Ask Us Anything About… Living Organ Donation

Barbara Schindo – And thank you very much for joining us. You’re watching Ask Us Anything About Organ Donation. I’m Barbara Schindo. More than 100,000 people are waiting every day for a life saving organ transplant. Penn State Health, Milton S. Hershey Medical Center offers a complete comprehensive donation program which includes living donor transplants, which we’ll talk much more about in just a minute, living donor transplants of kidneys and livers. Joining me today to talk about organ donation and the importance of living donor transplants is Donya McCoy. Donya is the living donor liaison at Penn State Health, Milton S. Hershey Medical Center. We’ll get to some questions with Donya in just a minute, but I want to say if you are watching this broadcast, whether you’re watching this live on Facebook now or if you happen to catch this after broadcast and you have a question about living organ donation for Donya, go ahead and put your question in the comment section and we will get an answer for you. So, Donya, this is a great time to be talking about organ donation because April is National Donate Life Month. So donate —

Donya McCoy – Yes it is!

Barbara Schindo – Donate Life Month is established by Donate Life America, and what it does is it works to promote awareness of living organ donation and encourage people, education and encourage folks who may not have known about organ donation to consider doing so. So let’s start with the basics. We want to talk about living organ donation, which I think maybe a lot of folks don’t even realize is an option when it comes to organ donation. Everybody knows about you check the box on your license to become an organ donor, but people don’t realize that you can help save a life while you’re a living donor. Can you talk a little bit about what is living organ donation?

Donya McCoy – Sure. So yes, so you can be a living donor. You can save someone’s life while you’re alive. To be a living kidney donor, you will want to be between the ages of 18 and 70, be in general good health, and have an unselfish desire to help someone else in this profound way. And then to be a living liver donor, it’s between the ages of 18 and 55, and again, be in general good health and want to really help someone from the goodness of your heart. It’s something that is really a solution to the organ shortage issue, and I think people, you don’t know what you don’t know. So if transplant hasn’t touched their life, they may not necessarily know about living donation.

Barbara Schindo – Sure, and that number, that 100,000 people waiting for a lifesaving organ, that’s a big number, that’s overwhelming. So thinking if you are an altruistic, selfless person, you can help bring that number down by considering living organ donation. So talk a little bit about why should somebody consider doing that?

Donya McCoy – So I’m an advocate for organ donation and living donation specifically because it has touched my family’s life. My daughter is a living donor liver recipient. She received a living donor liver when she was three. She is going on 11 and she’s amazing and so I am just so blessed to help a family in this way. Thank goodness for people out there that want to help, because now I get to watch her grow up. And the impact that a living donor has on not only the recipient, but the recipient’s family and all those people that love them. Think about — I encourage people to think about like if this is your dad or your brother or your sister, you would want someone to help, and so, you know, paying it forward.

Barbara Schindo – Sure. So let me ask you, this is, I guess, a little bit more of a personal question. Were you aware of living donor, of living donation before your daughter needed an organ, or was it something you learned about along the way?

Donya McCoy – I knew transplants existed. That was my education about transplants, and then when my child needed one, you learn real fast [inaudible]. So yeah, and that’s where I think there are a lot of good people in the world who want to help. Again, they just don’t know what they don’t know, and so I’m really grateful to be able to have a career where I can help spread awareness and educate people.

Barbara Schindo – Sure, and Donya, we’re glad that you’re here with us this afternoon to tell our viewers and watchers, or viewers and readers a little bit more about living organ donation. So let’s say this is somebody’s first time hearing about it and they’re thinking, you know, this is something I could consider. I’m pretty healthy. What, for somebody who’s interested in doing it, what should they know about it? What’s the process like to donate an organ?

Donya McCoy – Sure. So what they’ll do is they would first either give a program a call at 717-531-6092, or they could register online, and that’s http://www.livingdonationpa.org. They’ll go through some questions and they’ll kind of get some background health information. If all of that looks good, they will be asked to come in for an evaluation, and they’ll go through some testing to kind of see how everything looks, get some labs. We want to make sure that it is safe for the donor to go through the process. We certainly don’t want to cause any more issues for someone by doing this, and so we thoroughly screen donors to make sure that they would be healthy enough and strong enough to go through the process. And then they would actually find out if they are an acceptable match for someone, and they can do that altruistically and they can just give to anyone in need or a lot of times someone’s looking for a donor for a family member or friend, and they may know them and so they can specify that they want to get tested for that person.

Barbara Schindo – Okay, okay. You were bringing up a lot of great points that I do want to come back to, because there’s a lot of questions that pop up from this whole process, but we also do have a couple viewer questions coming in that I want to make sure that we get to. So our first question is from Judine, and Judine is asking from the perspective of if you’ve had — if you are a cancer survivor and you’ve had chemo treatment, are you able to donate or is that something that would disqualify you?

