After speaking with Annette Needham, I can truthfully say she is the expert on all things transplant nursing. She is a doctorally-prepared nurse practitioner who has done it all: worked as a transplant nurse on busy floors, as a transplant coordinator, as a nurse manager, as an inpatient NP, and most recently as a quality transplant manager. She is also a donor advocate and is active in professional transplant organizations. She calls herself bossy, but after getting to know her a bit, I’d say she is intelligent, well-spoken, knowledgeable and just a downright nice person. In the five-minute snippet…she’s an IRONMAN!!! For Annette's bio and book recs, visit my website!
The God Committee https://journalofethics.ama-assn.org/article
Derek Fitzgerald www.recycledmanspeaks.com
American Society of Transplantation (AST) www.myast.org
Donate Life www.donatelifecalifornia.org
The Scientific Registry of Transplant Recipients www.srtr.org
Thank you to Ingrid and Jessica
Contact The Conversing Nurse podcast
Instagram: https://www.instagram.com/theconversingnursepodcast/
Website: https://theconversingnursepodcast.com
Give me feedback! Leave me a review! https://theconversingnursepodcast.com/leave-me-a-review
Would you like to be a guest on my podcast? Pitch me! https://theconversingnursepodcast.com/intake-form
Check out my guests' book recommendations! https://bookshop.org/shop/theconversingnursepodcast
Email: theconversingnursepodcast@gmail.com
Thank you and I'll see you soon!
[00:01] Michelle: After speaking with Annette Needham, I can truthfully say she is the expert on all things transplant nursing. She is a doctorally prepared nurse practitioner who has done it all, worked as a transplant nurse on a busy floor, as a transplant coordinator, as a nurse manager, an inpatient nurse practitioner, and most recently as a quality transplant manager. She is also a donor advocate and is active in professional transplant organizations. She calls herself Bossy, but after getting to know her a bit, I'd say she's intelligent, well-spoken, knowledgeable, and just a downright nice person in the five-minute snippet. She's an iron man. Here is Annette Needham. You're listening to the Conversing Nurse podcast. I'm Michelle, your host. And this is where together, we explore the nursing profession, one conversation at a time. Well, good morning, Annette. Welcome to the program.
[01:10] Annette: Thank you. Good morning.
[01:13] Michelle: I so appreciate you being here today. I've been very excited since your friend and mine, Ingrid from the Another Situation podcast, referred you because I have a personal transplant story which I'll get to in a little bit, but other than that, I really don't know a lot about what a transplant nurse does and the whole transplant scene. So I'm really excited for you to talk about that today.
[01:47] Annette: Yeah, it's funny actually. I think transplant gets sometimes some press or social media or movies that say they have experts on these types of things, but I always question that because I haven't seen one that has portrayed the experience correctly so far. So I think a lot of people are curious and it's one of those things we didn't use to talk about, but it's becoming more mainstream.
[02:22] Michelle: Yes, I echo your sentiments on the shows that we watch, the medical shows. My daughter is definitely a witness to me yelling at the TV. That is so fake, that would never happen. Where are the medical experts? Right, right. So, yeah, I've had that frustration too. Well, the way I like to do things is kind of jump right in and so tell me, what does a transplant nurse do?
[02:56] Annette: Okay, well, I should probably clarify. There are a lot of different roles within transplant and as you know, in nursing, there's kind of not one-size-fits-all, and transplants are no different. So a transplant nurse could take many forms. Typically, most people think of a transplant nurse based on their experience, so patients would think of them as probably a transplant coordinator or a nurse that they meet in the transplant clinic. Whereas obviously, the inpatient side is very important. Once they get their transplant, then they realize, oh, this is the transplant nurse. So I think we take on many different roles, but basically, a transplant nurse really could be any person from the clinic itself checking patients in, and educating them in the clinics. It could be someone in a dialysis unit that they've hired to work with their transplant patients. Or it could be an inpatient transplant nurse working on the floor, taking care of post-transplant patients and living donors. A little offshoot is the transplant coordinator. And those people typically coordinate the whole entire thing. And depending on the place that they come from, the transplant center could range from just a very narrow role. If it's a very busy center, such as they work in pretransplant or they work in living donation or they're post-transplant all the way to a small center where a transplant coordinator could do the whole entire thing, including beyond call for organs. So it's like a huge world, actually. And we can go further into every different aspect if you'd like. I've kind of done most of the role because I've done it for about 25 years, so I can pretty much answer, I think, any of the questions you might have based on what I said, which I know is lengthy, sorry.
[04:54] Michelle: No, it's so comprehensive. And as you were speaking, I was thinking, is one of those roles of a transplant nurse in like a surgical like an organ procurement team?
