A Change of Heart-Interview with Dr Alin Gragossian

Transcript

0:00

Historically, our demographic, African American population is the demographic that requires or a candidate to say more so for organ donations historically. So that's the highest number. So that's commonly liver transplants, most commonly kidney transplants as a lot of our population unfortunately https: otter. ai Historically, on top of that, too, there's been a lot of legislation that's been passed in other states, talking about how folks register and how folks are able to come off those lists to get those organ donations, specifically kidney donations as well. In the past, there's been some disparities in terms of the demographics, that needs it actually getting those organs, but we made a lot of progress in recent years to make sure the folks that need it get it the same rate that everyone else is every other ethnicity, walk of life, socioeconomic demographic, thank you, Dr. Ford. That was amazing information. And shout out to the doctor. Yes. Yes. Yes. Yes. We got it. Look. Black people we gotta stop. Yes, not wanting to do this. Yeah, I think thank you for bringing a different perspective because like I said There's so many different myths. Yes floating around especially in our community And I loved how he actually added to the candidates on those lists exactly Yeah, it's us. Yeah, that's something to think about. All right, y'all. Get your driver's license out. I hear they just put a sticker on there now when you go through. They just put a sticker on there. Put it in your wheel.

Chris: 1:34

Welcome to pulse check, Wisconsin.

2:15

Good morning, good evening, good afternoon. This is Dr. Ford, Pulse Check, Wisconsin. And I wanted to thank you for joining us here again. We have a really good episode here for you. As you heard in that intro, we are going to be covering the topic of transplantation medicine and transplants in general. I got a couple of fan questions and fan requests to do an episode on this topic. And I wanted to start out the episode with a recent radio interview that I did with one on 1. 7, the truth here in Wisconsin about the topic of transplant medicine and what demographics transplantations affect and who, what Most commonly sees transplants and that will be us in the minority community So I wanted to bring on someone who I wanted to interview for a while Dr. Alin Gragossian who is a critical care and ER doctor out west and I wanted to share her story because it's an amazing journey and I wanted to Share with you all some of her insights into not only transplantation medicine But also just being a patient and to share some of the things that she has experienced and some of her insights along the way So that being said we'll go ahead and get started

Chris: 3:48

All right. Well, again, thank you so much for being with us here today. I'm very excited to get into what we're going to discuss I am a big fan of yours Ben. You know, we've been connected on LinkedIn for a while now, but I finally have the opportunity to speak with you. And I gave you an intro right beforehand, but for our listeners, could you please just give them an update of who you are and what you currently do?

Alin: 4:09

Sure. My name is Dr. Alin Gragossian I am currently, I, I trained in emergency medicine and critical care medicine. I now do, I, I'm an intensivist through a tele ICU company. I guess that's one thing that I do, I do a few things, and I'm also the medical director of Northern California's Organ Procurement Organization. I'm one of three directors there. As far as the, the, you know, clinical management of organ donors. And then on top of that, what I'm probably most known for is the fact that I had to get a heart transplant during my residency training, and so because of that, I do a lot of work with advocacy, patient advocacy and, and organ donation and transplantation in general.

Chris: 4:53

Yeah, and I think, you know, kind of the latter part is, is where I came to know you, you know, just through your story, I believe, like a friend of a friend shared one of your posts over on LinkedIn and just kind of went through everything, you know, I, I can probably echo the thoughts of a lot of other folks, I, I barely made it out of residency with the hours and everything else, right, but I couldn't imagine adding in becoming a transplant patient on top of that and just all the things that you, that you went through and, you know, how you you. Gotten to the place where you are right now is more so of a testimony of, you know, who you are and kind of your perseverance through that, through that process.

Alin: 5:25

Yeah, thank you so much. I know. People tell me that. They're like, oh my god, like, it's so inspiring. And I was like, it's funny because we, we go through medicine, like, like, I think med school was very difficult, right? College, med school, residency, those were like very difficult years. You put so much time and effort into it, I mean, research, like, on top of the actual stuff that goes into just medicine, and you have research, extracurriculars, like, doctors are probably the most, like, resilient people that I know, in general, when it comes to, like, facing so many different academic and career adversities, having to do this, moving across the country, like, you know, not every career has to do a match process, So I feel like it's funny that I've been through all that, but like, what I'm most known for is something that I had absolutely no control over. Like, I mean, literally, I came close to death, and, and, I, you know, did it fairly okay. And, and, you know, it wasn't anything that I had prepared for, like a test. It wasn't anything that I, that I, that I thought would happen to me. But, I always say that it's just interesting that that is what you're inspiring for after all these, not that I'm, not that I want to take away from it, but it's just my two cents.

Chris: 6:35

Yeah, absolutely. You never know kind of, you know, what, what your pathway is going to be in order to share your gifts and share your experiences with other folks. And to be honest with you, that, that, that's another portion of why I wanted to bring you in. And I'm so fortunate that you are able to, to, to make this work. We're able to kind of jockey our calendars together to make it work because I think it's so valuable for our listeners. At the beginning of this episode, one of the things that I shared was a radio interview that I did recently, and they were talking about the idea of transplantation and, you know, what demographics are most affected by it, and some folks Are really apprehensive about it. You know, there there are a lot of conspiracy theories behind it yada yada yada And so I thought you know, not only to break that understanding and that misconception of it I thought you sharing your story about how you first found out that you needed a heart transplant and Just kind of walk us through you know your journey in that respect.

