Updates

Hi all!

I know, I’ve been the WORST with updating my blog. I found out that I’ll be starting work soon, so I’ve been busy with getting excited for that. ;)

If you aren’t sick of my story yet, I wrote an article for EMNews … you can read it here.

Also … The Philadelphia Inquirer recently did an interview with UPenn social workers, my friend Caitlyn, and me. In this piece, we talk about the importance of mental health before, during, and after transplant. People keep saying that I’ve had a good outlook on it all, and that I’ve been [ridiculously] positive. I do think that when life throws something [ridiculously] crazy at you, you only then realize how strong you truly are to overcome it; your mindset matters. Thanks to therapy, introspection, mindfulness, understanding the importance of emotional health, and (oh yeah) maybe my Bachelor’s degree in Psychobiology … I am where I am today.

And lastly, one of my blogposts about my feelings toward my own mortality was published in The DO. You can read it here (or just scroll down ;) lol).

I will soon start blogging about my life after transplant and how hilarious, heartwarming, difficult (but do-able) this all has been. Can’t wait.

Thanks for all of your support, everyone. Can’t believe it’s been almost five months!

P.S. I was thinking about this recently .. it’s been very hard trying to go “back to normal” (see pics below) but I take baby steps every day. Sometimes, I’m scared to go somewhere because it’s too crowded or I’m anxious about the food that I’ll be eating (remember, I have to be careful for awhile since I am so sensitive to infections).

But I decided this: I can’t focus the rest of my life on “not dying.” I must instead focus on “living.” Cheers!

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

The Call

Going back to my hospitalization…

I always had many people around me, especially in the evenings. On this particular day, I had two of my friends visiting me. My family had decided to go out for the night after I pushed them into doing so. “Please go. Have fun. FOR me,” I told them. 

Where did they decide to go? A nearby casino. My family really is amazing. 

My friends were sitting next to me— I was particularly close with them and was very excited to have them there that evening. We chatted for a while. I told them the story about how I accidentally snapped at the CT surgeon earlier in the day, because I mistook him for Matt. We talked about the overly zealous guy from dietary services, who was so keen on always getting my order right. I told them that I had argued with the Cardiology fellow and Anesthesiologist about keeping me NPO for a procedure—“It’s not like I ask my dying patients what time they’ve eaten before I emergently intubate them!” Right? (I mean, I’m right.)

After a while, they let me unleash my anger.

Every day, I would have to explain to people that I didn’t care if the food wasn’t the best. I didn’t care if the sun wasn’t shining into my room that day. I didn’t even care about my gown being too big on me. Thank you for reminding me how shitty my situation was (even shittier than I thought) by bringing up all of those shitty little things that I wasn’t even worried about in the first place.

I barely had an appetite, so when I did, I was happy to eat. And you know what else? My hospital wasn’t a restaurant. My hospital was a world-renowned academic institution with some of the most brilliant doctors and nurses that I had ever met. I actually didn’t want my hospital to be a restaurant.

Honestly, though, I was lucky to even be alive to have the option of eating. Even syrup-less pancakes with apple juice were delicious when you were constantly being reminded that you might die that day.

Sure, the sun wasn’t shining into my room and my view wasn’t the best, but when was a hospital room supposed to be a hotel room? Plus, I preferred this sub-par hospital room over a shelf in the morgue. I assure you.

And ah, my favorite complaint: my gown didn’t fit me. What did people want me to do about that? Every time my visitors were dramatically worrying about my gown size, I remembered that old Brian Regan bit. Brian's optometrist once confronted him about his lazy eye, and followed it with, “It’s no big deal. It doesn’t affect your vision or anything. I just thought you’d like to be self conscious for the rest of your life.” Ha.

So others complained for me most of the time, while I just laid there and wondered when they were going to stop being so pretentious and ignorant. When were they going to start worrying about the things that they really needed to worry about? Sometimes, I wondered how they would feel if they were in my place. There is no way that they’d be complaining about the cafeteria food if they were on their deathbed.

Maybe.

I don’t know.

People are strange.