[05:11] Annette: Yes, that is true. And actually, I forgot the whole OR piece, so I'm glad you said that. There are organ procurement organizations everywhere. They typically call them transplant coordinators as well. Our subset is the procurement coordinator or recovery coordinator. We use different words as social media dictates. One will fall out of favor and we'll start calling them something else. And then there's a whole OR side. So some of the larger programs have dedicated transplant OR teams. And so you could find transplant nurses on those teams too. So you could be basically working in the OR as an OR nurse, but you're a transplant nurse, so that's another two roles.
[05:57] Michelle: So within this niche, there are further niches. So wow, it's very specialized.
[06:07] Annette: It is. And we've started to use a lot of nurse practitioners in the last ten years in transplant and also on the teams. There's the CRNAs you mentioned you talked to one last week and so that's kind of getting broader also, which is kind of fun. I mean, at one time in nursing in general, you could pigeonhole yourself into outpatient or inpatient or nights or days, there were all these categories. And then if you went into transplant, you were basically transplant. But now I just feel like with doing more and more of them in different organs and different size programs and people just being more sick and having better insurance where they could potentially have transplants, it's just becoming more commonplace. And so, like you say, within the transplant world itself, there's a lot of different roles.
[07:00] Michelle: Well, how did you get into it, Annette? What interested you that made you say, yeah, I want to do this?
[07:07] Annette: Yeah, it's funny, actually. So I was trained in England originally at just this kind of Med-Surg. And then when I came here, I was first placed in Los Angeles and I had a contract with a travel company. It was kind of like a Med-Surg transitional care type of unit. And my husband had a hard time getting a job originally, so it was like, oh, maybe I could do a little extra work. I only worked three days a week, I could pick something up. And a lot of people were talking about UCLA, what a great place, and all of these things. So I went per diem with them and my first assignment was a transplant floor. And I remember thinking, oh my gosh, this is like crazy. Do we do this in England? Like, I'd never really even heard of it, even though I'd obviously trained as a nurse. And so I was just kind of fascinated by the whole thing. And I remember one day seeing the transplant team come in, huge team rounding, and I remember the transplant coordinator, arguably the least senior person on that team, was in charge. Like she was, you do this, you do that, I'm going to do that, you know, and I thought, oh, I'm, you know, I'm bossy, this is my role. And so from that point on, I tried to actually switch my position to the outpatient side and, and work in the transplant clinics. They had like five because they do everything and so from then I kind of blossomed. I did get into the clinic. My contract ended with the other company. I got a job in transplant there in the clinic itself. And so, yeah, it was really just seeing that role in action and saying, that's what I want to do.
[08:41] Michelle: That's so neat. I love that when just everything comes together and you know yourself so well. I love how you said I'm bossy. I see myself doing that. I think a lot of nurses do that. Well, that's a whirlwind. So talk a little bit about live and cadaver donors and cadaver donors, is that still the term actually the user?
[09:09] Annette: No, that's one of the naughty terms now. Okay, yes, because apparently, the social side of things to the general public believes that a cadaver relates to something that's just cold and dead and not viable. Whereas if you say someone's deceased, there's a period of time that they're kind of viable, obviously, for organs. And so I think it was just differentiating that still seeing them as a person in a sense, sure. But yeah, we use the term deceased now.
[09:43] Michelle: So live donors, I guess, what organs can they donate?
[09:48] Annette: Yeah, so we always think of live donors actually as heroes. We're taught in nursing to not give people any special treatment, preferential treatment, that kind of thing, right? But that changes just ever so slightly with a living donation because they're doing something they don't have to do and it's a major thing that they're doing. So we consider them to be heroes. We treat them differently. They get first attention, all of that. And so you can donate a kidney. That's one of probably the safest things because you have two and they work together. So if a disease is going to take one of them out, actually it would take both of them out at the same time. It wouldn't just attack one. So they work in pairs. And when you take one out, the other one grows in size and kind of accommodates and actually also you can donate a portion of your liver that one regenerates. So that one's kind of the most fun. That kind of almost totally replaces what you took, but that one is a little more vascular. It's the hardest surgery. It's a bigger recovery, so we can't say it's the easiest one. Obviously, you can't donate a heart. There's no part of that you can chop up. We need the whole thing. Lungs, you can donate a portion of like the lateral lobe of one of the lungs and then the pancreas. We cannot, I think that's it, right? Yes. Okay.
[11:12] Michelle: Gosh. A lot more than I thought. Yeah, that's so interesting. One of the things that I wanted to talk about, in preparing to talk to you today, I was reading a lot about organ donation, and one of the articles I came across was the California Assembly Bill 30 211, which was passed into law in 2019. And from what I understand of the bill, it's a bill that sort of changed California's Advance Health Directive law, and it now defaults to everyone being an organ donor unless you specify that you do not want to be. Am I understanding that bill correctly? And do you want to speak to this?
