Good afternoon everyone. It's my pleasure to introduce Dr. Aline Gregosian, the presenter of this year's Peter Saffer Honorary Award Lecture. Dr. Gregosian completed a residency in emergency medicine at Drexel University, followed by a fellowship in critical care medicine at the Mount Sinai Hospital in New York City. In 2019, while in training, she received an urgent heart transplant after being diagnosed with familial cardiomyopathy. Since then, she has embraced her unique perspective as both a patient and a doctor, leveraging her voice to passionately advocate for the importance of organ donation, transplantation, and living with chronic illness. Dr. Gregosian is currently an intensivist through Equim Medical, and an associate medical director for the Donor Network West. She's also the chair of the Transplant Community Advisory Council under the American Society of Transplantation. Please join me in welcoming Dr. Aline Gregosian as she presents, New Heart, New Life. Hi, everyone. I'm so thankful to be here. I can't believe that people still want to hear my story, but here we are. I'm Aline Gregosian. I'm an intensivist through Equim Medical, and I'm here to kind of tell you guys what happened to me over the last couple of years towards the end of my residency training. I have no relevant disclosures pertaining to this lecture specifically. I am a physician at Equim. I'm an executive at Donor Network West as their associate medical director. I'm a consultant for both Paragonix and Abbott Cardiovascular. As an overview, we'll go through my story, some not-on-your-boards critical care pearls for all of you, and then kind of, I'm not going to be too cheesy, but you guys are the ones that decided to come to this lecture. But I do want to talk a little bit about how I found the silver lining in everything that happened to me. Starting with the story. So, I'll take you guys back about five years and two months to November of 2018. At that time, I had been an emergency medicine resident applying to critical care fellowships. As you guys probably know, usually fellowships interviews are done between August through September, October, and then the match is November, December if I'm not mistaken. And everything had been going really well in my life. I was 30 years old. I was in my final year of emergency medicine residency at Drexel. This was in Philadelphia. Academically doing really well. I was excited to go on to do fellowship. One of my top programs was the Mount Sinai Hospital in New York City, and that's where I ended up matching. So, that second picture is me, November of 2018, celebrating how I matched into this amazing critical care fellowship at one of the best hospitals in the nation. And then the only thing that I sometimes forget about what was going on at that time, I thought I was doing really well, but I did have this persistent cough. Started around, I want to say, end of October, beginning of November of that year. I had been, I think I got sick or maybe I had some sort of congestion. I was really chalking it up to nothing. I mean, as you guys know, during residency, some of us, we work through anything. There's all these stories about how people were working with IV bags and things like that. I remember there were a couple of my co-residents who had the flu. So, I was like, maybe it's that, maybe it's something else. I don't know. I didn't think it was that big of a deal. The point of that being that even as I was going through this illness, it wasn't really keeping me from doing anything. So, one of the common questions I get asked is, didn't you have any other symptoms? Couldn't you have diagnosed yourself with something? And no, I mean, I was still going to work okay. Celebrating me getting into fellowship. In fact, there's a picture of me just like the Saturday before everything happened. And I felt fine. I was still working out, probably not as much as before, but I think that's because I was on night shifts. And, you know, there really was nothing that I could complain about. Towards the middle to the end of December, there was this one shift that I had. I was an ER resident, but I was working as the ICU resident at one of our community hospitals during residency. I went to work that day. This was the week before Christmas. And my attending, my ICU attending, she's probably watching this or she's going to watch this at some point, but it was Dr. Freed. She noticed that something was off. And I remember her specifically telling me something like, you know, you're stopping in between sentences to take a deep breath. Something is off with you. You know, you're not really, there's something off. And, you know, we're ICU doctors, we can tell these things. And she even said, she's like, if you don't feel better, get a chest x-ray. You know, she said all these things. And I was like, yeah, I'm fine. I'll just finish up my 24-hour shift like a good resident. And then I'll figure it out after. That night, I actually also had, we used to run to the codes at that particular hospital. And I would always take the stairs because it was a way for me to get exercise on these 24-hour shifts because I wasn't going to be at home. And I