Lessons From ‘Patient School’ That Medical School Doesn’t Teach - Dr. Alin Gragossian, Heart Transplant Recipient and Emergency Medicine Specialist

Michael Carrese: Hi everybody, I'm Michael Carrese and today on Raise the Line we're gonna get the fascinating perspective of someone who has both experienced a life-threatening medical emergency and who treats people with life-threatening medical emergencies. Dr. Alin Gragossian is dually trained in critical care medicine and emergency medicine. In 2019, she underwent urgent heart transplant surgery after being diagnosed with acutely decompensated heart failure secondary to dilated cardiomyopathy. Since then, she's been using her platform as a physician to talk to others, especially healthcare professionals, about her unique experiences as a young critically ill cardiac patient, while also hoping to raise awareness about the importance of organ donation. She's also a co-host of the “Both Sides of the Stethoscope” podcast with fellow heart transplant recipient and physician, Dr. Colby Salerno. Thanks so much for being with us today.

Dr. Alin Gragossian: Thanks for having me.

Michael Carrese: It's quite a story. But before we get to that, we want to find out a little bit more about your background and what first got you interested in medicine and particularly critical care emergency medicine?

Dr. Alin Gragossian: Sure. My parents told me that since I was a kid, I had always been really fascinated with medicine. I don't remember much of that. But I do remember when I was in high school, I started volunteering at an emergency department. I'm originally from Glendale, California here in LA, and I was just volunteering at a local emergency room just a couple hours a week, you know, wanting to go to a good college, and I ended up loving it. I actually ended up doing it first several years after that and in all honesty, I had loved emergency medicine from the beginning. 

I remember watching one of my now mentors do like a forehead laceration and I thought that was the most amazing thing ever. I was like, "Wow, what a life-saving thing you can do." So, that's what got me interested. I really liked it. Even in med school, I remember my own primary care doctor had told me to always have an open mind and not go into med school knowing what specialty I was gonna go into. But the thing is, I ended up liking everything. I actually like just a little bit of everything and at the end, still stuck to emergency medicine. Once I was actually in residency, I realized the part about emergency medicine that I liked the most was the resuscitation and the extremely critically ill patients, which was when I decided to go on and do a fellowship in critical care. So, I love training and it's been a great experience and, you know, I just got a different perspective of it once I became a patient.

Michael Carrese: So, let's talk about your heart situation. Were you aware of heart issues before this incident in 2019? Or did that come as a surprise?

Dr. Alin Gragossian: It was all kind of a surprise. This was my third year of emergency medicine residency. I had already applied and actually gotten into fellowship at that point, so I just had a few months of residency left. As many people know, you apply to fellowship towards the middle of your last year of residency training. So, that's kind of where I was at and I had been feeling fine. I just remember while I was on the interview trail for fellowship -- so this was October, November, December of 2018 -- I had this persistent what I thought was like an upper respiratory infection with some coughing and I didn't really think much of it. Like, it wasn't keeping me from doing my daily activities and it wasn't keeping me from traveling and going to work. But it was just like something that was lingering. It just got worse around Christmas time of December 2018 and I found myself back in the emergency department --- as a patient, not as a resident -- and that's when you know, everything kind of happened all at once. 

We were trying to figure out exactly what was wrong with me. Did some blood work, chest X-ray, all that stuff and by then, I had gotten admitted to get a further workup to see what was going on. I don't remember a lot of this, but I ended up having to get resuscitated, pretty acutely, and ended up in the ICU, intubated. By the time I woke up, maybe twenty-four or forty-eight hours later, after doing all these tests they found out that I had heart failure with an ejection fraction of 5%. So, my heart was barely beating and functioning properly. 

At that time, they were like, maybe it was a viral myocarditis. We were really unsure what had caused it, but eventually, we found out it was a familial dilated cardiomyopathy that had probably been triggered by some sort of external factor, like a virus, but there are so many factors that go into these things. So, it was all of a sudden, but they do think that maybe I had this predisposition that I just compensated very well for my whole life.

Michael Carrese: Yeah. So you wake up after that. You're in the ICU, and then you find out you need a new heart?

Dr. Alin Gragossian: That is almost literally what happens. They diagnosed me at the hospital where I had been doing my residency. Eventually, they transferred me to Penn, and Penn was very well known for their advanced heart failure therapies. I remember them saying something like, “We're gonna have to transfer you to another hospital with advanced heart failure therapies.” And I was like, "What does that even mean?" Like, I had been an ER doctor going into critical care, but I couldn't fathom it. I was like, "No, I probably just need a little bit of medication for a couple of weeks. It's probably just a thing that's gonna go away on its own. By the time I got to Penn, they were like, "No, you need a transplant." And so, I always tell people that from the time of my diagnosis up until the time I was transplanted and left the hospital was about three weeks. So, I went from a completely normal thirty-year-old to somebody with a heart transplant. It was crazy.