[12:07] Annette: Yeah, it's actually not my area of expertise. It's kind of the OPO side, and they do keep them very separate so that there's no conflict of interest type thing. So obviously I hear about things and it's important to us, but I would never kind of go anywhere and offer to speak on organ donation just because things change and they're changing so rapidly. But I do know a little about it, and I know that we just need obviously more donors. And some people are just afraid of it. They think if they talk about it ahead of time, that something's going to happen to them. It's a little bit of superstition. There's still some thoughts out there that if they go to the hospital with an accident and they're a rare blood type like a B, that the system would be like, oh, this one would be a great donor. Let's just not save him. Which of course would never happen. But people have these thoughts and weird movies perpetuate those things. And so we've just been coming up with ways for years and years and years to try and increase this. Obviously the DMV thing, you can go and they ask you every time, do you want an organ donor? Dot on your card and a lot of states do that. This was just one more thing. They do have it in Spain, it's called presumed consent there where whether or not they have it on their license, whether or not they've made their wishes known, Spain will just go for organ donation unless there's a great fight over that with the family. So yes, it finally kind of happened here. I did actually ask our OPO colleagues a few months ago because I did do a talk for some nursing students about transplants. And this came up because obviously, people are always interested in the other side. And I did actually ask them and I said, what if this is ongoing? You have a donor, you're working them up and then a family member shows up and is outraged and doesn't want this to happen and what have you. And they said they would never take someone under duress like that. They would back away, but they said they would try and talk and do all kinds of things to help the family come to terms with the death and everything that can happen that's good out of the death, but that if they were really very physical excitable family members, then they would not force the issue.
[14:29] Michelle: Sure they would be sensitive to that. From what I understood as well with the bill, it's that California has over 23,000 people awaiting transplantation, so they're trying to bring more attention to it and more potential donors. So I found that to be very interesting. But what is the responsibility of medical professionals in regard to asking for organ donations? So just like you said, in that situation where somebody comes in and they're going to pass away, at what point do we approach the family to discuss donation, and whose responsibility is that?
[15:17] Annette: Oh yeah, that's a great question. Actually, most hospitals have what they call a donor family coordinator from the OPO and they typically work on all of the different floors, kind of stopping by and talking to staff constantly about organ donation. What would be an appropriate referral. So it's basically a referral-type situation. And again, especially the ICUs and Ers and places where these patients come from, mostly they do get education on it and they get a referral sheet. Basically, they're supposed to call in deaths to the OPO and they make that decision, this would probably be a viable organ donor or not. And then they come out, they send a procurement coordinator out to that place and they evaluate the patient. And then if it looks like it would potentially be an organ donor, they're the ones who approach the family typically. Now some places do have and they call consenters, and some people do have them already in the hospital. So there's a few hospital systems that trained some of their staff to be able to get consent. Obviously, there's a good and a bad way to ask for that. And so there's a lot of training goes around it. And so they just feel that nobody should really ask except people that are trained to ask.
[16:38] Michelle: I agree with that. I would imagine it takes very sensitive, in-depth training. So the OPO, what organization is that?
[16:48] Annette: Yeah, so typically they used to be geographic, and they still are to some extent. They have borders. So, for example, in the Bay Area, up here in Northern California, there's a couple actually there's one in the Bay Area, one in central Northern California. So there's one called Sierra Donor Services that services most of the Sacramento area and kind of surrounding. And then at some point towards Auckland, there's a division line. And then that whole Bay Area moving south and north is under California. They changed their name recently. CTDN. California Transplant Donation Network. I think they're called. Oh, no. Transplant Donor Network West. Anyway, they have nice, fun, catchy names and sometimes they get bought out or they merge and they change their names. And so I apologize. I only know things by their acronyms, but yeah, and there's quite a few of them throughout the US. And you can look them up, too, just like you can look up transplant centers. So there's a really good website which is Unos.org. It's UNOS, which stands for the United Network of Organ Sharing. And you can find a center. You can do like a little click button, and you can look for OPOs in California, Nevada, in the whole of the US. And the same for transplant centers. So it's a really nice way of kind of if you're looking for one or the other, you can just search them through this United system.
[18:14] Michelle: Okay, that's great. I will need those resources from you because I want to put those in the show for sure. But OPOs. I'm assuming that's an organ procurement organization.
[18:25] Annette: Got it.
[18:26] Michelle: Okay. I did see that. For transplant nurses, there are several organizations. There's the International Transplant Nurses Society, which is itns.org and then there's also a couple of certifications. The CCTC, which is a certified Clinical Transplant Coordinator. And you hold that, is that correct?
[18:52] Annette: Correct. Okay.
[18:53] Michelle: And then the CCTN, which is a certified clinical transplant nurse. And would that be more specific for a nurse working on a transplant unit or a team?
[19:05] Annette: Yes, correct.
[19:07] Michelle: Very good. One of the things that I really wanted to know about transplants is what happened during COVID to transplant.