remember that particular night, there was a code on the floor and I just, I had to stop at the, in the stairwell before I got up to the second or third floor. And that was really weird for me. And I was like short of breath and something's off. Finished the shift, ended up going home. So keep in mind, we started, I started the shift the day before. I probably went home the next day around 7 or 8 a.m. And then I felt really sick. When I say like, I couldn't walk just a few feet to get to my own bathroom in my apartment without just like stopping to take a deep breath. Something was definitely off. Following day, I, or sorry, I kind of slept throughout the day as much as I could. And that night was when I was like, all right, something is off. I gotta, I gotta go to the hospital. I happened to be dating someone at that time who came to visit me. And he was surprising me because it was right before Christmas weekend. And he was worried about me. You know, he had told me something looks off about you. Let's go to the hospital. I ended up going to the ER that night. And I want to say, I think I had shortness of breath. I had a cough. I had, I was tachycardic. They did a chest x-ray. It looked like I had, you know, possibly a multifocal pneumonia, but it was still really hard to tell. You know, I'm overall a healthy 30-year-old. We don't really know what's going on, but you're going to need to get admitted for a further workup. And while I was hospitalized, everything got worse. The last thing I remember from this particular hospitalization was feeling really, really cold and sweaty. And I remember getting really nauseous and looking up at my own monitor and noticing that my heart rate, which had been in like the 120s up until this all happened, was now like 30, 29, 28. And I was like, something's off. And that's the last thing I remember from that night. I had to get resuscitated. I ended up getting intubated. I, you know, was on pressers. I ended up in the ICU. I think they were still doing a full workup. I don't remember much of this process, obviously, but I was taken to the cath lab. They did a bunch of things. And eventually, I wake up in the ICU a couple days later, and I am still intubated. And there's a bunch of people around me, my own colleagues, my own attendings, my own, you know, the nurses that I had been working with, my co-residents, and everybody seemed really worried. And they were like, yeah, you know, your EF is 5%, and you are very sick. And do you know what's going on? What can this possibly be? So, I eventually got transferred to Penn, which is the place that I ended up getting my heart transplant. So, when I got to Penn, they told me, you know, because of the pathology, I ended up finding out it was familial dilated cardiomyopathy, was the official diagnosis. But it looked like it had been subacute, and I had really dilated ventricles. And so, they couldn't do much. Basically, the only thing that they could have done for me at that point was an urgent heart transplant. I got listed. I got diagnosed, listed, and transplanted, and discharged, all less than about three and a half weeks of my life. So, it was this completely new diagnosis. I even remember not totally understanding if I was a person with chronic illness or a disability, because it happened so quickly. I was like, well, now I have a new heart. I'm fine. The recovery itself was very interesting. I think keeping in mind that up until all of these different things that happened to me, I had been healthy overall. So, I think the recovery wasn't too bad, but of course, I did have some issues. I ended up having this acute rejection episode. So, I had to get a midline place, and I had to get some steroids at home, which is that first picture. I started learning what it was like to take 20 pills a day, four times a day. It was pretty crazy, and I finally understood what it meant when patients either forgot medications or had difficulty with their medications. I had to learn all about the different side effects. All the scars that I had on my body were this new normal for me that I had to be okay with. Of course, physical fitness, which was a big, big deal for me. I remember when you get a heart transplant or any kind of open heart surgery, you have a sternotomy, and you can't really lift anything for the first eight weeks. There's all these different things that you can and can't do. I was really determined to go back to my life. I think the hardest thing for me, which I'll go into this a little bit later too, but I tell patients, anytime you have this critical illness, if you have some sort of ICU stay, it's going to be hard for you to go back to who you were right before all of that happened to you. That's okay. You can maybe get to 90%, even 99%, but it's going to be a completely new world for you, and that's okay. That's kind of what life is. You have to be okay with these things that happen to you, and it's kind of up to you to figure out what you want to do with the rest of your life. I think up until then, I was like, all right, I am going to do everything that I was doing. I'm going to do it even better. Then at one point, I was like, you know what? Maybe I