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First Person

A Perfect Life with a Stubborn Heart

Gragossian, Alin, DO, MPH

doi: 10.1097/01.EEM.0000559980.52102.1e
First Person

Being on your deathbed and living to tell your story makes you ruminate a lot about your very short life. You don't clearly remember the moment that you were about to die—it's all very blurry. But you do have the flashbacks, especially while you're sleeping. Sometimes, you wake up screaming, remembering the exact moment that you noticed that your heart rate was in the 30s. Other times, you wake up remembering who was holding your hand while you were in a delusional state on the ventilator. For the most part, though, you don't remember much.

I'm currently an emergency medicine resident in Philadelphia. Unfortunately or fortunately, depending on how you look at it, I will now know exactly what my own sick patients are going through. My sickest patients, actually.

I will know that asking them how they're feeling while they're slowly becoming bradycardic, right before they crash, has no value. Their mind is elsewhere. Their feelings are blurred. I shudder when I think the amount of times that I've shouted, “Sir! Can you hear me? How are you feeling?” while rubbing the sternum. They have no idea what is going on. Their body is focused only on dying. Their head is focused only on staying alive.

I will know the exact feeling, the strong, piercing feeling, of a chest tube going right into their lung's delicate, thin pleura. I can't tell you how many times I'd silently cried from the pain. But I can tell my patients. From here on, I will say, “This is going to hurt, and I apologize for that” instead of “This may hurt a bit, a little sting, no problem, please stay still.”

I will know how important their visitors are. Their visitors are more worried than my own sick patient is about his health. All six of them. They're all vital to my patient's course in the hospital, and they shouldn't be kicked out. I will not ask them to step out, to kindly limit the number of them there that day.

I will also know that those who fight are going to fight to live. They are the ones who will overcome this untimely disaster. And I will let them fight. They will fight with the ventilator, fight with the nurse about their medications, and fight with me about when they want their breathing tube out. I promise that I will let them fight.

How will I know all of this?

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‘Just a Code’

I had this cough, a terrible cough that just wasn't going away. For two months. Like a good doctor, I did nothing about it. Toward the end of last December, I began having shortness of breath at rest. I couldn't breathe. Anytime I tried to breathe, I coughed. Finally, I decided to get a chest x-ray. I walked over to our emergency department.

“Just a chest x-ray, no labs or anything. Definitely no lactate, no troponin. Let me get discharged, and you can call me with the results. I have work tomorrow,” I remember telling my attending.

Luckily, my attending did not let me leave. “You are sick, Alin. You look really sick,” he said uneasily, as though he could have predicted what was going to happen to me in a few hours. (We emergency physicians have a knack for that, right?) My heart rate was really high. I was very tachypneic. I couldn't speak a sentence without coughing or becoming dyspneic. I don't even know how I had managed to walk there.

My chest x-ray looked terrible. It was unclear what was going on, possibly a multifocal pneumonia, maybe some pleural effusions. I unwillingly let my attending admit me for further management.

Just a few hours later, while I was hospitalized on a medical floor, I began feeling uneasy. Nauseated. Cold. Sweaty. I looked up at my monitor and noticed that my heart rate was decreasing...50s...40s....

The beads of sweat weren't beads anymore. I felt like I had just come out of a cold shower without drying myself with a towel.

My boyfriend, an orthopedic surgeon, ran out of the room. “RAPID RESPONSE RIGHT NOW!” he yelled. The nurses rushed in. A rapid response was called. I looked up at my monitor. My heart rate was now in the 30s.

All sorts of people bolted into my room. There was ringing in my ears, and I couldn't understand anything that was being said around me. More people gathered in my room. Someone got out pacer pads. Someone else asked if this should just be turned into a code.

Just.

I clearly remember only those words. And that's the last thing I remember.

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An Urgent Transplant

Long story short, I was in cardiogenic shock. I had to be emergently intubated and put into a medically-induced coma.

