Every 10 minutes a new name is added to the national waiting list for organ transplants. How is the waiting list developed, and how does Penn State Health work with the United Network for Organ Sharing? We learn more from Dr. Fauzia Butt, a transplant surgeon at the Milton S. Hershey Medical Center.
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Transcript
Description – The video begins inside the Penn State Health Milton S. Hershey Medical Center. Two people are standing next to each other inside a conference room inside the University Physician’s Center. Standing from left to right are Barbara Schindo and Dr. Fauzia Butt.
Barbara Schindo – From Penn State Health Milton S. Hersey Medical Center, you’re watching Ask Us Anything About Organ Donation. I’m Barbara Schindo. Nationally, there are more than 100,000 people waiting for an organ transplant. According to the Gift of Life Donor Program, every 10 minutes another person is added to that list. Today we can talk about which organs and tissue can be donated and how you may be able to help save a life through living donation. I am joined today by Dr. Fauzia Butt, a transplant surgeon at Penn State Health. We welcome your questions about organ donations for Dr. Butt, whether you’re watching live or on playback. You can just type the question to the comment field below this post and we’ll get an answer for you. Dr. Butt, thanks so much for making time to meet with us today and talk about this. So, I addressed this a little bit, but let’s start with the people waiting for organs. How big is the need for organs and typically for which kind?
Dr. Fauzia Butt – So, there are about 113,000 patients that are waiting for life-saving organ transplant at this time. The majority of those people are in need of kidneys. So, just to give you some idea of numbers. In 2018, there were 36,500 transplants performed. About 21,000 of those were kidney transplants. And, in general, it’s about 1/3 living donors, 2/3 deceased donors for the kidney transplants. Then there’s about another 8000 liver transplants that were performed and about 3400 hearts, 2500 lungs, and then a couple of hundred kidney-pancreas, pancreas alone, and intestinal transplants.
Barbara Schindo – Oh, wow. Are you able to tell us why are– why is the list so big? Why are there so many people waiting on the transplant list?
Dr. Fauzia Butt – That’s an excellent question. So, there have been a lot of medical advances, so people with diseases that require them to get a transplant can live longer and so there are a lot more people who need a transplant. Also, the demand for transplant cannot keep up with the supply of organ donors. Now, in Pennsylvania, we have I think 4.6 million registered organ donors– which sounds amazing and it actually is; however, it’s only about 50% of the eligible people who are eligible to be registered organ donors. So, we still have a little bit of work to do.
Barbara Schindo – So, anybody who has a driver’s license, you’ve probably been asked or they’ve been asked when they’re signing up do you want to be an organ donor. So– and you said there’s, what, 4 million in this state alone registered organ donors?
Dr. Fauzia Butt – Yeah, about 4.6 million, yes.
Barbara Schindo – How– what exactly does that mean? When you sign the box and say I want to be an organ donor, what does that mean?
Dr. Fauzia Butt – So, if you sign the box on your driver’s license indicating that you’re willing to be an organ donor, when you are declared dead, they then know that your wishes are to be an organ donor. Now, it’s not enough to just sign the box. It’s really important that you make your family aware of your wishes because that way they know what you want to do and they can also help honor your wishes.
Barbara Schindo – OK. You are watching Ask Us Anything About Organ Donation with Dr. Butt from Hershey Medical Center. We welcome your questions about organ donation for Dr. Butt, whether you’re watching live or on playback, you can just type them into the comment field and we’ll get an answer for you. So, if you do– if you sign the– you click the box, you’re an organ donor, you tell your family your wishes, what can you expect? Like how are your– how are organs and tissue distributed after death?
Dr. Fauzia Butt – That’s an excellent question. So, UNOS, which is the United Network for Organ Sharing, is a nonprofit organization that’s under contract with the federal government to distribute organs. And basically what happens is when people register on the waitlist as a recipient at different transplant centers, that information goes into a national database. And when an organ donor becomes available, depending on different ways to match the donors with the recipients based on blood type and other things, then a list gets generated of recipients for that organ from each donor. And they are responsible for distributing the organs. And then the organ procurement organization– and our local one is called Gift of Life– calls us, notifies us that there is a potential organ donor for our recipient and that’s how they distribute organs.