can't, and that's okay. I did my best to get back to who I was, but obviously, I'm a completely changed person with a new heart now. Just to bring it back to ICU, since this is SCCM, I did have some issues with not only my ICU stay, but of course, the whole transplant itself. I was very weak. I mean, I was the ICU patient that was walking around the unit two or three times a day, pre-transplant and post-transplant, with all the drips hanging and everything, but even with that, that was nothing compared to what I had been doing up until my stay. So, I had a lot of weakness, muscle aches. I remember, I didn't even understand. I got discharged, I think, on a Wednesday, and by the Friday, I was back in the ER with... I'm an ER doctor, so this is one of my least favorite chief complaints, was this full body pain. I couldn't explain it. I was like, I am just hurting everywhere, and I can't explain this. My muscles were very weak. I had a lot of insomnia. I mean, until this day, I have insomnia, but I remember it was really difficult for me to... Just the trauma that I had been through as an ICU patient, constantly being checked on at nights, constantly being... And that's fine. I was very sick, but these things do stay with you. I started having this thing when I was hospitalized, was like, well, if I fall asleep, then I might die in my sleep, so I'd rather just stay awake until morning, and so I think that still travels with me until this day. The pain, of course, as I talked about, from the muscle weakness was a big, big issue, and then later on, I actually ended up developing ADN in my hips, so I had to get both hips replaced about a year after, during my ICU fellowship, which is a whole other story on its own, because of the stairways that I had gotten, not only as... You know, with transplant, you take a bunch the first six to nine months, but also, I had gotten stress dose, and I got these high-dose steroids when I had my rejection episode. This isn't to say that we shouldn't do what we do. This is just to point out that there are some consequences of the things that we do to our patients. With post-transplant highlights, I love talking about this. I completed my emergency medicine residency. I only had a few months left, so I went back and I finished that, and then, of course, I graduated from a two-year fellowship in critical care at the Mount Sinai Hospital. That's actually a picture of me on my last day of fellowship in the cardiac ICU, so in the CT ICU, not the one that I was in as a patient, but I was there taking care of heart transplant patients, so it meant a lot to me at that time, and, you know, I'll say some jokes here and there. One of the first things I did... I don't know if anybody from Mount Sinai is here, but one of the first things I did when I was extubated, you know, right when all this is going on, was I emailed my program director, future program director, and I said something like, hey, I was emergently intubated, and now I'm extubated, and I have this, like, cardiogenic shock thing going on. I want to make sure I could still do fellowship if I make it to June. Like, that was my main... and, like, the thinking that I had was, well, I got to know now because I have to open up a new ERAS application if they don't say that they can take me, and these are the kinds of things that, you know, were going through my head, which says a lot. I ended up meeting the family who helped save my life. This is Laura and Mark Reff. There's a lot that goes into how an organ donor family meets a recipient, but, long story short, I ended up meeting them, and it's been great. They're, like, my second family, and it was one of the best things that happened to me because I feel like because of what happened to their daughter, who I'll get to, her legacy was able to, you know, continue as somebody who was in the healthcare field. She was actually an RT student. She had always wanted to work in an ICU. Super crazy, I know, but she had wanted to work in healthcare to help save people, and I try to make it a point to remind people and her parents that, you know, she did. She saved four people through organ donation, me, two kidney recipients, a liver transplant recipient, but even more than that, she saved everybody's lives who we've touched as recipients, not only the actual people that I take care of as a doctor today, but even my own family and all these other people that are very well connected to me and the other recipients, so it meant a lot. She ended up, and her mom is very okay with me saying all this, and she wants me to say it, but she did have a ventricular cyst rupture, and totally out of nowhere, she had been studying for her exams, and she had a headache, went to the ER, and basically brain dead within 12 hours, so her family was already involved with organ donation and transplantation. I think, if I'm not mistaken, they had a family friend or someone who had been a transplant recipient, so, and, you know, she had been wanting to be an organ donor, and so, you know, they immediately transferred her to the Southern Hospital, and she became an organ donor, and then, you know, saved my life, so it was pretty amazing. Clinical pearls