At The Forefront Live: Organ Donation
April 25, 2019
Every 10 minutes, a new person is added to the national transplant waiting list. And each year, the gap between the number of available organs and recipients waiting for organs grows larger. Now organ donation is more important now than ever before. Today on At the Forefront Live, we'll talk about organ donation and how important of course this is. We'll also introduce you to a patient who is alive today thanks to an organ donor, and we'll talk to one of our surgeons and a representative from Gift of Hope. That's next on At the Forefront Live.
And remember, we're taking your questions live, so start typing in the comments section. We'll try to get to as many as possible over the next half hour or so. Now joining us today is Dr. Talia Baker, director of UChicago Medicine's liver transplant program. We have Iheoma Okeke-Banks from Gift of Hope and liver transplant recipient, Brad Goodman.
Welcome all of you to the program. We appreciate you being here.
Thanks for having us.
Well, let's just jump right in. Because I'm sure we'll get quite a few questions from our viewers, and the first one is kind of an easy one, and it seems like kind of an obvious answer. But why do we need increased awareness around organ donation? And Iheoma, maybe you can kick us off.
Well, thanks for having me. I really appreciate being here. What's really important about organ and tissue donation is it's a life-changing and life-altering-- and as we can see, life-saving-- benefit for so many people. Every year we have people waiting for this awesome opportunity to just have a chance at life. Right now in Illinois there are 4100 people waiting for a life-saving organ transplant. So we really need to let everyone know how important this is, and what we can do to help, and just make everyone aware that this is an important part of our community need.
Doctor, let's go to you next. I guess my question would be what would you say to someone who is maybe on the fence about becoming an organ donor. Because people do have some apprehension here.
I think the most important thing to remember about education about organ donation is that people really have to understand the tremendous gap between the need for organs amongst people like Brad, who have end stage liver disease or end stage organ disease and will only be saved by a life-saving gift, and the real dearth of available donor organs. So until people really understand that gap, it's hard to convince someone that they should consider really changing the tragedy of a family member who has passed into a remarkable gift, which can save not only one, but often up to six to eight potential recipients. I think those are the kind of things that we really need to be aware of and learn how to better educate people and bring people to an understanding. I think Gift of Hope has done a remarkable job in Illinois to really increase that awareness, increase that education, and ultimately increase the amount of organs which are available for us to transplant.
That's fantastic. And that statistic that you just mentioned, six to eight people that can be benefited by donation is incredible. And it does show you how you really can have an impact and help people if you have the occasion to do that.
Brad, I want to talk to you a little bit about your situation. Because you're unique to this group in the fact that you're a recipient.
Yes. So tell us a little bit about your story and how that came to be.
Well, I've been a patient at the University of Chicago hospital for a long time. And I was diagnosed with-- and Dr. Baker can talk more about the medical specifics of it-- with a very rare condition called primary sclerosing cholangitis, which caused my liver to fail. And if it wasn't for a very generous person who made-- whose family or themselves made the choice to donate their organs, I wouldn't be here today. And most importantly, you know it's never been about me, it's been about my three girls at home who are five and under.
I'm seeing these fantastic pictures.
You have cute kids.
And they're getting bigger now too. And I also have I think about a dozen nieces and nephews, when you add it all up. So it's really been such an amazing thing for our family. And we just feel blessed every day by it.
Yeah, that's an amazing story. And it obviously worked out well for you here. You look fantastic.
Quite frankly, in a way I'm glad that I don't see any of the old pictures. Because I really did look like a different person. When you think about somebody who's very sick and not going to make it, that's what I looked like. I think I'm OK now.
It's an amazing blessing, and it only would have happened because of the generosity of somebody and their willingness to donate.
You know, Iheoma, we were at an event. I met you last week at an event that was really quite special and very touching. And it was a donor appreciation dinner.
Again, I think to kind of set the stage on this-- because a lot of times what people think of organ donation, they think of the people that received the organs-- but obviously there are families out there that are impacted tremendously on the donor side. And it was really neat to see people come together. And I think we have some video of that if we can roll it.
And this was something I thought that was pretty interesting. This is a quilt that folks were putting together. Can you kind of tell us what this is?
Yes. So Gift of Hope, several years ago, we started a project where we asked donor families to help us create a quilt. Every square on that quilt was created by a donor family who shared something about their loved one. It can be a picture. It can be a saying. It can be anything they'd like. And we add to that quilt every year. We try to create new quilts for different hospitals. And we are doing that now for University of Chicago.
One of the things that happened-- that you'll see video of here-- that was pretty neat, family members were making cards that you all hung up, and I think they're going to go in various places throughout the hospital, if I'm not mistaken.
Absolutely. So this is our first annual donor family ceremony of remembrance. And we asked all our family members to create a card, once again, saying something about their loved one. And at every recipient event we have, we will be sharing the cards of our donor families.
