donor, because that gives them that legacy, that gives them that connection to their loved one's life going on. And I'm also really privileged to be able to hear the stories of the recipients. So grateful, so grateful. They know that they were given the gift of life, and most can't wait. They just can't wait to meet their donor family. And sometimes that happens and sometimes it doesn't. It's a very personal decision and we respect that. But we do coordinate that process between donors and recipients and really encourage those recipients to share their thanks. So, it really is a helpful step also for those donor families as well.

Host: I had a coworker, a friend who waited four years for a kidney, and he really was close to not making it, and he found one from, you know, 10 states away or something. It was amazing. And now, he's just better than ever, you know, back to work, healthy. What do you say to elderly people? I had a friend who was getting up there in age, like in her 80s and she said, "I am not going to be a donor, because who would want all this old stuff?" Is that accurate? I mean, I saw her point.

Kathy Schultz: Yeah, we hear that. We hear things about, "Oh, you don't want my liver," you know, comments like that. We encourage anyone who wants to be considered for donation to register. Science and medicine changes every day. And the discoveries that have happened in my last 20 years of this field of work, I never could have dreamt of. And now, they're saving more lives. So if you are the kind of person who wants to be a donor hero, register your decision. If you're ever in that position to become a donor, extensive medical testing, everything will be made safe for the recipients who might be able to receive those organs. So, we really encourage people. Don't rule yourself out. Don't listen to what anyone else has told you because it may not be true. Just go ahead and register and let the scientists figure it out, should you ever be able to be a donor hero.

Host: Okay. Thank you so much, Kathy, for your time. And if someone would like to find out more or register, where would they go?

Kathy Schultz: They can register at heroicdeed.com or they could always look at the UW Organ and Tissue Donation website, which is uwotd.org.

Host: All right. Thank you so much. Again, that's Kathy Schultz. And if you found this podcast helpful, please share it on your social channels and check out the full podcast library for topics of interest to you. This is Stoughton Health Talk podcast. I'm Maggie McKay. Thank you for listening.