An interview with an emergency medicine resident who shares her experience after undergoing a heart transplant
Today I had the opportunity to interview Alin (pronounced uh-leen). Up until a few months ago she was your typical emergency medicine resident in her final year of residency and had been accepted to a critical care fellowship in New York. Then she was diagnosed with viral myocarditis with a suspected underlying inherited dilated cardiomyopathy and has since undergone a successful heart transplant all before the age of 31, a birthday she recently celebrated. Since her heart transplant she has become an active advocate for organ transplantation.
Before we begin I want to express my humble admiration for you. You were intubated in the medical intensive care unit, underwent multiple heart catheterizations, were on life sustaining pressors, and ultimately underwent a successful heart transplant. You started to share details about your journey on Instagram and ultimately a blog and throughout this process you’ve maintained a powerfully positive mindset. You are inspirational Alin. How did you stay so positive throughout all of this?
I’ve always been a pretty positive person. In my opinion, there was no other way to handle this whole situation. My mindset was EVERYTHING. It was the only thing I was able to control during my hospitalization. Of course, there were worse days than others. But this was normal, and this was part of the process. There were a lot of good things that came out of this as well—because we found out that this was due to a genetic dilated cardiomyopathy, a lot of my family members are now getting checked out for abnormalities. In addition, I knew that I’d be able to do something with my experiences—become a better patient advocate, and use my unique “from-doctor-to-patient” perspectives to increase awareness on heart failure, cardiomyopathy, and the importance of organ donation. All of these things kept me going.
How did this all start? How did you go from a relatively healthy young woman to almost dying in such a short amount of time?
I had a “cold” for about a month (cough, runny nose, fatigue), but started getting short of breath during mid-December. This is what scared me, because I had no history of any asthma or heart issues in the past. I found myself taking breaks from walking around the city, and I even became short of breath while I was talking at one point. I knew I needed to get checked out. I was hospitalized for a viral pneumonia, but we soon found out that this was all acute heart failure from a genetic cause (likely exacerbated by a pneumonia or myocarditis, as per the official documentation).
Do you have any family history of heart disease?
My dad has dilated cardiomyopathy. He is and always has been very healthy otherwise (exercises daily, has never consumed alcohol/caffeine, has never been a tobacco user). It was incidentally found during a primary care visit when he was 44 years old. His cardiologists had always attributed it to a viral myocarditis, because he didn’t know his family history too well. When I was hospitalized, we found out that his father died of sudden cardiac death in his early 40s, but no autopsy was ever done. The puzzle pieces came together.
So this dilated cardiomyopathy must have been brewing under the surface for a while, no?
I had an ejection fraction of 5-10%, with severely damaged, thin walls. The care team estimated that this was all chronic in nature—at least 6 months to 1 year. I just had no symptoms because I was healthy otherwise. In Emergency Medicine, we always say to look out for the “young patient with one very abnormal vital sign” because they’re the ones who are probably going to crash quickest. That was me.
Did your doctors discover a specific virus that they believe caused this?
No. My viral panels were essentially negative, but there are a few tests still pending (some take months to result).
So you get admitted to the hospital. That night you went downhill fast and suddenly you are intubated and in the medical intensive care unit (MICU). What did it feel like to be intubated?
I apparently I called out for my own intubation like a good ER doctor would! I don’t remember much. I just remember feeling really sweaty one second. A “Rapid Response” was called because I was crashing. And then I woke up 24 hours later with a tube in my mouth. The tube itself was very uncomfortable, and I think I was trying to self-extubate at some point. I will tell you—it felt terrible to be intubated, but it felt GREAT to be extubated.
I saw some pictures you posted that had some scrawled messages on post-it notes from when you were intubated attempting to communicate. In my experience communicating with someone who is intubated is one of the most frustrating and heart breaking experiences in the MICU (and I’m not the one intubated). After the experience of being intubated what did you learn that will change what you do in the hospital with intubated patients?
I was restrained and trying to suction myself. I was so frustrated because I had so many questions but I couldn’t talk and kept gagging on my secretions. I remembered this scene in “Extremis” (a great, short documentary on Intensive Care Units available on Netflix) where the doctor was trying to communicate with an intubated patient via paper/pen. I tried to do the same. I will forever keep these with me for my intubated patients.
I saw that you were allowed to leave the house for the first time and have yourself a nice fifteen-minute stroll with your camera. What did it feel like to have the energy to do that?
I’ve been working a lot with my wonderful physical therapist, who comes over a few times per week. She is worried that I’m going to “do too much,” so she is very good with setting time limits for me and cautiously walking with me everywhere. I do get lightheaded when I exert myself too much, and I always have to have my pulse oximeter on while I walk or exercise during these few months. BUT …. it was SO NICE to be outside! Even if it was just for a few minutes.
What is something you learned about heart transplantation that you otherwise wouldn’t have known if it weren’t for this experience?
The Heart Transplant Allocation System—the whole system changed just a few months ago. It’s all a very confusing process, but it is supposed to work out well for our patients. You can check out their site here: https://optn.transplant.hrsa.gov/learn/professional-education/adult-heart-allocation/.
What did it feel like to undergo heart transplant surgery? Is your chest still tender?
The sternotomy pain is one-of-a-kind. I am still on “sternal precautions” because it takes about 1-3 months for everything to fully heal, according to my surgeon. I take pain medications, do daily stretches and light work-outs, and collaborate with my home physical therapist a few times per week to help with the discomfort. All is slowly improving!
How many pills do you take everyday?
36 pills per day, as of right now. Ha! It will slowly decrease to just a few pills per day.
What happened to your old heart?
I gave it to the hospital (an academic center) for research purposes. I believe in the importance of medical research and wouldn’t want to do anything else with it.
Do you still plan on pursuing a critical care fellowship?
Absolutely. I want to use my experiences to better the care of my own critically ill patients, both in the ER during resuscitations and in the ICU for continued, meticulous management.
How has this changed you as a person and as a doctor?
My whole experience has changed me in several ways. I have always been a big proponent of “living life to the fullest,” but this has just confirmed how important this is (albeit cheesy, I know). I want to use my experience to become a better person, a better doctor, and eventually use it all to help advocate for organ donation and improving heart health.
Who or what helped you get through all of this?
The real MVP? My support system. There wasn’t a day I was alone in the hospital. Friends, family, co-residents, attendings were there so often that the nurses had to put a limit on my visitors. They helped me get through so much, whether it was by making me laugh, coloring with me, watching TV shows with me. However, with that being said, I think it was also important for me to be alone to process the situation well. I did a lot of writing and met with therapists weekly for my own sanity.
Anything else you care to share?
For all the residents interested in critical care: chest tubes are definitely the most painful procedure ever. Arterial lines don’t hurt as much as I thought they would.