I had always hated perpetual complainers, but throughout this hospitalization, I came to the conclusion that I never wanted a toxic complainer in my life ever again. I remember reading something like, “You have to die once to really learn how to live.” Take that piece of truth to your heart. Swallow it whole. Remember that constantly complaining isn’t going to change anything. Life is so incredible and has the potential to be lived so well. Some definitely need to realize this more than others.

Anyways, back to my story.

It was a good visit with my friends. After the visit, I was basically alone in my hospital room— a rare occasion for me in the evenings. I was feeling very tired that day. I didn’t really know what I wanted to do before going to bed, so I was just staring at the walls. I looked over at my monitor. I glanced at the medications I was on. For once, I decided to turn the TV off (if you know me, you know that I cannot live without background noise— the noisier the better).

And I just sat there. 

I then remember my nurse coming in with a phone and telling me that I had a call. He handed me a phone and left the room. 

“Hello?”

The only thing I remember from the phone call was:

“Blah blah blah blah MATCH blah blah blah HEART blah blah ACCEPT?”

“Yes. I have to go call my mom now.”

And that was the best I could do. I have to go call my mommy now. No “thank you,” no “OH MY GOSHHH!” There were no balloons. There was no party. There was no clown, no party favors, no crowd. My residents and nurses weren’t throwing confetti into my room, either.

I was just comfortably alone. During the happiest moment of my life. I felt pure bliss.

And then, I felt nauseated.

And then, I vomited.

(Just like I always did, since I was a child, when I was nervous about something. Physical manifestations of how I was feeling psychologically, I think.)

I called my nurse and asked for some Zofran and mouthwash. 

“There’s a heart!” I told him. He was very excited too, and he told me that he’d come back in a few minutes with a plan. 

I had promised my family and closest friends that I would call them the moment I knew that I had a match. But (please don’t hate me), in that moment, I just wanted to sit with myself. It was a quiet 10 minutes. I did some reflecting.

I thought about who my donor could be. Maybe a 20-year-old female involved in an MVC. Perhaps a 26-year-old male who was braindead after a sudden illness. Maybe my donor was that other 30-year-old female who deteriorated after losing a battle with some random genetic condition that she didn’t know she had. 

Did my colleagues try to resuscitate this person? Could I have ever potentially resuscitated this person?

Moment of silence. I thanked my donor and their family.

I wrote in my journal, “Thanks for 30 years of service, Heart.” Super cheesy, I know, but I didn’t want to forget how I was feeling in that moment. Grateful that my poor heart had come such a long way with me. Thirty years of craziness.

I found myself smiling. I was going to live. The rest of this was going to be easy. They were going to crack my chest open, take my heart out, put a new one in, put a few vessels together. It wasn’t an extremely complicated surgery (from what I remembered during medical school). I would wake up afterwards. Probably with some pain. I would get discharged in a few days. I would go back to my normal life. Kind of.

I guess one of the hardest thoughts that I ever had (and continue to have) was this: things were never going to be normal normal.

But I would get as close to that as possible. 

This was nothing that I couldn’t handle. I had gotten through Organic Chemistry at UCLA. I used to work full-time night shifts while attending an accelerated Master’s degree program in the mornings. I had moved from Los Angeles, CA (population: 10 million) to Cumberland Gap, TN (population: 500) all on my own, without knowing one person, and had beautifully made it through medical school there.

I had once battled a complicated case of appendicitis (not surprisingly, I had been very stubborn about going to the ER then, too) and I had been able to make it out alive. I had actually showed up to Anatomy Lab just three days post-op (I was kicked out by my professor, though … “You need to go home and rest!”)

This was just a minor little speed bump in my life.

My friends would repeatedly remind me that I hated anything that came too easy— we’d joke about how this would happen to me just because I loved challenges. 

Everything was going to be okay.

In that moment, I also decided that after I woke up from the procedure, I was going to do *something* with my life. Something special to honor my donor for the rest of my life. It would be something to make that family proud. I didn’t know what, but I knew that I would. 

With this inconvenient life event, I would grow. I would learn from it and I would use it, ultimately, to change the lives of a few other people (or perhaps the world, ha).

“Your character is built on how you handle moments of adversity,” I read somewhere. 

I think I was handling it well.