Alin: 7:25

Sure. Basically I always I like to tell this story by reminding people of, like, think of a time where, like, everything was going well in your life. For me, it happened to be The fall of 2018, I was 30 years old at the time, probably had been to a doctor a few times, but never had any medical issues. I was in residency. I was applying, because as you know, for emergency medicine, for most specialties in general, you apply to fellowship the end of your second year, and then through your beginning of your third year is when you're kind of interviewing, and you usually know where you've matched for fellowship. By like November or December, depending on which match you're going into. Not every residency, but in general, that's how it works. And so I had just finished my second year. I was applying to, to do a critical care fellowship, which is always what I really wanted to do. Even as an intern, I remember I wanted to do emergency medicine followed by critical care. I had all these amazing interviews. I was on the interview trail. There's pictures of me, like. You know, at all these different places, like UPMC, Geisinger, Mount Sinai, New York City, all these places that I really wanted to go that had such big importance to me as someone who was going into this field, especially because at that time, emergency medicine was fairly newer to critical care medicine. It's a, it was a difficult process, but I, I got through the interviews and then I had actually just met, like, I really wanted to live in New York City my whole life. So. My the best part is like, I remember when they sent me an email, because at that time, I don't know if they were going through the match, or like, you're like trying to figure out exactly, like, what, Where you want to end up. With the process. Absolutely. With the process, exactly. And so I, I found out that basically they had accepted me at, at Mount Sinai in New York City, which had been my number one program. And so it was academically doing well, socially doing well, getting ready to move to New York City, which is where I've always wanted to live since I was like five years old. And nothing had been weird in my life. Like I think, I think I was at the peak of being 30 years old and, but the only thing that I remember is right around Like, I want to say Halloween because I remember things based on, like, events. Like, around Halloween, I was kind of sick. Like, cold. Like, I had I was congested. Had a cough. It wasn't going away. And it was nothing that's weird to us in residency. I mean, all of us usually work through shifts when we're sick. And,

Chris: 9:50

you know,

Alin: 9:51

you get through it. Exactly. And I remember specifically, it had been a bad flu season. And one of my co residents had the flu. One of them had, like, pneumonia. And So it was something that a few people had had, and so I just assumed that I had something. And it was not anything that was keeping me from living my life. Like, I was still going out with friends, I was still working my shifts, I just, like, was not feeling that well. Like, a little more tired than usual, which I feel like that's all of us, right? Like we're just a little bit more tired than usual going through residency.

Chris: 10:21

Exactly.

Alin: 10:22

So I had, I want to say like that happened in October, December, October, November, I matched into this program. Still kind of had this weird lingering like cough that wasn't going away. And then fast forward to about four or five, six weeks into having these like, you know, generalized symptoms. Um, this one particular night, I was in the ICU, because in the ER, as ER residents, we would cover ICU as well, like we had our ICU month rotation. And so I was a senior resident in the ICU and we did 24 hour shifts and I remember that particular day was a Wednesday and I went into my shift and something was like off. My attending, who was an emergency medicine critical care doctor who was one of the first people who noticed, she was like, something is wrong. Like you keep like stopping in between sentences to take a breath. Like when I was trying to present patients to her, I was like. Short of breath.

Chris: 11:17

Wow. And

Alin: 11:18

she was the, she was somebody who was like, you should definitely get a chest x ray or something. Like I've never seen you like this. And I remember thinking like, okay, of course in medicine, I'm like, well, let me just at least finish my shift and then I'll see what I can do about it tomorrow. So that was like a Wednesday, the following day when I got off shift. Oh, I should also point out the one big red flag that particular night. Was that usually we would respond to codes in the hospital and I would take the stairs because it was like my way of getting exercise in during these 24 hour shifts and like I just couldn't like I remember I had to take the elevator for just like one floor up and I was like, that's kind of weird, whatever. I mean, even if it maybe it's a pneumonia, right? Like, like, I didn't think it would be anything crazy. So the following day I got off shift and when I tell people like I felt a hundred times worse Which is interesting because in emergency medicine, we're told like young people usually like they compensate so well to the last minute so I think that's what happened to me like I Felt fine fine fine fine fine, and then suddenly the following day like I couldn't even walk a few yards without stopping, which was super weird. So I went back to the emerg so after I had done my shift, I actually went back to the emergency room because something was definitely off. And my colleagues who had just seen me throughout the week were like, pale, I had like, blue lips, I was tachycardic. Nobody knew exactly what was wrong, but, but I, like, True emergency medicine fashion, but one of my attendings was like, like, I know you have to be admitted. Like, like something is off.

Chris: 12:49

We know the disposition. We don't know what's wrong yet. Exactly. As soon as he saw me,

Alin: 12:53

yeah, he knew. And, and this is when people ask me like, okay, but like, why didn't they do an echo? I don't know. Like, in the, in the moment in emergency medicine, we order a bunch of tests. We could get the work up going, but like, He, he knew I had to be admitted. I, I got up to the floor and they had done a chest x ray and the basic stuff, and I think some of the stuff was still pending, and the chest x ray showed bilateral infiltrates, which in someone who's otherwise athletic, young, healthy 30 year old, you're thinking atypical pneumonia. Like, you're not immediately thinking something, I mean, not that that's not serious, but Things could be worse than an atypical pneumonia.

Chris: 13:32

Exactly.

Alin: 13:33

So I got admitted, um, you know, I was getting antibiotics and I remember they were even like, we're not really sure if it's that, but we'll get a full workup going, but that night I got a hundred times worse and they had to call like a rapid response at one point. I remember, I remember they gave me magnesium and I remember thinking like this might've been because of the magnesium, but it obviously wasn't. I, I felt really sick, nauseous, and I started sweating a lot, and I looked up at my monitor and my heart rate, which had been in like the 120s, 130s, was suddenly down to like 30, 20, like I almost felt my own heart rate. P. E. A. arrest happening in the Impending. It was, it was insane, and we can laugh about it now, but at that time it was scary and I was dating an orthopedic surgeon, and the running joke, again, we can laugh about it now, and I'm still friends with him, but We, he said something like, like, I looked so sick that even an orthopedic surgeon knew that something had been wrong.

