Joy Cardin: The United Network for Organ Sharing reported a record number of more than 33,000 organ transplants last year. On top of that, Wisconsin also saw an increase in organ transplants with a little more than 800 taking place. Dr. Zimmerman, what do you think is behind this increase?
Dr. Zimmerman: There are several reasons. You see a national trend that’s also reflected statewide for us, and so I think a couple things. First, is that education about organ donation is starting to reach people in smaller areas and hospitals. In terms of national and statewide education efforts, I think [these] are really starting to take hold. And I think people are learning much more about organ donation today than they were just a few years ago. Second, the organ procurement agencies that manage the donors once they become a donor are doing a much better job of medically managing the patients immediately prior to donation. I think what we see, as a result, is that more organs per patient are viable for donation. It’s multifactorial, but there are a number of places that have seen a dramatic increase in their efficiency, and I really think community education and patient management have played a key role.
Joy Cardin: What is medical management? Why is that better now and resulting in more organ donation?
Dr. Zimmerman: An example is probably the easiest way to understand. If a patient has an irreversible brain injury and becomes a donor, and the family has consented or the patient was part of a donor registry and indicated that they would like to be a donor, there are a number of ways we can improve the chances for transplantation. Let’s say, for example, the lungs. I think today we’re much more aggressive at fluid management and other practices that would affect the heart or lungs, making them now more transplantable.
Joy Cardin: Nationally, 18 percent of transplants involved organs from living donors. Let’s talk about living donation. What does it mean to be a living organ donor?
Dr. Zimmerman: Living donation predominantly refers to the abdominal organs, the kidney, most notably, and the liver. Somebody can donate one of their kidneys to another person and it can be transplanted quite successfully, and the recipient can do well. But the donor portion of that requires an enormous amount of information transfer between the program, the hospital and the potential donor. We have to educate donors up front that this is a surgical procedure. From there, we discuss what it means, what we can do with it and the implications for the recipient.
Joy Cardin: When you get a kidney for a recipient, is it often from a living donor?
Dr. Zimmerman: Many times it is. Many programs across the United States transplant about 50 percent of kidneys from living donors. The other 50 percent are from deceased donors. Our mix [at Froedtert & MCW] is about 60/40. About 40 percent of what we do is from living donors. But as you can imagine, that changes over time, and I think nationally, as this education wave becomes more prominent and gains some steam, you’ll see the number of living donors with regard to kidney will continue to go up.
Joy Cardin: We did a show a couple of years ago about a brother who donated one of his two kidneys to his sister. It was quite fascinating how that can work. We can do this with the liver now, too?
Dr. Zimmerman: We can. There are a number of different procedures we can utilize in both living and certain deceased donors where we can split the liver. Predominantly in living donors, we’re able to either split it 50/50, right versus left side, or two-thirds/ one-third, where we take the smaller one-third and transplant it to a child. It just depends on the situation and how big the donor is and who the potential recipient is. It’s not just in living donors for liver transplant but also in select deceased donors, where we can split the liver and two people can benefit from that.
Joy Cardin: If people are interested in becoming a living organ donor, what steps should they take?
Dr. Zimmerman: Today, the internet is a very powerful tool. We direct our potential donors to our website. For our program, people go to froedtert.com for information on transplant. The website lists a phone number to call directly or you can enter your information and our staff will contact you. We have a number of coordinators, one of whom has even been a donor, who go through the information and start the process. Coordinators contact the potential donor and go from A to Z in terms of educating the person about what being a living donor entails.
Joy Cardin: Do we need more living donations?
Dr. Zimmerman: Absolutely. I think with regard to kidney transplant, the number of people needing kidneys is not going down. Liver transplant is the same way. For example, there is a list of approximately 16,000 people nationally on the wait list for a liver. There aren’t enough livers to even transplant half of them. Some people will die while they’re on the wait list. That’s really what we’re trying to prevent. There are not enough of any of the organs people need.
Joy Cardin: It truly is a lifesaver isn’t it?