Barbara Schindo – OK. So, if you are an organ donor, what organs and tissue can be donated after death and, for one person, like how many lives could you impact?
Dr. Fauzia Butt – Excellent question. So, through the miracle of organ donation, you can save up to eight lives and through tissue donation you can improve the lives of an additional 75 patients. For organs, you can donate heart, lungs, liver, kidneys, pancreas, intestines. For tissues, you could donate corneas, you can help restore the sight for somebody. You can donate skin, which helps burn victims. You can donate bone and tendons, which can help people who are the victims of trauma or athletes or sometimes even people in the military. You can also donate heart valves and veins.
Barbara Schindo – Wow. That is extremely impactful. I had no idea that that one organ donor could change that many lives. That’s excellent. So, let’s talk a little bit about a type of donation that maybe not a lot of people are aware of, as I had mentioned that, you know, people watching this may have an opportunity to save a life themselves through living donation. Can you talk to us a little bit about what is living donation?
Dr. Fauzia Butt – So, living donation is when a healthy person wants to donate an organ or part of their organ to a recipient. Most frequently, this is done with kidneys. Because you have two kidneys, you can donate one kidney. And the living donor is usually related to the recipient in some way. It does not have to be a family member or blood relation, but usually there is some kind of relationship. They’re either a friend or a colleague or a church member. And they basically undergo a very extensive evaluation to make sure that the donor is healthy enough to donate this organ without any medical or psychological consequences to themselves. And then we go ahead and schedule the surgery. You can also donate part of your liver and we do living liver donation here as well, but the liver workup is a little bit more extensive because you’re going to take a part of the liver. So, you have to make sure that the piece you’re taking to put into the recipient is enough for them and the piece that you’re leaving behind is enough to sustain the donor. The liver does have some tendency to regenerate, so it will grow a little bit, so there’s– but there’s a little bit more work involved. You can also donate part of the pancreas or intestines. It’s not done as often, but it can be done. And, of course, living donors donate their blood all the time. That’s another, like, donation we don’t think about. It’s not an organ, but that’s another type of donation.
Barbara Schindo – Oh, that’s a good point. I hadn’t– I wouldn’t have grouped those two things together, but I appreciate that you point that out. So, for somebody– you mentioned that a lot of people who donate organs, they’re donating to somebody that they know, either through being a direct family member or being kind of in the same circle. What about altruistic donation? Let’s say somebody is watching this and says I have two kidneys; I’ll give one up. You know, is there a minimum age? Minimum age or an age limit for these people? Are there any, like, essentially who can and can’t donate.
Dr. Fauzia Butt – So, that’s a fantastic question. So, there’s no age limit, per se, to organ or tissue donation. Basically– if you’re talking about deceased donation, it depends on the medical condition of that person at the time of their death and a determination will be made which tissues and organs are suitable for donation. For a living donation, we do require them to be at least an adult. So, they have to be at least 18 years of age because the one important thing about living donation, it has to be voluntary.
Barbara Schindo – Oh, sure.
Dr. Fauzia Butt – And if you’re a minor, you’re not capable of making that decision voluntarily. And we also have to make sure there’s no coercion when there’s a living donor involved. So, you have to be an adult and I believe the oldest deceased donor in the United States was about 92 or 93 years old. That probably wouldn’t work for living donation. Usually the cutoff is around 70 years of age, but it really depends on the medical condition of the person. Because you could have a 70-year-old who runs marathons and is in great health so that their physiologic age is actually younger than their chronological age and you could have a 40-year-old who is diabetic, hypertensive, smoking, and their physiologic age is a lot older than their chronologic age.
Barbara Schindo – OK. That has– that made me think of one other question. Let’s say that somebody is an organ donor, like on their license, but if they– is there something that may happen to them, like, during their life or at death that may take them off that list?