After my contemplations, I called my mom and asked her to kindly step away from the slot machines and return to the hospital (that part of my story always makes me laugh). I then proceeded to call the rest of my family and closest friends. I sent a message to my residency Groupchat. I texted some of my attendings. 

My nurse brought in some Zofran, some mouthwash, and chlorhexidine for my final ICU basin bath. OR Start Time was scheduled for 2am. Eventually, my family and friends came running into my room. The night float residents and interns barged in to give me hugs. Even the Pulm/Crit fellow (who had been consulted a week ago) came by before leaving the hospital. “I just wanted to say congrats. We were all rooting for you in the MICU. Thank you for being you.”

The Anesthesia resident came in with some paperwork and a hug. A few of my former nurses surprised me with “Congratulations!” and tears of joy. The CT Surgery fellow walked in, excitedly. “I’m so happy for you! Let’s do this!” he said.

“Yeah, okay! But who’s gonna be cracking my chest open in 6 hours?” I asked him.

“I probably will,” he said.

“That’s f&*%ing awesome. And don’t worry about the scars. I’m not one of ‘those’ patients.” I told him.

“You’re not like most patients, Alin.”

We all laughed.

“Oh yeah, speaking of, I’m apparently really difficult to sedate.” I told the Anesthesiologist.

“Yeah, that’s not surprising, but we’ll take care of that.” We all laughed some more.

I was so happy. I’m telling you— pure bliss.

I knew that everything was going to be okay. Life was going to be different, but everything was going to be okay.

To end this post, here are some memories from the day that I got The Call:

One Thousand Visitors

“MOM THERE ARE LIKE A HUNDRED PEOPLE AT MY APARTMENT RIGHT NOW, CAN’T TALK!”

“LIKE THIRTY OF US ARE GOING TO THE BASKETBALL GAME ITS GONNA BE SO FUN.”

“I WANT TO INVITE A THOUSAND PEOPLE TO MY GRADUATION PARTY!"

For years, my parents would say things like, “Alin, you can’t possibly even KNOW a thousand people! You exaggerate so much.”  I proved them wrong while I was hospitalized.

I had a lot of visitors when I was hospitalized. A lot.

My program director would come by multiple times a week with candy and gifts. He’d be patient with my parents, who would ask him both medical questions and questions about what was going to happen with residency. I’d wake up after long naps to other ER attendings in my room, just sitting there with my parents— sometimes crying, sometimes laughing, but always there for me.

“I can still be an ER doctor, right?” 

My attendings would reply, “Absolutely."

One of my ICU attendings would come by on her days off with People and In Touch magazines. “This will help you get your mind off of all of this.” She would take the time to ask me how I was *really* doing. “I feel fine! I really do!” And then she would stare at me until I said what I *really* wanted to say.

“Chest tubes hurt so much more than I ever thought they would,” I’d admit while looking away.

Priya, my favorite surgical resident, would come by with a bag full of anything she found at CVS Pharmacy on her way home from work every night. She’d be tired as hell after doing a liver resection or a laparotomy for hours. “Today, I got you a neck massager and these scrunchies." She’d lay in bed with me. I would have to force her off because the bed weight alarm would sometimes start beeping. “I don’t care,” she’d say. 

Every day, Matt would sneak in muffins and watermelon juice, sit down next to me, and work on his fellowship research with his laptop. Every day, I would tell him that I felt like a burden, that he should go back to fixing ACLs. Every day, he’d tell me to shut up. “You need to stop pushing people away. We all care about you a lot.” I’d roll my eyes and take a sip of my juice.

One of my attendings, known for his stoic demeanor and strict ways, once surprised us all by walking into my room. He stayed and chatted for a long time, in complete shock about my whole situation. When he was leaving, he almost made it to the door before he turned around and looked at me. “Alin, I want to tell you one thing. You have been so strong throughout all of this, it’s been unbelievable … and I just want to say that I would expect absolutely nothing less from one of the best residents I’ve worked with.” 

The whole room teared up. But I held my tears back. Instead, I said something along the lines of, “You’re just saying that because I’m dying!” 

He shook his head. He walked back to my bed to give me a hug. “You can’t die. We have to clear the waiting room on every shift when you’re back.” 

I teared up.

