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.

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: