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

Restrictions

Last year, after my transplant, I had restrictions.

People would ask me all the time, “Okay, like you’re good now, right?”

And I never knew how to answer that question.

Considering that I am not physically on my deathbed, but I require medications every single day for the rest of my life to make sure that my heart doesn’t stop working on me, I have to forever be careful of salads, sushi, handshakes, sporting events, being in large crowds in general, keeping my distance from you, making sure I have an extra mask on me at all times, constantly washing my hands, sometimes I forget things, there’s this one thing with my sternal wire, oh excuse me my alarm just went off—

I guess I am good now, yeah.

I was taking a train somewhere last year and there were not many seats left except for the two seats in the front of the car left for people with disabilities. I wanted the least “crowded” area of the car and didn’t want to be sitting next to a [virus and bacteria carrying] stranger. I was still just a few months out of transplant. I stood in front of one of them, didn’t even sit on the seat, when two women came by.

“These seats are for elderly or disabled people.”

I told them I was sorry. I got out of the way.

“You young people, you don’t need these seats. My mom has arthritis and I have to sit with her so we are taking these seats.”

“That’s fine, I wasn’t sitting there, I was just standing in front of it.” I didn’t even want to explain the whole me-distancing-myself-from-everyone thing at this point. No one understood this concept. I took out my mask and wore it for the train ride, while standing in place.

She looked at me. A lot of people did when I wore a mask.

“What are you? Sick?” she chuckled.

I annoyingly said, “No, I got a heart transplant a couple months ago and this is the first time I’m on a train. I have to wear a mask everywhere and I keep forgetting to wear it.”

I think she was embarrassed after this. She turned beet red, and apologized multiple times throughout the train ride. She offered her seat to me. I kindly declined.

And you know what else?

I hated wearing my face mask. I wore it all the time when I first got discharged. When I first started working clinically, I pretty much wore at least a surgical mask (or N95 mask) at all times in the hospital. My face would break out in pimples. My ears hurt from the ear loops. I had headaches. So many headaches. And how did my doctors think I was supposed to drink all this water if I was wearing a mask the whole time… I have accidentally spilled water all over myself many-a-times while trying to drink water through my mask. Yep.

Stores might as well be closed, I thought to myself during my quarantine. I couldn’t get my nails done. Infection risk, they’ll be touching me, close contact. I couldn’t go to TJ Maxx and buy all of their discounted anti-aging face creams. Infection risk. Too many people around me. My discounted anti-aging cream obsession had to be put on hold for a few months.

I had to get used to exercising at home, especially if the apartment gym had more than 1 or 2 people working out in there. I bought a stepper off of Amazon and watched YouTube videos on how to work on everything from tight butts to arms to abs all from home. Because heart transplant patients’ number one worry should always be tight butts and abs.

I would walk from my couch to my bed. My bed to my couch. Take selfies. Post on Twitter about taking selfies. Read. Board review. Walk to my couch. Look outside. Binge-watch true crime everything. Read Board review. Take selfies. Rinse, lather, repeat. Google Hangouts and FaceTime were awesome— but even those got boring. There just isn’t much going on, I love my new heart, it wants to be OUT out with you all already! I would say.

There was a little bit of anxiety that came with going back to work in the beginning. We see thousands of weird infections in the ER… who knows what I could be exposed to… could this be the last patient I ever see, as I would intubate an elderly patient in respiratory distress (in a mask and yes, eye gear too, always). But it got better with time. I was always very careful about my use of PPE, and my colleagues all knew about my situation and never hesitated to help me out if I asked for it. Ever.

My home became my everything. My own space became my sanctuary, some distancing from others was good… and this became an incredible part of my recovery. I learned so much about patience and myself. And now, I just feel like all of this is normal for me. None of it bugs me— I don’t feel uncomfortable in my space, I don’t feel loneliness at home. I am a little anxious about COVID-19, sure, but overall I know that we will get over this as long as we continue to work together.

Once this is all over, you will never take advantage of being outside with people. You will never take advantage of busy streets with crowds, people laughing, people yelling. You will never take advantage of having wine and dinner with your friends, of the waiter coming to your table asking, “And would you like to hear our specials for this evening?”

You will never take advantage of being able to breathe fresh air without a mask ever again. And you know, your ears do eventually stop hurting once you get used to the mask. ♥️

To end this post:

• Podcast recommendations: This American Life (heartfelt storytelling) & Reveal (the best investigative journalism, in my opinion) have both had some amazing episodes in the last 3-4 weeks about COVID-19 and how different people are dealing with it.

• April is Donate Life Month!!! 💙💚 Make sure to consider becoming an organ donor if you aren’t one already. You can SAVE EIGHT LIVES and IMPROVE THE LIVES OF ~100 OTHERS if you do become an organ donor! Click “Organ Donation” above for more information.

Hahnemann Part One

I was going to spend the rest of this blog talking about my Life After Transplant. I was going to talk about all of the crazy, sad, funny, and even some unfortunate things that happened to me after getting discharged in January 2019. My first everythings— my first acute rejection, the first “coffee date” I had with one of my favorite ER nurses, my first hair cut, the first time I got sick and was worried about having to get admitted to the Intensive Care Unit all over again. My first BBC interview. Wink.