Dr. Fauzia Butt – To be a donor? They’re not taken off the list, but there are very few reasons why somebody would not be a suitable organ donor at the time of their death. If they’re in a massive trauma and all the organs are damaged, you’re not going to be able to transplant them. If somebody has active uncontrolled sepsis or infection, you don’t want to transmit that infection to the recipient because the recipients have to receive immunosuppression, which are drugs that prevent their body from rejecting the new organ, but it also prevents them from fighting off infection. So, you don’t want to transmit an uncontrolled infection, so that might be an issue. If they have active cancer at the time of their death, depending on type of cancer, that may be a contraindication, but there are very few things that would rule somebody out. So, if people are saying to themselves, oh, I have this medical condition, I don’t think they want my organs, I don’t think I would be an appropriate organ donor, don’t rule yourself out. You have much more to offer than you know.
Barbara Schindo – Oh, very good. That’s good news that it’s very rare to not be able to do so. You are watching Ask Us Anything About Organ Donation with Dr. Butt at Penn State Health. We welcome your questions for Dr. Butt about organ donation. If you are either watching this live or you’re watching it on playback, you have a question, just type it in the comment field and, whether it’s today or later this week, we will get an answer for you from Dr. Butt. So, let me ask you this. If people watching this say, hey, I want to be an organ donor, I want to– maybe I want to do a living donation, where can they get more information about that? What’s the best way to do that?
Dr. Fauzia Butt – So, they can call our living donor coordinator. We can post the number afterwards, but basically they can talk to her, get some information, and they can find out a little bit more about living donation. If it’s not for them, no problem. Making the phone call does not commit you to donating an organ. If they’re interested in knowing more, we can schedule an evaluation appointment and have them seen. I realize I didn’t completely answer your altruistic donor question either because we started talking about something else. So, if someone’s interested in donating an organ, whether it’s kidney, liver, or whatever, they can also call our transplant center, speak to our living donor coordinator, and even if they don’t have anybody in mind to donate to, there’s what’s called a transplant chain that can be set off by the altruistic donor. Basically consists of multiple incompatible donor and recipient pairs and the altruistic donor, if they, you know, undergo the evaluation and they’re found to be medically, psychologically able to undergo donation, they would donate to the first recipient in that incompatible pair. That recipient’s incompatible donor would donate to the next recipient and so on and you can have– start a whole chain of transplants.
Barbara Schindo – Wow. That’s incredible. Dr. Butt had mentioned we’ll share the information to contact our living donor coordinator. We’ll share that in the comment field and we’ll also share we had mentioned the Gift of Life Donor Program, which is our local program. We will share a link for that too for anybody who may be interested in getting some more information about organ donation. We have a question from Linda. Linda is asking can a heart that has had bypass be donated.
Dr. Fauzia Butt – So, without knowing the specifics, probably not because a bypass indicates that the heart has some disease, but when an organ donor is being considered, they usually do a whole bunch of tests to see what the status of the organ function is. So, if I had to just go with that information, probably not, but you don’t know. I mean if the bypass is open and the heart’s healthy, there is a possibility, but it would– it would be determined at the time of the donation.
Barbara Schindo – OK. So, I want to ask you about one of the possible– we’ll call it a myth that surrounds organ donation. I’ve heard– I’m sure you’ve heard this. I’ve heard people say I don’t want to check the organ donor box because if I am– if doctors know I’m an organ donor and I’ve been in an accident or some kind of trauma, they’re not going to work as hard to save my life because they want my organs. Is that– is there any truth to that?
Dr. Fauzia Butt – Absolutely not. That is a very common misconception and not just out there amongst laypeople. Sometimes people in the medical field believe it too, which surprises me. But, when you come into an emergency room or to a hospital for treatment, you are the patient, and the only thing doctors and nurses care about is taking care of you and saving your life. Now, in the unfortunate event that somehow you die from your injuries, it’s a very extensive trauma, it’s only when death is declared that the people at the hospital look into whether or not you wanted to be an organ donor because they want to honor your wishes. So, nobody cares about your organ donor status when you’re there as a patient until after death. If you die, then they just want to honor your wishes.