Yeah, you can see some of them hanging there. And what was the significance of the candles again?
So we lit a candle for every tissue or organ donor at the hospital for the past three years. And everyone who was in attendance lit a candle to represent the generosity of those donors and their families.
It was really quite touching. One of the things that was interesting about this event too is there was the opportunity for family members to get up and talk a little bit about their situation. There was a woman that spoke-- and let's watch her clip. She spoke about her-- I believe she was a lung recipient. So let's listen to that real quickly.
- And I am alive for three reasons-- the grace of God, the incredible, generous, loving spirit of my donor, and the medical expertise of my transplant team here at University of Chicago.
And then several family members also talked about their loved ones who had donated, which again was quite touching. And I just think it was a wonderful event. And hats off to you and your organization, and all the folks that do this wonderful work. Tell us a little bit about the process of matching an organ donor to a recipient, if you will, and how does that work.
Well, I'll start off and then I'll give it to Dr. Baker for more details.
When a family says yes to us for organ and tissue donation, we spend about the first 24 hours trying to make sure that we have the right bloodwork, lab work, anything we need to do to learn more about that donor. Then we connect with the United Network of Organ Sharing, which is an organization that tells us the waiting recipients. And the patients who are the sickest are matched with our eligible donor. It takes about 24 to 48 hours for that whole process to take place. I'll let Dr. Baker talk a little bit more about some of the clinical aspects of it. But that's the start of the process.
When we get an offer, we get offers for our patients who are blood type-compatible. And again, as Iheoma said, we have to look at the sickest first, who come up for those organ allocation at the top of the list. And it's important for us to really make thoughtful decisions about how best to match that potential gift with the recipient who will derive the most benefit. It's one of the real privileges of being a transplant surgeon, which I think allows us to really distinguish ourselves from other surgical subspecialties. Because we not only take care of our patients, but we also are responsible and we're taking care of this incredibly generous gift that people give. And it's our responsibility to make sure that they're placed well.
Yeah, it's a wonderful process when you see the end result. Brad obviously is an example of that. Brad, tell us, if you can, walk us through when you received your care. What was the process like for you? And how difficult-- I understand you were a little grumpy.
I heard that before we started the show.
Dr. Baker could tell you more about that.
I plead the fifth.
Tell us about the process. What was that like for you to work through the process here at U of Chicago Medicine?
The hospital here has a fantastic-- obviously, there's many different organs that can be donated. I can speak specifically about liver transplant. The hospital has a fantastic hepatology team. They have a top-notch transplant team. And the thing that makes the hospital so special is that people work altogether to make sure that the patient is taken care of, that the patient's family is taken care of, that everybody knows what's going on, that everybody has bought into the process.
For me, when I knew that I had to get a liver transplant, I had three very, very, very young children. And it was really a very frightening time. And being able to come to people here and get expert opinions and being told that this can work out, it has been just an amazing process. And I can tell you that there's certainly lots of very good hospital systems all across the country. But I have never felt more well taken care of at any other place than I have felt here. And sometimes I really wonder how it is that I got so lucky.
One of the things that you mentioned that I think is important, you talked about communication. And I've heard this time and time again, talking with patients and our doctors that communication is so important here. And I don't know that that's the case everywhere. But I do know it is here. And keeping not only the patient, but the patient's family up on the process, and kind of walking through just every step of the way. Did you did you feel that way as you were going through it?
Oh, absolutely. And I appreciate that question. I have a really big family. As I said before, I have three daughters, and tons of nieces and nephews, and four sisters, and two parents that are very active in my life, and two in-laws that are very active in my life, and my wife obviously is very active in my life. And so when you get-- for better or worse for Dr. Baker, when you get Brad Goodman as a patient, you also get about 20 other people.
And everybody felt so well taken care of that everything was always in control. And that even though liver transplant and having a major organ taken out of your body and replaced by someone else's is a very scary process, but when you know that you have experienced people doing it, it brings you a level of-- the ability to be able to be calm in the storm. And the people that are engaged in transplant medicine, they're humble about what they do. But they often really don't know the impact that they make on other people's lives and their ability to live and thrive and give back to their community. And it's a really very special type of medicine that's practiced.
And Iheoma, I imagine as you do your work, you've heard stories like this probably time and time again. And it's got to be very touching to find how a person can impact so many people even after their death. Can you kind of talk about that a little bit?
Absolutely. One of the things that we found out at Gift of Hope-- and I see it every day when I work with donor families-- is that nothing changes the tragic loss of a loved one. But having an opportunity to know that part of them lives on with someone else can really be just life-changing for the family themselves. Many of our donor families think of their loved ones as heroes. Because they saved the life of someone else who they don't even know. In most cases, they don't know, and they might never know. So it is an honor for me. It's truly an honor for me to work with people who are so generous. But it's also such a-- I love seeing and sitting next to Brad because I can see where that hard, hard decision that was made actually ends up. It's really life-changing.