Michael Carrese: That's unbelievable.

Dr. Alin Gragossian: Yeah.

Michael Carrese: That's so fast. I think people know that there are long, long wait lists for kidneys. I guess they're shorter for hearts, eh?

Dr. Alin Gragossian: No, actually, It's pretty long. The thing that you have to take into consideration when somebody is on the organ transplant waiting list is how sick they are. So the sicker you are -- especially with just one type of organ failure, which is generally like the younger people who have been otherwise healthy their whole lives -- are going to be on the waiting list for less period of time. Blood type also matters, body size...it's a lot of things that go into it. Kidneys are a little bit different because you can be on dialysis for a long time as well, whereas, with hearts, it's a little more acute for some people. So, there are a few things that go into it. Generally speaking, not everybody is able to get a transplant within weeks, but depending on how sick you are, you are higher up on the list.

Michael Carrese: Just amazing to think how quickly you end up, you know, having this completely different life really.

Dr. Alin Gragossian: I know. Yeah, yeah.

Michael Carrese: So what was it like in the early stages, post-transplant?

Dr. Alin Gragossian: Early stages? There are a few things that have to go into the answer of this question. Number one was that everything happened very suddenly. I had been pretty healthy, athletic, eating well right before I got sick and I think that helps with the recovery process. So, my recovery was pretty good and, you know, knock on wood wasn't that bad. Of course, I had some issues. I think I had rejection early on, which is pretty common, early on post-transplant and there are medication side effects that you have to get used to. A lot of the medications that you're on are very strong, and mess up the lining of your stomach so you have GERD and nausea and all these different things. It was just a matter of me kind of learning that this was my new normal. 

I tell my own patients that -- and I would even before all this -- once you have something critical happen to you, you're probably never gonna go back to who you were before that. You can get pretty close, but my expectations were like, "Okay, I'm probably never going to be who I was in November of 2018, but I'm going to try to get as close to that as possible and if I can't, at least I know that I tried.”

There were some side effects of the medications that I had to kind of get used to and of course, the beginning of starting to take these meds is a lot more difficult than once you've been on them for a while. Then there's all these like little things. You go to the doctor all the time, get all these catheters and all that stuff. But overall, considering that the other thing that could have happened to me was the fact that I could have died, like, all of that was nothing compared to what could have been.

Michael Carrese: You get some perspective on life.

Dr. Alin Gragossian: Right, yeah.

Michael Carrese: So, you're several years out from the transplant at this point. Can you kind of recap how things have gone and what's your quality of life like right now?

Dr. Alin Gragossian: Yeah. Actually next week is gonna be my fourth “heart-iversary” is what we call it. It's been an incredible four years. I've had some ups and downs but overall, I don't think I can complain. One of the major things that I had to go through after my transplant was a lot of joint issues, which was common with the steroid I take, so I actually had to get my hips replaced. But the thing is, once you've had a heart replacement...

Michael Carrese: ...everything else is easy peasy, right?

Dr. Alin Gragossian: (laughs)The perspective that I had with these little issues and things like that was very interesting. Quality of life overall is better than expected. Like, there are a lot of people who assume that once you get a transplant, you're going to be debilitated and bed bound for the rest of your life and that's not true. I actually went back and finished my training. I actually even went on to do my critical care fellowship. I do have to take a lot of precautions, but again, it's something that I just had to learn how to get used to more than anything. 

It's been an interesting few years. I have learned how to prioritize things better. Whereas four years ago, five years ago I probably would have been like, "I want to work eighty hours a week, and I'm gonna do this, I'm gonna make this much money." Now, I'm kinda like, "Yeah, I just kind of want to enjoy life here and there and spend some time with my family." Priorities change to an extent. I still have very similar goals and take every day by the moment and do what I can with every day.

Michael Carrese: I want to tap into those perspective changes a bit. And the first category is what I mentioned at the top of the show, which is you're trying to communicate to your fellow healthcare professionals some of the lessons that you learned from the patient side of things, and how maybe they can change how they deal with critically ill patients, or any kind of patients. So, give us some of that hard-won wisdom.

Dr. Alin Gragossian: I think there are a lot of things that I learned from becoming a patient. I don't think it makes me a better doctor. People say, "Oh you’re probably such a good doctor because of what you went through." And I'm like, no, because I don't think that you have to go through a cardiac arrest or something crazy to actually be able to empathize with your patients. 