One of my close friends would always bring me breakfast bagels after being on 24-hour-call at the hospital. We had a rule: to not talk about my illness, and to treat me like he would on any other normal day. “When are you coming back to work to admit patients that probably don’t need to be admitted, you dork?” he’d ask. We’d laugh. We’d hug. I appreciated that.

My best friend from medical school flew in from sunny Miami and surprised me. She sat down next to me, and we joked about all of our old times. I sighed. “I miss coming home with you on Thanksgiving breaks."

“You’re gonna still come home with me on every Thanksgiving that you’re off, don’t worry,” she replied.

My girlfriends (aka my sisters) from Los Angeles, Linda and Ateena, even flew in. Ateena would help me with my daily walks around the ICU. She would hold onto my milrinone pump, and I would make jokes about how my life was always in her hands. Linda, who is one of my only friends not in the medical field, walked into the room and asked, “Wait so what's a Cardiac A-ha! diet?” 

My brother, cousins and relatives flew in and surprised me as well. “We cannot wait until you’re back in LA,” they’d tell me. My cousin and I would go down the list of everything we were going to do when I was back home on vacation some day.

A former attending of mine, someone I looked up to dearly, once came by with a David Sedaris book and a sketch pad (which really made my day). We laughed so much at my old “intern year” memories. She then showed me a part of her sternotomy scar from a valve replacement years ago. “You’re gonna be in the Zipper Club with me when you get out of here. Pretty cool, right?” 

My good friend, a cardiologist, would come by after working long hours (no matter what time it was). He knew that I was always going to ask him all of the super specific cardiology questions that my little brain had thought about all day. “Can we go over the Fick formula? Where exactly is this catheter sitting? How do they check wedge pressures?” One time, we drew out the human heart together on my iPad. I think he knew how nervous and anxious I really was deep inside. He watched me color in the ventricles. 

“So, as a cardiologist, not as my friend, but as a cardiologist … am I gonna make it out of here alive?”

“YES! Like no other! You’ll be back at work with a new heart! We’re gonna be going out so soon! First drink’s on you, though, because coming here after being a cardiologist at the hospital all day has really been taking a toll on me.” 

I wish I could tell you a story about each visitor who dropped by, but IT WOULD BE LIKE A THOUSAND PAGES OF READING BECAUSE I HAD SOOOOO MANY VISITORS EVERY SINGLE DAY!

Then came New Year’s Eve.

On this particular day, I went to the Cath lab for the umpteenth time only to come back to, literally, ten people in my room. We didn’t have any champagne, but ginger ale worked just as well. One of my friends got me Sour Patch Kids (a real treat when you’re in cardiogenic shock) and I ate the whole bag. "Cheers to 2018. Hope 2019 is a little better than this,” I said, dryly, with SPKs in one hand & a plastic cup of ginger ale in the other.

“It’s gonna be so much better. Hashtag, new year new heart!” One of them said. 

“Hashtag, can you guys go out and celebrate FOR me? All of you know that I LOVE this holiday.”

“We know that you love this holiday. That’s why we’re staying."

I fell asleep sometime around 10 or 11pm. I didn’t want to, but I did. Melatonin is a helluva drug.

Anyways, let me tell you the best thing ever right now. Let me tell you that every single person stayed in my room until midnight anyway. 

I thought it was kind of weird that they wanted to spend NYE in my hospital room.

Nonetheless…

Thank you.

My dad asked me the next morning, “You remember when you were younger, we’d always hate that you were exaggerating so much? You still always say things like ’There are forty people coming over so I have to get dinner ready!’”

“Yes."

“You were never exaggerating that much. There are a lot of people besides me and your mom who love you. You’re lucky."

Yep. And during that time in my life, I felt extra loved. My support system was actually the reason why I got through what I got through. My “enablers,” as I liked to call them. They were constantly asking the techs to get me blankets, to get me some tissues. My friend once told my nurse, “Her teeth are sensitive. Do you have any toothpaste for sensitive teeth?” (** face-palm ** SO embarrassing, I know.)

They would answer all of my medical questions when I wanted to talk about what was going on. But they would pretend like there was no invasive central line jammed into my little neck on the days that I didn’t want to talk about what was going on. 

