My Life

You don’t realize it. But at some point, you start referring to things as happening either “before transplant” or “after transplant.” For those of you who have gone through a very significant emotional event, an acute critical illness, a life-changing decision … you know exactly what I’m talking about.

I got my wisdom teeth pulled out Before Transplant. That trip to New Orleans? Before Transplant. And my best friend's wedding was 9 months After Transplant. Right.

Before Transplant, my biggest hurdle was, like, whether or not I should stay in to study for my exams or go out with my friends on the one night I was off from work. 

After Transplant? Every. Single. Thing was a hurdle. In the beginning after my surgery, even waking up was difficult enough. I wanted to sleep in until noon on some days. On other days, I had not slept at all and had already gone to the gym by 7am— “prednisone manic disorder” I called it. I had so much energy, and with that came a price. I wanted to be everywhere and nowhere all at once. My mind was constantly going at 100mph. I couldn’t stop, not even for sleep.

I had to get used to a lot of new things. Becoming a patient was so difficult for me. I had never been in this space before. And I wasn't just a "regular" primary patient with hyperlipidemia or a family history of osteoporosis... No, no. I was a damn complicated one with a fresh solid organ transplant. Immunocompromised. Young. The one the residents would be talking about in between their rounds— “But she is so young! Did you see her yet? In room 5?” Automatically complicated. At the least, I probably got the "Guarded Prognosis" stamp as soon as I stepped into any hospital.

Eventually, I got used to being a patient. And things slowly normalized. And you know, my life right now is pretty normal (okay, so stop laughing), or at least, pretty close to what it was pre-transplant. 

But it will never be exactly what it was back then. And the finality of that never— it will never be exactly what it was back then— will always be so difficult to deal with.

At some point, you do start to grieve the old life that you once had. And you feel guilty about it.

On one hand, you are grateful and appreciative for this second chance at life, the “gift of life.” There is so much depth and meaning that goes into everything. You don't let the little things get to you. You are more understanding of The Bigger Picture— the thing that people yearn for and never find, even after years of soul-searching and dozens of trips around the world, only to feel vastly empty in the middle of the Sahara Desert while asking themselves “Why?” You love only what you want to love passionately, and you now understand that time *is indeed* your most valuable asset. Others understand that, too. You notice the way people truly wanting to spend their time with you. It makes you feel good. People have always been good. It should have never been a question. And you try to explain it over and over again to your friends who ask you the same question over and over again. “You don’t understand, like, everything can actually be taken away from you RIGHT now, you can actually die, your life can change into a ‘before’ and ‘after’ in one second—” but instead, you chuckle and stop explaining. You finally realize what a gift it is-- to see the world in a way that most others don't, and probably never will … until it's too late. And perhaps that is what they really mean when they call it the “gift of life.”

But you did not properly mourn the death of your old life. The mundane things that you took for granted. Being able to walk around with normal, painless joints. Not having to look up which foods interact with your medications while you’re at the restaurant. A month or two without blood draws at the clinic. Waking up a little lightheaded, and actually not wondering, “Is today the last day of my life? Am I in heart failure, again?" (Surely, the next time that I’m in heart failure will be my last. Isn’t that something…) Again, it’s hard to explain, unless you have been there.

Some days are easier than others, and you learn how to process through everything in your own way. I found that my [dark] sense of humor helped me through a lot of my, ahem, issues.

And you know, I remember this:

When I was younger, I had two very big dreams. I wanted to become a doctor. And I wanted to live in New York City. Flash forward 20ish years and here I am… 33 years old, living in a beautiful apartment overlooking New York City, working at a well-known hospital, about to become a double-boarded attending physician…

But of course.

After Transplant. On tons of medications. Immunocompromised. During a pandemic…

So I laugh.

And so it goes.

Maybe we don’t need to constantly mourn our past lives. Or, at least, we don’t have to think of it as mourning. Maybe life is all about us morphing and evolving into other, newer versions of ourselves, and some versions happen to not be as challenging as others. Move on. Let it go. It's okay to not be okay, but you can't dwell forever.

Who knows? Surely, I don't have all of the answers, not yet at least. But I do know that with my second life, my “gift of life,” I still have so much to share with the world.

—-

I’ll end this one with a very special quote that will always remind us of these times:

“Get. Vaccinated.”