Donya McCoy – So I tell everyone to — it’s on a case-by-case basis. So register, go through the health questions and they will take a look at all of that. Some people have more chemo than others, so it’s really on a case-by-case basis. So I would encourage them to register and just talk with the coordinator about it and they’ll look at everything and give them a solid answer.

Barbara Schindo – Okay, great. That is helpful. Thank you for that, Donya. And Judene, thank you very much for your question. We have another question from Tammy, which I think you maybe touched on just a little bit, but if you decide that you want to consider organ donation, can you specify which organs you want to donate?

Donya McCoy – Yes, of course. So if you wanted — so I work in the liver and kidney program, and so Tammy, are you asking if you are the one who could specify, like, I want to give — or do you get tested and they ask you for certain organs? They don’t ask you at all. So you can register or speak to our coordinator and say I want to give a kidney or I would like to be a liver donor, and you can specify with them. I hope I answered that question.

Barbara Schindo – Yeah, she wrote back in the chat, yeah, so I think that she was asking can you say, like you said they don’t call you and say can you donate or do you want to donate a kidney, but you can go and fill out the application and you say what I’m thinking about is donating an organ, or I’m thinking about donating a portion of my liver.

Donya McCoy – Right.

Barbara Schindo – Okay. Thank you, Tammy, for your question. And we have another question from Mindy, and this may be very similar to the answer to Judine’s question, which is I’m on a blood thinner. Would I still be able to consider organ donation?

Donya McCoy – Thanks, Mindy. So, again, it’s really on a case-by-case basis. We really look at each donor’s and each recipient’s complete medical history to make sure that we’re not missing anything and make sure that it would be safe. So I would really just encourage you to go through, ask that question to our coordinator and they’ll let you know.

Barbara Schindo – Okay, thank you for that one. Thank you also to Mindy for your question, and thank you to all of the folks who are watching this now with us live, or if you’re watching this on playback. If you have a question about living organ donation for Donya McCoy, who is the living donor liaison at Penn State Health, Milton S. Hershey Medical Center. We’ll get your questions answered for you, whether you’re watching this live or on playback. Just put your question for Donya in the comment field and we will get an answer for you. So Donya, you had talked a little bit about the process for the application process and signing up. What’s the process like once your provider or the donor team at Hershey Medical Center determines that you will qualify or that you get to donate an organ? What’s the process going to look like for the patient from there?

Donya McCoy – So let’s just say that they go tested for someone that they know, so what they would do then is they would schedule the surgery and the nice part about living donation is it can be scheduled at a convenient time for both the recipient and the donor. I’ve worked with donors in the past who were teachers and the summer was a really good time for them to donate. So as long as the patient is safe and the recipient is safe to go to that time, then they’ll schedule it for that time. So that is, you know, that’s great. And so once they go through the process to be a living kidney donor, we’ve come really far in transplant and it’s actually laparoscopic surgery, which is amazing. And so a lot of our living kidney donors are discharged within just like a day to two to three days.

Barbara Schindo – Wow. And Donya, just to interject, laparoscopic means minimally invasive, right? Like it’s just a tiny —

Donya McCoy – Yes, Yep, there’s like three small incisions made, very, very small. And so there’s no like large incision or scar. And so they are, they’re discharged pretty quickly and they get back to normal activity within like eight to 12 weeks. I mean they’re back to normal physical activity in that time as well, which is really amazing when you think about it, to help save someone’s life.

Barbara Schindo – Sure. So what about for living — explain a little bit the process about living liver donation, because that might sound intimidating to people because they think, I have two kidneys, I can spare one, but I only have one liver. So how does living liver donation work?

Donya McCoy – It’s a tongue twister, too, isn’t it? Yeah. Well, what’s really amazing about living liver transplantation is our liver is the only organ in our body that regenerates. So what generally happens is they take a piece of the liver for the recipient and within a certain amount of time, that piece within the donor actually grows back completely and like with my daughter, that 25% that was taken from her donor will grow with her into adulthood. So it’s really amazing that our body and our liver can regenerate. And so it’s kind of like they didn’t really even lose that piece.

Barbara Schindo – Wow.

Donya McCoy –  For the recipient, they really gained something special.

Barbara Schindo – Yeah, wow. That is incredible.

Donya McCoy – A little bit more involved in the surgery. There is an incision, so that is something to consider, and to talk to the coordinator about. So, but it is really an amazing thing.

Barbara Schindo – Okay, you are watching Ask Us Anything About Living Organ Donation. I’m Barbara Schindo and I’m here with Donya McCoy. Donya is the living donor liaison. I keep almost — your title is a tongue twister, too — at Penn State Health, Milton S. Hershey Medical Center, and we are talking about living organ donations here during Donate Life Month. So one thing that I’m thinking is is people probably hear about living donation and they think to themselves, what if I give away a kidney and then I get sick in five years and I need a kidney? You know, some people might be scared to donate on a factor like that, but that’s — donating a kidney makes you special on the list, if necessary, right?

Donya McCoy – Yes. Something a lot of people don’t know is if you are a living donor and down the road you are in need of a transplant, you actually get priority on the waiting list. And I think that’s really special because living donation is a really special gift to give to someone and I think it’s really great that those donors are able to kind of have that peace of mind that down the road that they’re going to be taken care of.

Barbara Schindo – Oh, sure. That definitely would give the peace of mind, so not only do you get to help somebody recover from a serious illness, possibly life saving transplant, and then you also kind of would get that paid back to you if something were to happen to you, or does that include loved ones as well? Or just the person who would donate?

Donya McCoy – I believe it’s the person who donated.

Barbara Schindo – Okay. Another question that I have that might hold some people back is thinking about cost. You know, what does it cost to be a living donor?

Donya McCoy – Yeah, that’s a really great question and misconception. So I’ve talked with people in the past who’ve said I don’t think my insurance will pay for that and what’s really great about transplantation is all of the cost associated with the surgery and hospitalization, as well as getting tested to see if they are a match is paid for by the recipient’s insurance.

Barbara Schindo – Oh, wow.

Donya McCoy – So, yeah. So they may incur expense in the sense of being out of work for a short period of time, but there are — we have a social work team that is really, really wonderful and there are a lot of grants and different avenues that they can help pursue so that they can supplement some of that income for the donor while they are recovering.

Barbara Schindo – Oh, wow. That is great to hear that organizations are just trying to make it as easy as possible.

Donya McCoy – They really are.

Barbara Schindo – Yes, that is fantastic, because as you said, there’s an organ shortage, so there’s definitely a need. So that is wonderful that those programs are in place. We have another question from Mindy and I think this is a great question that you can help answer. So Mindy is wanting to know where can she go to see if this is something she’s able to do. She’d like to find out if she could qualify and would be able to donate a kidney.

Donya McCoy – Thank you, Mindy. That’s amazing. So I would encourage you to go to the website, http://www.livingdonationpa.org. You will go through like some health screening questions on there, so you can do it at your leisure, anytime. And then once you submit that, that will prompt our donor coordinator to reach out to you and give you a call, and you guys can talk more in depth at that point. But that’s amazing.

Barbara Schindo – Yeah, I agree. Mindy, thank you very much for your question there, and especially if for your consideration, because, as we’ve been talking about, this could be truly life changing for somebody. So you may be able to have a great impact on somebody’s life in that way. So speaking of impact, Donya, you work a lot with — you work with living donors and you work with the folks that also receive the organs. So what kind of feedback do you hear from the folks that you work with that donate?

Donya McCoy – Yeah, it’s really, really beautiful to see. So they’re giving this gift of life to someone else, which is the ultimate gift, but I see so many times that the donors get so much out of the process as well. It really fulfils them and makes them feel so good that they were able to impact someone’s life in such a profound way and impact that person’s family’s life. And so I have actually never spoken to a donor that hasn’t said that they would do it again in a heartbeat. Like I’ve had people say I wish I had more kidneys I could give people. But they would go through it again if they could, because it’s just so impactful for them, personally, as well.

Barbara Schindo – Now that’s — I can believe that’s a gift you don’t regret giving. That’s the gift you’re very happy to give.

Donya McCoy – Yeah. I recently had the pleasure of helping to coordinate a donor meeting her recipient for the very first time and to be present for that was really amazing and it was really touching and beautiful and it’s just something so special and until people are a part of that, I don’t think they can realize like what a special group you’re a part of.

Barbara Schindo – Sure, and how meaningful that is or how much it becomes really a part of your life, and you make this connection with somebody that — you may never get a chance to meet your donor, so that’s a great opportunity to take when you do get that opportunity.

Donya McCoy – Yeah.

Barbara Schindo – So we have a few more questions to get to, Donya, if you still have a few minutes.

Donya McCoy – I do.