Another one from a viewer, is living donation a good option for anyone on the liver or kidney waiting list?
So living donation is always a wonderful option for anybody who is either on the kidney donor list or on the liver list. Living donation is an extension of this amazing gift that people do. Bottom line, people are really generous. People are excellent spirits. They really come out of themselves to be part of all of this. Living donation is a way obviously to do that while giving a gift and really seeing the benefits of it in person.
So for a kidney, everybody-- most people have two kidneys. You only need one to have a very healthy life. So whether you are eligible to give a kidney is something that you could find out at any of your local transplant centers.
Liver is also a potential for living donation. There are many options for living donation. There are options to give to young recipients, pediatric recipients, but also adults can receive living donor grafts. So I think it's absolutely an extraordinarily important part of the whole donor process.
That's fantastic. So this is from a Goodman family member. We love you, Dr. Baker, it says.
So there you go. That's nice.
And actually that was a fantastic segue, your comment just a minute ago, about the living donor situation to a video that we have. And I want to set this up a little bit. This is a story about a man who needed a kidney. And again, I think when people think of donating a kidney, they think well, how's that going to impact me? And this is a great story because these two are runners-- and I don't want to give the whole thing away. Let's just roll it and watch it.
- We're both back running. We both feel really good.
- I really tired easily as my times got a lot slower. That's one of the first symptoms that showed up. I have polycystic kidney disease, and it's a hereditary disease. And cysts grow on your kidneys and eventually kind of choke out the actual, real function of the kidneys. It's just an amazing sacrifice. It's humbling to see him be willing to do this, and just a great friend. And it's just yeah, it's, I mean, it's just amazing.
- He's a really great guy. And like I said, he never put any kind of pressure on you, and he's like never complained. So yeah, he's a really good guy. So my kidney found a nice home.
- Rich not only participated by taking care of himself, in terms of eating healthy and keeping his weight at a healthy state and staying active, he also participated in our living donor champion program. That is a program that is unique to the University of Chicago. And what we do is we teach the recipients how to tell their story and how to go about asking others to potentially donate an organ. That's, a very difficult thing. I mean, you're not asking somebody to loan you a cup of sugar. You're asking somebody to go through a surgical procedure.
- The surgery went very well. Successful, we're both back running, we both feel really good, and we're both really happy with everything that transpired at the University of Chicago.
- This is really one of the truly altruistic things that is done. It's a gift. It's the gift of life. And it is the ultimate altruistic gift.
And I love that story because it does show that you can have a very active life as a living donor, and just what a fantastic gift that is as well. Few more questions from viewers.
High antibody patients have such longer waits. Why is that?
Do you want to take that or should I?
I'll let you take that one.
OK. Immunologically, I presume this is a question mostly about kidney transplantation. But certainly in hearts, it's very relevant, and lung as well. So patients who are sensitized, who have been exposed, either through pregnancy or blood transfusions to other antibodies, become highly sensitized. Our kidney transplant waiting list has been devised in such a way which really remarkably takes into account how sensitized you are. Obviously it's more difficult to find a match if you are highly sensitized on the list. But there are many ways to decrease that sensitization. And at University of Chicago, for example, we are involved in many national studies looking at ways to desensitize people to decrease their waiting times on the list, but more importantly, to improve their outcomes ultimately post-transplantation.
Interesting. So here's a question that I didn't anticipate, a very interesting question. This person is a double lung recipient and also a registered donor, and wants to know if the lungs possibly could be re-transplanted.
So that's an excellent question. I think every donor who comes forward is carefully evaluated by Gift of Hope. It's the real art of what they do. The baseline presumption is always somebody is an organ donor. So although it would be a very unusual situation to even consider re-transplanting those lungs, although we would never say never, there are other organs which may be considered for transplantation, and certainly tissues which may be considered for transplantation. So we encourage everybody to sign up to be an organ donor as long as you are educated about the process and really believe that that's something that you feel comfortable doing. It's a wonderful thing to do. And thank you for your question. And I think paying back the gift that you got is an amazing impulse.
Yeah, it's an incredible thought.
Iheoma, can you explain how the national organ waiting list works?
So when a person like Brad is in a situation where they know that they're going to need an organ, they go to a hospital like U of C, and they have a full workup. They go through a variety of physical and psychological tests to ensure that they are ready to accept an organ. Once they are placed on that waiting list, they're working with their transplant physicians to be ready for a possible donation when Gift of Hope has an eligible donor. That can take a short period of time, or it can take a longer period of time, depending on each individual patient's medical profile.
And Brad, were you on the list for a long time? I can't remember if I asked you that yet.
Yeah. I used to remember the exact day count of how many days I was on the list, and they moved quite slowly to be honest with you. But I know it was just short of two years.