Dr. Zimmerman: For sure. The one thing we do know is that this particular space in medicine works. And it works immediately. If you’ve seen someone with end-stage liver disease, there’s no dialysis machine that can help. If kidneys don’t work, we can put you on dialysis, though we know it’s not good [long term]. We want to get you to transplant; that’s the ultimate goal. For liver disease, for end-stage liver disease, there is no dialysis to keep you going until you get a transplant. It becomes a life-and-death situation. But when a patient undergoes a liver transplant, if everything goes smoothly and it’s a functioning liver, it’s like night and day. They turn around almost immediately. They walk out of the hospital and go out and live a healthy, productive life the majority of the time. That doesn’t mean it’s not a high-risk procedure. What we do know is that it works.
Caller: Could you address some of the myths or concerns surrounding organ donation?
Joy Cardin: Yes, I think some people are afraid that maybe their organs will be taken before it is clear they are brain-dead.
Dr. Zimmerman: The crux of that issue is trusting in your care provider and trusting in the medical system that the appropriate things are being done at the appropriate time. One of the things we’ve learned in the past several years is communication between the donor family and our organ procurement organization (OPO) is important. The OPO is in charge of doing the consent and talking to the family. It has social workers and other coordinators that walk the family through the process. It’s a third party. I’m not involved in that; obviously that would be a conflict of interest. For the OPO, it’s important to communicate well with the family and go through details multiple times before any donation takes place so it’s crystal clear to everybody because families are very dynamic; it’s not just one person. Sometimes there will be a spokesperson or a person making the decision, but there are five or 10 other people who may agree or disagree and who want the information as well. So it can be a very difficult challenge to get everyone on the same page. Number two, sometimes people wonder, “How do I know what they’re going to take? I know they’re going to take a liver and kidneys, but how do I know if they’re going to take something without telling me?” That comes back to communication with the families before and after the fact. Saying, “This has been donated, this is where we are, thank you for your gift, etc.” [It’s important to keep] them abreast of the issues as they’re going through the process, not just have them sign a form and then their loved one is taken away.
Jay Cardin: Right and, generally speaking, no hospital ever is going to say, “Let’s not really take care of person X because person X isn’t so important while person Y is next door needing a liver transplant.”
Dr. Zimmerman: That’s exactly right. Most hospitals, and I can speak for ours, our hospital goes to great lengths to make sure that everything and anything is done for all donors and recipients no matter what phase they may be in. We go to hospitals throughout the state to do donor surgeries, and I have never seen that kind of activity. Most hospitals in the state that we’ve been to are committed to this. They understand it, they’ve been educated and they know what to expect and what the process is within their own hospital in terms of donating the organ. It’s really been a fantastic experience to get out there and talk to those people.
Joy Cardin: And respond if you will, our caller said this was a real spiritual gift, a heart transplant saved the life of her father, and he was able to live 10 more years and to meet his grandsons.
Dr. Zimmerman: Yes, I think that’s another really good point that isn’t necessarily obvious at the beginning of the process. It’s one of those things that comes out of the experience. It’s not just the recipient going through it, the family of the donor and recipient are going through it as well. It’s very common for the recipient to want to remember the donor and want to honor the donor because of the gift that they received. That extra 10 or 20 years impacts families dramatically.
Joy Cardin: Is [the donor’s name] public knowledge? Can you know who the donor is?
Dr. Zimmerman: It’s not public knowledge. It has to go through the OPOs and the donor family. There are mechanisms by which to do that if the donor family wishes that to be the case. But for the most part it’s kept anonymous.
Caller: I had a liver transplant in September 2014, so it has been two years. I was born with a rare liver disease. I had a procedure done when I was a baby. Years ago, most babies [with this disease] died before they were 2 years old. So I was fortunate for my liver to last until I was 40. But I was sick; I was on the liver transplant list for over six years waiting for a liver. I was in and out of the hospital and in bed all the time. I would sleep for three days. I have three children and I wasn’t able to do things with and for my children and just be a mom. I almost died in September 2014. I was really sick. A liver came for me and saved my life. I wouldn’t be here without the donor’s family donating her organs. You talked about the families and how it affects them, the recipient and the donor family. When you’re a recipient, you also go through guilt because you think somebody died to save your life. I tell myself that’s not really the truth. Because her family decided to donate her organs, I’m able to see my kids grow up.
Joy Cardin: A couple of points there to follow up on. It’s not always that once you get a liver transplant or any other kind of transplant that everything is smooth sailing from there on out.