[19:17] Annette: I'm sure any healthcare professional utters a sigh whenever that word is brought up, but yeah, it's pretty huge. And speaking of resources, I can give you a lot more. There's one organization that's my favorite called NACCO, north America Transplant Coordinators. The organization is where the acronym comes from. But they adopted OPO professionals as well as dietitians. And so now they're just called they're still called Natco, but now it stands for the Organization for Professionals in Transplantation. So I'll give you more resources, too, on that. There is also a certification for the OPO for a procurement specialist, CCPC procurement coordinator. Anyway, yes, there's a lot CTPC, I think it is. And so I'll give you all of those. But your COVID question, it affected us in multiple ways. First of all, our patients that were transplanted were actually really sick and dying because they didn't really have an immune system to fight this less than other people. And so we saw a lot of deaths actually initially within that first summer of 2020. We as a community responded slightly differently. But a lot of places, probably the majority, did halt all of their living donor surgeries because the hospitals were overwhelmed. It was really would you really want to bring a healthy person into this environment right now and then take out their kidney and leave them vulnerable for a few weeks? Not really. And so we paused on that, at least for kidney. And we also had to just restructure what we were doing. We felt that we couldn't just have patients coming into the clinic willy-nilly for their pretransplant evaluations. So we switched to some video visits. We recorded our class versus having them come to the center. We used to have this big education class for them that was like their first stop. It was a good hour and a half. They signed forms, they asked questions, they got their next appointment. It was like a really nice environment. They met each other and got to chat. And we had to stop all of that. Obviously, there were like 50 people in the class. And so we scrambled, we made videos. It was a lot more telephone calls. And then it was just really quite sad. I mean, our numbers went down. And of course, the waitlist is huge, and that's not what we wanted. And then people were dying, and we had to be really careful when we did bring somebody in for a transplant because they could get it from staff or anything. I mean, we were fairly protected, but still, it was unknown for that first year, a lot of things. And then after the initial chaos, we started coming around a little bit. We had a little more control. We started doing living donors again. The vaccines came out for our patients, which was huge, some places then we kind of got into some places mandated vaccines. Some places didn't think that was right to tell someone you had to get a vaccine. And so then there was this whole kind of division. We were supposed to be united and together. But of course, even medical opinions differ and ethics come into play always in transplant, and this was no different. Can we really make people take this vaccine? And so, yeah, you'll find if you kind of looked at it, a lot of programs are still struggling with that. I'm on a list for the country, for admin and quality for transplant. And randomly in the last few months, someone will pop up. Are you all still mandating vaccines? Who's doing an option now? And are you making them do the bivalent? So it is still very much a topic of discussion. We were looking in one sense that our statistics are captured by the Scientific Registry of Organ Transplants. It's SRTR. I'll give you more detail on that. But basically, we're held to task on transplant survival, graft survival, all of these different metrics. And there was an actual period of time that they didn't count our deaths because we couldn't control it. There was a good period of time where that shouldn't count against us because also we're held to these standards. And if we reach a certain threshold, then we will get a visit from the United Network of Organ Sharing. We'll get an audit even. Sometimes CMS can get involved. So we have to perform well. And this is all very public information, by the way. In fact, we're required to give it to a patient when they're referred to us, hey, here's our statistics. This is what our percentage of graph fillers are. This is the website to look for more detail. So it's a very transparent system. But luckily they did give us a break on a few months because everybody would be flagged.
[24:10] Michelle: Well, it sounds like COVID really deeply affected transplants and delayed a lot of transplants. Sounds like it was a big mess. So when you were talking about the education that the patients were going through, that was one of my questions as well, because I can imagine that they and their families just need a huge amount of education. And I was wondering how it was done. Was it done? Did they have to attend classes? So speak to me about that.