They would hold the back of my way-too-large gown and walk around the unit with me. When I looked short of breath, they’d say that they’d want to sit down for a second (because they knew that I would never admit that I was short of breath). I knew what they were doing. 

They would bring me all of the sweets that I wanted. They’d pretend like it was theirs if my doctor or nurse walked in. Ugh, that Cardiac A-ha! diet…

They would tell me that I looked so good, even when my hemoglobin was 6 and I hadn’t waxed my eyebrows in three weeks. They would sit down and do manicures with me— even the guys who had never had their nails painted before. 

They would watch everything on TV with me on the days that I felt down and just didn’t feel like talking. They would pretend like they wanted to watch the 3rd run-through of early 1990s Forensic Files. “We’ll watch these when you’re discharged, too. I’m coming over with popcorn every night."

They would let me vent about how much my F&#(ing arterial line kept F*#$ing up. I rarely complained, but this was one major complaint of mine. “F*$& that line. It’s gonna be out in no time,” they’d say.

They would bring me flowers when they weren’t supposed to. In fact, they would bring me gifts, so many gifts, every day. I couldn’t wear shoes in the hospital, but one time, I told my friend that I badly wanted a pair of Doc Martens. “It’s gonna be the first thing I buy when I’m out of here,” I told him. He came by one day with a neatly wrapped shoebox— Doc Martens. “This is for when you get discharged. You’re gonna wear them on the day you’re out of here.”

“AHHHH! YES!!! Think I can wear these to the OR when I get my transplant?” I asked, as I checked for pitting edema before trying them on.

“You can do whatever the hell you want to do. You’re Alin.”

You see, my support system gave me a lot of hope. They’d give me hope about being out of the hospital “in no time.” We’d talk about being at work again, and how we’d be reminiscing about these terrible (but darkly humorous) times at future get-togethers. They’d tell me that, very soon, I was going to be in California and watching the sunset from my favorite secret spot in Venice Beach. And very soon, I was going to be a New Yorker living the life in the Lower East Side (my dream since I was practically five years old). According to them, I was going to handle all of this so well and so gracefully because "I was Alin” and nothing was going to stop me.

With their validating words and their incessant love for me during this incredibly insane experience, I became a little bit less scared and a little bit stronger each and every day.

I hated it at times, because I would feel like a burden. I would push them away. In fact, I got into arguments with my enablers on some days— I didn’t want them seeing me sick and barely able to walk. I didn’t want them being late to work because of me. But these crazies just kept coming back. 

So where I’m at right now in life (still smiling and still determined to kick ass)— this is all thanks to them. So, thank you— all of you— for giving me so much of your beautiful, genuine hope during the absolute worst days of my life.

And to my nurses who were taking care of me (if you’re reading this), I’m sorry for ALL OF THOSE THOUSANDS OF PEOPLE in and out of the unit every day for me.

To end this post, here are some photos of me and several of my enablers from when I was hospitalized.

The Transplant Talk

One morning, a medical intern came into my room to examine me, before morning rounds (which is when the team discusses each patient and the patient’s care plan for the day). He put his stethoscope on my chest and listened for what seemed like an hour, but was probably more like a minute. He then apologized. “My attending today, he’s going to ask me about murmurs and gallops and he’s very strict about physical exams.” I told him that I was tachycardic, so the murmur was probably difficult to appreciate. “Don’t feel bad, man. You did a great physical exam.” 

A few hours later, the Critical Care team walked into my room. The attending asked me a few questions and then proceeded to do The Very Strict Physical Exam. 

"She has an S3 gallop. Severe mitral regurgitation. You didn’t hear it? Take a better listen.”

I quickly interjected, and told the attending that many others also didn’t notice it, probably because of my heart rate being so high. The intern had done his best to take care of me all night, and he got a perfectly detailed history on me, too. Everybody chuckled. The intern then nervously put his stethoscope back on my chest while the rest of the team left the room. “Don’t feel defeated. I know exactly how hard it all is, especially after being here all night,” I told him. 

“Alin, you know exactly what we go through. And now you know what your patients go through. I don’t know how you’re handling this so well, but you’re an inspiration to all of us.”  