is stuff that I get asked about often, as an ICU doctor who happens to be an ICU survivor and transplant recipient. These are things that I've learned as a recipient that I think has been important for my practice. I'll get to the first two first, and then I'll go to the first one. I should have put that in this different order, so communication is key in healthcare settings. I think, as ICU doctors, and again, I'm trained in emergency medicine, both ER and ICU, we're kind of there to coordinate a lot of care, but sometimes patients don't totally know what we do. I specifically remember my family who, you know, they're immigrants. Mom doesn't really speak English. Dad speaks a little bit. They're not doctors. They just, like, didn't understand why the ICU doctor would come in and tell me that everything was fine, and then the, you know, the heart failure cardiologist would come in and say, oh, no, you still need a heart transplant, and they thought that they were like, well, the ICU doctor is much more positive, and I was like, well, the point of the ICU doctor is to make sure that I stay alive and stable, and, you know, the point of the cardiologist is to figure out what exactly is going on and when I should get a transplant, if any, you know. There's different things that we all do in healthcare, and I think it's important to explain this to patients. All it takes is a simple explanation. I am so-and-so. I'm in charge of so-and-so. You know, we're going to work with the team to figure out this and this. Things are dynamic in the ICU, which is very important to constantly tell our patients, as we know, but it was so important for them. They just, like, didn't understand why the ICU doctor wasn't talking about my transplant and, like, kept saying I was fine and, you know, and it's not anybody's fault. I just think it's the way the system does it, and we just need to be better about communicating that with our patients. Of course, empathy helps. I'm not here to tell you guys that, you know, go through a cardiac arrest. You'll be a much better doctor. I don't wish this upon anybody, not even my worst enemy, if I have any, but I do think that something that happened to me, I use my voice to talk about it often for a reason, and I think it's okay to ask me, hey, how did that feel? Hey, you know, what is, what did it feel like getting a central line for the eighth time when you have a clot there? You know, things like that, that just putting yourself in the patient's shoes and utilizing the resources that you have, even if it's people like me, to understand what your patients are going through is very important. The last thing I'll talk about, or there's a couple more, but this is the last one on this page. The power of your voice is very important. When you talk about your story, you empower others to do the same. When I first got my transplant, I mean, I'm 35 now. I was 30 at the time. Like, I'm a millennial. Of course, I'm going to put everything on social media, right? Like, there wasn't, when I got my transplant, the first thing I thought of was like, I got to go tell Instagram, but I didn't do it on purpose. It's just kind of the way that it is in my culture, and it turned out to be great because when I was very open about it, of course, there were some people who messaged me saying like, are you sure you want to say that? You're a doctor. I'm like, oh, so doctors, like, can't have health issues? Like, that's not true. So, I think for me speaking up, and even more so when I realized that not many doctors speak up about these things, I found my own community. Docs with Disabilities Campaign, not my campaign, but is an initiative done by Stanford and University of Michigan, and they talk a lot about, you know, physicians with disabilities and all the different things that they advocate for, and I'm a big fan of them. Now, I was getting messages. I mean, until this day, I get messages and emails from people who message me and say, I don't remember if it was a nurse or a doctor, but she said something like, you know, I had chemo all throughout the last couple years, and I never told anybody that I had cancer in the hospital, and that's not okay. We shouldn't stigmatize just because we're in healthcare if we have health issues and disabilities, and so I made it a point to constantly talk about it. We actually created a group. I call it the Docs with Transplants group. So, initially, it was just me and a couple of other physicians who have solid organ transplants, and now after five years, we're at almost 70 people in that group, and that's people from all over the world, and it's so nice to have that, and again, I'm not saying they need to be open about it. Not everybody is comfortable being open, but I want them to know that there is this safe place that they can go to where we can talk about things. Another thing that I had done, a lot of women with transplants, especially around my age, you know, generally speaking, after a heart transplant, they do recommend not getting pregnant, and so it is a very common reason that I saw that women would say that they'd rather not get a heart transplant because they want to get pregnant or, you