Barbara Schindo – And you had shared with me too when we were talking about that kind of a list of other well-known organ donation myths. What are some that you want to let people watching know are absolutely not true?
Dr. Fauzia Butt – So, many people believe that you can buy and sell organs and tissues and the federal government specifically prohibits buying and selling of organs. That is illegal and the transplant community completely says that it is illegal, so that is not something to be done. If somebody’s offering you an organ for sale, you should be very suspicious. Some people also believe you can’t have an open-casket funeral after donation and that’s not true. You can have an open-casket funeral. The donation– when we do the surgery for recovery of the organs, it’s a surgical incision and it’s a surgical closure. You can absolutely have an open-casket funeral. Some people also believe their religion may not condone organ donation. All major religions approve of organ donation and they see it as a last, you know, selfless act of saving someone else’s life or multiple lives as the case may be. There are many, many myths that are out there that are not true and we can post them on the link afterwards if that would be helpful for your audience.
Barbara Schindo – Oh, I think that would be very helpful. We can share some more information about that. And just one more that comes to my mind– which I’m sure is also absolutely not true– is that rich or famous people will get on the transplant list faster or get bumped up to a more priority spot. That’s not true as well, correct?
Dr. Fauzia Butt – That is a very common myth as well. When the list is generated by UNOS, they don’t know anything about your name, your economic status, your race, nothing. They basically just make the match based on blood type– for kidneys, it’s blood type, it’s priority for pediatric patients, it’s time that you spent on dialysis, and then there’s some matching that has to do with HLA and PRA. PRA is panel-reactive antibody. It’s a number from 0-100% that indicates how many antibodies a person has. Antibodies can develop from previous transplants, from blood transfusions. Our women are at a disadvantage because they can develop antibodies during pregnancy against the antigens of the father. If you have a 0% PRA, it’s going to be relatively easy to find you a match. If you have 100% PRA, it’s going to be a bit more challenging because you have antibodies to a lot of the antigens out there. There is some priority if you have a high PRA of 98-100%. There is also the HLA match. So, from each parent, you inherit three HLA; A, B, and DR, so you have a total of six. If you match all six, that’s a six-antigen match, you get priority because, in general, patients who have all six antigens match with a donor do better. Now, we can do completely unrelated transplants between spouses where the match is completely not there, it’s a zero antigen match, because our immunosuppression is so good, but you do receive priority if you match certain antigens. DR gets points and if you match all six you get extra points. So, people’s celebrity status, money, socioeconomic status, none of that takes any place in the distribution of organs. UNOS does it and it’s all done blindly based on medical data.
Barbara Schindo – Oh, good. Thank you. That’s very helpful. I have– we have another question from Linda who is also wondering– she said that she has had multiple concussions in her life and suffers from post-concussion syndrome and she wants to donate her brain to somebody who is doing research. What about folks who want to do something like that? Is that possible?
Dr. Fauzia Butt – You can absolutely donate your body to science and research. We cannot perform brain transplants at this time, so you would not be able to donate your brain for a transplant, but if you wanted to donate that your organs that are transplantable for transplant and then donate your brain for research, you can do that too. Some people also like to donate their bodies to medical schools for gross anatomy lab so upcoming doctors can study gross anatomy and learn about the body. If you’ve already been an organ donor and they’ve taken some of your organs, you won’t necessarily be the lesson of the abdomen or the chest for that segment, but maybe you can be teaching them about the arm or the musculoskeletal system or the leg. So, you can absolutely donate your bodies to science and organ donation as well, if that’s what you should choose.
Barbara Schindo – Wow. I had no idea. That’s great, knowing that you can do both if that are your wishes because that can be very helpful to the next generation of doctors, as you said, as well as saving lives. Well, thank you very much for joining us for ask us anything about organ donation with Dr. Fauzia Butt. We hope this information has been useful to you and perhaps some folks watching are considering maybe living donation is something for me or maybe checking that box on your license is something for me too. So, again, if anybody has any additional questions, ether you’re watching on playback, feel free to put them in the comment field and we will get an answer for you as soon as we can. Thank you.
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