I was going to start work on July 1, 2019. Part-time— administrative and teaching duties to begin with. I was going to spend the rest of my summer hanging out by the pool, blogging about my unforgettable firsts during my “discharged” days, and studying everything that I may have forgotten about Emergency Medicine. Hashtag post-transplant-life.

But instead, life handed me a new surprise.

Like, RANDOM SUDDEN HEART TRANSPLANT. Things looking good. And then. BAM! SUDDEN HISTORICALLY SIGNIFICANT HEALTHCARE CATASTROPHE AND UNEMPLOYMENT!

The week before I started working again, there had been rumors going around that my hospital (Drexel/Hahnemann University Hospital aka The Big H aka HUH) was going to shut down. Mind you, these rumors had been going around for years. Decades. Once in awhile, they’d resurface. We’d laugh. The hospital wouldn’t shut down. And we would continue with our jobs.

HUH was one of the oldest hospitals in the nation. Basically run like a county hospital— an inner-city tertiary care center catering to all different types of patients. We were always “doing more with less.” We didn’t always have the most innovative and sexiest medical technologies available. Our elevators didn’t always work. And yeah, our patients didn’t always have insurance, and in fact, many of them were homeless. But we loved taking care of them. We loved our jobs.

So...

July 1, 2019. I went back to work. The crazy transplanted ER doctor resident girl, basically on her deathbed just months ago, back at work. What a miracle, how beautiful, how courageous. Inspiring. Tupac & Oliver Sacks would’ve been proud. I was ready to conquer the world, and then as I walked into the hospital, I realized:

Shit. THIS HOSPITAL IS CLOSING?

News cameras everywhere. People crying. Everyone in disbelief. My phone going off by the second. The OB resident saying this, the Anesthesia resident saying that. The Internal Medicine resident continuously calling the Radiology resident, in turn continuously calling the Nephrology fellow… The Emergency Medicine residency group chat just ding-dinging with updates (or rumors, we weren’t quite sure).

From what we could gather, Joel Freedman, our hospital’s CEO, decided to shut down Hahnemann. He was losing $5 million a month. Allegedly. (We will never know what was really going on.)

Anyways.

Was he *expecting* to profit off of The Big H? Do not compute. What?

Oh wait, he was no doctor. He wasn’t even in healthcare. Silly me to keep forgetting that ... healthcare institutions... are… usually… run by... business people. Womp womp.

He purchased HUH exactly one year ago, stating that his company was going to help us out. Turn everything around. I mean, it SEEMED like he wasn’t in it for the money.

And then there he was, telling us that he was losing millions of dollars per month. Telling us that he was going to shut down the hospital. Boom.

He wasn’t noticing the 2000+ employees (nurses, doctors, techs, support staff included) losing their jobs.

It didn’t seem like he cared about all of the medical and nursing students who were using HUH as their first glance into the Real World of Medicine— an educational platform, where lectures were taught, where renowned Drexel University professors were attentively listened to.

He wasn’t acknowledging us residents, working 40-80 hours per week, after sacrificing our 20s to learn the intricacies of Medicine, using HUH as our training institution to further our careers. To take care of some of the sickest people who needed our help, no matter their gender, skin color, socioeconomic status.

Most importantly, though, he wasn’t seeing our patients. If only he saw what we handled and dealt with on a daily basis. How many lives we changed. How many souls we saved. How many people would come into our emergency department, afraid of being seen by our doctors because they didn’t have insurance but also really wanted to get a wound checked out. A safety net hospital. We also had patients who would come in regularly, for hemodialysis or chemotherapy. What were they going to do?

All right. We were going to close. That’ll take at least a year, I thought. Nothing is going to happen overnight. (Fast forward - it took just a couple of weeks). I called my parents. I called my cousin, a business lawyer. I called anybody I could think of— even my friend who once took a course in Contract Law. I remember that he said that it was the hardest class that he had ever taken. He might have been able to help me out here. Someone HAD to help me understand what was going on.

I remember some words like LLC, Chapter 11, Chapter 7, subpoena, deposition, corporate vs. civil, bankruptcy court ... and I remember them all being really confused about the situation but ultimately saying something like, “Yep. It is what it is. Welcome to America.”

And then I remembered myself in the hospital just a few months ago. People pestering me about how this could have all happened to poor me, and I remember basically always responding with,

“It is what it is. Let’s move on with the show.”

I took my little heart thing and tried to look at the bigger picture. Remember? I tried to make something of it. I tried to learn from it.

So I took a step back and tried to look at the bigger picture of our hospital closing. It is what it is.

This was disastrous. But this was something we could learn from.

What Joel Freedman and AAHS (his company) did was an absolute travesty. However, the system let it happen. What we had here was a failure of the system. HUH was a for-profit hospital. A company with a business-minded CEO was able to buy it and thus tried to profit off of it, as it would any other Macy’s or Dave & Buster’s (am I not right on this?). It ultimately did not profit off of this urban, inner-city healthcare institution that catered mostly to uninsured patients. So it filed for bankruptcy.