— Me

The Otherwise Healthy Population

I was once 30 years old. Healthy. Not a care in the world. Invincible. 

I, a young physician myself, had only been to a physician’s office just a handful of times in the last ten years of my life. One time, I had battled appendicitis and had a little scar to prove it.

Completely healthy otherwise.

Invincible.

There is, however, that small percent of “healthy people” who suddenly get so sick that they require life-changing interventions— including things like ventilator support and organ transplants. 

We glance over that small percent in medical school— “healthy people, no, rarely do they get sick.”

With COVID-19 going around, infecting both the young and old, the healthy and unhealthy, and even the invincible, I’d like to tell you what it’s like from a first-person perspective ... what it’s really like to be sick. Not just “I think I have a cold” sick. This is “worst case scenario” sick. Because this might, in fact, help you realize what kind of situation we are dealing with. And how seriously you should be taking this. 

When you first get intubated, you don’t remember anything. I didn’t. The only thing you do remember is how difficult it was to breathe right before you got intubated. You remember, for the rest of your life, coming to terms with your death (peacefully), you remember the sweating, feelings of heaviness in your chest, and you remember the panic and the tension in the room— nobody was expecting it. You apparently look at your colleague and the last thing you say is, “Please don’t let me die tonight.” This will haunt them for the rest of their medical career. 

When you get extubated, you are awake for minutes before extubation. Minutes feel like hours. You gag on secretions as your visitors stare at you. Your dignity? Lost. You cry from the discomfort. But you have to wait. As soon as the endotracheal tube is pulled out, so are a lot more secretions from the orogastric tube— they were both in there together. You are immediately put on high-flow oxygen, which is perhaps even more uncomfortable, because your mouth is kept dry. You are thirstier than you’ve ever been in your life, but you can’t drink anything. You beg for ice chips. You feel nauseous. You may have laryngeal nerve paralysis from your (two) intubations. I didn’t have a voice for two months after this and had to see an ENT doctor for follow-up— apparently, this is quite common.

The ICU— one of my favorite places to be as a doctor— is the worst place to be as a patient. You are constantly being reminded of your impending death. Your vitals are being checked by the minute with your arterial line that never seems to stay in place (it needs to be replaced more than once)— and none of them are ever normal. Your blood pressure is always too low, your oxygen saturation is always too low, your heart rate is always too high. When they fix one thing, another one worsens. It’s a delicate balance— trust me, I know. 

You are taken away from your room to get procedures done every few days. It’s exhausting. Sometimes you wonder if things would have been easier if you had just died those few invincible days ago. 

You see your dad cry. A lot. In 30 years, you have never seen him cry. 

You see the stress that you are putting on him. He starts having chest pain one night but doesn’t want to go to the ER to get evaluated. He minimizes it. Your mom minimizes it. You don’t have the energy to feel guilty anymore.

You never sleep. You are tethered by wires and tubes to a stiff bed and you can’t lay down comfortably. 

You never sleep because you are afraid that if you fall asleep, you won’t wake up the following morning. Sometimes, when you’re sleeping, your heart goes into ventricular tachycardia and you don’t want to be sleeping through that. That’s how I justified it. It doesn’t make sense, but a lot of things don’t.

You finally get your life-saving heart transplant— the one you never knew you needed. The one you were told that young people likely never needed, because young, healthy people rarely get sick. If you eat right, exercise, live an active lifestyle, live a good life, become a productive member of society... why would you ever get so sick? So suddenly?

Because sometimes, things happen. 

You get that transplant in just a few days— days— and you get discharged. Your life is forever changed. You work around alarm clocks for your medications. You stay away from crowded places. People stare at you as you disinfect your plane, train seat— your new normal is understanding that you are now (officially) the opposite of invincible. Incredibly vulnerable, in fact. You know that your life won’t be as long as you once thought it was going to be. But, on a positive note, you see things in a new light— even the mundane things are more beautiful, you are more grateful for each day, and you will never take advantage of your health ever again.

Because yes, at one point in my life, this crazy thing did happen.

And I’m here to tell you that these things could happen.

So please stay safe out there. If you feel like this is nothing, and this can’t affect you, and you’re healthy and invincible...

just remember that there’s always a small chance that you’re not. 

And I hope that you never have to go through what I went through to prove this.

