Coffee + Cardiology
Coffee + Cardiology
Beckman Stem to Stern
Dive deep into the heart of cardiology with our esteemed guest, Jennifer Beckman, MSN, ARNP, CHFN as she shares her transformative journey from a nursing assistant to a key player at the University of Washington Heart Institute. Her passion for patient care and clinical excellence is palpable as she talks about the advances in mechanical circulatory support that she's witnessed and contributed to. She is committed to maintaining a delicate balance between her administrative responsibilities and her direct work with patients, where the heartbeat of her mission lies.
The landscape of LVAD programs and heart allocation systems has rapidly evolved, and Jennifer offers a front-row seat to understanding the complexities of this shift. With the 2018 UNOS policy revision, we explore the nuances of qualifying for LVAD and how this affects patient treatment decisions. Bleeding risks, comorbidities, and the ethics of patient care—it's all under the microscope. Jennifer's insights reveal the critical importance of a tailored, patient-centered approach in the ever-advancing field of cardiology.
This is Coffee and Cardiology.
Speaker 2:In this podcast, we sit down with a faculty from the University of Washington Division of Cardiology to discuss the very latest in diagnostics therapeutics and, as a special bonus, we ask what makes our cardiologists tick. We are so very pleased to have Jennifer Beckman join us today. We have actually been trying to get her on Coffee and Cardiology for a bit of time and I'm really glad that the schedule has actually worked out to invite you in here, jennifer. You have some interesting and unique roles here at the University of Washington, but before we get into those, tell us about your journey to this place that you're at right now.
Speaker 3:Yeah, thank you. Well, thanks for inviting me to be on the podcast. I feel honored. It's my first podcast ever, so here we go.
Speaker 2:We're honored actually.
Speaker 3:So I started my medical journey about 17, 18 years ago. I decided I want to become a nurse and was in nursing school and became a nursing assistant, and the only job that was available in the hospital I wanted to work in this was in Wisconsin was on the cardiology, cardiothoracic floor, and so that was where I first took care of patients that just had surgery or were at heart failure, had heart attacks, those types of things, and immediately fell in love with the population. After I graduated from nursing school, I was a bedside nurse for a few years and then was recruited to be their VAD and heart transplant nurse coordinator, and so that really took me much further into the specialty which I am still working in today, which is great. And I further fell in love with the population, which is great. And I further fell in love with the population.
Speaker 3:I got a very broad sense of how to take care of patients at the end stage of their heart failure journey, and the program that I worked in was very small, and so I fulfilled not only the clinical duties but I also helped really grow a program and understood things from a programmatic hospital building standpoint, which is it's a lot. There's a lot to entail all those details. So then I decided why not go back and become a nurse practitioner while I was busy doing that and went to school, became a nurse practitioner and was recruited out here 10 years ago this July which is time flies when you're having fun and I joined University of Washington 10 years ago and worked clinically this whole time and then started really working on my leadership skills. The last five, six years have dealt into quality in our program and then last fall took over as the associate director of our program for mechanical circulatory support. And just having a blast, having a blast, I love it.
Speaker 2:That is fabulous, and it strikes me that the roles that you have played even, it sounds like, from really early on in your career, have incorporated not just the clinical work but also a significant administrative role in this, what is now a burgeoning and, dare we say, a fairly well-established field. But when you first got into this it probably was very much in the building phase.
Speaker 3:Yeah, absolutely. When I was a staff nurse, our LVADs, our left ventricular assist devices, those were still devices that didn't last very long. It was the XVE pumps which if you got a year to a year and a half on support, you were lucky and only for bridge to transplant for those patients. And you know, I saw HeartMate 2 come out, I saw HeartMate 3 come out, the HVAD pump, and so our technology has grown so much in the last 10, 15 years and it's been just wonderful to be a part of it and to be a part of really changing a program along with the changing technology has been really special to be a part of, and so some of the other work. I've done some research as well with our clinical engineering team and it's just fascinating what we can do from that type of research to say, okay, how can we better manage these patients with our current pumps and what ideally would be a next generation pump that would work best for our patients?
Speaker 2:Yeah, you've sort of grown in your career along with this really rapidly changing thing. But I would guess it takes a bit of a special person, maybe even somebody who's flexible, to be able to kind of morph your career and your focus along with this really rapidly changing technology.
