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Dr. Campsen: Today we're here talking about the transplant process. Dr. Jeffrey Campsen, one of the abdominal transplant surgeons at the University of Utah, and I'm here with two of our transplant coordinators, Heidi and Hillary, who are going to answer questions about the transplant process. The purpose of this today is to describe the process and help people understand what they go through as they're being listed and going to transplant.
This can be a very difficult time in your life, and we're hoping this information can help you understand the process and help it be easier. Patients come in to the University of Utah, and they have some sort of organ failure disease. What's the first step as far as being referred to the transplant center?
Potential Organ Transplant Candidate: First Steps
Heidi: First, I want to explain that everyone gets assigned a transplant coordinator. The transplant coordinator sees them through the whole process of the transplant. From the time they're referred, while they're on the waiting list, and during their post-transplant phase, they have someone that they can contact at any time and be able to see them through to anything that they need to do.
We see you in clinic. We schedule any appointments that you need that are related to your transplant. We retrieve and review your medical records. We present you to the committee. We have a committee of people that are there to also walk you through the process as well. We actually get you listed on the transplant waiting list, and then we monitor you while you're on that list.
Referral or Self-referral
Dr. Campsen: So, an outside physician may have a patient that has some sort of organ disease, whether it's kidney failure, liver failure, or type 1 diabetes. Then, they're referred to our transplant clinic?
Heidi: Yes, the patient can be referred by a physician or they can self-refer. Once we get their information, then we send them out a packet. They fill out the information, giving us their medical records and sign a release so we can retrieve those records and review them with the physicians.
Dr. Campsen: Once they come to clinic, what happens there? Hillary, you're one of our pre-coordinators on liver. What happens after that?
Meeting with the Transplant Team
Hillary: Once they come to clinic with us, we typically have them see our social worker. They see our transplant coordinator, they see the financial coordinator, they see dietary, and they also see one of the transplant pharmacists. So they get a pretty good understanding of who we all are as a multidisciplinary team. We each get a chance to meet with them, review what our piece of the education is with them, and just help them feel more at ease with what's happening through the process to get a better understanding of the testing that's going to happen.
Typically, we schedule our diagnostic testing for the following day where they go through a battery of lab tests, medical imaging, echo, and all those kinds of things. Once they go through that process, then we take all those things together and make a summary sheet out of that, which we do present to our selection committee, which is basically all of those same multidisciplinary people who review all the information that we gather and determine whether or not they are an appropriate candidate for transplant.
Dr. Campsen: That sounds a little overwhelming. How long does that take, and can it be overwhelming?
Hillary: It's very overwhelming, especially if you have not been seen by such a team in the past. Typically, you've seen probably your primary care doctor, or your hepatologist, or your GI doctor, kidney doctor, or whoever it may be, and then they refer you and then all of the sudden you're bombarded with a bunch of the team.
Basically, the first person you typically meet with would be the transplant coordinator who tries to explain to you everything that's going to happen over the next little bit that day as well as the following day. We also send out a packet ahead of time informing you so that you have the opportunity to call and ask questions prior to that actual meeting.
Dr. Campsen: Once all of this transplant day goes by, then what happens? We go to selection committee?
Hillary: We go to selection committee. Once we've determined that you're an appropriate candidate, then it goes on to our financial coordinator who submits everything, all the medical information, to the insurance company, and the insurance company from that point makes a decision, which typically can take anywhere from a few days to several weeks. Once we have that approval, then we would ask you to get labs drawn again, at least from the liver side, to get a MELD score. Once you have that MELD score, we can list you.
Dr. Campsen: Heidi, the transplant selection committee. Can you tell us a little bit about that?
Heidi: The selection committee is made up of physicians that specialize in kidney disease, the surgeons, it's also made up of social workers, pharmacists, and the dietician attends that meeting as well. There are several nurses that are involved in that.
Dr. Campsen: So it's made up of a fairly large group of highly trained professionals, and then the patient's presented?