[24:42] Annette: Yeah, so pre-COVID, we struggled enough, honestly, with education because we are required by CMS and UNUS to give certain amounts of information to patients coming up for transplant. And recently, about two years ago, maybe three, time passes, we were told to really, especially for living donors, they had to agree to continue their evaluation after they were given a certain amount of education and recipients too. And so we had kind of at least on the living donor side in our program. We had allowed them to at least get their blood type to see what they were and maybe do a cross-match with the recipient to see if they were a match and that kind of thing before we brought them in and did the whole one-hour education. But this flipped it all around for us. We were told basically you don't touch a patient until you educate them, at least basically. And the basic information is a lot of information, especially if a patient just really came out of nowhere. I mean, we do have those patients where they might have just led a fairly normal life. Maybe they had some headaches, maybe they have this, that, or the other, and all of a sudden, they're sick in the hospital. They think something happens to them and they're found to be in renal failure. Their blood pressure has been high for years. Who knew, right? And so those patients we feel the worst for because they're suddenly getting all of this information. I mean, it's not just what your appointments are, what the kidneys might be that we offer to you all the livers, infectious disease complications, where the donors come from, surgical risks. I mean, there's so much it's crazy. I think our video that we did with our slides, I think the video is about 35 or 40 minutes and that's just someone talking with no questions. And then the slides that accompany it, I'm pretty sure they're about 50 or 60 slides. It's a lot of information. And so in some of the organ groups, like for heart transplant, we're able to split that up because it's not a large population. And so we actually split their education up. So they'll have an initial education that's about consenting to the process, a very big overview of everything. And then once they go through the evaluation, they get kind of like, okay, here's your weightlift education. This is what you're going to know about being on the list and when we call you in, et cetera. And then there's like a post-surgery education that they get when they come in for transplant. So we were able to split that one up and give it to them in little pockets. But for kidneys, unless you're a small program, you don't have that luxury of one on one type of work or small group type of work. You get a lot of referrals. For example, in the center I work, we get about 200 referrals a month just for kidney transplants. And so that's a huge amount of patients to have to process and we want to keep it somewhat personal. So, yeah, I think you'd find that a lot of different programs do things slightly differently. Some people have them do a consent form afterward acknowledging all of the different things that they understood or didn't understand. There's special consents, too that we do after education. There's special education we do. So, for example, not everybody does this, but a lot of the programs will start doing hepatitis C-positive donors into hepatitis-negative patients. And that's because hepatitis C is so curable now with the new medication that we are willing to give it to them in order to give them a good organ. And they're usually good organs. They're usually young patients that maybe had an IV drug overdose or something. Otherwise, perfectly great organs, right? So there's little things like that we do. Obviously, they come with risks and the patients have to be informed. So that's like a whole other 20 minutes conversation. In kidneys, we use small kidneys sometimes we call them on blocks where it might be from a young child and we transplant both kidneys together and they grow over time to accommodate. So we have to do a special consent for that because they're younger, they're smaller, they're more likely to bleed and have clots and different things. And so, again, that's another 20 minutes conversation. So you can imagine and then if you're trying to do this to a whole group of patients and they like, wait a minute, repeat that. So education is a huge part of a coordinator and a patient's life and it's constantly evolving.
[29:15] Michelle: Yeah, it is huge. Everything that you just explained, and it doesn't just happen once. Right. We know as nurses that we can talk to the patient for 20 minutes like you said, and they're just either not ready to absorb the information or they're unable. And so we're constantly repeating things. Yeah, that's huge. So one of the things that you touched on was Ethics in transplantation. And I'm going to link an episode to a really interesting podcast that I've been listening to and it's out of Australia, it's called Essential Ethics and it's Pediatric Ethics. And from the Royal Children's Hospital in Melbourne. It's just so interesting. But one of the episodes recently was regarding heart transplants in children, and the pediatric cardiothoracic surgeon was explaining that they had this one unit at Royal Children's and there was about 40 kids on it and they were all waiting for hearts and some of them were very sick on the left ventricular assist devices and such. He was worried because he knows a lot of those kids are going to die before they get their hearts because there just aren't that many hearts. And so he was talking about the ethics of that. But one of my questions along those lines is so a patient needs a transplant and they get on a transplant list? How is it decided? Who gets the organ first? Is it always the sickest patient? Or talk to me about that.
[31:13] Annette: Yeah, that's a very interesting topic. And ethics are so amazing. I actually have been trying to get on the Unis ethics committee for some time now. I've been on the living donor committee in the past and I love to do community stuff like that and network with other people and be part of solutions. But I've been trying to get on that committee so long because I just love ethics. For us, there's lots of different ethics and kind of a sidebar. But I was doing a talk once a couple of years ago for NACCO and it started off it was a kidney talk and we were talking about processes and committees and different things. And back a long time ago, actually not that long ago, it was in the 19th century, there was a God committee, literally, that's what it was called. And it was on the east coast. I'll find the literature on it and send it to you. But it was basically a committee that decided who got to go on dialysis or not. And basically, if they don't, they die, right? So that's why they were called the God Committee. And there's a couple of movies too, that allude to this, which got me all interested, and that's how I found it. But there's a couple of different things. First of all, before they even get listed, there's a committee. We don't call it a God committee, it's called Selection Committee, and it's highly regulated by both CMS and Junos. But basically what it is, is a patient has to have an evaluation by certain multidisciplinary team members in order to be considered for a transplant. So it's not like everyone can just have a transplant. So they're seen by a licensed clinical social worker, a registered dietitian, sometimes pharmacy, if they have a lot of medicines, sometimes psychiatry or psychology, depending on the program, like