Barbara Schindo – Good. So for those of you who are watching, again, thank you for joining us. This is Ask Us Anything About Living Organ Donation. I’m here with Donya McCoy, the living donor liaison at Hershey Medical Center. If you have a question for Donya, if you’re watching this live and you’re thinking, oh, I have a question that we haven’t talked about yet, please put it in the comment section. Or even if you’re watching this later, if you’re not watching it live, we can get a question answered for you. So Donya, one thing that is interesting is that there’s a mechanism to do kind of multiple, to save multiple lives at one time. I’m [inaudible] start describing it as, but it’s called a swap, and I guess the best way for me to ask you this question is let’s say that you, that somebody watching this decides, hey, I know somebody that needs a kidney. I want to see if I can donate to them. But they have somebody specific in mind and they say, they go through the process and they say I want to donate my kidney to my uncle. My uncle needs a kidney. But they go through the process and determine that they’re not a match, but there’s still an option for them to donate in a way that would help their uncle. Can you explain a little bit about — it’s called a swap, right?

Donya McCoy – Yes, it’s a very technical medical term.

Barbara Schindo – Yes.

Donya McCoy – [inaudible] or a kidney swap, and so let’s just say, Barbara, that you and I both needed a kidney transplant and your sister was going to get tested to be your donor and my brother was going to get tested to be my donor. And we found out that neither of them matched for us. However, your sister matched for me and my brother matched for you. If all parties involved are okay with it, they would simply swap the donors so that everyone can receive their transplant. So it’s really great.

Barbara Schindo – So definitely a way to encourage folks to consider, even if you don’t know somebody, even if there’s nobody that you know personally that needs an organ, think about how you can ultimately help a chain of other people who may need an organ.

Donya McCoy – Right, exactly, exactly. Yeah.

Barbara Schindo – So we have another question from Jewell, and our question from Jewell is how do you do followup with your patients such as the patients who decide to become a living donor? Do you keep in touch with them? Do you have support groups or any kind of followup?

Donya McCoy – So our living donor coordinator, her name is Amy, she’s wonderful. She makes really great connections with all of the donors, and she is actually a donor herself several years ago. So she’s the best person for our donor coordinator, and the patients really love her. And so she makes sure that followup is done and taken care of. We do have patient support groups for both our adult recipients as well as our pediatric recipients as well, and we’re able to do those virtually, which is kind of nice because of people living in different proximities, so we try to keep tabs on everybody as best that we can.

Barbara Schindo – You know, as we get to know a little bit about your story and about the transplant team at Hershey Medical Center, I am noticing a theme here that you have had your life personally touched by organ donation, and now you say so does Amy, the living donor coordinator. So that kind of really illustrates the point to me that organ donation is something that becomes so dear to your heart that you pursue it for a career, you turn it into your passion. So I think that really illustrates how much living organ donation can impact the lives of people that you are donating to.

Donya McCoy – Yeah, absolutely. And we have a special team and I really feel like everyone on our team is really invested in our patients and it’s obvious, because our patients really respond to them really positively. So it’s really great.

Barbara Schindo – I mean, it sounds like a fantastic program and a great thing to know about and to think about and consider. I really hope this conversation, folks that are watching might stop and think, you know what? Maybe I could do that. And for those folks, we have information available for you. We dropped a link in our comment section with a little bit more information about donation, and we’ll make sure to add in the comments, Donya, what was the name of this site? Living donor PA?

Donya McCoy – Livingdonationpa.org.PA.org.

Barbara Schindo – We can make sure that that link gets in the comments as well. So anybody who has interest.

Donya McCoy – And if there’s anyone that would like to speak with me more about it, I’m certainly happy to provide information or get them in touch with Amy.

Barbara Schindo – Okay, fantastic. Donya, we just have — I just have one more. This is not a question, but we have one more comment to share with you before we wrap this up, here, that came in on our Facebook page while we were chatting, and this comment is from Jackie. Jackie says God bless the transplant team at Hershey. My husband is 12 years post liver transplant. So great to hear from Jackie and it looks like she wrote about the experience in a book that she published. So —

Donya McCoy – Oh, that’s wonderful, Jackie. It’s funny how you do, like so many people who go through this process, whether as a recipient or a donor, you do just want to share the gift that was given or the gift that you were given, even as a donor. It’s really a unique community, so I encourage people to educate themselves and help if they can.

Barbara Schindo – Okay, well, Donya, I very much enjoyed chatting with you here today. So thank you very much for your time.

Donya McCoy – Thank you, Barbara. Thank you.

Barbara Schindo – And again, anybody who is watching this that notices we’re kind of wrapping up now and they think, wait, I have a question that we didn’t answer. That’s fine. You still can get your question answered. Just please go ahead and put your question in the comment section and we will get an answer for you. Again, thank you so much for joining us for Ask Us Anything About Living Organ Donation.

Donya McCoy – Thank you. Have a good day, everyone.