Dr. Zimmerman: That’s absolutely right. I think she brings up an excellent point. A liver transplant is one of the biggest operations a human being can have. It’s very difficult beforehand because the person is chronically ill. They undergo an enormous operation, and then it becomes even more difficult afterwards. [Then comes] the rehabilitation phase when we’re trying to get people up walking, get the nutrition back, etc. One of the things she brings up is the emotional impact. These patients are very smart people. They’re abreast of the issues. They are chronically ill, and they understand it most times. It is not uncommon for them to have psychological issues that pop up afterwards that might be similar or different from the ones they had before. One of the ways that we as a division of transplant at Froedtert & MCW handle this is that our director of the Solid Organ Transplant Program, a joint program of Froedtert & MCW Froedtert Hospital and Children’s Hospital of Wisconsin, Johnny Hong, MD, has put in place something I think is very unique. We have, along with surgeons, two psychologists. We don’t have to refer people to psychiatry. Our psychologists are part of our division. They get to know our patients beforehand and follow them afterwards. So when psychological issues pop up, our patients have someone to talk to and figure out what the issues are. The surgical part of it is just the beginning. We follow patients for the rest of their lives, and these issues are not uncommon.
Caller: My husband was acutely ill with liver disease. Three livers became available, but they were all diseased and he passed away. I just really want to underline how important it is that all of us really give serious consideration to being donors. I will also say that being in that waiting posture is excruciating. Every day, when the doctors came around with the various teams that had to approve him, we just held our breath that they would say, “Yes, he’s still a viable candidate for a transplant.” It was extremely stressful.
Dr. Zimmerman: This is another great point. That scenario she just outlined is not uncommon. You have to remember that transplantation doesn’t end at 5 p.m. Our lives are a little strange in that organ procurement is a 24 hour per day job. And when those organs become available, like a potential liver, we have to go look. There’s a huge emotional price to pay on both sides for the donor and the recipient when a patient is this sick. This is a unique space within medicine where all of these psychosocial and emotional issues surround very complex surgical decisions. Now, it’s not uncommon for us to go to Jacksonville to try to get a liver for one of our patients who is near death. Our job, no matter what time of day or evening it is, is to advocate, push and try to get that patient transplant. What you don’t see is you’ve got 200 people working to make sure you get that organ, from the coordinators, to the operating room staff, to all the nurses on the floor, to the hospital administration. You’ve got a couple of hundred people on your side trying to advocate for your transplant. I’d like to say most of the time we’re successful, but really, about half the time we’re successful because there just aren’t enough organs.
Joy Cardin: Is there a typical wait time on the list?
Dr. Zimmerman: [That depends on] the acuity of the disease. Many liver diseases are smoldering diseases where the patient is not dramatically ill, but can become ill at any moment. They may continue over four, five, six years and become increasingly worse. There are also some patients who have been fine and then get acutely worse, as well as people who were totally healthy with no probable liver issues, who have an exposure and become the sickest of the sick overnight.
Caller: I’m calling because I’m curious about live donation. I’ve heard that if you want to be a live donor you have to assume all costs related to the procedures to determine if you’re in good health and have an organ that can be transplanted. Is that accurate and is insurance or funding available?
Dr. Zimmerman: No, you’re not responsible for all of that. What we do ask is to have some sort of primary care provider in case you develop anything. Let’s say you donated a kidney today, obviously we’re here 24 hours a day. We would see you immediately. And when I say immediately — I mean come straight to our hospital, and we will see you at any time. A lot of these donors are very young, in their 20s, and they’ve never had a primary care provider because they’ve never been sick. But we do try to make sure people have extra follow up as well, make sure their blood pressure is OK on a regular basis, that kind of thing. In terms of the workup, I don’t believe you’re responsible for the cost of that. Also, we’re not trying to actively advocate for who you donate to, whether it be a stranger or a friend. We go with what the potential donor’s wishes are, and it’s becoming increasingly common for donors to say, “I wanted to donate to my brother, but he got a kidney, but I still like the idea of donating.” So we would advocate and do everything we can to allow them to donate. On the other hand, several people were recently going to donate, but then the recipient got a kidney from another donor, and then they were OK with not donating, which, of course, we’re fine with as well.
Joy Cardin: Generally, is it safe to be a living donor?