I won't bore you with the specifics, although I am sure that you have many questions for me. It turned out that I had familial dilated cardiomyopathy that had gone undiagnosed for several years. My failing heart had tried to work for months, maybe years (I suspect that my heart had my stubborn personality too), but it had decided to give up on me that night (as it so gracefully should have—that poor thing). It was barely pumping—my ejection fraction was measured to be 5%, and had probably been that for weeks.

Yes, I was still working. Yes, I was still exercising. Yes, I was still going out and about with my friends. Yes, I was so happy with every aspect of my life—socially, academically, and career-wise. Ironically, I had just matched into a prestigious critical care medicine fellowship program and was getting ready to move out of Philadelphia to start a new chapter in my 30-year-old life. Life had been almost too perfect.

Nevertheless, I woke up from my near-death experience, and found out that the only way I could survive was by getting an urgent heart transplant. My heart, at this point, was only pumping because of medications. And even with those medications, it was barely pumping. My blood pressure was persistently low. I became anemic, which didn't help the heart failure. My creatinine was slowly rising, which meant that there were just days left until I probably required hemodialysis. I came close to death a few times during those weeks; my cardiac index was barely staying at 2.0, and I went in and out of ventricular tachycardia many times.

I even had to try to write out my living will and my advanced directives. Try doing that at the prime of your young life while strapped to a hospital bed.

Throughout my hospitalization, I was extremely rational and emotionally strong. Sure, I had my bad days and became angry and sad about the situation, but for the most part, I stayed positive (with a lot of dark humor). I read many good books and journaled often.

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Feeling Invincible

One day, I came across Rock Hudson's famous quote: “I am not happy that I am sick. I am not happy that I have AIDS. But if that is helping others, I can at least know that my own misfortune has had some positive worth.” I decided that at least my own misfortune would have some positive worth. Many good things would come out of this. I knew it.

The first good thing? Empathy. I would be able to empathize with my patients. No more being ignorant about what is not going to hurt.

The second good thing? Early screening for my family. This was genetic, and at least my family members would be able to get their hearts checked early on. I told them to ask their doctors to order echocardiograms. I wrote down my diagnosis for them to take to their primary care doctors. “Tell them that I have this, OK?” I told my brother. At least everybody around me was presumably going to be all right.

Figure

Figure

What else? Resiliency. When you are feeling so invincible, when much is going well in your life, remember that anything can happen to you at any moment. Any sort of unexpected catastrophe can immediately change your life. You can even die or, as in my case, almost die. It is a humbling experience that teaches you so much about the human condition, so much about what to prioritize and how to live the rest of your very finite life. With that being said, even when everything is going horribly in your life, you will be able to overcome it. Resiliency is something that we all carry in our blood. It's up to you to use its powers to overcome the toughest moments of your life.

Please, always remember how truly resilient the human spirit is.

You can hate yourself, yell at your parents, blame any god in whom you believe, ask yourself every night, “Why me?” But will that change anything? No, it won't. You may as well change your mindset, become resilient and strong, learn from the misfortune, grow from the experiences, and continue your insanely beautiful life. I promise that it is a very beautiful life that you're living.

In the future, I don't know how I'm going to explain this to my skeptical colleagues or my questioning supervisors. But at least I can tell them that I will be very empathetic with my patients and that I have lived a complicated but interesting 31 years on this Earth; I carry many lessons with me.

Most importantly, though, I can tell them that I will never take a day off from work unless I am literally on my deathbed.

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Dr. Gragossianis currently a third-year emergency medicine resident in Philadelphia. She earned her osteopathic degree from Lincoln Memorial University in Harrogate, TN, in 2016. She is interested in critical care medicine, medical education, and public health. In her spare time, she enjoys blogging and taking photos. Read her blog about her heart transplant athttps://www.achangeofhe.art/, follow her on Twitter @AG_EM33 and on Instagram @a_change_of_heart_blog.

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