Chris: 14:31

God bless our orthopedic uh, brethren. Like,

Alin: 14:34

I remember he, you know, he, he was just like worried. And so that night, they ended up intubating me taking me to the ICU. I was on support, and, uh, Over the next couple days, they did all these tests, and by the time I woke up, they told me my ejection fraction was 5%, which is the lowest I had personally ever seen, and And they were like, yeah, you have, like, really bad heart failure. Now, the cause of Remember when you're in the hospital with these acute issues, like people are like, Oh, why didn't they figure out that? Okay. It takes a while to figure out the cause. Later on, we found out it was a genetic issue caused by like a desmoplacan gene mutation that I just never knew I had. And so the running theory was that I probably had like a virus that like Turn the sea precipitated. Mm-Hmm. Exactly. Exactly. Yep. And so then I got, I was so sick that they eventually transferred me to Penn. Um, and I remember at that time they were like, you need some advanced heart failure therapies. And even being an ER resident, I didn't even know what that meant. Like, I was like, wait, so lasik, like, what is advanced heart failure? By the time I got to Penn, my cardiac index wasn't improving. Everything was just getting worse. And so they listed me for an urgent heart transplant and less than two weeks later, received my heart transplant and then discharged after that. So like all my, from my diagnosis to basically death, to, to everything just happened in less than a month. And then I got discharged like all in less than one month. So I went from like normal 30 year old without any medical problems to like, here you go, here's your transplant. Have fun. And that, that was almost, well, as of this, so my, my sixth year will be January, so about six years ago. This all happened to me, and like, this is the part of the story where I'm like, well, that's what happened, and now I'm here, so, there's a lot of stuff that happened in between, but, but, yeah, that's basically how I ended up requiring, like, needing a heart transplant, I, I, I had biventricular failure, and so it was nothing that Could have been fixed with like an impella or a balloon pump, or so it just needed a heart transplant, got it. And here we are now.

Chris: 16:39

And that's it. And, and, you know, I feel that your story in general kind of highlights some of the things that we. We talk about with patients, especially how much of a niche, you know transplantation surgery is. And even as someone, you know, at the highest level of education in the field, right? Like these are things that even go over our heads. So we expect the public and our patients to just understand it and grasp it. You know, there's a lot that is still yet to be ascertained by someone who is a medical professional yourself.

Alin: 17:11

Absolutely, and that's what I, even, because now that I'm part of like a patient advocacy committee, like, not, well, a committee, yes, but also in general, the community of patients that I deal with and, and do a lot of social media collaborations with and things like that, like, they're always like, I wish, like, the ER knew more about LVADs or about heart transplant, but I'm like, you got to understand, like, in the three years that I did residency, and we were at a place that had transplants, like, I saw one heart transplant,

Chris: 17:36

like, it's

Alin: 17:37

not that, it's not that I don't think people should be more aware, but it's such a tiny, tiny part of medicine. That, it, and I don't want to say like, like, you know, people could just like not care about, it's not what I'm saying either, but in general, yes, like, like, it's, there's so much that goes into it that when you're in, when you're in it, you don't realize how, how small of a field it really is.

Chris: 18:01

Exactly. Exactly. Being both a patient and a physician, that creates its own unique strains, right? And so, what were some of your most challenging aspects of being both a patient and a doctor? Did you have to kind of remove yourself from the treatment team aspect? How was that along in your journey?

Alin: 18:18

It was interesting. I think people say, so, in general, and I've been hospitalized enough times to know this, I think they anticipate me being, like, very, like, type A, and But in reality, I'm like, I actually don't want to know a lot of things. Like, in fact, what's really funny is when I get my ECHOs, I get ECHOs like every few months for surveillance. I like, don't, I don't look at it. Like, they're like, it's so interesting. Cause most patients want to know what is that? Why is that like that way? That so, so I don't know if that's just my personality. I don't know if other doctors would be the same. So I think they anticipated me being a little bit more like wanting to know everything and wanting to make my own decisions, which, you know, I It's so funny because I'm, I'm not. And so in the beginning, I remember they'd come in every day giving my, my CBC and I'd be like, I don't, like, it's fine. Like if, unless there's a big change, you don't need to tell me what my like white count is this morning. And, and, and then I think the other part of it was just what you said. Like I think even the, you gotta, you gotta remember that like places like Penn or even the, the transplant center that I'm at right now, like there are literally cardiologists for every ventricle at this point. Exactly. That's how

Chris: 19:26

hyper

Alin: 19:26

focused

Chris: 19:27

it is now.

Alin: 19:29

Like, like there was a pre heart transplant doctor, there is a, like, so, so, for them to think that I knew, like, half of what they were talking about, like, maybe now I know a little bit more because I did a critical care training and focused on cardiac, but even with that training, there's so much I don't know. And so a lot of times they'd ask me questions like, hey, like, you know, I'll never forget that. They came in and they're like, you're, you're SVR today is like, What did they say, like it's 6, 000 and I remember in my head I was like, like

Chris: 19:59

it's like,

Alin: 20:01

isn't that good?

Chris: 20:03

Well, yeah, with that, well, it sounds good. It's better than five, I guess. I think

Alin: 20:08

I remember they were like, you know, they'd give me these numbers and like these like, and they're like, And I understood the basics, well, nitro to reduce your afterload, like things like that. But overall, like these tiny little things, like, I'd be like, Oh, sounds good. I guess we want it to be lower. Yeah, lower. Okay. Okay. That's right. Exactly. So, so I think they, they thought that I'd probably be, Okay. I don't want to say smarter, but I feel like they, they definitely, when you're a doctor, people assume that, you know, everything and even doctors assume that even though you're a third year ER resident, you know, but that's not the case, so it was, it was weird in some ways, but I think once you get, they get to know you, they see like what your personality is like, I hate making decisions for myself, so I'd be like, whatever you guys think would be best. It's fine.