An inspiration!? I’m laying on my death bed with a barely functioning heart. I thought I’d become an inspiration in Emergency Medicine or Critical Care, after doing some groundbreaking research on early sepsis biomarkers or perhaps by saving hundreds of people after an unforeseen natural disaster… 

I said thank you, and he left the room. He came back with some cookies from the resident lounge, probably something their attending had brought them. That was nice— I guess because it made me feel like a resident again (even the oatmeal cookies the attendings bring us make a hell of a difference during those long shifts). It’s the little things…

A few days later, I had a new intern taking care of me, I told her that I had this S3 gallop from my severe mitral regurgitation, and to make sure to tell the attending that. She appreciated my help. 

At that point, my heart wasn’t getting any better. I kept requesting more echocardiograms to see what we could salvage from my heart. Nope, ejection fraction still terrible. Walls still thin. Heart still looks awful.

I knew what this meant. I needed a heart transplant. I knew that this was coming, but it was hard to tell my parents this.

The cardiologists came into my room one day and sat down (they’re ALL here and they’re SITTING DOWN— this was definitely going to be The Transplant Talk, I thought). I told them the situation. “Listen, I know I need a transplant. I know you’re going to talk to me about it. I want to get enlisted as soon as possible so I can get the heart and get out of here. But the hardest part is going to be explaining all of this to my family. Instead of talking to us together, can you please just explain all of this to my parents later in a separate room? They are going to have too many questions. And I just need to be alone after we talk. I’m really sorry.” 

I hope my doctors and nurses appreciated my directness (throughout my whole hospitalization, and also my whole life— not everybody appreciates this).

We talked about the heart transplant. My blood type was B+, luckily one of the more common blood types. I would be very high up on the list, considering my circumstances. If it didn’t happen quickly, they were ready to put an emergent balloon pump in (a mechanical device that would help my heart pump, along with the medications). There was no hope in trying home infusion medications— I was too sick to leave the hospital. Things got even more complicated. I was anemic, but couldn’t get a blood transfusion (since I was going to be enlisted for a transplant). My kidney function was slowly worsening. And, remember that whole “afterload” problem? It was getting worse, no matter which medications they tried. I took it all in, and made some dry jokes about how truly ironic this all was.

“Welp, the GOOD thing is that if I ever go to the ER with a heart transplant, I’ll be an obvious admission. My colleagues are going to love my door-to-admit times. And I’ll always get to be in the Intensive Care Unit. Probably even for a both bone fracture!”

I found that the interventional cardiologists & intensivists appreciated my sense of humor more than some of the other specialists.

Finally, the Transplant Team gave me some paperwork to sign, and asked me how I was feeling. 

“Can’t go home with a milrinone pump. Yes to heart transplant. I understand the risks and benefits. Let’s do this.” And I signed the papers with confidence. I felt good. I felt like this was a step forward in my recovery— one of the hardest steps, sure, but at least we had a plan. Plus, I wouldn’t be short of breath anymore.

I swear, if you could take one thing away from me, just know that it really is a blessing to be able to breathe.

Everybody was surprised at how I handled the news. I mean, I already knew it was going there, so maybe I had subconsciously prepared myself for The Transplant Talk. But also, I never saw it as bad news. I saw it as good news— another chance at life. Look at how far medicine has come— had this been decades ago, I would’ve died (like my grandfather did, somewhere in Bulgaria, from "a strange heart condition"). But here I was consenting to get another heart. I was given this genetically defected heart that almost killed me, and I still happily used the crap out of it, and now it was time for a better one. 

My parents, on the other hand, didn’t handle the news very well. I had tried to prepare them. They were in denial, especially my dad. They came into my room a couple of hours after I signed the papers (thank you, Care Team, for taking the time to explain everything to them for that long). They were both crying.

I’ve never been a parent, but if you are one, I suppose this is hard news to process. I suppose raising your daughter for 30 years— seeing her go through grade school, seeing her stubborn personality come out at an early age, seeing her through her several Spelling Bees, seeing her the first time she drove a car (terribly), and the first time she had her heart broken, seeing her tell you that some day, she’s going to grow up & save lives, seeing her grow into everything she said she’d become ("and more," according to them) …

And then, seeing her in the Intensive Care Unit in critical condition, hooked up to monitors that beeped too much and living on multiple medications that you had never heard of, with doctors talking about shock and heart failure and the fact that she needed an organ transplant, a critical surgical procedure that would take several hours, and that her whole life would change afterwards.