But I do think that it gives you this extra kind of sense of what's going on and I'm able to empathize with specific things. Specifically, like patients in the ICU or younger patients going through cardiogenic shock, patients who are going through transplant, there's a set of people that I probably empathize with more than others. But at the same time, I've had a lot of amazing lessons from what I call ‘patient school’ that medical school never really taught me. 

Even little things like what it's like dealing with insurance authorizations. One reason why I went into emergency medicine is because I hated dealing with insurance companies and billing and stuff. I kind of want to take care of what I can in front of me. Here I am now as a patient dealing with insurance companies all the time. So, it just gives me this extra perspective that many doctors also have, but not everybody has. And the fact that I share it also helps some people. I don't tell every patient, but there are some patients that I tell my story to and I think that just gives us a different kind of relationship.

Michael Carrese: Yeah, well, I can imagine particularly somebody with heart issues, that is young...it must be just amazing to see you there practicing as a physician and knowing that it could be okay, you know?

Dr. Alin Gragossian: Exactly, yeah.

Michael Carrese: What else do you think health professionals miss out on that you experienced on your way through this amazing journey?

Dr. Alin Gragossian: It's hard for me to pinpoint exactly. There are just some basic things, like I know exactly what It's like to get a catheter. I know exactly how important a blanket is when you're in the hospital...those little things. I'm very careful with ordering blood tests, because I became anemic from how much blood they were getting from me when I was in the hospital, and that was annoying. I've needed blood transfusions in the past.

So, there's like little things that I changed my management about, but overall, it's just this sense of knowing a few of these minute details that not everybody would know, even if they have been working in a hospital for a long time. But I'm very open about it. I tell my co-fellows and colleagues to ask me if they ever have any questions like, "What is it like getting a chest tube? What is it like getting a central line?  

Michael Carrese: From a really broad perspective, is there anything that you would change about medical education from a curriculum standpoint, that would help with this?

Dr. Alin Gragossian: One thing that would be something interesting to look into is having an actual patient come and talk to medical students once in a while about their experiences and how they're able to deal with things. It would give us a very different perspective that we're not used to. There's only so much that science can teach us, right? Like, I remember one thing that we always read about in the ICU literature is how quickly you should get people off sedation, even when they're on the ventilator. You have to get their breathing tube out as soon as possible and there's so much that the science tells us about how sedation is bad. But once you've been in the patient's shoes, and you've seen how uncomfortable that tube really is...I totally agree that tubes need to come out as soon as possible and you shouldn't be sedated for a long time but there's this new, like, humanizing side to medicine that I see that I feel like I can also educate others about. So, I think it would be nice to incorporate more patients into a medical school curriculum for sure.

Michael Carrese: Or Grand Rounds, maybe?

Dr. Alin Gragossian: Yeah, right. Right. And I do plenty of those and it's interesting, because I kind of feel a weird connection because my own doctors would be like, "Okay, you're a doctor too." And then other patients would be like, "Okay, but you're also a doctor-patient. So do you see things differently than me?" So, I do have a very specific perspective that I think maybe others could benefit from, and whether it's me or other patients doing Grand Rounds that would be a great way to educate others.

Michael Carrese: So, the other perspective you've gained from this is appreciating organ donation, I'm assuming. What is your message about that, and particularly, I'm interested in what you think, if anything, can increase the participation in the United States? As you know there are other countries where they have an opt-out system. It's assumed you're going to be an organ donor unless you indicate otherwise. Here, it's much different situation. And our donation rates, although they've increased quite a bit in the last ten years, are still behind other countries. So, what do you think would help?

Dr. Alin Gragossian: I think educating others, even with simple stories like mine. I talk about my organ donor a lot. I know her family very well. Her name was Lucy, and she unexpectedly died. She was only twenty-three and she was actually a Respiratory Therapy student. Her mom loves telling her story because Lucy's life goal was always to help save lives and she did. She was twenty-three when she died, but she was able to go on and save four of us. It was me, two kidney transplant recipients, and then one liver recipient. 

I've had people say, like, “I wasn't an organ donor until I heard your story.” And I think that in itself -- being very open about what organ donation can do, telling these humanizing stories, and being able to teach people -- makes a difference. There are a lot of myths around organ donation, so I feel like once you're able to bust those myths, then it also makes it easier. I think with time -- especially now with social media and a lot more people being open about their chronic illnesses and transplants -- hopefully, we get more organ donors to become registered.

Michael Carrese: Absolutely. I'm gonna put a plug in here for organ donation. It's very simple, quick. You can go to donatelife.org and find out how to do it. Something that some people don't realize is you can pick and choose what you want to donate.

Dr. Alin Gragossian: Right. Exactly.