Chris: 20:57

Yeah. And, you know, just the process in itself too, you know, how did that work for you in terms of finding out that you had a donor heart available, how long did that process take for you, because I feel like a lot of folks don't understand how much that goes into it besides the actual surgery itself. You know, there, there's aftercare, there's precare, there's all these things that go into it. And, you know, you were kind of on the end of the spectrum of needing an emerging cardiac transplantation, but for like, you know, renal transplantation, liver transplantation, there's a whole host of considerations just to harken back to, you know, there, there are a lot of considerations that even go over our heads as medical professionals.

Alin: 21:34

Absolutely. In fact, one thing that I tell people is my case and having now having worked in a cardiac ICU and doing all those things, my case was actually really rare. Like most people have chronic issues for years. Kidney patients are on dialysis for years and needing an emergent transplant basically happens in liver and heart. Like it's still pretty rare. So, so there's, so for me, it was very different than what it is for. I don't, I don't know the exact percent, but for, for the majority of people, there's a whole listing process. You have to go see multiple specialists. You got to get. You know, CAT scans, MRIs, you have to get titers done, you got to get certain vaccines. They go through a committee. For me, it was more of an emergent process. And so I can give you what it was like for me. But just with the caveat being that for most people, it is not like this. So for me, you know, they told me that one of the only things that I, that could really help me at that point was a heart transplant. We found out later on that it was genetic and my dad had actually had heart failure Basically since he was my age We just like never connected it because it all makes sense now and I wrote an article about this But his dad died of sudden cardiac arrest at age 40, which is a big red flag But he didn't he wasn't close with his dad. So he like he didn't really Investigate that then my dad was diagnosed He didn't know his family history and so they basically put him on medication. They said maybe it's a myocarditis that he had had and he, for him, he was just on meds. He still is on meds. He gets echoes every year. It's still, it's a little bit better than what it used to be. But it's never been, like, cardiogenic shock, at least not yet. And then for me, I mean, now it makes sense that it was like a genetic issue, but mine was basically so bad that I presented as cardiogenic shock. And so the, there are multiple things that could happen when you have something. That happens to you similar to what happened to me, one of them being like an LVAD. You can get some sort of implant to impella for a few weeks. But for me, it had been, you can only get a transplant. So when they told me, I remember that they came in with like the paper, like the coordinators came in and like, well, we're so sorry. You know, there's really nothing that can happen, that we can do other than we have to list you and like, there are meetings, there are meetings for every one, like Monday or Wednesday. So yeah, they have to present your case and because mine was emergent, it was kind of like. Okay, well, this is what we have on her, overall healthy, if you think about it, like, I was overall healthy, no other organ systems were affected, young, so I had been technically, like, a good candidate to begin with, and so, when they told me that One of the only things that we could do is transplant. They were like, starting to go over all the paperwork. They were like, okay, well this is what's going to happen. You're going to need to take meds. And like, you know, it took like a good 30 minute conversation that they went through, went over everything. And then they're like, any questions? And I was like, nope, let's do it. And they were like, you were one of the first patients. They were like, you were one of the first people that we've ever seen who had like, No question, like you, and they're like, it was such an ER doctor of like way of doing things because the only thing you said was like, let's get it so I can go home. Like you're only thinking like, well, it's what I got to do. Exactly. Exactly. People are always like, well, how did you make that decision when, when it's between that and death?

Chris: 24:59

And that, and that's the thing too, for, for our listeners, for context, as Aline said, her ejection fraction or kind of that squeeze of the heart was about 5 percent or less. Right. Right. When we start talking about an injection fraction of 20 percent is when we start to put in those implantable devices that will shock the heart in the event that it goes into these rhythms that can be dangerous or even threaten your heart to go into VTAC or even asystole or something. And so at the point that she was at, you know, like she said, it was either that or nothing, right?

Alin: 25:26

Yeah, exactly. And so, without a question, for me, it was, well, I'll figure out the rest later. Like, let me just say yes to getting listed. And so once you get listed, I think, you know, there were some things that they had to do, like they had to get, you know, a full, like, body scan to make sure there was no infections or cancers, and they had to, I mean, there were some things that I did after the fact, so for example, you need to get your Pneumovax vaccine and things like that which I hadn't gotten because I was only 30, and so some of the things we waited till afterwards, but they knew that I had, you know, all my other vaccines I think they, they do like a psychosocial assessment, and one of the things that's really important for for getting listed is making sure that you have support not only financially, but also just, like, people, and, and my parents, I, I, I'm originally from Los Angeles, so I lived alone in Philadelphia, which is where all this happened, and so they had to make sure that, like, my parents, my mom, ended up living with me for about six months, My brother and my dad would come too, so just to make sure that I had someone there in case I needed anything. And so there were these considerations like that, which doesn't necessarily mean you can't get a transplant if you don't have those, but they have to make sure that there's some sort of assistance available for you, whether it's financially or through support. So once they checked off all the boxes, I got listed. They have to go through a committee that basically, like, talks about you and whether or not you'd be somebody who'd be, Adherent with medications, like if you have a history of non adhering, which I understand if you're not going to take your meds, like something that people like a hundred, over a hundred thousand people need organs every single day. So like they want to make sure it's given to the people who are going to most likely take the medications for. So they do all these things and they go through these like risk assessments and then eventually they said, you know, for me, again, they went through the committee and then they came back and they were like, all right, you're listed. Those two weeks were the hardest two weeks of my life because I remember, I, There were certain things happening. So whenever you get a, you're listed for a transplant, they try not to give you transfusions because of antibodies. Luckily, like, up until then in my life, like, I had never required a transfusion. I had no antibodies. I'd never been pregnant. So all these things were going in my favor, favor, but my hemoglobin had been under seven. And so, like, We were really teeter tottering on, and, cause heart failure could do that, we were teeter tottering on like, okay, we can't transfuse her, but we gotta make sure, you know, there were little things that every day I was like, well, I might die today, I might die today.