know, they had all these different issues. So it was nice to be in a group with other women with transplants. I called it the zipper club because of our sternotomy. And it was just nice to have that place to talk to each other. So it was amazing being able to connect with others and it was especially important for my professional colleagues to do the same. Appropriate support matters. This is a major thing for our patients. I know in the ICU it's probably not as, it's probably getting there just because we do a lot of ICU survivorship stuff. But it meant so much to me to have a group filled with people with heart transplants who were similar to me. I think the hospital that I was at initially gave me like a support group. And I mean, again, I'm not discriminating against anyone, but like I went to this group and it was all just like old men with heart transplants. Like what am I, the main thing I was like, what am I supposed to say? Like, are you guys on Tinder? Right. Like I had nothing to tell these people. I had nothing in common with them. And, you know, I wanted to go back to work, like I had all these different like things that I wanted to do. And it doesn't mean that that group shouldn't exist. It just wasn't for me. And so it's important to talk to your patients that there are different groups out there. Not every experience is one size fits all. And we constantly say that. The paper that I have up there, I just wanted nothing more than to get in a real shower, patient experience of the inpatient wait for a heart transplant. Kobe Salerno, who is my colleague, he's a cardiologist with a heart transplant. We have a podcast together. He wrote this and it came out earlier this year. And it's all about patient experiences in the ICU while they're waiting for organs, particularly hearts. He's also a heart transplant recipient. And, you know, it was just the little things that mattered. Having someone to talk to. He actually came up, one of the conclusions that he came up with in that paper was it would be really nice to have patients talk to other patients when they're hospitalized for things like this, if possible. It doesn't mean that has to be like the person next door. But if there's an ambassador that could come to the hospital to talk to the ICU patients who are going through similar things, it kind of does help. When I was an ICU fellow, I made it a point at least once a week I would go and, you know, talk to either the pediatric patients, generally the younger patients who are waiting for transplants. And I honestly felt like that was so much more powerful than what I did as a physician, which is so interesting when I say it out loud. I even remember one patient telling me that that was more lifesaving than any intervention that I did. I was just telling him like, you know what, like I'm your age, I have a transplant and I'm okay. It doesn't mean it's easy. I'm just saying that my life is okay after everything I went through. And I'm here if you want to ever vent about something. It was really, really powerful to hear that from multiple patients that, you know, it was really nice to have you say that. And the silver lining, a word on advocacy for the future. So when I was first hospitalized, got my transplant, I was post-op day seven, which should still be the blog post that's up. I started a blog called A Change of Heart. At that time, I was like, oh my God, I probably got like an amazing heart that's giving me all this energy. I think it was just the steroids, like giving me like a lot of like, I was manic. Like I was like typing things on like post-op day three. So I started a blog. And again, it started initially just as a way for me to share my story instead of constantly telling everybody that I was okay, like texting them. I was like, I'm just going to post everything on my blog. And then I was like, you know, I could just use this website. Maybe I paid like 10 bucks a month to like have that domain name or something. I'm just going to use this website to talk about organ donation, talk about transplantation, talk about women with heart failure, talk about young people with critical illness. And then I was like, hmm, maybe I can also put in some resources, I could do fundraisers on this. So it started off as me just telling my story and it blew up into a million other things. And I remember one of the nurses, the ICU nurses coming in to like help out with something. And I said, I want to do something in my life. She was like, you're literally an ER doctor. Like, you know, it's not like you're already doing something pretty important. I was like, no, no, no. I just feel like, you know, everything that's happened to me, there has to be something good that comes out of it. And I'm not a cheesy person. I'm not like super positive, like I'm not one of those people, but I do think it's important to have others understand that it was kind of a way for me to justify what I went through, right? Like I'm able to advocate for these things. I have this platform as a physician and it makes me almost feel like it's okay that I went through what I went through because I'm doing something with it. And that was a lot for someone like me who