Heidi: Yes, we present the patient at those meetings. The goal is to see if they're ready for transplant. Once they're ready for transplant, then we can list them on the deceased donor wait list. The difference with kidney verses any other organ failure is that we have dialysis that bides us time, so the workup for kidney is not as quick. As Hillary was saying, when they bring someone in the very next day they do testing, with kidney transplant we don't do that. We send them back home and they do testing that's in their local area, but you do have someone that walks you through the entire process.
How Long Does the Approval Process Take?
Dr. Campsen: The timeline of how quickly the workup can happen is really based on the severity of illness?
Heidi: Yes, absolutely. It depends on their age, it depends on their comorbidity and it depends on their diagnosis.
Waiting on the Transplant List
Dr. Campsen: Once the patient is presented at the selection committee and they get placed on the list, then they're available to be called in for a transplant?
Dr. Campsen: They can be called in at any time. How does that process work?
Heidi: We ask them to be available 24 hours a day, seven days a week. That includes nights, weekends, and holidays. They could get a call any time. With kidney transplant, they do not need to live locally but we do ask them that they're available any time over the phone so that we can start the process of bringing them in.
Dr. Campsen: They can come in from almost anywhere. You and I were just on call the other night, and you had to bring in a patient from far away, is that correct?
Heidi: Yes, I was very surprised when I spoke to her and she told me she was in Hawaii.
Dr. Campsen: She was able to get a medical flight and come in, and she received a successful transplant.
Heidi: Yes. She was here within 10 hours and did receive her transplant.
Dr. Campsen: Really, depending on the circumstances, we really try to bend over backwards to bring our patients in and make sure that they can be available for transplant.
Heidi: Absolutely. Our goal is to have you have a successful transplant.
Dr. Campsen: Hillary, once a patient gets called in, what should they expect from the time of being called to basically going into the operating room?
What Happens After an Organ is Found?
Hillary: We request that they be there about a certain time, and request that they wait in the waiting room until the admission people are able to get them a room if they aren't able to get one prior to them leaving their home. They are taken to their room with a packet of information that goes to the operating room with them. They may spend a short amount of time in that room. They may spend hours or days, even, in that room as well, because we don't know for sure how long it's going to take for things to progress with the donor.
Dr. Campsen: That's a good point to where our transplant program will never transplant an organ we don't think is going to work. At any given time, what could be called a dry run can happen. Can you describe that a little bit?
What if the Organ Isn't an Exact Match?
Hillary: We've had patients who can be considered back up, or they may be considered primary, which is the patient who is expected to get that organ, but they may come in and something can occur. As a transplant coordinator, I typically make sure that I let them know that this is a potential organ transplant, that this is not a definite thing, so that they aren't surprised or disappointed, as much as we can make them not disappointed. Things may not happen. There may be an issue with the donor. There may be an issue with them. We don't know for sure that they're well enough to be transplanted at that point in time.
Dr. Campsen: We really try to err on the side of making it so that they can get an organ. If for some reason they come in once or twice and the organs don't work out, we explain to them that's okay because the organ has to be right for them.
Hillary: Right. I explain that to them a lot throughout the pre-process as well just so that we let them know ahead of time that this could potentially happen and we don't want you to be surprised when something happens and it's not unusual for that to happen.
Dr. Campsen: If everything works out, they go to the operating room and they receive their organ. What we're talking about is either a liver transplant, a kidney transplant, a pancreas transplant, or actually what we call multivisceral where they could receive a combination of a couple transplants. The transplants can take anywhere from four to 12 hours, depending on how that goes. Once they come out of the operating room, they're in our intensive care unit. What should the patients expect over the next couple of days, do you think?
Hillary: I try to also inform the family and the patient ahead of time as well to let them know that the patient's going to come out typically intubated with a breathing tube in so they are not surprised when they come out and see them with a lot of hardware, with lots of tubes and pumps and things attached to them, because that's typical of what happens post transplant. When they see them we just want them to not be scared and think that's abnormal. That's a normal part of the process.