Dr. Zimmerman: It’s very safe to be a living donor. It’s very rare that living donors have any major problems. Of course, we go through the risks and the benefits very carefully multiple times, and we make sure donors realize there is no direct benefit to them; they are benefiting somebody else. They’re going to undergo a major surgical procedure. Most of our patients are very smart and know what it entails after we have those conversations.
Caller: I gave a kidney to my brother in 2010. He had insurance, and the recipient’s insurance pays for everything. There was no cost to me. But I’m calling because I felt compelled to call. I lost my brother in August of this year, and this is probably one of the first times I’ve been able to talk about it. I’m very passionate about it. He got sick in 1999, and one of my other brothers donated a kidney to him in 2002. He had a rare kidney disease and it was in his blood, so for any additional kidney he got, the disease attacked the kidney. To me, that didn’t matter because I love him so much that I would do that for him. There were two live donors in our family who donated to my brother who just passed away in August at 56, and I do agree it’s a very traumatic experience. Our family has always been close, but it just made us so much closer, so much more understanding. We were always there for each other, and at the end he felt like a burden to his family. He had a really hard time going through the second transplant. There was no question in my mind, but it was very difficult for him. And he never forgot to thank you for it and be grateful, and he got to see his kids grow up, and that was his wish.
Dr. Zimmerman: I’ll just reiterate and thank her for being a donor and thank the other donor. I think this underscores the previous caller’s comments that it’s really tough because you have multiple facets of groups of people. You’ve got the donor family, the recipient family, medical doctors, surgeons and OPOs from where you’re trying to get the other organ. This is a very unique place in medicine where, as a result of all these different things, someone’s life can be saved. The question is, how long will that person be alive? Are there going to be any complications as a result of recurrent disease, as in this case, and if there are, can they be retransplanted? All these complexities add up and you realize, in the big picture, that the fact that this works in the first place is amazing.
Caller: I’m calling because I’m a living liver donor, and I donated a lobe of my liver in 2004. As a donor I can’t say enough. People say I’ve given so much, but what I’ve gotten in return is tenfold. It’s such a deep spiritual connection with the person, and it’s just the greatest experience I’ve had. You just get back so much more than what you give.
Dr. Zimmerman: Thank you for being a donor, that’s a wonderful story. It really underscores the importance of really being very careful. You take someone who is totally healthy like this wonderful person, and you’ve really got to make sure every part of your operation is done perfectly. That’s not just the surgical part; it’s the pre-op part, the surgical part, the post-operative care and then the follow-up. It’s a huge operation, but every part of it has got to be done perfectly. We don’t want mistakes or complications with somebody who walked in the door who is totally healthy.
Joy Cardin: What is the post-op recovery and medical management for the donor?
Dr. Zimmerman: That’s a great question. If it’s a liver donor, obviously liver is different from kidney, liver is a bigger surgery. If it’s an adult-to-an-adult liver transplant, we usually take the right lobe half of the liver from the donor and give it to the recipient. The recipient is sick so they need a reasonable amount of the liver volume. Now that being said, the donor from the liver transplant will be in the ICU, at least here at our hospital, for one to two days, and we watch them very carefully. They’ll be on the floor for three to five days at least, and if there’s anything that looks like we need to extend that, we just extend it. Functionally, people have to remember they’ve had a big surgery. It’s an incision, there is some pain. Afterward, our goal is twofold. One is to get them up and moving around. The second goal is making sure their nutrition is optimized because the piece of the liver that’s still there is going to grow, so we need to optimize nutrition to allow that liver to grow back close to its previous size.
Caller: My family has been tremendously blessed by having all five of us receive kidney transplants from different hospitals. I’ve had mine for 14 years and have been fortunate enough to watch my three girls grow up and get married and have children. Two of us received livers from live donors. Three of us received livers from deceased donors. A great shout-out to [all our teams] who were just so great at the care they provided. They were so gracious to give us kidneys.
Joy Cardin: What would you like our listeners to remember when it comes to organ donation?
Dr. Zimmerman: There are a couple things. One is to remember that anyone can be a potential donor. You have to go through the process. It takes a bit of time, but it’s well worth it. If you want to know more, you can go to froedtert.com/donatelife. At Froedtert & MCW Froedtert Hospital, we have a specialized ICU just for transplant, which I think will become more common down the road in hospitals and allow us to have more specialized treatment for transplant patients. We’re very excited.