Chris: 27:55

Oh, jeez.

Alin: 27:56

I know, and what's, what's interesting is like, there were nights where I wouldn't go to sleep because I was afraid that I wouldn't wake up the next day. And like, even like, I get chill, like, I remember thinking that, I remember writing, because I would write everything down, and I remember thinking, like, I don't, like, if I, if I don't sleep, then I, I can't die. Like, that, that's how, which is, which is not true, but that's just the way it is. But still, it's the

Chris: 28:23

psychology of it, absolutely. It's,

Alin: 28:25

exactly, and so, like, you know, those two weeks were very difficult, but I remember, You know, there were a few things in my favor, such as, no antibody production I happen to be, you know, smaller, which is, usually people who are bigger, taller, it's a little bit difficult to find them organs, because you definitely need a bigger organ, for, for people, who are bigger, so there were like little things that were going in my favor, and every day I'd be like, well, hopefully, tomorrow, hopefully tomorrow, and then You know, one day I'll never forget. I don't know if you want, if you want to ask me any questions before I go to the day that I actually got, okay,

Chris: 29:01

definitely go, definitely go.

Alin: 29:03

Cause that's actually a very interesting story. So my parent, I had tons of people, this was the year before COVID. And so like. I mean, when I say there were always residents, like, my parents, I had my friends fly in from all over the country to visit me, like, my room in the ICU always had 5, 10, 15 people, which was great, but, this, at, at some point, like, it was just, I just wanted to be alone sometimes, and I remember, like, the nurses were awesome because, like, we had a code word of, like, me saying something like, I think I need my dressings changed, and so they'd be like, Okay, well everybody has to leave the room, and So it got a little overwhelming, but that particular night, My mom had been visiting me from L. A., She came every day, she would actually sleep overnight, And That day my cousin was visiting me and I was like, dude, I was like, you got to take my mom somewhere. Like she's been here every, like she would come at 6am, stay till night, and then would stay with me at night. I would say five, six times a week. So like, just was with me the whole time. And so I told, I told him and he was like, well, like me, does she want to go to a casino, like of all places? My.

Chris: 30:12

It take you mad off of it. It.

Alin: 30:14

It's exactly, and so, you know, my cousin was like, I'll take her to the casino, and, you know, my parents, like, my parents, like, love playing on those, like, slot machines, so, I had been alone, and the nurse came in, and was like, hey, looks like you have a phone call, got the phone call, and it was the coordinator saying, like, hey, there's a heart condition. It's been found, like, all I need is for you, like, you know, OR time would be 2am we think it's a good fit for you it's, blah blah blah blah blah, and then, you know, we just need a yes or no. You have about an hour, I think, I forget the exact timing. Wow. To, to say yes or no. And like, I was so, I got so anxious and nauseous, And I almost feel like I, like, regressed, like, I was like I'm not sure, let me talk to my mommy.

Chris: 30:58

Right, exactly. It's a big decision, that's fair.

Alin: 31:02

So like, I remember I was like, you know, it was just, I didn't know what to do and so she was like, eventually like I called my mom, and of course she wasn't picking up her phone because like she was in a casino, the reception wasn't good, and finally she was like, she was like, are you jo I was like, mom, like they found a heart, like, the OR's gonna be in six hours. She's like, are you joking? No, I'm not. Everybody rushed back, it was amazing, and so You know, they had to, there's all these things, like, you know, the anesthesia has to come, come in, do all this, do all that, and at the time, like, I don't think I realized, because I had been intubated already for that resuscitation, and so I was extubated, and then I had to get re intubated, and I remember thinking, like, now that I've been an ICU doctor, I didn't even understand how risky this, like, to, to intubate somebody with an ejection fraction of 5%, Like two times in two weeks and like, I remember I was like, well, like, let's do it. Like I had, when people asked me if I was nervous, I'm like, I don't know, like I was obviously nervous, but I don't think I understood the gravity of the situation, which was actually kind of nice. Like, it was nice to not. Think like a doctor in

Chris: 32:14

those moments. Exactly. Not being in the driver's seat, not having, you know, the, the, the clinical intuition about where to go next because you have to give yourself that time to be the patient, right?

Alin: 32:22

Exactly.

Chris: 32:25

Yeah. How do you think, kind of going along those lines, how did your, as an ICU provider now and as a ER doctor now, how did your experience as a transplant patient, how does that now affect your approach to patient care?

Alin: 32:38

That's a really good question. So, I get this, I get asked this all the time. I think that, and by the way, I'm going to caveat with, I don't think every doctor needs to go through a cardiac arrest to be a good doctor. Like, I absolutely hate when people are like, oh my god, I want you to be my doctor, because you know what it's like, because there are plenty of good doctors who have never had any health issues who I would trust my life with. I think that in general there are a few, like, I say, I call them like pearls that I never learned in medical school, but like, Little things really do matter, like communication with our patients. So I'm Armenian and so my parents speak Armenian. They don't, my mom, especially like doesn't speak that much English. And so I was the, Interpreter for my family and of course they could have gotten like an official interpreter, but I don't, you know, we tried our best and so I remember like they're not in medicine. They're like immigrants, right? Like they're not in medicine. They don't really speak the language. They definitely don't speak medical English. And so a lot of times like they were confused as to what was going on. And if it wasn't for me, I happen to be a doctor. I don't know what they would understand or what they wouldn't. So communication is always like a major thing for me to make sure that, you know, patients, caregivers really understand what's going on. Even little things like when the ICU doctor would come in in the mornings for rounds, like I remember I specifically one time he's like, she's doing well, like she's doing great. Like all good. Next, next patient. Okay. Okay. In the ICU, doctor's eyes. I didn't die last night. My, my vitals are stable. Yeah, exactly. Like I'm, I'm on two pressers. But, but like, an ICU doctor's goal is to make sure overall, like, everything is stable. Whereas, like, the cardiologist would come in and say like, Okay, well, you know, her ejection fraction's like, still 5%, like, we need to get over, get through this surgery, blah, blah, blah. And my dad, It was like, why is the cardiologist so negative? Like the ICU doctor is not negative. And

Chris: 34:32

why is that left ventricle cardiologist so negative, man? The right one is great. Exactly.