really looks for fulfillment in my life. So I started a blog. I, again, didn't think it would get big, got somewhat big. It's not, it's no Amazon, but it's big-ish. I also started this podcast with Colby Salerno, who I talked about earlier. He, at the time of my heart transplant, he was already five years out of having a heart transplant. He's my age. He was an internal medicine residency at the time. And he messaged me on Twitter and he was like, hey, I see you have a heart transplant. I'm also a resident with a heart transplant. I was like, oh my God, like I really needed to meet you. So we're like, he's like my brother now, we're like best friends. But he and I always had this idea of why don't we start a podcast called something, we'll talk about different things pertaining to organ donation, transplantation, medicine, healthcare, anything. Honestly, we're just like amateur podcasters. It's probably not even good. We just like doing it. But we started this because of the connection that we made earlier and we both feel like it's been important. I mean, I think in the last two years that it's been out, we've already had 10,000 downloads, which is pretty insane for two people with mics who don't like, it's really nothing crazy, but it's fun and it's a way for us to tell our stories and bring other people in to tell their stories. It's just been this thing that I've been able to do with what happened to me. I also wrote this, I think this was also the steroids making me like really manic and having too much energy. But I remember like month two when I was really bored because I wasn't able to go back to work for a few months because I was hyper immunosuppressed. I was like, I know, I was like, anytime a cardiac transplant patient comes into the ER as an ER resident, the best thing about having a transplant patient as a patient is you know the dispo is just to admit. Like there's nothing else that you have to do. Just press the admit button and they can get admitted. But because like we just didn't have enough education in emergency medicine about what to do with heart transplant patients. So I talked to Alex Coifman, Britt Long, and we decided to write this paper together, Primer for Managing Cardiac Transplant Patients in the ED Setting. So I mean, until this day, my like friends in ER will send me this like, oh my God, I had a transplant patient today and I referred. So I thought it was pretty cool. I'm not trying to be one of those like attendings who puts their own papers up. Like this is just to show the cool things that I did because of, you know, something really adverse that happened to me. We ended up getting this published in American Journal of Emergency Medicine, I think a couple years ago, 2021. But it was something that I'd worked on as I was recovering. So it was very cool. And that's all I have for you guys. Do you guys have any questions for me at all? Hi, Don Chalfin. And we've briefly met before. First of all, wonderful lecture and I'm so glad you told the story and obviously it resonates with me. I'm a liver transplant survivor, a liver transplant. And I think your messages that you conveyed are so eloquent. And you know, I'd like to say for me at least, my transplant was five and a half years ago that for someone who was so unlucky, I feel incredibly fortunate not only to get the organ, but I think one thing we need to realize is that certainly as a physician having a transplant, I think there's a lot of disparities in the transplant world and getting a transplant, the transplant system is so Byzantine and it's very stressful on the patients. I also want, I just want to make a point, I think to emphasize, I think what you did, I think one thing I learned, it's very important to focus on the patients when they're in the hospital in general. And I remember when I had my transplant, I asked a question to the doc, to my surgeon, and he was terrific. And he immediately just subconsciously turned to my wife, my family and said, he's fine. He's this and answer them and didn't make eye contact. And I reminded them that I'm in the room. And I think we really have to remember that for someone who is sick and ill, just really focus on them and make them the focus too. I also think that what you communicated is that, remember for the patients, the little things are the big things. If we say, we often excuse ourselves that, you know, oh, it's just nausea. When you're dealing with nausea or just fatigue, it is huge. And I think we tend to forget that. I also, one thing I've learned and I've started doing some speaking and writing about this are the implicit biases that we have. And I'm talking about our cognitive biases. And I think that affects patients as well. My disease was NASH and NAFLD, and I ignored the obvious. And I think, you know, I'm thinking as a provider that certain assumptions we make about patients that aren't necessarily true. So I think in societal, from medical care, these are things. And I love your point where you said about just trying to make some lemonade out of the lemons that we all had. We didn't want to go through it, but I think it's an opportunity. But again, thanks so much for sharing. It certainly