Speaker 3:Yeah, I don't know if my husband would say I'm a flexible person by nature, but thank you for that, jim. No, I think I have a very organized mindset, and especially so in my work life, and so you know the type A personality, self-driven type of motivation. That's definitely how I would describe myself, and I think when you're juggling administrative and clinical duties in a super sick population, you have to be ultra organized, and so, thankfully, I found a path for myself that highlights those attributes, which helps being successful.
Speaker 2:Well, tell us a little bit more about kind of your administrative roles in general and maybe even some of your clinical roles, because you are an administrator for a lot of people who are on the front lines as well as doing frontline work yourself. What is it like to actually sort of supervise people who are caring for patients on mechanical circulatory support and care for these patients?
Speaker 3:Yeah, well, I think to take a step back. When I was approached to do more administrative work, you know, in the past few years it was very important to me to maintain my clinical competence and I think you know there's a lot of leaders in healthcare who they have to leave behind their clinical work just because of the work they do and it's full-time work and it was very important to me to not lose that, first and foremost because I love taking care of patients. It's what gets me up in the morning, it's what got me into this job in the first place, this career, and I still find huge value in talking to patients and taking care of them and making them feel better, and so for me that was very important and I'm very happy and lucky and blessed to be able to do that with a leadership administrative role here. So I think working with people who are also taking care of patients when I have my administrative hat on is helpful because I can see areas of improvement very quickly, because I'm boots on the ground with them, so I can see where maybe there's gaps. That I had a blind spot in from a programmatic standpoint, that I didn't know it was there, and so it's helped me be able to move things forward.
Speaker 3:I'm hoping in a positive way for the program because I am seeing what's going on on a day-to-day basis and from an administrative standpoint. There's many things that I've been doing, but I think the biggest thing is I help manage and maintain our Joint Commission certification for our program, and so CMS. You have to have a certification body for a program like a Mechanical Circulatory Support or LVAD program, and so there's many, many things you have to prove to the Joint Commission on a yearly basis, and then there's an every two-year on-site visit that you have to host and prove that you are doing things and having compliance and following their standards and your own hospital standards. And so I had my first on-site visit that I really helped manage this past January and it went very well and I was very relieved to have it over with and understand the process a lot more.
Speaker 3:So that's a huge part of my administrative role with the program.
Speaker 2:Absolutely. It strikes me that it really does take a village to take care of a VAD patient, that this is not something that is done by one person, but the VAD coordinators are really kind of the ones who are boots on the ground, who are front and center, with whom nothing else is actually going to happen. But maybe you could talk about that structure, because it's a little bit different, I think, than other parts of healthcare that our listeners might be used to.
Speaker 3:Yeah, yeah, absolutely we. You know LVADs are so special, even 15 years after you know, more than 15 years after they were created, that we really need to have a team of experts nursing experts that are there for the patients 24-7 if something should happen. And that's what our bag coordinator team is. They are wonderful, excellent human beings. I couldn't have a better team helping take care of this population. We have four full-time bag coordinators here and they really help and support patients stem to stern. Once an implant goes in, they are there, they're in the OR and they're with them in the OR when the VAD gets turned off, if they have a transplant and they're on the phone with hospice end of life, they're really there, stem to stern, in hospital, out of hospital.
Speaker 3:And I think it's very important because there are things medically that could be going on with a patient with an LVAD that could be related to the LVAD or they could be completely unrelated, but because they have an LVAD, we really need to have a clearinghouse of making sure patients are being taken care of appropriately. They're on blood thinners, so we need to make sure that if an intervention needs to happen, that we don't stop blood thinners, so they're really the safety net for the patient and they get to know them extremely well. They know their spouses and caregivers, animals, dogs, what have you. They know them so, so well. And again, this is part of what brings me joy in this population is you really develop relationships with our patients and their families, and the VAG coordinators even much more so, because they're their first phone call if something's going wrong. They talk to them in the middle of the night, on the weekend, during holidays, christmas time, whatever, should there be a problem, and so we couldn't do this work without them, and they are just wonderful.