Alin: 34:39

Exactly. So it's so interesting because it was never something I. Thought of as like, I was like, Oh, because they don't realize that like all these doctors have way different goals, but that's something that's so intuitive for us, like in the ER and ICU, especially because we're working with specialists all the time. So I make it a point to also tell doctors and providers that. Make sure your patient knows who you are and what your goal is. Cause I don't think they know if it's a neurologist or like an ICU doctor coming into that room half the time. So things like that making sure that you, you stay like empathetic and understand that sometimes I remember like the, the residents would be right outside my room. Again, it's fine if it's me because I understand what's going on. But like, Even little things, like sometimes, like, nurses, residents, doctors, I, and this has happened in hospitalizations even ever since then, but, like, they'll say things out loud that I could hear, like, Oh, yeah, I feel so bad for her, you know? And, like, Heh, like, hearing that, like, I remember one of the, a tech came in once and was, like, checking my heart on an echo, and she was like, This is so bad, and I was like, I don't know, sometimes you should be careful with, like, you should be, it's, I'm a doctor so it's okay that you're, like, I understand the re, but like, just, you know, to say something, like, imagine telling a patient, like, oh, I would never be able to live with this heart, like, what is, what kind of thing is that to hear? So, just be mindful of what you're saying to, to people, and, and, by the way, like, I feel like because I was a doctor before I was a patient, This whole experience has, if anything, made me empathize even more with doctors, right? Like, like, sometimes patients will be like, my doctor is like, why is the ER doctor only spending five minutes with me? Like, why is it? And sometimes I'm like, dude, do you, how many people they're seeing in one hour? And like, it's almost made me realize, and like, sometimes doctors will, will, like, if I go to clinic, they'll, they'll come in like 15 minutes late. I'm so sorry. Oh my God, I'm so sorry. I'm like, dude, don't say sorry. Like, it just goes to show how much even. Clinicians are, like, on edge nowadays because they're so afraid of what their patients are going to say. So I see, I see it from both ends.

Chris: 36:55

Yeah, and that's that important context too, right, until you've been on both sides of the coin, it's hard to know, you know, as a physician and as a patient, you know, what the other side, what strains other sides of experiencing, and it's really important to kind of carry that through, and I think you said a couple of good things in there as well about You know, the way that we, we front face patients, right. Especially as providers, especially as ER providers, ICU providers, we are in very high stress situations all the time. And, you know, it's not atypical for us to be talking as, you know, colleagues and to blow off steam and say things, but like you said, the patients get over here and the patients, you know, definitely are going to be the ones who feel. A certain way, adversely about it, and especially when you're trying to do your best to stay, you know, mentally and physically, you know, in a best disposition, it's hard to, it's hard to hear those things, and they shouldn't hear those things, so it's really important to know.

Alin: 37:47

Absolutely, absolutely.

Chris: 37:49

One of the things that we talk about all the time too is about not only the procedural aspect, not only getting on those lists and coming off the list, but the aftercare of transplant, which I feel like a lot of folks don't understand as much that goes into that, changing of diets, changing of social activities, you know, medications that you have to take. Have there been any long lasting effects from the transplant that you still navigate today?

Alin: 38:13

Absolutely. I think the easiest part is actually the surgery itself. And what's interesting is a lot of people assume that like, oh my god, a heart transplant is such a big deal. What actually gave me most comfort is when the cardiothoracic resident came up to me because he said something like, honestly, like heart transplants are so easy because it's just like putting five vessels together. Like it's actually the one that like nobody wants to, I mean not nobody wants to scrub into, but it's like, Technically not a difficult surgery. There's like, you know, valve repairs and things like that could be technically much more difficult. And so that gave me comfort. I don't know if that gives anybody any other patient comfort, but knowing that like, it's really not like a surgery that is extremely, I mean, in my opinion, liver transplant surgery, it has its own difficulties and could probably be more difficult. I'm not a surgeon, so no surgeon should come after me for that. But, but, like, the surgery itself, in my opinion, is one of the easier parts, and so, afterwards, there's so much that goes into it, I actually failed to understand how much was gonna go into it, like, I remember, I was like, alright, well, good now, gotta take a couple meds a day and I'm fine, but no, like, in the beginning so, first of all, there's the, the, the The surveillance, especially, and right now I'm about six years out, so things are way different now than they used to be, but that first year, you are getting cathed all the time, like, that's one thing I didn't realize was like, weekly right heart caths, so imagine getting like a cortis every Monday for a few weeks and then on top of that, you, you get echoes, you, you have, I think I started with like 37, 27, something like that, meds a day and then they're constantly changing, right, because they get your TAF levels every week and they want to make sure that you're on a specific dose of tacrolimus. And so the surveillance is just insane. I mean, I remember, like, there were so many restrictions, again, early on the restrictions are a lot worse because you are hyper immunosuppressed. So things like, you know, when, be careful in public places, always wear a mask, like especially in crowded public places.

Chris: 40:16

Especially around the time that you had it, too, around the pandemic, too, so that's that added bonus, right?