the heart transplant, we have them see those professionals for kidney, not so much because they're on dialysis, they're getting support while they're attending their treatments. So every organ is a little different. They have to have a transplant surgeon, a transplant coordinator, and a transplant physician. So whether it's a cardiologist or a nephrologist or one of those, all of those people have to weigh in on that patient's eligibility for transplant. And basically, they have to be of sound mind to make decisions. They have to have good social support, they have to have financial good enough insurance. There's a financial coordinator too. She'll kill me if I forget her. And so all of these professionals, it's amazing how many people are involved. And like I say, it's highly regulated. We have to do this. There's no way around it. You can't just choose to list this one and not that one. You better have really good reasons. And you have to communicate those reasons to the patient by in writing within ten days of that meeting. So it's all very, like I say, transparent. I've mentioned that before. But once they get on the list and we have an organ for them so that system is where the OPO, the organ procurement organization, and the transplant center kind of mesh a little bit. So what happens is, you notice of the people who run the transplant list, the National Transplant List, and it's a huge computerized system where a person comes to the hospital they're deemed an organ donor. They're in an accident, brain death, whatever. The organ procurement organization sends their coordinator to evaluate them. They do a bunch of tests and workups. That coordinator puts all of their information into this unit system. It's called unit, puts it into that system, all of their blood type HOA, which is their human leukocyte antigens, that's when we talk about matching, they put all of that detail in how they died, what their risk factors are. Like they were IV drug user, that kind of thing. All of that goes in and then the system generates a list. And so organ allocation has been a hot topic over the last few years because we keep trying to change it to be fair to the patient. So it used to just be very geographical. It was you and your OPO in your area and it was the sickest patient in that area that came up first. There's also some nuances to it which are a little bit complicated. But in essence, if a patient was a living donor before and now they need an organ themselves, they go to the top of the list. Effectively, if a patient is really hard to match like they have a lot of antibodies from blood transfusions and different things and their antibody level is really high, then they get extra points to be towards the top of the list because otherwise, they would wait for 25, 30 years. So there's little nuances to it. But basically, it's a computer-organized system and it generates a list of patients and you have to whoever's at the top of the list. So say if I was at the top of the list, the OPO would call me at my center and say, hey, there's a potential organ for your patient XYZ. I would say, okay, thank you. I then have an hour to go look in the unit, look at all those donor details, and make sure it seems like an organ we might want. Then I have to look up my patient, make sure they're not sick, that they're ready, and everything's in order. And then I call my surgeon and say, hey, this is the patient, this is the organ, do you want to do it? And then I call them back and say yes. So it's a very convoluted process if for some reason I call my patient and they're like, oh, you've got Covid right now. Oh, sorry, I'm going to have to skip you. Then we go down to the next person on the list, the next person on the list with this new allocation. So the allocation now is within 250 miles of wherever the donor is. And so I may not be second. Someone in a different area may be second on the list. And so then I have to wait. So you can log on and see your list every time you get an organ offer and everything is starred out unless it's your patient. So I might see patient number one, then I might see a star, and then patient number ten might be mine. And so basically that OPO coordinator has to work through the list until she gets a yes. And they usually go a couple more than that too and have them as backups because the patient might get to the hospital and be found to have some kind of issue and then she's scrambling again. And so it's very complicated. And actually what a lot of transplant programs have done in the last few years is actually get an on-call agency to manage that for them because we would have coordinators up all night with these different offers and organs. I remember early in my career in a different state, one of my first nights on call I got four donors all at the same time. It was some kind of traffic accident and two cars had banged into each other and all of them were dead. And it was like, oh my God. And they were all very similar age, they were all girls. And I literally swept off my dining table and I had all these cases, this was in the day where you'd print stuff out and you'd have little packets and so I have them all laid out and I'm like, okay, this is the O type, this is the B. And human error can happen in these things. So we have to be so careful and have so many processes in place. It's a little better now with computers because if you try and do something strange you'll get an alert. The computer is good at finding those kinds of things, right? But yeah, when you're open you're tired and you've done it all night and then you come in and you have two classes to teach and selection committee to do, it's not humanly possible. So a lot of programs there's several call companies now that specialize in transplant call that people contract with. We do that, and a lot of the programs I know in California do that. And you basically do a contract with them. You pay them a lot of money and they give you a call schedule. And usually, they give you just two or three coordinators that they rotate through so that they become part of your family. They have access to your EMR. All of the systems and checks are in place and they're in essence an extension of your program. And so that's what we do. And like I say, I know a lot of companies do that, especially for kidneys because there's just so many.
[39:28] Michelle: Well, the system sounds like there are many checks and balances in place so that people don't get preferential treatment, I guess. So that's good to know. I wanted to touch a little bit on the emotional side of transplantation and this is where my personal story comes in. So in 1998, my six-year-old nephew Trevor needed a liver transplant for glycogen storage disease and so he was put on the list and so forth. We're all medical professionals and of course, Trevor was our person and we wanted very much for him to get better. And there was a lot of conflict, personal conflict, I guess I'll say within myself of when you are praying for your person to get a liver or a heart, that means that somebody else is going to die. Trevor got two livers actually within a few weeks; the first one failed and then he got a second one a few weeks later and he ended up passing away from a candida infection. It left such a hole and a void. And I just remember our family going through that time, and I thought, this is so conflicting to have that experience. And I would imagine that the patients go through that as well. So do you want to talk about that and also just your own personal struggle, if you have that struggle?