So there’s one system mistake: for-profit hospitals.

A lot of things were kept under wraps from us. Really. Nobody believes us when we say it, but we didn’t know much about what was going on. Doctors— attendings and residents— were not represented very well in all of this. Our nurses did a wonderful job of speaking up and making themselves heard (and we joined them many times during their rallies). The administration knew about what was going on most of the time. But I felt like us physicians were the last to know anything, and the least represented. The ACGME was able to help us residents towards the end of all of this. But our faculty had little say in anything and did not know what was going on most of the time. And they continued to work, and they continued to help us look for new residency spots, without knowing what was going on, without knowing if they were going to get a paycheck (or have a job) by the end of the week.

So there’s another system mistake: physician representation during hospital catastrophes. I’m a fairly new physician. A young and naive physician. I ask those who have been practicing for years (our mothers and fathers and mentors): are physicians even represented well … EVER? Are our voices ever heard?

Oh and, 500+ residency and fellowship slots were at stake during all of this. Our funding through CMS was at stake. There were rumors going around that, because the company had filed for bankruptcy, we would be “unfunded residents” looking for new hospitals to work at. This may be a bit confusing to understand (I don’t really understand it either), so please bear with me as I try to explain the process:

• Residency slots are funded by CMS - Centers for Medicare & Medicaid Services.

• CMS gives each hospital XXX dollars per resident that they hire.

• Hospital takes a part of it, and resident gets a part of it as their annual salary.

We were supposed to be transferring to new hospitals to continue our training (another fiasco that will be talked about), but it would be helpful only if we transferred to that new hospital with our funding. There were rumors circulating for 3 weeks about whether or not our funding was going to “come with us” (because of the bankruptcy filing), putting us all through way too much stress. Was there one lump sum somewhere waiting for us? Did the company that owned the hospital even have this money or did they spend it on yacht parties? I don’t know what CEOs do, but I saw that Enron documentary once. And Fahmi Qadir taught me a thing or two about businesses.

System mistake #3: probably not a good idea to have residents who depend on CMS funding at for-profit hospitals.

(Another mistake: communication issues in general, we were getting our information about what was happening to us from WHYY and The Philadelphia Inquirer.)

The funding wasn’t the only issue with the residents. There were no guidelines set in place for 500+ trainee physicians to suddenly become “orphaned” (aka have no residency because of a hospital shutdown) in this fashion. Remember, this was SUDDEN. Specialties (like Orthopedic Surgery and General Surgery) that have specific rules in place to be able to sit for their board exams (e.g. their final two years of residency must be completed at the same institution) were scrambling to come up with solutions/exceptions because of this never-before-seen emergency. International Medical Graduates had their own set of problems to deal with regarding their J-1 Visas. And those doing extra Chief years in various specialties (like Internal Medicine) had no idea what they were going to do.

And yet another mistake: no guidelines in place for residency and fellowship program emergencies. I can’t blame ACGME or CMS or the People in Charge (and at this point, we are really confused as to who exactly is in charge), because this has never happened before. But perhaps we can use this experience to come up with some sort of emergency plan for the next set of residents this may happen to. And I have a feeling that if Wealthy Businesspeople in Suits see what happened with this for-profit hospital, and we don’t put an end to this quickly, this JUST MAY happen again.

Because let’s just face the reality of it all: condos in Center City, Philadelphia will make this company more money than Hahnemann ever did. And I believe that they knew this when they purchased the hospital in the first place. But hey, that’s just my opinion.

So, there are TONS of things we can learn from this. And I’m only talking about the system right now. Yeah, it’s totally “Alin” to look at the bright side of things. “Hey guys, at least everything sucked for only a few weeks but we are mostly OK now and we can learn from it all!” I know.

But, I keep telling people that dealing with all of this sucked, but in the weirdest way … it kind of brought me back to reality.

It’s kind of nice to be able to experience even the crappiest of experiences than to not experience anything at all.

As in, it’s kind of nice to be able to experience all of this than be dead. You know?

I know that it sounds cheesy, but it’s true. Through all of this, I have had a different perspective than most (again, I want to make sure people understand that I *do* think that this is all terrible, and in no way justifiable).

My first week back at the hospital was filled with people seeing me for the first time, not realizing who they were talking to, saying things like, “This is such a crappy situat—-ALINNNNNNN!!!!!!!!!!!!!!!!!!!!!! OH MY GOD! YOU’RE ALIVE!!!!!!!!” We’d cry and hug. And we’d get angry at the CEO together. And we’d laugh at how ironic my whole situation was all over again. The whole spectrum of human emotion, multiple times a day, every day that I was there.

And I would walk back home every single day thinking, “Wow, I can’t believe this hospital is shutting down, and I can’t believe my residency program is coming to an end, and I can’t believe I only had a few months left … And I can’t believe that I am so alive right now.”

So that’s just the beginning of what I had to deal with during the month of July. Part Two will be available soon, it’s kind of all still going on. But I figured— I keep getting asked about what happened so I thought I’d put “my side” of things out there for everyone to see for now.

“What matters most is how well you walk through the fire.”

— Charles Bukowski

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