Again, I don’t know what it feels like to be a parent, but I suspect that this was harder for them than it was for me.

Was I a waste of life? Was I a waste of all the love, support, time, money, and resources they had given me for three decades? Was I wasting their time? Should I ask them to leave? This was a strange feeling, but it was something that I had asked myself so many times. I had always been a practical thinker, a realistic optimist, but also a pusher-awayer. That day, feeling like an 8-year-old asking her parents why the sky is blue, I asked them, “Do you feel like I’ve been a waste of your time and resources for the last 30 years?”

They were both shocked by the question.

“You have never and will never be a ‘waste’ for us. Look at how much joy you’ve brought us. How could you even think that?”

“And what if I die before they get me a new heart? Will I have been a waste of resources then?”

Again, they were quiet.

“If you had to die, you would’ve died already,” my mom pointed out.

Then my dad continued, “Having children comes with its struggles, but there’s nothing in the world that makes me happier than my children. Anything you do, everything you do, makes me so proud. Thirty years with you was a blessing, and there are still a hundred years to go,” said my dad.

I think I knew that, but I just needed some good ol’ parental validation. I felt vulnerable. I felt so useless in this stupid bed, and not in control of my stupid, ironic life. I needed them to be my strong, superhero parents who had seen me go through it all for the last 30 years. 

And they couldn’t have done it more gracefully.

We were silent for a few minutes. There was some crying, and some hugging. And then I closed my eyes.

Now, I don’t know if the following was attention-seeking behavior, but it always made me feel at ease: When I was a child, I used to pretend to be asleep on my couch sometimes. My mom would kiss me on my forehead, and then my dad would carry me to my bed and tuck me in. They’d both say that they loved me, and then they would shut my bedroom door and tiptoe out.

Now at age 30, in my hospital bed, I pretended to be asleep. My mom walked over to my bed, and tucked me in. I heard her ask my nurse for another blanket— “She might get cold,” she said. She placed a fresh, warm blanket at the foot of my bed. Then, my parents took turns kissing my forehead. They silently stood in my room for a moment, but it seemed like a long time. And then, they both said that they loved me, and quietly shut my sliding door on their way out. 

Thank you for continuing to read my posts. Until next time,

“As happens sometimes, a moment settled and hovered and remained for much more than a moment. And sound stopped and movement stopped for much, much more than a moment.”

— John Steinbeck, "Of Mice and Men"

Ventricular Tachycardia

(Disclaimer: I was transferred to different hospitals a few times during my month-long battle with heart failure — hospitals will remain unnamed. Some of these stories are not in chronological order.)

In order to see how my heart was doing, the team decided to slowly wean me off of milrinone, which was the medicine that was helping my heart pump. Unfortunately, with every slight wean, I would get sicker than before. My cardiac index would go all the way back down to “Almost Death” level, and I would have trouble breathing. 

When they increased my milrinone back up, I started having bouts of “ventricular tachycardia.” We tried to explain to my parents that this was an abnormal (and dangerous) heart rhythm.

“Is this like when they shock patients in movies?” Dad asked.

Without having to go into the whole “pulse vs. no pulse,” “stable vs. unstable” explanation, I just said, “Yes.”

“No. You don’t have that.”

So, there was that. 

Sometimes, throughout my hospitalization, I would get pacer pads placed on my chest before sleeping (the ones that they use in movies to shock patients). I didn’t want my parents seeing this, so I figured out a way to use two gowns to cover up the stickers on my chest. There’s a lot you start doing in these situations so that those around you don’t feel bad for you (you’ll see what I mean).

One night, I was started on intravenous amiodarone, a medication that would help temporarily suppress these abnormal rhythms, which were becoming more and more regular.

I woke up at 2am and began vomiting profusely— on my bed, on the floor, all over my beautiful hospital gown. I couldn’t find the call bell to call for help, and so I just started screaming for something to help with my vomiting. “Zofrannnnnnn!! Please!!!!” Luckily, someone heard my calls for Zofran. My wonderful nurse came in with a basin, and told me that she had to call the resident to put the order in. 