——

To end this:

• The latest on heart transplant recipients and COVID-19 can be found on https://www.jhltonline.org/ — so far, low numbers, but little to no evidence to support that “healthy” (aka no other co-morbidities) heart transplant recipients are at higher risk of COVID-19 complications than the general population (YEP, I know, but read the data yourself before coming up with any conclusions). Promising! 👍

• I’m doing fine, thank you for caring & asking. ♥️♥️♥️

• I love all things “Alice in Wonderland” (fun fact) so here’s a good image to end this post with:

The Letter

I recently received a letter from my organ donor’s family. I have been very vague about the contents of the letter to respect them and their wishes (and please do not ask me to send it to you). What I have not been (or will not be) vague about are my feelings about reading it, processing it, and continuing my life knowing who’s heart is beating inside of me. 

My organ donor was young. She was in school and was involved with many extracurriculars. She seemed very loving, and was absolutely admired by all around her. She was passionate and had many big goals.

Now her loving, caring heart lives on inside of me. 

Some have asked how I felt when I read it? Reading the letter was difficult and emotional because I really found out about the girl who died and gave me her heart. She was another human living her precious life on Earth, just like me. She was a beautiful soul.

I realized that the day I celebrated the most (and have been celebrating) was the day that I was reborn with a new heart— during the early morning hours on that cold, January day. But now, I will remember that this day marked the end of her life. She will forever be a big part of me (both literally and figuratively). So do I celebrate life? Or do I mourn death? 

The obvious answer is that I should celebrate life. Her legacy will live on. I can do so much with our heart. I can go back to saving lives. She will go back to saving lives. I get it. I absolutely do. Really. I understand the positive things about this.

But I am only human. The darker thoughts will always linger. 

I am so grateful that someone young with a healthy, strong heart died as an honorable organ donor— I needed that heart quickly. But I am so upset that someone young with a healthy, strong heart died. I am so happy that I get to live the rest of my life to accomplish all of my goals. I am so sad that someone else will not be able to accomplish her own goals because of a sudden tragedy. I am so excited to spend my time with my friends and family during this (awful) medical leave. I am so angry that her friends and family can’t spend time with her, unless you count the moments they stand around her gravesite— being six feet under is just not the same.

I am so lucky to be freely breathing this fresh air with no cough and without any lifesaving pressors and inotropes— remember, I can conquer the world nowadays. 

I am feeling so guilty, though. These were supposed to be her breaths. 

It’s interesting to think about. Truly. We were both in Intensive Care Units, miles apart, at the same time. We both probably had the same procedures done to us— was her central line on the right or left side of her neck? Was she on propofol and fentanyl? Surely she was on her own life-saving medications, I wonder which ones. Did her arterial line continuously kink and need to be replaced? 

I imagine that her family was there, too, hoping that she would get better. I wonder how many balloons and gifts were neatly laid out around her bed. I wonder if her friends were there, trying to make her laugh with stupid jokes. I wonder how many times they held her hand. The words haunt me now …. “Can you squeeze my finger?”

Sigh.

On the same day, two incredible things happened: 

In an ICU, I was told that I was going to be able to live my life again. A glorious moment. My physicians and nurses came in to hug me. 

My family and friends were in and outside of my room. Everybody was hugging and crying. 

But a physician in an ICU, miles away, told a family that there was little hope left. She listened to the last of her lung sounds, her heart sounds. She checked her pupils, both dilated. A quick "Time of Death" was recorded in the chart.

Her family and friends were in and outside of her room. Everybody was hugging and crying. 

So similar, yet so different...

I guess Kurt Vonnegut put it so nicely once:

”And so it goes.”

I will write the rest of this post (selfishly) for my own peace of mind. Perhaps her family will read it someday:

My Kyank, 

Kyank is the literal Armenian word for “life,” but it is used to address the very special people in your own life (the ones you love more than anything). It’s only fitting that I call you that.

I am you, and you are me.

I had a lot in common with you. It was more than just our blood type. In fact, it was kind of chilling to read about your interests. We probably would have been good friends. But instead, our paths crossed in the strangest of ways. On the last day of your life, on the first day of my life. On the worst day of your life, on the best day of my life.

And I will be honest— I don’t know if I should be upset or happy or angry or guilty or grateful about that. I just don’t know. 

What I do know is what I've been saying since I woke up with your heart inside of me: I will do everything that I can to honor you and your family. 

Thank you for the gift of life.

-A