[41:35] Annette: Yeah, definitely. Especially early on, and especially when I was taking call, it was hard because you're there looking at the donor and what happened to them, and so you kind of feel terrible, right, for that donor and that family, especially if it's traumatic, if it's like a kid that drowned or something like that, it's just horrible. But then you have to just shut it down and move on and get your patient in. The patients are curious, too. Sometimes they ask about the donor and we're not allowed to tell them anything. We can give them decade of life. We can say if it's a male or female, kind of. We just try not to because they can figure out who it might be by looking at the news and stuff like that. And so we really don't want to do that. But I can understand it's because they're conflicted too, and they're just curious. And what I would say to my patients when they would ask me that would be very honest with when we taught them to even put them on the list. And they'd say, I just feel really bad because I know what it means for me to get this. And I would tell them, well, here's the thing that's true, but really you're helping yourself and other people. Yes, but you may have so much more to give of your life, and this person was going to die anyway, right? It's not like we're killing them to take their organs. This person already has fate or whatever happening to them, and we're just trying to make the good out of a bad situation. That's how I would try and turn it around for them. Some people still would kind of focus on it. Most people were fine and they said, okay, that makes sense, and they felt better. And I think that's partly why we do have the social work evaluation on all of our patients, too, because we have to make sure they're stable and they follow them afterward, too, by the way. They're seen in the hospital by the social worker again and then in the clinic again, so they always have access to a mental health professional. And so I think that really does help. And I'm going to give you a link to one of my good friends. His name is Derek Fitzgerald, and he's a heart transplant recipient. He lives in Pennsylvania and he tells his story so much better than I can, but just briefly. He was kind of a computer guy, overweight, didn't really do much, ended up getting sick, had cancer, actually blood cancer, and ended up the treatment for that harmed his heart. So he needed a heart transplant and so he went from never touching the medical community, not being very healthy, to having a heart transplant in a small number of years. But he is one of the most grateful patients I have ever met. In fact, he would make me cry just thinking about him right now. He's amazing. And the way he tells the story, I can't even give his quote right now because A, I can't remember it, and B, it would make me cry, but I'm going to post it for you. But he talks about how he thinks about his donor family every single day and what they gave up for him and he turned his life around. He's very healthy. He's actually an iron man like me, and that's kind of how I got in touch with him, actually. And so he just tells the story so well. And I think he had a podcast, but now it's a website and he's called Recycled Man. And he does all of these talks, he does all of this work for people. If you ever wanted to interview a transplant recipient, he would be, but anyway, just massive kudos to him. But he really took the whole thing. If we wanted an ideal patient who takes their meds, follows up on stuff, does everything, he's grateful, wrote letters to his donor family, the whole package is Derek.
[45:38] Michelle: Wow.
[45:38] Annette: Amazing.
[45:39] Michelle: That's gratitude, right? Yes. And of course, we want our patients to be compliant with whatever education we provide, but it doesn't always happen. So to see that just makes us so happy on so many different levels.
[46:00] Annette: Wow.
[46:01] Michelle: Well, what is the future of transplantation? Where do you see it going?
[46:06] Annette: Well, I think it'll continue to be complicated, energizing, fruitful, and hopefully imaginative. There's a lot of people trying to still clone kidneys and print kidneys and use pig hearts. There's all of that innovation that continues for as long as I've been in it, we've been talking about using pigs to try and overcome this shortage, but we also need to concentrate in the primary care world on avoiding some of these things that lead to end organ dysfunction. That gets forgotten a little bit, but I just feel like it's always going to be a great specialty. If anyone listening is a nurse or an MA or any type of healthcare professional and they have an opportunity to work in the field of transplant, I would highly encourage that because it's so varied. You don't get pigeonholed into transplant, but it's amazing work and it's very rewarding, it's very sad, but it's just an amazing thing, I feel. And I think we can only improve our systems, our computers, and our immunosuppression.
[47:20] Michelle: It can only improve well, I certainly hear your passion and your drive, and just listening to you, I want to be a transplant nurse, so I'm just like where do I sign up? This is so amazing. And I know you've given our listeners so much information and so much emotion and just motivation to make that change if they want to transplantation. So thank you so much Annette.
[47:51] Annette: I can't talk now.
[47:53] Michelle: Thank you so much, Annette, for providing all of that. And I think Ingrid too, for referring you because she said you were going to be amazing.