“Can you please make sure that she also orders an EKG! I don’t want to be on two QT prolonging meds at once! Tell her I have no pain! No chest pain either!” 

And then I went back to vomiting my chicken soup and chocolate pudding. The resident came to see me, listened to my lungs, sat with me for awhile until the Zofran was given. I asked her if she would call her parents in this situation and we talked about how difficult this all was for me— trying to balance being a doctor with being a patient, trying to balance how much I was hurting with how much I wanted to show that I was hurting. I also jokingly asked her if they needed help with saving any lives out there, and she jokingly replied, “We’ll come get you if anybody needs to be intubated.”

If you’re reading this some day, I appreciated that a lot. You were probably on hour 22 of 28 with no sleep, and this patient just kept throwing up and you had so many charts to sign. But you made me feel normal, and that order of Zofran was one of the best things that ever happened to me that week.

The vomiting subsided after the medicine was given. I asked my nurse if I could try to wash my hair in the shower. She said that I couldn’t because I had a Swan-Ganz catheter in my neck. It couldn’t get wet. 

After an aid helped me clean up with a new gown and fresh bed sheets, I decided that I was still going to wash my hair. First of all, it had been over 10 days since it had been washed. Second of all, there were chunks of dried vomit creeping out of the ends. I walked over to the bathroom with my portable monitor and IV pole in place, and told my heart to please not go into V-tach while I did the almost impossible. I took a comb, wet it, and ran it through my hair for a few minutes. I used hand soap to wash out anything I could. Better than nothing. My nurse walked in and asked if everything was okay by the sink. 

“Yeah just … washing my face!” Washing the hair on my head connected to my face. 

I went back to sleep for a few hours, and woke up to my family at my bedside. They said that I looked pale and asked if everything was okay. 

“I had that weird heart rhythm again so they started me on some other medicine. Made me throw up.” 

“WHY DIDN'T YOU CALL US!!” 

My mom grabbed her purse and took out a salt shaker. She proceeded to pour salt around my bed, right onto the hospital floor. “This is to ward off evil so that doesn’t happen again. You should’ve called us."

Mom, this is for vampires I think… what are you doing…

But I let her pour a little bit of salt on the floor. She then went on to tell me that I shouldn’t have washed my hair because I was going to catch a cold (don’t even ask about this myth I’ve been dealing with for 31 years). I nodded my head, and then noticed that my dad was quiet, almost in tears.

I told him not to worry about the rhythm, that it was all under control now. My aunt called my cell phone, and then she started crying because she had heard about what had happened that night. “I’m okay! Look! I’m talking! Really! Just a side effect of the drug,” I told her.

I found myself consoling those around me way more than the other way around. I was never looking for pity, but I had to tell quite a few loved ones to stop crying and that, although I wasn’t in the best shape health-wise, I was in good spirits and wouldn’t lose my positive attitude. I had to listen to people tell me things like, “Oh, you poor thing. You had your whole life ahead of you!” and “You’re such a good person and you always have the worst luck!” and “I am SO SORRY that YOU have to go through this!”

I had to take it all in. Some days were harder than others. Just a couple of those closest to me were the only ones who would hear me vent once in awhile, after my parents had left for the day. We’d laugh and cry and be angry and laugh again about the awkward things that were constantly being said to me. My dry humor would come out with comments like, “Sustained V-tach with an index of 1.3 and all the inotropes are maxed out, dudes. They may as well get Palliative WITH Transplant consulted at this point.”

Those same close friends, all with backgrounds in medicine, would sometimes get quiet after my snarky comments. Then I would tell them that I was okay, and that I would stop joking around so much.

So that’s the thing about life. These crazy things happen. You can only control your reactions and your actions around these experiences, be as strong as possible to keep fighting (but give into your weak moments too— it’s a part of the process), and accept the fact that you need to take these damn experiences and make something of them. In my opinion, there is no point in laying around and sulking all day. There is no point in letting others’ words get to you. It won’t change the situation.

Besides, I’ve always been good at consoling others.

To end this post, here’s a quote that goes with this theme— I've always been a fan of some principles of Stoicism. I don’t think Marcus Aurelius actually said this directly because he didn’t speak English, but it sums up Stoicism pretty well: