Surprising Facts About Organ Donation with Dr. Alyson Fox

Faith: Faith here. This week, Angelique Serrano hosts a fascinating conversation about organ donation and transplants. Her conversation includes common myths, surprising facts, and what it means to be a donor.  

Angelique: Welcome to Health Matters, your weekly dose of the latest in health and wellness from New York Presbyterian. I’m Angelique Serrano.

This week, I’m joined by Dr. Alyson Fox, Medical Director of the Adult Liver Transplant Program at New York Presbyterian and Columbia. We explore the process of organ transplantation from preparation through recovery. And Dr. Fox shares some amazing insights about organ donation that all of us should know. 

Angelique: Welcome, Dr. Fox, to Health Matters. We’re so happy to have you today.

Dr. Fox: Hi, thank you for having me. I’m so excited to spread the word about organ donation, which is such an important topic.

Angelique: Are there some big picture statistics about organ donation that you could share that might help us understand that landscape?

Dr. Fox: There are thousands of patients in the U.S. waiting for all sorts of transplants every year, and that is because the simple issue is that our demand exceeds our supply and that’s really for every single type of organ that you can imagine. And specifically I’m talking about not only livers, but kidneys and hearts and lungs. Those are the main solid organs that we transplant. 

So, in this country, every year there’s, you know, anywhere from 14 to 17,000 patients, let’s say, waiting for a liver transplant and really only seven to nine thousand, depending on the year, get transplanted. So that’s a significant number of people who are still waiting at the end of a given year.

Angelique: So which organs are actually possible to transplant?

Dr. Fox: All organs can be transplanted, um, with deceased donation, and that’s gonna be lungs, hearts, kidneys, livers, pancreas, um, corneas, even skin can be transplanted in people like who are burn victims, for example. And live donations can be undertaken in liver and kidney.

Angelique: Well, let’s talk about the two different types of organ donation. So you can have a living organ donation and a donation that comes from a deceased donor. So can you explain those two for us and how they differ?

Dr. Fox: Absolutely. So living donor at this point is really limited to livers and kidneys, and patients who are awaiting a transplant in order to get on a transplant list have to undergo medical testing to ensure that the rest of their body is healthy enough to get through something like a big transplant surgery. And similarly, living donors also go through a variety of testing to ensure that it’s safe for them to undergo a donation. But, it’s one of the things that our program prides itself on that we have this aside from just waiting on the donor list for a deceased donor, and we’ll talk about those in a second, we’re able to offer this alternative to patients. One of the big benefits of live donor liver transplant is that once you’re on the list, you don’t necessarily have to wait as long for your transplant because you have almost an elective scheduled surgery when you have a live donor identified. 

The deceased donor process is essentially we have to wait for  a number of blood test values indicating how sick the liver is, and also, your blood type and kind of your size also goes into it. Based upon a combination of several things a donor is identified, a brain dead donor is identified. But, in general, that’s a little bit in terms of timing up in the air because we can’t necessarily predict when a brain dead donor will become available for a patient other than, if they’re really sick, we expect that they’ll be close to the top of the list and get a call for an organ offer at that time.

Angelique: Well, what do you wish more people understood about organ donation? Are there myths out there that you wish people would know are just that, a myth?

Dr. Fox: Yeah, yeah, absolutely. So, the first thing I wish is that more people knew that live donor liver transplant was a possibility. One of the things we take a lot of time in doing is educate about the fact that, yeah, you can get a live donor liver transplant. You know, nobody wants to sit around and wait to get sicker to get their transplant. We want to be able to transplant people when they need it, but also when they’re in a physical condition where they would do well and have a really smooth postoperative course. 

So I wish everybody knew that live donor liver transplant is a thing and that we can do it and we can do it well and donors do wonderfully well. We want to make sure that people realize, you might actually have improved outcomes because people who have living donation actually have improved outcomes over people who undergo deceased donation.

Angelique: Interesting.

Dr. Fox: Yeah, another misconception is that a lot of people obviously are nervous about having their loved ones come forward and donate for them. They don’t want to put them in harm’s way but we spend a lot of time reassuring people that first of all, we put them through a very thorough evaluation to minimize any potential risks, um, that the donor has. We don’t kind of cut corners or let people come through to donate who we did not feel would, um, tolerate the procedure really well and be successful in their donation. We do spend a lot of time ensuring the safety of our donors. And I think it’s important for everybody to realize it.

The other, um, misconception with live donation, I haven’t even gotten to the braindead donation yet, is that patients think that, oh, it has to be somebody who’s a blood relative, and that’s actually not true. Anybody can be, um, a live donor. It can be a friend. It can be somebody in your community. 

We even have people who do what’s called non-directed donation, just these really benevolent people who come forward and say, “Hey, I want to do something good. I read about this. I want to donate a piece of my liver to just somebody who’s in need.” Oftentimes these people don’t even meet their recipients. As long as your blood type is compatible and the size is compatible–that’s something we determined during the evaluation–anybody can be a donor.

Deceased donation, otherwise known as brain dead donation, when somebody has a catastrophic injury, like a really bad stroke or an accident where they’re not going to have a meaningful recovery. I think that there are a lot of misconceptions. People think, well, if I’ve signed up to be a donor and I signed the back of my license and the EMS people come to save me, they’re not going to work as hard to save me because they’re going to want my organs for donation. And that is absolutely not true. We work our hardest to save everybody who comes into medical care for whatever reason. And there are certain strict criteria that are looked at when deciding if somebody, once they are declared brain dead, if they can be a donor, so it’s not even something that’s automatic.

Um, other myths I’ve heard are that “my family will incur lots of charges and medical bills” and that’s absolutely not true. Donor families are not charged anything for that. People have concerns about, you know, “I can’t have an open casket.” Also totally not true. The organ donation process is actually done in a way that’s very respectful, to people who are donors. During the donation there’s even, you know, a moment of silence for this person. And it’s something that is really actually a beautiful process.

Angelique: Well, let’s say someone now is inspired to look into becoming an organ donor. Can you share a bit more about who might be a great candidate for becoming a living donor?

Dr. Fox: Donors have to be healthy in general. Um, and what that means is no major chronic medical conditions. We don’t allow donors who have a history of diabetes to donate. Um, we allow patients who have high blood pressure but it has to be well controlled on only one or two medications. So healthy is number one. Number two, we do have some age requirements. Donors can be between the ages of 18 and 59, it just allows us to keep the pool of donors as young, healthy, active people who are very unlikely to have other diseases. Donors have to come forward of their own free will. Donors cannot be actively smoking cigarettes or using drugs or have any substance abuse problems. And they have to be in a place in their life where they can undergo a donation because it is a surgery and while most of our donors, um, are back to work by six weeks after their donation, we do tell people that sometimes it takes people longer to recover than others. People with more physical jobs, you know, tend to need a little more time off just because we don’t want them engaging in any heavy lifting or really tough labor, um, just because there’s a risk of hernia but people who have a little more sedentary job sitting behind a desk on their computer tend to be able to get back to work as early as four weeks.

And we see the donors in follow up, a week after they’re discharged, then six weeks after they’re discharged, then around four months, and then we see them, um, at a one year after the donation. Most people are like 80 to 90 percent regenerated by the time we get that four month MRI. So it’s something that happens really swiftly.

Angelique: Wow.

Dr. Fox: Pretty cool. 

Angelique: That’s absolutely amazing!

Dr. Fox: Yeah. Yeah. And our recipients for live donation once they’ve been through their evaluation and get put on the transplant list, and their donation is scheduled, usually recipients are in the hospital for a little bit longer just because, you know, they have been sick with liver disease before and there’s a little more that has to go on, that we have to put them on the anti rejection medications. We monitor blood work every day, sometimes two times a day. They have to undergo physical therapy, um, and, once they’re doing well, they’re also discharged usually within, um, one to two weeks of their surgery and recipients are seen in the office usually on a weekly basis, you know, checking labs, making sure their surgical site looks okay, usually about once a week for the first one to two months, and then it spaces out slowly over time. You know, the goal is for people to get back to a normal, healthy life. That’s why we did this. And so, you know, frequently we’re chasing patients down. They’re like, “Oh, I’m on vacation.” “Oh, I’m, you know, back to work.” I, you know, so, so it’s really remarkable. I mean, that’s what we want. 

Angelique: Well, we’ve talked a lot about the physical process of organ donation, but there is a huge mental and psychological component to a process like this. And I wonder if you can share a bit of insight into how people have felt. 

Dr. Fox: One of the first things that comes up is people are scared. It’s scary to undergo surgery for any reason. Most people, you know, never think that they might face something like a transplant during their life. And certainly if you do face it, it’s probably the most eventful medical thing that will happen to you in your life. And so, I think receiving an organ from somebody must just be so impactful. I mean, this is somebody who actually literally saved your life. It’s a gift that you can never thank somebody enough for really. Um, but the way, you know, you thank somebody for it is taking the best care possible of it after the transplant. Um, and going on to live a great life because that’s why they did this, so that you could go on to live a great life.

Angelique: Mm. And it’s great to remember that one transplant can save several lives. Not only the life of the direct recipient, but the lives of everyone else on that wait list.

Dr. Fox: Absolutely. Yeah. One donor can save, I think it’s about eight lives. You’re allowing somebody who’s dying of a disease to get a second chance at life. I mean, it’s, I can’t imagine the gratification, something like that would bring to a donor. 

Angelique: Well, Dr. Fox, again, we cannot thank you enough for sharing this advice for people who might be thinking about becoming an organ donor and might have found the information that they need from this conversation.

Dr. Fox: Thank you so much for having me. I’m happy to get the word out, and I encourage more people to register to be a deceased donor, but also think about being a live donor.

Our many thanks to Dr. Fox.

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