[48:05] Annette: We worked together in Florida. She flirted with it. She was a cardiology nurse, and she's still in cardiology, but she did transplant for a period of time and that's how we got to be good friends.
[48:20] Michelle: Yes. Well, I'm so glad that I met her and you, so I'm definitely the winner of that whole thing. So thank you. So, you know at the end of our talk that I usually do this thing called the Five-Minute Snippet. Yes. And you definitely know all the answers to these questions because you gave me some topics that you're interested in. So I'm going to get my timer up here and we will just start and do the five minutes now. Okay, your favorite region of wine?
[49:03] Annette: Favorite region of wine? Actually, Placer County, I would say it's not very well known, but it's in Northern California. It's part of Roseville, Rockland, that kind of area north of Sacramento. And it's a hidden gem. They don't charge you $30 for tastings. And they have varied wines and they're beautiful small family wineries.
[49:29] Michelle: Okay, I have heard of that area. I will have to explore that. What does a perfect day look like involving wine?
[49:39] Annette: I think these little festivals, to have a perfect day would be having a little ticket for one of these places, one of these regions where you can have a nice breakfast at home and then go do your wine tasting. They have usually little bites there. They usually have a craft fair associated with it. And you just go winery by winery with a couple of your friends, have lunch in between, and it's a great way to find new ones. And I love it. They actually have one in Placer County in the first weekend of December called Holiday in the Hills, which is really fun. And they collect the tops.
[50:18] Michelle: That's awesome. It sounds very European and it sounds lovely. Let's see. I run because.
[50:30] Annette: Well, it's like one of those memes, I run to burn off the crazy. I always used to run with music because I was a runner and then I got into Iron Man about five years ago. And you're not allowed any kind of music or outside stimulus. You just have to be with your own head. And so now I don't do it at all. And recently I've been using podcasts when I run, but it's just a great escape.
[50:56] Michelle: Have you ever encountered a wild animal while you were on the running trail?
[51:02] Annette: No. I've seen the signs for, like, mountain lions and things like that, but I actually haven't. My friend had a bear when she was doing some trail runs, but I don't think I've had anything on the bike trail, which I also run on, but I was on a bike. I saw a coyote in the middle of the day, but that's it.
[51:21] Michelle: And do you usually have your dogs with you?
[51:23] Annette: No, my dogs are lazy. They're big Bernese mountain dogs and they're snoring right now, actually, they just like to sniff and walk.
[51:32] Michelle: I imagined them running with you. Okay. So speaking of your dogs, finish this sentence. My dogs are the best at:
[51:47] Annette: Eating and sleeping. Actually, I should say they're good at cuddling. My dogs like to sit on your knee and snuggle.
[51:53] Michelle: Yeah, I love the picture of you and your dogs. That'll be on your profile. That's the best. The most human thing my dogs do.
[52:05] Annette: That probably is the cuddling. They literally will come and sit on your knee and hook you. Their arms go around you. They definitely need that for themselves. Not only do they need it.
[52:18] Michelle: I think your favorite part of the Ironman, is it the running, the swimming, or the cycling?
[52:25] Annette: Running, because I'm not a good swimmer. Although this one I just did in Sacramento, the first one there was Iron Man California. The swim was absolutely fantastic. It was downriver, it was beautiful. It was a really nice weather day. I jumped out onto the dock and my parents were staying on the Delta King. So I literally jumped onto the dock put my arms in the air and was like, Woohoo. Because I just don't swim well, the bike, I'm always terrified of falling off or getting a flat or something with the bike. So once I get to the run, I'm happy, because even if you drag your feet, you walk. Whatever you do, you're done. You can finish.
[53:05] Michelle: Wow. When you told me, I just finished Iron Man, I went, oh, my gosh, this lady is going to be something else. And you've been everything that I thought. What's your best race time for the Ironman?
[53:23] Annette: I would say my first one was five years ago. It was 15 and a half hours. This last one I wanted to be, I thought for sure I could do 14 something. But I ended up getting asthma on the bike because it was very windy and so I had to walk 15 miles off the run and so I got huge blisters on my feet and my asthma just wouldn't settle down, so I ended up with 15:58. But I still had an hour to spare, so, yeah.
[53:53] Michelle: Wow. That's amazing. Kudos to you.
[53:58] Annette: Wow, thank you.
[53:59] Michelle: Well, you survived a five-minute snippet and you did beautifully. So, like, I knew you would know all the answers to those questions. So thank you for playing along and thank you so much for everything that you've brought our listeners and me today. I really appreciate it.
[54:16] Annette: You're welcome. It's been fun.
[54:19] Michelle: Yes. And send me all those links. I am going to post those in the show notes. But gosh. Have a great day.
[54:28] Annette: Thank you so much. You too.
[54:30] Michelle: Thank you.
[54:34] Annette: Bye, you.