Michael Carrese: Maybe you're not comfortable donating your eyes or so forth. But it's really simple, and then you're on a registry that providers nationally can tap into. And so when you get to the unfortunate situation, maybe, where you're in an emergency room in a trauma situation, you know, your wallet’s not necessarily going to be there with you and your family members...

Dr. Alin Gragossian:  ...and they might not know.

Michael Carrese: So, yeah, it's a great thing to do and very simple to do. So all right, PSA is over about that. So, tell me a little bit about your podcast. I'm sort of amazed that you have found another physician who's also a heart transplant recipient.

Dr. Alin Gragossian: There's actually twenty of us. Once I started opening up about my journey and telling people about everything that I was doing and everything that I had gone through, I want to say by now...I think there's like forty or fifty physicians that I've met with transplants. Not everybody's open about it, but there are plenty. Colby was one of the first. He was the one who had messaged me on Twitter way back maybe a couple months after my transplant and he was kind of like, "I'm an internal medicine resident in New England and I have a heart transplant." His story is a little bit different. He had heart issues when he was a kid and then ended up getting transplanted before med school so it kind of paved his career. He's now a cardiology fellow, and it really like inspired him to go to med school. Whereas for me it was similar but different in that I also have a genetic mutation, but it was all sudden after my training. 

So, we have very similar backgrounds, but different in that there are some things that he's gone through that I haven't and vice versa. So, he had messaged me and he said something like, "I'm an internal medicine resident and I have a heart transplant. If you ever have any questions, just let me know." I think one thing that we need to fix about this healthcare system is making sure that our own patients have good support groups, and with our generation, social media is just as good if not better than in person meetups most of the time. So, even having like a support group on social media -- whether it's Twitter, Facebook, Instagram, whatever it is -- it's just so nice to know that there's others out there that you can talk to. It's not just your doctor. And so Colby became that person for me. Years ago, he had said we should make this podcast and, you know, we were busy. We were both fellows. I was a critical care fellow and he's cardiology, and if there are two fellows that are like never at home.

Michael Carrese: Those scheduling problems must be pretty big!

Dr. Alin Gragossian: So, we started and now we're about to start our next season in a couple of months. We're just kind of brainstorming, but it's been really fun. We give different perspectives. We try not to give medical advice, of course, but just kind of things that we've been through as doctor-patients, and then like, our takes on vaccines and how important it is for transplant patients and things like that. So, it's been really, really nice.

Michael Carrese: Yeah, that's great. I’ll have to check it out. “Both Sides of the Stethoscope.” So, as you may know, Osmosis is a teaching company, and we love to fill knowledge gaps. Is there something particularly important to you, beyond what you've spoken about already, that you wish people knew that they don't? 

Dr. Alin Gragossian: I actually think that there's not a lot of training about organ donation when it comes to medical education. One takeaway point I give in any interview is to always remember that each organ donor can save eight lives and improve the lives of up to seventy-five others because it's not just the major organs that are procured. It's also tendons, corneas, tissues, things like that.

Michael Carrese: Skin.

Dr. Alin Gragossian: Yes, exactly. There's even doctors who don't know that, and when I tell them, they're like, "Wow, that's amazing." So that is one educational point that I like to tell people, for sure. So, I would say that.

Michael Carrese: That's a great idea. We always like to wrap up getting some advice from our guests for the learners in med school, nursing school, and so forth, and also the early career professionals who are in our listening audience about approaching a career in healthcare. What's your bottom-line advice?

Dr. Alin Gragossian: I think there are a lot of times in medicine where something might happen to you and you feel like you might be burning out or you feel like there's just too much going on and I think it's okay to remember that at the end of the day, what you do really matters. I say that with the intention of letting others know that what happened to me is kind of what I was hoping would happen to my own patients, right? Like, I was suddenly ill, but I got resuscitated and I got better and I have this good quality of life that I was able to go back to. 

So, anytime you feel like you're not really helping, just remember that there are patients that you truly are helping, even when you don't feel like that. I tell my own doctors all the time. I even remember going to the first cardiologist who did my catheter when I was acutely ill, and I told him something like," Hey, you know, thanks a lot." And he was like, "That really means a lot to me. We don't really get this and I don't usually see this." It really stuck with me until this day because we don't always feel appreciated and we don't always see how important it is to be in healthcare. So, that would be my point to others.

Michael Carrese: That is a great thing for folks to keep in mind, because there are a lot of long, tough days in this profession. Well, listen, we'll have to leave it there, but thank you so much for joining us and sharing your story, and I wish you the best as you move along here in your healthcare career.

Dr. Alin Gragossian: Thank you so much. Nice meeting you.

Michael Carrese: You too. I'm Michael Carrese. Thanks for checking out the show today everybody and remember to do your part to raise the line and strengthen the healthcare system. We're all in this together.