Alin: 40:21

It was right before the pandemic, and so, for me, it was so interesting because Like those first few months I was wearing a mask and then like suddenly a pandemic hit and it was almost a blessing because like everybody else started masking too so it was actually kind of nice but yeah so so there's like precautions you have to take like that and then also the the biopsies, the cardiac care that you go to, again, I'm talking more first year than anything. And then there's all the other things too. Cancer surveillance, right? I had to get a I have to get scopes done to make sure there's no colon cancer. I have to do this. I have to do that. Making sure that skin checks at least once a year. So it's not just the cardiologist that I have to see, but it's a multidisciplinary care of seeing multiple specialists every year. Multiple times, usually, to make sure that everything is in place. One of the most, one of the more, actually, probably the most difficult thing, that was actually even more difficult than my heart transplant, when I was on the high dose steroids, I ended up having avascular necrosis of both my hip joints. And so, yeah, so I had, probably the hardest thing I went through was actually both hip, I got bilateral hip replacements when I was in fellowship. And it's just something that happens. I mean, you know, as well as I know that being on any kind of steroid puts you at risk for things like this. And and it was weird because like, I remember. I was in so much pain, like when, so when AVN patients come in now, I mean, when, when I tell you it was the worst pain in the world, I mean, I was depressed because of how much pain I was in, because not only, I was somebody who was very active, so not only could I, like, not move, but I remember because nobody could really figure out what was going on, and I, I put it on myself too, I could have gotten, like, checked out by multiple specialists, at first they thought maybe, like, I'm having hip pain because of statins, maybe, because of, so we tried different things, And we could never figure out the exact cause. And this went on for about two or three months. I was waking up at four in the morning to soak my legs. Like, I would just sit in a bath for an hour to like, prepare myself for how much walking I was about to do as an ICU, as an ICU fellow. I was wearing all sorts of braces. Like, I think I spent so much money on Amazon on like, all these like, gimmicks, like, I was like, what is it? And, you know, looking back, like, especially as a ER doctor, I'm like, what's the first thing you should do if somebody, I was having, Mostly knee pain, but it was like radiating to the hip. The first thing you think of is getting a hip x ray. Like if it's knee pain. Yeah, exactly. And so, like,

Chris: 42:58

But when it's you, right? It's you, it's a whole different situation.

Alin: 43:01

And so, like, two or three months went by and I got, I went to my PCP, my cardiologist. I even went to the ER because at one point my leg was so swollen that I had a DVT. And so, afterwards, my, my friend who had been one of the ER residents who was taking care of me, I was like, Dude, let's just get a hip x ray, too. And, like, he'll, if he ever hears this, he'll probably, like, I remember he was like, why? And I was like, I was like, cause I'm having knee pain, and it's radiating to my hip, and, What if it's ABN and I've been on pregnancy and he's like, yeah, but you know, we, we even thought about it, but he had his attending come in and we, we had like an actual discussion. I was like, let's just get it. And lo and behold, ABN, both hips this whole time.

Chris: 43:42

Wow.

Alin: 43:43

So I had to get, I got my left one hip replaced first because it's really hard to get both at the same time because you, you need your other leg to rehab.

Chris: 43:54

PT and, exactly. Nice.

Alin: 43:56

But, I mean, the other one was like a little bit, like I probably had a little bit more time for the right one and then of course because I had done such, so much PT, like immediately the right one collapsed like within a couple months and so I got them done fairly close to each other in time. And then, yeah, and I honestly tell people like, Like, that's why when people come into the ER with joint pain, but like not their high blood pressure, not their diabetes, I understand that joint pain is tangible pain that is unlike any other.

Chris: 44:29

And like you said, you're waking up in the middle of the night to prepare for the day before that. That's not even including the pain that you're already waking up with. That's just in preparation. And, you know, for our listeners, AVN, Avascular Necrosis pain is felt by a huge demographic of people, including our sickle cell population too, right? So a lot of times folks talk about patients that I speak to outside of the healthcare realm and community activities, things of that nature, talk about how they don't feel like they're hurt. And when they come to the emergency department with this type of pain, again, like you said, that adds that connotation, that adds that lived experience to, to bring to those patient interactions that Aline was talking about as well.

Alin: 45:10

Yeah, we had a large sickle cell population in Philadelphia and I remember, like, I'd be like, how much can it possibly hurt? How much can your hip possibly hurt? Do I regret ever, ever saying, like, I remember thinking specifically, I'm like, I am never ever gonna question any, again, and it's not that, like, you don't believe patients, but it's just like, I remember thinking, like, there's a lot more stuff going on here. Like, how much is this hip really bothering you?

Chris: 45:37

Right.

Alin: 45:37

But yeah, it was insane.

Chris: 45:40

Well, you know, I appreciate you so much sharing your story and your aftercare, and you talked a little bit at the very beginning of things that you're currently active in as well, organizations and even your own personal endeavors that you're undergoing right now. How do you currently advocate for transplant awareness and organ donation in your professional or your personal life at this point?

Alin: 45:59

Sure I I do patient advocacy work through AST, American Society of Transplantation. I was actually the chair of their transplant community council last year. It was, it was great. And so through that, we did a lot of public health awareness about transplantation in general, you know, transplant recipients, education about caregivers and how important they are to people, like, Like transplant patients, we did a lot of stuff for living donation, but on top of that, I feel like What's even more needed now is more awareness about organ donation in general. We have lots of people who are so against organ donation because they think that all these Terrible things are going to happen once you sign up to be an organ donor. And so, I do a lot of advocacy for, in general, organ donation too. I actually became very close with my organ donor's mom. And her whole family, and I found out that Lucy, who was my organ donor, had died of a sudden, she had a brain cyst rupture.