Then they usually will spend, depending on the organ, with livers, sometimes in the ICU six to eight hours. Sometimes they're there for days. It just kind of depends on how sick the patient was going into transplant. Our typical stay in the hospital, we like to keep it around a week if we can, but some of the patients are very, very ill going into transplant and that just is not a possibility.
Aftercare: Education & Follow Up Appointments
Dr. Campsen: Heidi, during their stay and before they leave, the families and the patients get teaching so they don't just leave the hospital with a new organ?
Heidi: Yes. They get one-on-one education with their discharge coordinator. They get a new, what we call, owner's manual to their new organ where they will be able to have all of the instructions they need as far as when to call us, what they need to look for, signs and symptoms, and so forth.
They also are discharged with their medications. We don't want to take a risk that their pharmacy will be closed or what have you, so we want to make sure that they their medications with them when they leave the hospital and they understand everything. We have color-coded charts for them, and everybody knows what's going on before they leave the hospital, including all of their follow-up visits.
Dr. Campsen: That packet is basically called an owner's manual, right?
Dr. Campsen: We give out what each organ gets an owner's manual, and they get a pillow that looks like their organ. The bottom line though is that we don't want our patients to leave with any questions at all. They need to be very well informed. However, if they do leave, there is a coordinator on call 24 hours a day that they can speak to. Is that true?
Heidi: Yes. Twenty-four hours a day, there's someone available, a registered nurse, to talk to them and work out any situation that they may have.
Dr. Campsen: It's different for each of the organs, but basically there's an intensive amount of follow up, especially in the first month. Is that correct?
Hillary: There is a lot of follow up. With liver specifically, we have them have labs drawn three times a week, we have them follow up in clinic at least once a week, just depending on how well they're doing. We ask patients who live not locally that they need to be aware that they need to have some place to stay within our area for approximately four to six weeks just so that they are available should something happen. We want to make sure they're stable enough before we actually send them out to be home far away.
Heidi: For kidney, they only are required to stay for about two weeks with the promise that they'll come back for their frequent follow-ups. Then they also have a little bit less stringent lab follow up, but we do want to see them back weekly for about a month.
The First 100 Days
Dr. Campsen: I know the head liver doctor that we have here, Dr. Box, talks about the first 100 days. The first 100 days after transplant is very important because it's a little bit of a roller coaster ride. Managing immunosuppression, following up with your labs, and any sort of issues normally happen during that time, and it's different for each organ. Would you agree that once they get about 100 days out, it's less intense after that?
Hillary: Yeah, the first 100 days can be a rollercoaster. Rejection typically happens earlier on if they're going to have some kind of rejection.
Dr. Campsen: What I like to tell patients is after the transplant's done, that they're part of the club. We monitor them for basically the life of the organ, which is basically their entire life. Is that true?
Hillary: That's true. We follow our patients basically from the time that they first get referred to us until forever. I let them know that, "You're with me until you're listed, and then you move on to somebody else and they keep you forever."
Dr. Campsen: Heidi, based on this discussion of how transplant evolves, what is the take-home message that you would give somebody listening to this?
Heidi: I think it's important for everyone to know, whether they're a patient or a family member, that you have a team of professionals that are here for you before, after, and during the transplant process.
Dr. Campsen: Hillary, if anybody has any further questions, how would they get in touch with us?
Hillary: We have a University of Utah transplant website that I believe will lead you to whichever organ transplant you're having. If you're a liver transplant patient, it will show you what the liver program referral process is, what you need to do. It gives you all the phone numbers if you have any specific questions. I would highly recommend you checking out the University of Healthcare website.
Dr. Campsen: Those pages have been updated recently with patient stories, the coordinators, and the physicians and the team members, too.
Hillary: That's correct.
Dr. Campsen: I think, if you wanted to do a little research, that's a good place to start. Thank you two very much for coming and helping educate the community. I really appreciate your time today.
Heidi: Thank you for having us.
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