Yeah, just short of two years.
So talk to us, Iheoma, if you will, a little bit about how the-- we already mentioned age limits, so that was good. But what organs and tissues are most needed when you are looking at your list?
All right. So in Illinois, by far, the people waiting-- the largest percentage of people waiting on the list are waiting for kidneys. So we're constantly looking at people waiting for abdominal organs-- in particular, kidneys and livers. But we have a large number of people waiting for heart transplants, lung transplants, pancreas transplants. We even have people waiting for intestinal transplants. So there's a variety of people, a variety of organs that could be transplanted.
And tissues, even though we talk a lot about organ donation, tissues are life-altering transplants as well. We have pediatric recipients that are waiting for heart valves that could actually be a bridge to a heart transplant. We have people who are, especially at University of Chicago being a burn center, who need skin transplants. Bone and cartilage are also transplanted. And of course, cornea transplants for people who are dealing with challenges from diabetes and glaucoma and other issues.
Yeah. So Dr. Baker, I wanted to do a little myth busting here because I think people-- again one of the apprehensions that people have if they're apprehensive about donating organs is they worry that maybe it will impact their care that they receive if they're in a car accident or something like that. Can you address that please?
So I think I can very adamantly say that there would never be a situation where the care that you receive in a hospital setting would be altered in any way by your decision to be an organ donor. Gift of Hope is incredibly conscientious about only coming in after a patient has clearly no other possibilities for medical care. So I would emphasize again that it will not in any way change the medical care that you will be given at any given medical center.
So do donor and recipient ever share the same doctor?
It's an interesting question because for living donation, we are actually very careful about separating the donor and recipient surgeons and teams. And the reason for that is because living donation is such an amazing gift, and it is really important that the donor has an advocate who is emotionally and professionally separated from the needs of the recipient. The donor surgeon has to have only the interest and outcomes of the donor in mind while they're doing the workup, the evaluation, the matching, and then ultimately the surgical care, and the post-operative care. So in living donation, the donor and recipient surgeons are always separated. In deceased donation, there can be situations where the surgical interventions are shared.
And this is, of course, always done with the utmost respect and dignity. And Iheoma, it was interesting during the event that I went to and that you were leading, one of the procurement specialists got up and spoke briefly. And he mentioned that even at times they'll play music that is like maybe a favorite of the donor, which really touched me, I got to be honest with you.
So for every donor, we have what's called a timeout. We ask all donor families to write something about their loved ones that we can share with the hospital staff that will be procuring their loved ones' organs. And sometimes that includes a poem. Many times it's a song. And it's always a couple of words that we have a chance to express our gratitude as professionals who have been honored by the generosity of that donor family.
And I have to say as a surgeon who's participated in this, those are the times that are really one of the most remarkable parts of being a transplant surgeon. It's really humbling to be in that situation.
So we are about out of time, and you all did a fantastic job. Just want to know if you have any parting thoughts for our viewers.
Just really briefly-- it's been a really interesting and unexpected ride to be a liver transplant patient and a successful one. But when people think about deciding whether they're going to donate their organs, they should think that people like me, who are otherwise young and healthy, are often the people that they're benefiting the most. They're not people that have abused their body. They're just people that have gotten some bad luck. And I can tell you people my age, I know a nephew of one of my good friends, who is six years old and is a liver transplant patient, and so many more. And there is nothing more generous that someone can do than be an organ donor.
Well again, I want to thank the three of you. You did a fantastic job. That is all the time we have for the program. I want to thank all of you for your excellent questions. To learn more, you can visit our website, uchicagomedicine.org or call 888-824-0200 to schedule an appointment. Also be sure to keep checking up on our Facebook page for updates on future At the Forefront Live programs. Thanks again for watching. Have a great week.
Organ donation is more important now than ever before. Dr. Talia Baker, director of UChicago Medicine’s liver transplant program, Iheoma Okeke-Banks from the non-profit organization Gift of Hope and liver transplant recipient Brad Goodman discuss.
Why do we need to increase awareness about organ donation?
Organ and tissue donation is life-changing and life-saving. Every year, people are waiting for this opportunity to have a chance at life. We are working to let everyone know how this is an important part of our community need.
What would you say to someone who is on the fence about becoming an organ donor?
People have to understand the tremendous gap between the need for organs amongst people who have end-stage liver disease or end-stage organ disease and will only be saved by a life-saving gift, and the real lack of available donor organs. Until people understand that gap, it's hard to convince someone that they should consider changing the tragedy of a family member who has passed into a remarkable gift, which can save not only one, but often up to six to eight potential recipients.
Brad's PSC Patient Story
In 2011, Brad Goodman's health started to decline due to primary sclerosing cholangitis. He was running out of time. UChicago Medicine doctors offered a solution.Read Brad's liver transplant story