Chris: 46:56

It was

Alin: 46:56

just as sudden as something that happened to me, which is insane when you think about it. And for her mom, it, she found so much solace in knowing that her daughter went on to save four people's lives. Me, two kidney recipients, and a liver recipient. And it almost, you know, she's, her, her daughter's able to live on through the gift that she has. She was able to give in, in, in her passing. And so I do a lot of work again, I work for an OPO on the clinical end and we help with organ donor management, but I think even more than that advocacy regarding all these myths, like, for example, I heard that if I'm an organ donor, doctors are going to kill me for my organs, like, like, first of all, like. Like, I always tell people, even if there was a rogue doctor who was gonna do that, like, in the ICU, we don't even know who's an organ donor or who's not. Like, that comes after the fact. So so things like that do not, like, it's insane to me when people say things like that. Or even things like, I think another, another common myth is like, People don't realize how rare it is to actually die in a way that lets for organ donation. So, you're actually more likely to need a transplant than ever die in a way that makes it possible for your organs to be procured. And that study was done in 2011 in Canada, like, that is absolutely something that people don't understand. They think that immediately, if they're an organ donor, all their organs are going to be taken. It, it, it is such a long process to get from organ, potential organ donor to actual procurement to transplantation. And so there's so much that goes into it that people just don't realize. And there's all these myths and things like that, that I'm just like, it's so sad, especially to me because like I'm a recipient and I'm in the healthcare field and it's just, so I try to dispel those myths as often as possible, as much as possible regarding like, You know, not only signing up to be an organ donor, but also just making sure that people are aware that, you know, transplant patients exist and we are here and we're living our lives.

Chris: 48:58

Absolutely. Absolutely. What message, if any, would you like to share with our audience and share with others who, you know, may be in that same situation as you were and have a little bit more time than an hour to make that decision, but may be waiting on a transplant or thinking about it or even counseling a family member for transplantation. What would be your message to them?

Alin: 49:19

I think one thing that I like to tell others who are either, you know, waiting for transplants or in the process or potentially going to be listed is that it is a long process and you have to take it day by day. And, and another major thing to tell people and their caregivers is that every patient is different. Everybody's story is different. And so while some things may be true for some people, it's not true for everybody. And so comparing yourself to others. is not, doesn't usually help. With that being said, finding others in the community who are going through something similar definitely helps with supporting you. When I first got my transplant, there were so, and this goes not just for transplant, but in general, people who have chronic illnesses. I was getting so many messages from people, um, I started a blog and an Instagram for no other reason than I just, like, I'm a millennial and we write everything, so I didn't think, I didn't think it would get big or anything, but I got so many emails from people saying like, I'm going through something so similar, and like, it's so nice that you're putting it out there because I feel like it's not talked about enough, and so just to be able to voice yourself in a way to help, you know, connect you with others, It doesn't mean everybody has to do it, but it was something that really helped me. Healthcare workers, especially, like, notoriously, we never talk about our own health issues.

Chris: 50:42

I got

Alin: 50:42

emails from people saying things like, I don't remember, it was like a nurse or a resident who said something like, you know, I had, I went through cancer without telling any of my co residents. I, I went through, like, All this stuff. I've had a transplant for 25 years and not any of my colleagues know and like, it's so liberating to know that there's someone else in this world who's also a doctor who's gone through something crazy and is able to tell their story. Um, when I first got my transplant, I started, I started a few like little groups, group chats. Um, one of them had been women and in their, uh, young women with heart transplants. And it meant a lot to me because the, the support group that I. You know, had you got to remember, like most people with heart failure, like old white men, like what is like, it was not anybody I could relate with. So it was so nice to have like a group of women in their twenties and thirties. We were able to talk to each other and then I even created a group at that time. It was just five of us, five physicians with organ transplants. And now that group has almost 70 members from all across the world, like, attending resident doctors who have organ transplants, and it's just been so nice to be able to connect with each other. So don't necessarily compare yourself to others, but it's totally okay to use that community for support. And that's what helped me the most.

Chris: 51:59

Absolutely. And like you said, having someone there with you that has walked a similar path, and also to help soundboard, because like you said, we go through so much as medical professionals It's just a basal level, just a baseline. But to have someone that you can bounce those ideas off of, or even just talk to, it, it, it goes a long way, especially when our first reflex is just to hide within ourselves and to keep those things away from folks.

Alin: 52:23

Exactly. Exactly.

Chris: 52:25

So, Elaine, you know, how can our listeners follow you? How can they support anything, any endeavors that you're doing? Uh, cause I'm sure I'm gonna get many, many, many questions about that. So,

Alin: 52:34

I'll send you, um, specific links, but if, if anybody wants to check out my blog, which is Not as updated as it used to be, but there's lots of good resources on there. It's a change of h e dot a r t, so it's a change of heart. And then my Instagram is probably the best way you could reach me, and it's achangeofheartblog with underscores after each after each word. And I'll send you both of those and I think another thing that we do me and, there's a cardiologist who has a heart transplant, so we have a podcast called Both Sides of the Stethoscope that we update once every couple months, so there's always like other people with their transplant stories or chronic illness stories, or other doctors, and so those are probably the three easiest ways to get a hold of me.

Chris: 53:15

Awesome. Awesome. We'll definitely post that to the website and we'll definitely send that out as much as we can. But I want to thank you so much for taking the time. Again, so happy that we're able to finally link up and looking forward to speaking more.

Alin: 53:27

Thank you so much, Chris. It was great being here.

53:30

I want to thank Dr. Gragossian for coming out and speaking with us here today. I want to thank you all for listening. Feel free to click on any of the the information that I have listed on the website. From this episode, I'll have a link to Dr Gragossian website. Blog space, a change of heart as well as her Instagram page and her podcast as well, to learn more about the amazing things that she's doing, feel free to reach out there as always. I want to thank you all for joining us here today and join us next time. Again, this season, we have a lot of good surprises and a lot of pertinent medical information that's going to be coming up So you definitely don't want to miss that feel free to reach out to us either on instagram or x We have a page now up on blue sky as well So feel free to reach out to us there with any of your fan questions any of your show ideas again shows like this came from some of the fan responses So feel free to reach out and we'll continue to tailor it to what you want to hear So with that being said