Speaker 2:I have to say that that is absolutely true. So I still get some of the emails from the mechanical circulatory support program and when a patient passes away, the level of detail that is shared, you know, confidentially in that email and this is a confidential group, it's not like this, you know, goes out to everyone. But the personal description of that email and this is a confidential group, it's not like this goes out to everyone. But the personal description of that patient, the personality of the patient, that comes through. It's beautiful to read that actually, and I don't know that many other VAD programs and maybe that happens everywhere, but my impression is perhaps a lot because of you. But my impression is perhaps a lot because of you. This is the character of this program. It is not just one that's technically excellent, it is one that actually sees the patients for who they are. They're not a machine. Certainly you may have a machine in them, but they are a person and I think you guys do a great job of holding that up.
Speaker 3:Thank you, thank you so much. Yeah, I, I personally I always care for patients like they're my loved one dad, mom, grandma, grandpa, whatever, sister, sibling, and I hope that's you know. It's patients first, patient-centered care, and that's what it should be. And so I think, especially with end-stage heart failure, we can do so much for patients with all the devices and I mean you know this, jim, with your ethical hat on there's so much that we can do. It's really hard for our team to just, especially at end of life, for patients to step away and say, okay, enough is enough. We know it's time. And so having someone that patients can recognize, either in the hospital or on the phone for their family or the patient, is so special and it just brings that patient's journey to an end in such a beautiful, respectful way. I hope we never lose that in our program With you leading.
Speaker 2:I don't think let's wind the clock back a little bit on the patient experience too, because one of the fascinating things that I find is sitting in and I haven't done this for a while, I need to go back to this but sitting in on the selection committees. There's such a fascinating interplay. As you are sitting there trying to figure out who should receive these devices, what are the issues that play into it, maybe you could tell us a little bit. Bring the curtain back a little bit.
Speaker 2:Tell us about what goes on in those I guess you could call them selection committee meetings? But, it's a little bit different than that, even.
Speaker 3:Yeah. So those meetings are where we take any advanced heart failure patient who needs advanced therapies and we bring them to a group of our specialty clinicians so there's probably 50, 60 people that participate in these and we really look at patients, stem to stern and say what advanced therapy options would fit that patient best and what would serve them best in the future. And so in this day and age, with how the world of transplant is and MCS, it's changed a lot in the last five years or so and it's been really interesting to see that dynamic change. But I think the most important thing is really looking both not only medically but psychosocially which patient may best fit which therapy. And so because of the specialty folks that we have in the room, we're really able to look at that from the ground up and make sure we're making a great decision for the patient. So I don't know how much back of the curtain work.
Speaker 3:I can tell you, but the discussions can be very lively and sometimes it takes multiple meetings to come together as a team to decide yeah, this is the best option for this patient. Our VAD coordinators if someone's going to potentially have a VAD, they are involved. They do education with every single potential patient to make sure patients are making the best decision, that they have all of the necessary information to make a decision, which is very important because I think when you're talking about LVAD, it's scary and people Google things and they shouldn't, and they see things on the internet and they might not have all of the information to make a good decision for themselves either, and so we definitely have our team involved right away. Even if you know we think, yeah, they're probably going to go for a transplant, we get them involved right away.
Speaker 1:You talked a little bit about those changes. So, pulling back that curtain a little bit, what are some of those big changes you've seen in kind of how you guys make selection?
Speaker 3:Yeah, well, in 2018, the UNOS heart allocation system changed and really that changed the face of LVAD programs, because having an LVAD was you weren't getting as priority for transplant listing, and so you were able to transplant patients who have short-term MCS devices instead of durable MCS devices much faster, and so our nationally this is published data the LVAD implant numbers are quite low after that change, and so the face of how to treat people is just a little bit differently. There are certainly those folks that need a different therapy before a transplant, and that's why we have LVAD therapy for sure, or age is a preclusive decider with them.
Speaker 1:So, yeah, and when your voice is in all of that conversation, I mean obviously there's maybe advocates for different therapies but how do? You feel like that?
Speaker 3:voice is heard in that process. Sometimes patients. It's very clear we should be going to transplant In those patients where either transplant or LVAD could be an option. That's where we start talking about more nuances, like how is the ease of the patient getting back to the hospital, because with an LVAD you need to come back to the hospital very frequently. Do they have great social support? Is there a caregiver lined up? Is there a backup caregiver potentially lined up? Because these patients typically need support for a little while. It's very similar to transplant but a little bit different. So we just try to weigh each aspect of patients and then medically, there's reasons why patients aren't great LVAD candidates as well. So for an LVAD, you need a large left ventricle for the LVAD to fit appropriately and you need a right side of the heart that works well. So if those aren't the case, then LVAD therapy isn't a great option either.
Speaker 2:What are some of the other considerations in LVAD candidacy?
Speaker 3:Yeah. So a big enough ventricle is needed. A right side that works somewhat well is needed Not perfectly, but somewhat well. They need to have social support. I think medically that's really the big two things that you need to have a patient be well supported on an LVAD. And then really it's just looking at comorbidities, because usually patients when they get to us they've been through everything mitral clips, a lot of heart failure meds, a lot of hospitalizations. They probably have pulmonary hypertension, which isn't a problem for our population. And then really the right-sided function is a huge problem because if it's not working well, then the LVAD you're going to have a lot of problems managing that patient longitudinally and then just making sure that they can come back to the hospital for readmissions if they need it, and then a lot of clinic visits and testing.
Speaker 2:How about kidney disease?
Speaker 3:Yeah, kidney disease, thank you. So end-stage kidney disease is a problem, so having a patient who requires dialysis on LVAD therapy is a very big challenge for us. There's a lot of dialysis centers in the area that are nervous about taking someone on an LVAD because their blood pressure isn't like a normal person's and they require more training, and so if someone's on dialysis, that's typically quite a barrier for us currently.
Speaker 2:Yeah, and that's really too bad because a lot of them actually are either near dialysis or actually on, and that would be. That's a population that can be very stabilized, because that's a problem for transplant too, right.
Speaker 3:Yep, unless we can do a heart kidney transplant. But yeah, that's absolutely, and we have taken patients. Sometimes it's hard to know if their renal disease and dysfunction is related to their heart failure, and so if you fix the heart failure, you may support their kidneys a little bit better. And so we've taken some patients who've had pretty decent kidney dysfunction and largely they've done okay. Some needed dialysis in the short term and then were able to get them off prior to discharge, but yeah, that can definitely be a barrier as well.
Speaker 2:How about bleeding issues.
Speaker 3:So all patients on LVAD therapy need anticoagulation with warfarin.
Speaker 3:There was actually a recent trial that was published last year called the ARIES trial, and the ARIES trial looked at if we really need aspirin or not for our patient population with the HeartMate 3 LVAD, and the ARIES trial looked at if we really need aspirin or not for our patient population with the HeartMate 3 LVAD, and the trial showed that technically you don't, based on their end points of the trial, and so programmatically we made a decision that any new HeartMate 3 LVAD patient was not going to be started on aspirin and they're just on warfarin, which is a huge change for the fields worldwide, big change and so.
Speaker 3:But there are problems. So if patients aren't able to tolerate anticoagulation with warfarin prior to, or if they have significant bleeding events, we definitely need to look at that prior to an LVAD implant because they certainly will probably have bleeding events after the fact. Same with. You know, if patients have ongoing cancer history, anything that would enhance their bleeding or clotting risk, we need to look at and we usually talk to our hematology oncology partners about those patients to see if we think we can safely support them.
Speaker 2:But it sounds like having cancer is not a contraindication necessarily.
Speaker 3:Not necessarily. Yeah, surprisingly, we have patients right now who have active cancer right now with their LVAD. I think it depends on what kind and how aggressive it is, and that's why we always have oncology involved to help us decide. Are we going to be benefiting the patient by supporting their heart if they have an ongoing cancer, if their life risk is, you know, if it would make sense to move forward with that?
Speaker 2:Yeah, how about psychiatric disease?
Speaker 3:Yes, a lot of psychiatric disease.
Speaker 3:Like I said before, when we put an LVAD in a patient, we really own that whole person, and that includes psychological diseases and supporting them from a psychosocial standpoint afterwards. So, yeah, we have patients who have addiction medicine concerns, who are actively using substances that go on to therapy, that we need to support. We are very fortunate we have an addiction medicine program and team here at UW that helps support our patients and sees them after their implant, and then we also have a psychiatrist as well now, which is wonderful for our patients. We also have a support group for LVADs LVAD patients and their caregivers and we're looking at trying to expand that in different ways to support the patient versus their caregiver a little bit. One of the things we know is that caregiver burnout and stress is very high. It's actually higher than patient stress level because that caregiver feels this huge, immense responsibility to keep their loved one alive, and so we really want to focus in the future that's one of our points. Moving forward as a program is to help support the caregivers a little bit more.
Speaker 2:Why is it so stressful for caregivers? Besides, this whole issue of somebody's life is dependent on a pump. What does the caregiver? Actually have to, which is bad enough, I totally get that, but what is the? Yeah? What sort of stresses do caregivers?
Speaker 3:experience, I think you know the education that patients and caregivers get is very robust, and I think they just worry they're going to do the wrong thing in general. So you have the electrical components, which is scary enough, and then you have all of the medication and all of the different timing, and it's a lot, and there's a lot of changes up front, and then patients are usually debilitated, so they have a physical need of rehabilitation when they get out of the hospital.
Speaker 3:And then we have the little thing known as the driveline, which is the electrical cable exiting the abdomen which connects the computer or the controller of the device to the rest of the pump, and so that exit site. We stress very seriously that if it gets infected it could be a very serious event for the patient. And so I think we stress all of these things and the patient's still in a recovery phase and it's falling on the caregiver to really be on it with all of these things. And really when they get home they have to come and see us at least once a week for the first month and then every other week for a few months and then monthly thereafter, and so it's a lot for someone to manage, and that's if it's just the two of them, if they have children at home or if there is other dependents. It's a lot to put on someone.
Speaker 2:So they have to drive the patient too, right? Correct Can patients drive with an LVAD.
Speaker 3:They can drive after about three months. We just want the sternotomy to heal, but after that we do allow. As long as they're stable and they haven't had any dizziness or symptoms where we think there would be an issue with driving, we do allow them to drive after three months.
Speaker 2:Wow.
Speaker 3:Yeah, that's neat though.
Speaker 2:Well, I mean a lot of patients with LVADs do return to some semblance of normal life, right?
Speaker 3:That's the goal, that's really the goal of the therapy and that's what we tell people.
Speaker 3:It does take a while for their heart failure symptoms to get better after VAD, especially if they've been dealing with heart failure for many, many years.
Speaker 3:I usually quote people at least six months when they get out of the hospital to where they start turning a corner and feeling better. And I always just remind them that they've been in heart failure for so, so long that their body needs time to really recover once they have good blood flow through the rest of their body. And so we have patients who are typically they come in and they are frustrated because they say I have good blood flow through the rest of their body. And so we have patients who are typically they come in and they are frustrated because they say I have good blood flow, I should be feeling better and more energetic. And they just forget that they've been through a major operation and have a lot of recovery phase and we send people to cardiac rehab. Everyone goes to cardiac rehab to get functionally a little bit more rehabbed quicker. But yeah, it can take quite a while for that recovery phase to happen.
Speaker 3:Yeah, I can imagine, and probably everybody's a little bit different in that too, but our goal is that they're able to do things that they loved before, aside from getting into water or doing rugby.
Speaker 2:No more competitive swimming with an LV.
Speaker 3:No swimming, no hot tubbing, no bathing in the bathtub. But yeah, other than that, like if patients want to travel, we really try to make it available to them. There are high risk things that we don't want them to do, like boating in case they would fall over in the boat, or motorcycle riding really mitigating risk if at all possible. But they've had a new lease on life. A lot of the times these patients would not be alive within a year, typically if they haven't gotten the therapy, and so we and me personally, I encourage them to do things that bring them joy, plan things that bring them joy. You know, I usually ask in my clinic visits what are you planning?
Speaker 2:That's something you're going to enjoy.
Speaker 3:Are you going on vacation, you're going to see the grandkids? You know what are you going to do. That'll bring you, bring you happiness.
Speaker 1:How do you balance that conversation when there may be just still being evaluated that like there is all this optimism and you know you could have this many years and you could be doing these things after your surgery versus I mean complications or not getting a transplant or whatever it is like? How do you balance that?
Speaker 3:conversation? John Michael, that's an excellent question. It's really tough because if surgery and recovery goes well and patients take care of themselves, typically they do really well, but complications happen all the time. We haven't talked about stroke. Stroke is the biggest, most scary thing patients ask me about and ask our team about is a debilitating stroke, and they do happen. They're rare but they happen. So you can have all the optimism in the world but we do tell people that they are at risk for readmissions, a stroke, bleeding issues, right, heart failure.
Speaker 3:We do have to have that conversation, yeah, and it's tough when you have those patients who you think are going to sail through and do really well and then it doesn't happen and they're in the hospital a lot or they're just not feeling well or they get an infection. It's tough, it's really tough. It's tough for us as the team taking care of them, but we're not in their shoes. And so there's been some work, some qualitative work, looking at if patients could do this again, would they? And we actually asked that question in our. We do a quality of life assessment for our patients and it's really interesting what people say. There are patients where I would look at them objectively and say oh, this is someone in the hospital a lot, or they've had this serious complication and I would think maybe they would choose not to do this and they do.
Speaker 3:And you talk to them about it and they say well, I've had two Christmases with my family. Of course I would exchange all of this hardship to get more time with them. And then you have other patients who maybe are doing seemingly well and they said I probably wouldn't have done this again in hindsight. So it's really tough those conversations, and you never know what someone's willing to basically put up with to get more time in this life. And it's not for us to judge and it's not for us to try to quantify for them. It's for us to give information and for patients to make their own decision and then for us to support them as much as possible after the fact.
Speaker 2:That is such a key point to make.
Speaker 2:It's so hard to predict what people are going to consider worthwhile.
Speaker 2:There's an entire literature on decision regrets about these different things, and I haven't looked into it for a while, but it strikes me it's probably quite similar to what you're describing is that we can't predict what people will say that they regret or that they're grateful for.
Speaker 2:And likewise there was many years ago a study, a randomized, controlled trial, of PA catheters. Of course, in order to get into it you didn't need one, and so it was highly skewed in people that you know didn't need them, but it didn't show any mortality benefit. The quality of life was better, ironically, in the PA catheter group, which kind of made no sense. But one of the things he did as a sub-study was actually say how much time would you trade for perfect health, and it varied so dramatically between when you asked them implant, when they were in the hospital in throes of heart failure, and then after they made it out of the hospital later on. Later on they were willing to trade a lot less time for perfect health because they were feeling better, but at the moment when they're feeling quite poorly, they were willing to trade more time, but that shift over time, over months and months, was really dramatic.
Speaker 2:It's very hard to predict how people are going to respond to these things?
Speaker 3:Yeah, absolutely. And there are folks too. I see this in a lot of the younger population but they get really tired of carrying the peripheral equipment around too. And so the body image especially. I mean not only the younger population, I think I see it more, I hear it more in the younger patients. I think after a while they seek getting rid of that because they miss going swimming, they miss just getting up and going. They don't want to be attached to things anymore, and that's a whole different psychological mind shift is when you're dependent on five pounds, five and a half pounds of equipment that you have to always be attached to. You know you have to sleep with it and shower with it and you just can't disconnect from that. And so it is interesting how things change over time. And those young patients I see a lot of the times they feel better faster and they want to just move on from the therapy faster. Sometimes they can if they're a transplant candidate, sometimes they can't if they aren't.
Speaker 2:Well, that's a great segue. I wanted to ask you about the difference in patient psychology between bridge to transplant or BTT bridge to recovery, which is rare, bridge to decision, which is even more rare at this point because we have peripheral mechanical stroke to report ones support devices and destination therapy or DT.
Speaker 3:Mm-hmm, that's a great question. So I think there's two different ways that I see patients looking at this, and one was just brought to light. I think when folks are focused on getting transplanted, there's always a carrot to what they're doing. They always say, okay, I'm doing this because I want to get transplanted, or I'm doing this because I want to hurry up and get listed. I want to hurry up and get listed and there's a focus there specifically towards transplant, and I think that's great. And transplant is still the gold standard for advanced heart failure therapy, although the survival curves of both LVAD and transplant are almost very similar now, which is fantastic. But I worry about those patients not really enjoying the time they have and I remind them that this time that they're waiting to be listed or getting a transplant is actually they're doing amazing work. They're getting their bodies in a healthier place.
Speaker 3:They're going to go into transplant in a healthier state and hopefully recover a lot faster and have better outcomes from that. And there is need for that time period on an LVAD if they're waiting to get transplanted. But I see a lot of motivation to get listed to get transplanted and sometimes have to remind patients that it's not a free lunch when you get transplanted. You're trading a disease for a disease because it's not a fix to what's going on. There's a lot that involves post-transplant as well and there's complications that can happen post-transplant as well. And then you have the destination therapy group and in that patient population I was reminded by a patient recently who our committee decided you know what, this patient is not going to be a transplant candidate, that's going to be off the table. And the patient told me he was relieved relieved to have that limbo taken off of his plate. And I was like huh, I guess I never really thought about that waiting period. You know, I think once patients are listed and they have an LVAD, they're always waiting for that phone call. They're always stressing about when is it going to happen? They ask me all the time when do you think it's going to happen? And it's like I don't know when it's going to happen. But to have someone say you know what it was, it's actually a relief to know that this is just what my life is going to be like and now I can kind of focus on doing things I enjoy. It was really interesting to me to kind of hear that perspective.
Speaker 3:But I think for us, for clinical management, you know, we really in our program we treat people the same if they're listed or they're destination therapy. And I think it's very important there's a lot of crossover in our patient population. So if they're not a transplant candidate today, they may become a transplant candidate if they lose weight or stop using substances. But if they relapse or something else happens, they may be destination therapy. And so we have kind of a yin and yang to this all the time. But the only thing I will say is that someone is for sure destination therapy. We may not see them as often as the other folks and so we give them a little bit longer leash, just a little bit. But they can call us and you know we tell them when to call us if there's problems all the time.
Speaker 2:That is so fascinating. There's such an interesting dynamic, especially in when people are going back and forth, potentially going back and forth and how your staff you and your staff have to kind of manage that. You're managing expectations, you're personal counselors to a lot of these patients. It sounds like you are dispensing wisdom on a regular basis to help people actually cope with their lives and thrive in the situation that they're in. But having to hold all of that together, it really strikes me it takes a special individual, a special set of individuals, a special team to be able to provide this holistic care for people.
Speaker 3:Mm-hmm. Yeah, it's truly. It's not just a cardiology problem. It's, like I said, stem to stern. It is definitely a holistic way of providing care and I'm thankful that we have team members now to help us with some of these things. It would always be great to have more support for patients, and that's why we look at adding more support groups and things like that, because even with everything we offer, patients still want more. Some of them still want a VAD-specific substance use group support group, for instance, was asked of me in the last couple months or just more age-specific support groups, so the younger people can talk to the younger people about what they're dealing with versus patients who are in their 70s and 80s. They have a different need base, right.
Speaker 3:And so, yeah, it really it's a special subspecialty. Again, that's I love it, that's why I'm still doing it all these years later.
Speaker 1:Well and you are dealing like in this very interesting place close to potential death and dealing with that a lot, and you talked a little bit about supporting caregivers is a big goal. How do you support yourself and the team in thinking of supporting through all of that emotional and mental challenges?
Speaker 3:Yeah, yeah, our teams we really celebrate the highs in our patients and the highs are really high. You know, getting someone successfully transplanted that I've known for five years just happened last week. It just it's amazing, absolutely amazing. You know the family. They hug you in the ICU. You're so excited when things go well and then you have patients, alternatively, who you take care of for eight years, who die because there's either a complication or there's a comorbidity that is bringing them to the end of their life.
Speaker 3:And I think as a team we talk about it. We kind of debrief. If we need to, like Jim was mentioning, we send out emails notifying the rest, the broader team, when someone passes away. And that's kind of our respectful way of saying goodbye to that patient because we know them so well. But it's tough, it's really tough. Sometimes you just need to sit down and talk it out and say, hey, this was really tough. How are we going to move forward? Is there something we can learn from this for another patient? And really, again, end stage heart failure is what we're dealing with, and so bringing someone to that respectful death is a gift we can give people.
Speaker 3:And I think we forget about that a lot, and it's this weird juxtaposition of we're supporting someone with a means that we didn't have available to us 30 years ago, 25 years ago, even almost 20 years ago.
Speaker 3:It's just wild that we can do what we do and get people more time, but knowing, yeah, it is borrowed time in a lot of instances, and working towards making sure we know what goals are for patients and we're re-evaluating those goals.
Speaker 3:We have our palliative care team, which I haven't really talked about yet. They are absolutely tied very closely to our patients and our program. They see patients multiple times a year at their first implant discharge visit in the clinic. We talk about goals, we talk about their quality of life, because the mode of death with an LVAD also changes because you have a device helping circulate blood, and so even having the conversation about surrounding death changes a little bit because you have this device and eventually you need to shut it off and that's really tough. It's tough on families, patients, the caregivers, the bad coordinator team who sometimes has to be the ones to do it, when all you've been doing for years sometimes is trying to keep this pump working and then you say now is the time we need to turn it off, so it is a tough process to go through.
Speaker 2:Yeah, You're into exercise. Is that part of what?
Speaker 3:helps you with this or.
Speaker 3:Yeah, yeah, I um, I like exercising, I like to take care of myself. I think working with this population you just um for me it, it helps me get that release if I need it. Um, I have a daughter, I have a three-year-old who I absolutely am in love with and you know, becoming a mom and a parent has really made life that much sweeter for me, and so I tell my family and tell my husband all the time. I get the dose of reality of what life can be like if I wasn't so healthy or if my family wasn't so healthy every day, and I'm so thankful when I go home to have that. So I think your perspective changes a little bit. When you take care of this population day in and day out and you see these highs and you see these lows, it just helps all the other life minutia go away a little bit and understand gratitude yeah.
Speaker 3:Yes, yeah, and the simple things right being thankful and feeling gratitude for little things that you wouldn't normally take for granted if you were, maybe a banker or something like that.
Speaker 1:Well then, anything, I you lightly touched on some research you're doing which you can't, probably can't talk much about, but like, what are some more exciting developments you see coming for this space?
Speaker 3:Yeah. So I think industry. You know we're in this part of our industry where we have one pump available right now, one LVAD available. I would love to see a competitor come out because I think when you have two pumps you're you're always driven to do better, so that would be great. There has been talk ever since I started working in the specialty about having a fully implantable LVAD so you take away that nasty driveline that can get infected. So I know there's work on high levels with industry that are working on those types of things. Some of the most exciting research I've been involved with is very simple things that have never been published in this patient population. So we did a study a couple years ago now looking at how to optimally check a blood pressure in a continuous flow physiology patient and we got it published and it's widely successful.
Speaker 3:Simple things like a vital sign is still not fully published in our patient population, because things are just starting, you know, to develop and technology continues to change. So some of that is very simple, but it's extremely meaningful and it makes a huge impact on patients, because high blood pressure can cause stroke and so if we're not managing it appropriately or checking it appropriately, that has huge patient implications. So there's a lot to be done, a lot of research that needs to be done. Well, that ends on it.
Speaker 2:Yeah, well, and on so many other things too. Thank you so much for joining us today.
Speaker 2:This was tremendous. You just you pulled back the curtain on the VAD program. I think in a lot of ways that our listeners are going to be able to understand whether they're referring patients to our program. They understand now a little bit more about what the patients are going to be going through, and for patients too, and for staff members who are listening in, to understand this really central part of UW cardiology and the ways that you've served people who are really otherwise at the very end and you are giving them extra time. It might be borrowed time, but it is extra time. You do it with compassion and wisdom and a holistic sense. I think we owe you a huge debt of gratitude, actually.
Speaker 1:Thank you 100%. Well, and can't leave off without also talking about your leadership role and bringing people together with the Heart Failure Conference that we have now. Yes, you started it right.
Speaker 3:I was involved in the first one. Yeah, minutely involved and then got more involved as time and years have gone by. We're really excited to bring really the region, maybe even national, international folks together to talk about all things heart failure. Our next meeting is going to be this coming year. Do you have the dates, john?
Speaker 1:February 21st and 22nd. Thank you. Thank you so much. Location TVD, but we have it on the calendar.
Speaker 3:Yeah, we'll have more information out, but we'll really be talking about all things heart failure, advanced heart failure therapy, cardiogenic shock management. We'll have surgical representation, cardiology, interventional cardiology and allied health. You know everyone's involved and we'd be happy to have everyone and host everyone to have some great conversations.
Speaker 1:Fantastic. Look forward to it all. Thank you so much for joining us today. Thank you for having me today. Really appreciate it.
Speaker 2:The only thing that I will say now is don't let this be your last podcast.
Speaker 3:That's right? I hope not, that's right.