resonates with me. And I think it's wonderful what you're doing. Thank you so much. I totally agree. It is the little things that matter for our patients. Having been there many times at this point, I think, again, the interactions that I've had with my own patients about these things, anytime it's a younger patient or someone with a new heart transplant, I try to talk to them. I also try to make it a point, Dawn, you said this, to family and caregivers that are at the bedside, it is so important for us to acknowledge and address them as well. All the stuff I went through, I don't remember much, right? I don't remember a lot of it. I was intubated, sedated. I'm sure some of it is just me psychologically trying to forget a lot of it. But my parents remember everything. They remember every single poke, every time it was difficult for them to get an IV. They remember all the times I was in pain. I mean, they have more trauma from this than I do, honestly. I honestly think that. So I make it a point, anytime there's family members in the room, I talk to them. And I thank them for being there. And that's really, really important. And it's something that I learned because of all the stuff that I went through myself. Thank you so much for this talk. My name is Mehrnaz Hadi, and I am an intensivist in Los Angeles. Also I'm a healthcare attorney advocating for doctors and patients. This was so brave of you to talk about your ordeal and try to make an impact as a result of it. I personally always thought about, I'm going to make a comment and then a question, that everybody that goes under, like get buried after our death, is an opportunity to save lives. And we are not really doing enough to advocate for organ donation. So every single one of us should be an organ donor. I'm just going to ask the audience who's under their driver's license an organ donor. Great. And my question for you is, what are you doing using your platform to inform the public and advocate for that? Sure. That's a great question. I'm actually one of the medical directors of California's organ procurement organization where we help with donor management at any of our hospitals in the DSA, the donor service area. So aside from my job, I do a lot of advocacy work through AST, American Society of Transplantation, on organ donation. I have an Instagram where I'm constantly putting up the myths that I hear. People are like, I've heard that if I'm an organ donor, they'll kill me. And I'm like, that is really my job. And we do not do that ever. Even if I said this the other day, some people say something like, oh, if a physician knows that I'm an organ donor, they're going to kill me for my organs. And I was like, even if there was a rogue physician somewhere who knew that, I don't even know where they would find that information. So it is big to bust myths and constantly talk about my story to help with organ donation and do what we can. And each organ donor can save up to eight lives. And there are 17 people per day who die needing a transplant. So it's a big issue right now for all of us. Thank you for your talk. It was fantastic. My name is Karen Korczak. I'm a critical care, adult critical care provider. And I have had the opportunity to be both a patient as a cancer survivor in the institution at which I train people. And my husband has been a patient there as well. And I want to ask both of you, if you wouldn't mind sharing, were you ever, did you ever feel you were cast into being placed in the role of medical decision maker for your own health care? And if so, how did you deal with that? How do we, especially if we're in parts of the country where our tertiary care facility is the place where you go because your severity of illness is that high, how do we as physicians negotiate the VIP syndrome? How do we, how can we help mitigate, I think, the intrinsic anal sphincter tone that goes sky high when the patient is a colleague? And how do we help physician, patients, or nurse, you know, anybody on the health care team navigate that transition to be caregiver, but also remind the care providing teams that when we're vulnerable and sick like that, we're the patient, and especially if it's not our area of expertise, you should be treating me, advising me the same way you would any other patient. You shouldn't be asking me to make a decision that you wouldn't ask another patient to make about care plan. That's a great question. It does happen to me. I mean, you know, I get hospitalized sometimes still, even post-transplant and, you know, going back to when everything first happened. And I remember sometimes they would tell me things, they'd be like, oh, you know, do you want to know? Like I was an ER resident, right? Like I was not an intensivist yet. And I didn't know much about advanced heart failure. And I remember one time they were like, do you want to know your afterload and like all your numbers, your SVR? I was like, no, I don't, not really, I don't really care. So I make it a point to tell them, I don't, I'm one of those types of patients who'd rather just have the physician and the nurses kind of figure out what's going on. And then if anything, give me options, like we can do this or this, but I'm not someone who likes to take control of their decisions. But I do tell them that because sometimes it does happen where they'll come in and they'll be like, do you want Zosyn? And I'm like, whatever you were going to give the other patient, just give me. So I'm open about that. With that being said, I know I've taken care of enough doctors to know some of them do want to be a little bit more involved and want to have some more decision-making capacity in their own care. And I think that's fine. I'm just open about what I want and what I'm comfortable with. Or I'll say something like, I don't know the answer to that. I'm an ICU doctor. I don't really deal with this and this that often. So that's how I go around it. But I don't know if that's common for everybody who is in the same position. Thank you for sharing your story. Amy Zurb, I'm a pharmacist in New York Presbyterian Hospital. And it resonated with me that you had pointed out that communication, the lack thereof, was very important to you. But I'm wondering if you could just summarize your top three things that we as a multi-professional team, whether it's pharmacists, respiratory therapists, physicians, bedside nurses, APPs, what could we have done differently to make you more comfortable during your ICU stay? Top three things. I think in regards to communication, I think introducing yourself to the patient and their family and, again, just to point out what you're there for is really important. And I wish that was done more often. Not so much for me, because I can kind of read their badges, but for my parents who were at the bedside who had no idea who anybody was. So that was a big one. The other thing is any time you're starting somebody on medications, you know, medications are great. And I'm a big advocate. I take plenty every day. But they do come with side effects. And I think those things are not talked about often enough. I understand that being a transplant recipient, I have to be grateful for, you know, all the things that have been given to me. But that doesn't mean I can't be frustrated sometimes. And I think constantly telling someone, you're lucky you're alive. You're lucky. You're lucky that you get to take medications. I get it. I am lucky. But, you know, you can feel two things at once. And sometimes I'm frustrated. And that's okay. So that being communicated with me more would have been also nice. It doesn't mean that it was never. But it was something that I feel like wasn't really pointed out, like all the things that were going to happen to me, like my hips breaking early on. And I think another thing, you know, we as physicians, especially as ICU doctors, because I feel like if someone isn't in organ failure, they're fine, right? Like they can have like a tiny little symptom. And I'm like, you're not in like multi-organ failure. But I do think it's important to just, like Dawn said, like nausea is actually a big deal when you're on these medications with transplant. And I'll be open and honest. The first couple months were lots of GI side effects. I mean, like vomiting, diarrhea, anything, I mean, they were so difficult on my stomach. I even had to get a couple of colonoscopies because of it. So I think not necessarily saying like, it's fine. It's just nausea. Like, no, you don't know how much that's actually affecting me in my daily life. And so I think it's important to empathize well and communicate that with your patients. It was something that was, you know, not always done, but was sometimes done. It meant a lot for me. I specifically remember I had like a rash. It was, I hate complaining about something as little as a rash. But I went to my dermatologist's office because you get a lot of skin reactions because of the Prograf that you're on. And it was like on my face and I just hated it. And I'm not someone who cares a lot about vanity, but like, you know, I'm young and I want to wear makeup. And, you know, and I remember I just started crying in the dermatologist's office and I was like, I'm so annoying for like thinking that this rash is a big deal because I have transplant patients that I'm taking care of in the ICU right now who are like dying of septic shock. And here I am complaining about them. And she was like, no, don't see it like that. Like it's okay. You know, it's, it's still something that's affecting you. And you know, she's like, you can tell me that's okay. And it meant a lot that my dermatologist said something as simple as like, it's okay. Like, you know, this is a big deal and it's a big deal for you. It doesn't mean that you have to be okay with it necessarily. So those are probably the top three things that helped me out with everything that I went through. And I think that we can do a better job of. Thank you. Thank you, Dr. Gregosian for that fantastic talk. We can continue the conversation. We have seating outside. If you have more questions, Dr. Gregosian will be available outside and we can sit down and chat some more. Thank you all.

Dr. Aline Gregosian

heart transplant

organ donation

chronic illness awareness

patient-centered care

healthcare advocacy

ICU survivor

medical storytelling